[CMLHope] Re: Husband came home yesterday & Rash
SuzyQ, I am so glad to hear that your husband is doing better! You are in my thoughts and prayers always! Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Suzieq" <[EMAIL PROTECTED]> > > Just thought I would let you all know that I brought my husband home > from the hospital yesterday morning. The doctor didn't see any reason > to keep him as he was doing so well on the blood thinner. He is still > having pain in the upper right chest area where one of the clots is > located..but other than that, he seems to be fine. Said he didn't > realize how run down he had become until he spent some time in the > hospital..said he got all rested up. (smile) I know this sure > scared us all when we found out what he had and the seriousness of > it. He has to go back each Wed. for next four weeks for blood work & > then see the doctor. He should have all tests back by then. > > For those with a "rash" while on GleevecI had this before > where it was real light on my upper chest & neck areakept > itching but not bad. It eventually went away. Well, about a week ago, > I happen to walk by the bathroom mirror and saw this red spot on the > left side of my neck. I thought, "what in the world is that"? Well, > it's still there and it itches off and on, so I just put some > Cortizone creme on it in the mornings. I just thought it was probably > from the Gleevec. It's funny...when I first saw it, I thought of > a "hickey" but knew better. (smile) > > Keep Looking Up, > Suzieq > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: CML & Tinnitus
Trey! Thank you thank you thank you!!! I have had a "heart beat" in my right ear now for almost four years It started the summer before I was dx'ed and I have asked EVERY Dr. I have seen about it and no one knew why it was happening! That first year it about drove me crazy anytime anything happened that raised my heart beat it got louder and louder and at times I had great difficulty hearing. I couldnt stand a lot of noise because it made it worse. Over the last three years it slowly went away almost completely (I guess as you said as my counts dropped) But since October when the doc left me off of gleevec for two months and my wbc went up (although slightly) but the CML increased by 6% it is back and as loud as ever. But now I know why, and now I know that as my disease regresses so will the heart beat. Thank you again. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Trey" <[EMAIL PROTECTED]> > > The "freight train in the ear" is not normally tinnitis (ringing), but > rather the sound of blood rushing through the vessels in the head where > they go near the ears. With leukemia at diagnosis, the blood is > thicker than normal with all the extra blood cells and platelets. This > causes a rushing sound in the ears, especially when sitting in a very > quiet spot. I had this issue, and it decreased over time as the blood > counts returned to normal. > > As for the BMB, I do not want to minimize that the BMB process is > unpleasant. But it is very necessary to properly assess the status of > the disease. I am surprised that a diagnosis was made without it (I > assume a FISH or PCR was done with blood). But a BMB is the proper way > to diagnose CML and to determine if there are other issues. I have had > two BMBs, and used only a local anethestic at the hip. I did not find > it that bad. The biggest issue was some pain several hours afterward > when sitting, but that went away fairly quickly. If sedation is > preferred, then there is no reason for concern about the process, since > he won't feel it at all. > > --Trey > Dx Oct 2005 > > On Jan 24, 8:37 pm, <[EMAIL PROTECTED]> wrote: > > My brother, Ron, was just dx with CML and is now taking Gleevec. He has > > some > strange symptioms: he says he has a freight train in each ear. Has anyone > else > had such a symptom? Also, he is afraid of having the bone marrow biopsy. I > have found a great doctor at H. Lee Moffitt Cancer Center in Tampa, Florida I > am > trying to get his to see. This institute was one of 15 such National Cancer > Institutes sites to run clinical trials on Gleevec. Any feedback is welcome. > > My brother is too sick to use his computer and my sister-in-law works > full-time > so I am the designated family researcher, etc. Thanks. DD > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Pain in my leg :)
Penny, I am behind on my email so everyone else has probably already answered you but I had the same thing off and on when I was first diagnosed (I know you were dx'ed four years ago) it happened all the time then was less fregeunt. It still happens from time to time. It is either the CML or the gleevec which I am not sure but I know it has to do with one of them! Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Penny" <[EMAIL PROTECTED]> > > Hi, > > I was diagnosed almost 4 years ago..had a few side > effects...nothing to > really complain about. The last 3 months I have been plagued by > sudden stabbing pains in the ankle and shinbone area...it stops as > suddenly > as it starts. The pain has me rolling around on the floor in tears > till it stops. > > I went to my GP and she said she thinks it is a sudden release of > hormones > in the bone causing itI asked for x-raysam waiting for the > results. > > Has anyone had anything like this? > > Thanks, > Penny > ps my Onc said it has nothing to do with my CML > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: social security
Hi Dov, Alot depends on how hard your doctor fights to get you approved! I had a Doctor who went to the mat and I was approved the first time also. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Dov" <[EMAIL PROTECTED]> > > I find it very troubling that people with the same condition can all > have such differing experiences applying for SSD. I applied this past > August and was approved 3 months later -- my first time. Sounds like > SS examiners need some serious training on what constitutes a > disability. I'm sorry that others are having, or have had, difficulty > in getting approved. > > Warm regards. > > David > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: I REALLY need to vent!-- Unsolicited Advice.....
Hi Barb and Judy, Yes I will call although I figure I have to wait till Tues with Monday being a holiday. Barb I am From Paducah Kentucky, the western end. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Barb in AZ" <[EMAIL PROTECTED]> > > Katy > I agree. CALL. KEEP vigilant about your fight for the drug. Where are > you from? I may have a way to find who the rep is in your area. > Don't give up. > > Barb in AZ > > > judy wrote: > > Katy. Call them and ask. It doesn't hurt to ask an explaine the > > situation. > If you don't then they can't help. Just talk to them and tell them the > situation. JUDY > > > > [EMAIL PROTECTED] wrote:Well thank you Barb and Judy but that is out, > I just went to the Novartis site and it said to qualify you couldnt have > private > or prescription coverage, Dale got me put back on his prescription card. > Gleevec > is still going to be way to expensive on it though at around $400 a month. I > will just have to keep checking around. But thank you. > > Hugs, > > Katy > > > > > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: I REALLY need to vent!-- Unsolicited Advice.....
Well thank you Barb and Judy but that is out, I just went to the Novartis site and it said to qualify you couldnt have private or prescription coverage, Dale got me put back on his prescription card. Gleevec is still going to be way to expensive on it though at around $400 a month. I will just have to keep checking around. But thank you. Hugs, Katy -- Original message -- From: "Barb in AZ" <[EMAIL PROTECTED]> > > Katy > So sorry you are having such a bad end of 2007. I don't really recall > reading where you asked for advice, but I would agree with Judy in > contacting Novartis for their program. There is a way to get gleevec > free. It is worth the investigation. The website is: > http://www.novartis.com. Go to the article on the right side about > providing gleevec to people in India as it goes on to say how to apply > for the program for it as well. That would take one of your stresses > off of you. If you have problems, let me know as I am in contact with a > Norvartis DM. > > I am not too familiar with any of the finanical and legal issues you > are having but I do know something about teenagers. I teach theology at > a Catholic High school and have worked with teens to some degree for > the past 25 years in the realm of faith issues. Katy, these kids go > through different stages of faith development and all of them, at some > point, question the faith that their parents pass on to them. It is a > natural occurance. John Westerhoff calls the three stages > Experienced, Affiliated, Searching and Owned. Teens between 13-18 are > in searching faith, asking all sorts of questions and trying to make > sense out of God. It is natural for them to 'claim' they do not beleive > what you believe. The best advice I could give is to be patient, and > keep your son engaged in converstation around his questions. Try hard > not to be forceful and walk with him in this searching phase. Help him > find his answers. They often go against organized religion of any kind > because they see it as 'one more institution that is telling them what > to do". I have proclaimed athiests, agnostic,and students who are > Muslim, Buddhist, Jewish and more in my classes. My biggest but most > successful challenge is to meet them where they are and bring them > along just a little bit on thier journey of beliefs. My guess is that > he is just showing some independence with you and that his foundation > is there and will carry him when he is ready. Just my 2 centseven > if you didn't ask. > > Good luck. And I will wish all good things for you in 2007. > Barb in AZ. > > [EMAIL PROTECTED] wrote: > > I know I havent been on here in a couple of weeks but I really need to > > vent and since what I say wont directly effect your lives you are the > > best candidates for me to pour my heart out to. I am so angry > > tonight, I really dont know exactly why, at least I cant put my finger > > on any one thing but I just am. > > You all know my story, three years ago I was diagnosed with CML, but > > it was okay because not only did I have my husbands insurance I had > > Medicaid, sooo, I could afford gleevec. Well about three or four months > > after I am diagnosed the state says your husband makes too much money > > ($2200 a month before tax) so we are taking your medicaid. We barely > > made it from paycheck to paycheck, so my Dr. has a suggestion, GET > > DIVORCED! Then they cant take it cause they cant count his income. So > > we did. It has driven me crazy for three and a half years!!! BUT as > > everyone said it was just a piece of paper and in the eyes of the Lord > > we were still married. We never seperated and never took off our rings. > > But without medicaid we could not afford even the 4 or 500 dollars a > > month for gleevec so it was get divorced and get your meds or stay > > married and die. ANYWAY so then you guys know that this > > summer or late summer I relapsed. Not too much just a little the doctor > > said and left me off of gleevec for about two and a half months because > > of the pain gleevec was causing. When he did a gene study again about a > > month ago low and behold I was MORE positive so he says start taking > > gleevec again so I did. This time around the nausea has been at least > > three or four times worse then the first time and of course the pain > > has returned in my arms and legs so I dred going to bed because it is > > worse at night. But I am taking it religiously, in the middle of all of > > this my middle son (16) informs me he is agnostic, I was raised in the > > south in the bible belt, teethed on a penticostal pew, and that was one > > of the worst things he could tell me or so I thought, now he says he is > > (and I really do not mean to offend anyone by my reaction it simply is > > not in line with my beliefs) He says he is Budhest (dont know exactly > > how to spell that)
[CMLHope] Re: Vision problems?
Hi Pat, Bad question I know but how old are you? I started having the same trouble about three years ago I was 43 (and on gleevec) and when I took my son to the eye dr. I asked them about it. They said that around the time you hit 40 you start having little problems like that sometimes numbers are blurry and small print hard to read but it is just part of aging. They said that the band in there that allows your eyes to focus and unfocus becomes kind of stiff and looses a little of its flexiblity. Now since I have been on gleevec it is worse, it got steadily worse until about a year ago my brother handed me a pair of his reading glasses (over the counter kind) when we were sitting at a Cracker Barrel because I was having a little bit of trouble with the menu, taking them all the time thinking to myself I dont need these, I put em on, OH MY WORD what a differance they made!!! I realized I was having more then a little trouble..lol.He gave them to me to keep and I use them when I am reading or doing the check book anything important. I have notice that now that I use them I actually need them because my eyes have begun to rely on them and my eyesight is worse from using them but that is okay. I can at least see. Try getting you some over the counter reading glasses they may just do the trick. I also get the watery sticky matted eyes at night and I get (gross word but only one that fits) gunk built up in the corners of my eyes during the day and that I believe is solely thanx to gleevec. I dont know if there is anything in particular that can be done short of getting off gleevec but that would be dangerous! Try some eye lubricant drops that may help to soothe and clean your eyes. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> > > Yes, this has been one of my issues. I do not wear glasses but I > experience blurred vision and trouble seeing small type such as numbers > in a phone book but it is not a constant thing.Today, I might could > read the numbers in the book and tomorrow I couldn't and...little > things like the numbers on my cell phone...sometimes I can't > distinguish if it is a 8 or a 0... like when I'm looking at an incoming > phone number. And I too have the puffy eyes, which is the only thing on > my body that retains fluid but I wake up to eyelids so swollen, I can't > open my eyes and they are glued together with this gluey matter. I > have been experiencing this since my diagnosis 2 years ago. I've > learned to live with it but it's scary...I think I will make an > appointment to have them checked. You should too to be on the safe > side. > Love, Peace, Hope & Prayers, Pat > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Eye Stuff
Bonnie, An ice cold rag would work just as well and not be hazardous to your eyes! Put a wet rag in the freezor for about ten minutes then place it across your eyes for five or ten minutes it may not take the swelling completely away because of water retention but it will take away part of it and soothe your eyes as well. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Tony Lanoue" <[EMAIL PROTECTED]> > > Hi Bonnie about the preparation H it was me that saw something about that in > our local news paper it was directly from the manufacture saying not to use > it around the eyes.however some people swear by it ! Tony. > - Original Message - > From: "Dov" <[EMAIL PROTECTED]> > To: "CMLHope" > Sent: Wednesday, January 03, 2007 10:41 PM > Subject: [CMLHope] Re: Eye Stuff > > > > > > Hi, Bonnie. Yes, teary eyes are a pretty common side effect of > > Gleevec. I get it every day, especially at night when I lie down to go > > to sleep -- it just starts flowing. I have no experience with > > Preparation H, but I seem to recall reading somewhere that you > > shouldn't put in around your eyes. (I don't mean to start a false > > rumor, but I do remember that from somewhere. Does that sound familiar > > to anyone else?) > > > > Warm regards. > > > > David > > > > > > > > > > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: No diagnosis, but looking for others' experiences...
Daniel I just read where you say you are a nursing student...do you drink Red Bull, Rockstar, Full Throttle, Monster, Amp or any of the energy drinks? If so that could be part of your problem. They are very addictive. My husband drinks them everyday and if he misses a day he gets a wicked headache and sick to his stomach. Or if you are taking any kind of energy pills that have ephedrine in them they completely take away your appetite. I worked midnights at a convenience store about 16 years ago and I used to take mini thins for energy, I lost my appetite for over a year and lost 113 pounds, I NOW know it was because of the ephedrine in them it complety takes away your appetite, you dont care of you eat even forget to. But as a Nursing student you should know how bad they are for you they can raise your B/P which also could account for some of your symptoms. Anyway just wondered. Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Daniel" <[EMAIL PROTECTED]> Thanks, Sandy! Several things I forgot to put in my original message: I can't and don't want to eat, just like your husband. Nothing at all is appetizing. As I told my doctors, I haven't been hungry in nearly a year. One doc suggested I go to a nutritionist! What?? I have had three episodes of passing out in the past year or so. One from drinking ONE drink (weird) and the other from cutting my finger (not a serious cut, just a cut). I'm in nursing school and I thought that this could be stress from school or working too hard as well. However, when I had a month break from school and I had less energy and couldn't get out of the house, that's when I knew something was wrong (that was last May...). I've been to a Gastroenterologist, Endocrinologist, Neurologist, Neurosurgeons, and had a battery of tests via my GP doc. I'm tired. I don't want to deal with it any more. Neither does my wife. We just want an answer... Thanks for your husband's story! Daniel > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: No diagnosis, but looking for others' experiences...
Before I was diagnosed I was eating everything in sight! I was starving all the time but steadily loosing a pound here and a pound there. I had night sweats but just assumed it was hormanal, I had headaches but I always had headaches anyway.I was tired all the time but I was tired when I was born...lol..my mom says I inherited chronic fatigue syndrome from her. What finally made me go to the ER was for a week I was really sick, and thought I had the flu, that is when they discovered my wbc was high and started watching it. Daniel your wbc is low I believe, and if you had CML (correct me if I am wrong everyone) your wbc would be high. Actually that is the only symptom that anything says you get with CML until you are further along in the process. They caught mine really early because I was due to have surgery the next week and the surgeon happened to be in the ER and saw my Bloodwork and started monitoring it. He is the one who sent me to an Onc. when after about six weeks my wb c didnt drop just kept going up. Hope and pray that you dont have CML Daniel, your symptoms could be caused by any number of things, an ulcer, stress ect.. let us know how things turn out. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: Sandy Johnson <[EMAIL PROTECTED]> Hi Daniel, I'm sorry you have been sick,and I really hope you do not have CML! My Husband is the one with CML.As far as symptoms,We had no Idea there was any thing wrong with him,until he passed out at work one day.Than the doctor was asking him all these questions.He had been really tired(thought it was just working to hard)Had lost about 30 pounds,not hungry,every thing tasted like cardboard,nose bleeds,sore muscles.He had just had oral surgery about three months before DX.That was a nightmare,he could not stop bleeding.The oral surgeon told him than he had a clotting problem,but being stubborn he thought it was nothing.That was when all the other stuff started.We just didn't put it all together that there was something major wrong till he passed out.His white count was 290,000 at DX.His RBC was real low.Well I'm not sure if this will help you any,but this is how Randy's story started.Wish you all the best,Sandy Daniel <[EMAIL PROTECTED]> wrote: Hey all, As I put in the subject, I have yet to be diagnosed with CML, but I seem to have quite a few of the signs and symptoms of it. One of the things that leads me to this unfortunate end is that I have been sick for over a year now and no doctor can find anything. What I am curious about is how my symptoms and story correlates with any of your stories, in terms of what you experienced/are experiencing. Here is a list of my symptoms: Nausea--a feeling of pressure on my stomach which causes me to be able to eat ~1/2 of what I normally could in one sitting. This feeling is similar to feelings I had after my 21st birthday (heavy drinking). Now, ANY alcohol will cause severe nausea for days on end. Headaches--severe and frequent. Night Sweats--These haven't happened recently, but occured along with my weight loss and appearance of severe symptoms. Unintended weight loss--I weigh 150 lbs and went down to 140 lbs in just a week or two without being sick or trying to loose the weight. Weakness and fatigue--I used to work out 4x/week and run and now there's no way I can do this any more. Muscle aches--my muscles "burn" after getting out of bed most mornings similar to the "burn" you feel during a workout. CBC--WBCs of 4000 (I know this is normal/close to normal levels), eosinophils a bit high (my doctor said they were a "9") and have been high for several months now. No information on the RBC or platelet levels. I have an appointment with a hematologist on this coming Monday. We'll see what he has to say. If you guys could, comment on what symptoms you had. I'm curious to see how things match up with mine. I'm just sick and tired of doctors and their run around. I'll post soon about my lengthy story... Thanks! Daniel __ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Bad news & Good news
Well I have bad news and good news, the bad news is what I already have said that as long as that house is in our names I dont qualify for medicaid, the good newsonce it is out of our names the income guidelines have changed and even though Dale and I are now remarried I will qualify for medicaid again! In the mean time Dale is getting me put on his insurance and prescription card. I still wont be able to afford gleevec and the copays on office visits but slowly but surely everything is working itself out so maybe something will come along until I qualify again. We will see. Guess for once I just have to trust in God, which is pretty hard for me seeing that I hate giving up controllol..but I will to him. Thank you all again for your support. Love you guys. Hugs, Katy p.s. has anyone heard from Terry?? -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: I'm sorry to spoil everyone's/Suziq n Barb especially...........
Dear Group, I just wanted to send a note and say thank you. You have been so kind and supportive. It's funny getting married is supposed to be such a happy time.*S* Since I got on my tirad the sun has been shining, it has been warm and things always look better in the light of day. Not to say all my problems just vanished, but slowly but surely they are balancing out. The night I wrote that I dont think I could have taken one more thing to go wrong. I love my children and my husband dearly, Pentecostal, baptist, or buhdist it doesnt matter because they are mine. All I can do is pray trust the Lord and keep pushing forward. Dale got me on his insurance and we are waiting for the cards to arrive. I havent reported to the state I am married yet though I tried today but the line was constantly busy. But I know soon as I do medicaid is gone and the struggle will intensify. I have been getting all my prescriptions filled so that when they take it I will have at least a month supply of e verything. But once again thank you for all your kind words of support. Suzieq and Barb you have been a real comfort. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: Rob <[EMAIL PROTECTED]> The Novartis Patient Assistance Program can help most patients who cannot otherwise obtain Gleevec. They do have an appeals process as well if you are initially turned down. Rob --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: I'm sorry to spoil everyone's "holiday" spirit but I REALLY need to vent!
Hi Judy, Thanx for the number I will try. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: judy <[EMAIL PROTECTED]> Hi Katy. Down in the dumps also todayand for the past few days. Hope things are going better. Did you contack Novartis and see if they would give you Gleevec for free? try they might suprise you. The phone number is 8668845906. Good luck and let me know how things turn out. "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote: I know I havent been on here in a couple of weeks but I really need to vent and since what I say wont directly effect your lives you are the best candidates for me to pour my heart out to. I am so angry tonight, I really dont know exactly why, at least I cant put my finger on any one thing but I just am. You all know my story, three years ago I was diagnosed with CML, but it was okay because not only did I have my husbands insurance I had Medicaid, sooo, I could afford gleevec. Well about three or four months after I am diagnosed the state says your husband makes too much money ($2200 a month before tax) so we are taking your medicaid. We barely made it from paycheck to paycheck, so my Dr. has a suggestion, GET DIVORCED! Then they cant take it cause they cant count his income. So we did. It has driven me crazy for three and a half years!!! BUT as everyone said it was just a piece of paper and in the eyes of the Lord we were still married. We never seperated and never took off our rings. But without medicaid we could not afford even the 4 or 500 dollars a month for gleevec so it was get divorced and get your meds or stay married and die. ANYWAY so then you guys know that this summer or late summer I relapsed. Not too much just a little the doctor said and left me off of gleevec for about two and a half months because of the pain gleevec was causing. When he did a gene study again about a month ago low and behold I was MORE positive so he says start taking gleevec again so I did. This time around the nausea has been at least three or four times worse then the first time and of course the pain has returned in my arms and legs so I dred going to bed because it is worse at night. But I am taking it religiously, in the middle of all of this my middle son (16) informs me he is agnostic, I was raised in the south in the bible belt, teethed on a penticostal pew, and that was one of the worst things he could tell me or so I thought, now he says he is (and I really do not mean to offend anyone by my reaction it simply is not in line with my beliefs) He says he is Budhest (dont know exactly how to spell that) okay my mom goes into a tail spin on that one. She believes that my whole family is hell bound anyway, a week before Thanksgiving we get served with foreclosure papers. (okay someone stop the stress train now I need a break) so we decide (the company kept giving us the run around till we were six months behind when we only missed one payment to begin with) we decide we arent gonna fight it! I find a house a really cute little house three blocks away, on Dec. 9 we move. The rent is 150 less then our house payment and the utilities should be lower due to good insulation and with my SSI and his paychecks we can do this. Well I call the SSI office a few days before Christmas to tell them I have moved so they say come down so I do and bring the foreclosure papers. Well guess what? They are just starting the foreclosure procedure which could take anywhere from 6 months to two years so the state looks at it like I have a $75000 asset I could just sell and so I am inelligible for SSI and Medicaid once again I get home on the verge of a nervous breakdown and get a call from our car loan people, they are gonna repossess our car because we didnt make a payment in November and the reason we didnt is because I applied for a defferrment because we had to come up with first months rent and deposit and utilitie deposits. I just went in and laid down next to Dale and just bawled. I said ya know what if all this is gonna happen anyway we might as well get remarried. He said but what about your medicine and I said well I will die married and happy!!! I said I dont know honey but maybe we will just have to trust God for once. So Thursday the ONLY good thing that has happened lately Dale and I got remarried!!! So now when I talk about my "husband" I wont feel like a hipocrit. What am I gonna do about gleevec ??? I dont really know right now, I have an appt. with my Onc. the 14th (after that I dont know about even affording a doctors visit) and I will fill him in and see what he says. I know that if he wants to he can keep me in sample
[CMLHope] I have another question?
I have a question (again) but this one is not related to CML (I dont think). I have been having a problem with my stomach now for about three years (as long as I have been dx'ed) and I have asked several docs about it including my gastrointerologist, they all looked very interested and focused as I describe this then they all have the same answer.I dont know!..g..but no one is trying to find out what or why so I am going to describe this to you guys and maybe one of you has had the same thing happen and knows what it is or why it happens.. I have this sensation in my upper abdomen like where your stomach would be, it is a strange twisting feeling like when you take a balloon (you know one of the long skinny ones you make animal shapes with) and you twist it round and round then let go and it pops back into shape. It doesnt exactly hurt but is extremely uncomfortable and takes my breath away, kinda like when someone punches you in the stomach. It will happen for a while pretty consistently then it goes away. Well it is back! and with a vengence!!! It is not just happening one time once in a while, it happens over and over for about 30 minutes to an hour. The other night I went to bed and my whole upper abdomen felt bruised inside, and I was even sore up in my chest. Tonight it was so hard a few minutes ago that I kinda groaned real loud (forced out with the air) and now it just feels kinda tight in there. One thing I wondered is, I have a sliding hiatal (sp?) hernia, and I thought maybe my stomach is sliding up in there and then popping back out? I just have no clue, and apparently my Dr.'s dont either. Do any of you? Or if you have a friend that is a Dr. could you ask him about it and get his opinion? I have confidence in a total of three docs scuse me four docs in this town and the rest are all quacks including my gastro. Some of ya'll are from bigger cities maybe you all might have an answer. Anyway I thought it was worth a try to ask you guys. Hope you dont mind. Doing better on the gleevec by the way, I have had two pretty terrific days which is simply amazing considering my track record with gleevec Hope you all have a Very Merry Christmas .especially you Terry Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Question?
Hi Suzieq, Well the Dr. did finally put me back on gleevec about five days ago and boy has it been (awful) everything I remember it to be!loloh the nausea, the headaches the wonderful roiling of your stomach as you rush to the white throne and sit just in time to explode!...anyway..guess you missed my post a few days ago, they did another gene study and it jumped from .069 (I believe that was it) to 6% so he called and in this deep quiet voice (not identifying himself so as to get maximum effect) he say's "Laura, do you have any gleevec?" I very warily reply " yess?" and then it hits me OH Hi Dr. ___...and then WHY??? He told me I had to start taking it again and told me I was up to 6%. He said we would deal with the pain if it came back but he wanted to get as much mileage out of it as he could before switching me to something new. So begins the gleevec rollercoaster. So far the pain in my arms and legs has been minimle this time and barea ble hopefully it will stay that way at least for a bit. The headache and nausea on the other hand have been worse then they ever were. The diarrhea just started today. Anyway so to let you know yes I am back on "something".lol...hope you have a very Merry Christmas! Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Suzieq" <[EMAIL PROTECTED]> > > I remember telling my husband when he asked me what was wrong one night > as we went to bed that it was hard to explain, but it was like my bones > hurt. That was about four to six months before I was diagnosed in early > 2004. The CML was beginning to manifest itself from what I understand > now & bone pain is definitly one of the symptoms of CML. I remember > that when my first BMB was done, the doc. was having a very hard time > extracting any marrow and said it was set up like concrete. > > I do hope they put you back on something soon, Katybug. > > Suzieq > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low serum phosphorus, elevated urinary calcium
David, My Onc. told me three years ago that having Leukemia makes us prone to kidney stones. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "David Bradley" <[EMAIL PROTECTED]> My bout with kidney stones has led to testing that indicated my serum phosphorus is low, and my urinary calcium is high. It is my understanding that Gleevec can lower serum phosphorus, and I'm thinking that low phosphorus can be associated with hypercalciuria. Is there any data to suggest that Gleevec patients have more kidney stones? David from Michigan --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: For EVERY Pakistani Muslim... amendments in hudood ordinance
Rob why are we getting spammed in this group all of a sudden?? -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Eminaeem" <[EMAIL PROTECTED]> > This is for EVERY Pakistani Muslim to know about the amendments in > hudood ordinance, so called "Adults' rights ordinance"... > > Please download and listen to the following... > > http://www.tanzeem.org/tanzeemeislami/2006-12-08.ra > > This is not an enforcement, but a humble request. Don't just listen to > the puppet politicians; this bill is against our religion, our faith, > Islam. And you know quality of faith in our politicians. > > Please listen and forward as much as you can. > > Also, subscribe to get weekly jummah biyanaat by subscribing at > http://www.tanzeem.org/ > > Jazakallah > > > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- Title: For EVERY Pakistani Muslim... amendments in hudood ordinance This is for EVERY Pakistani Muslim to know about the amendments in hudood ordinance, so called "Adults' rights ordinance"... Please download and listen to the following... http://www.tanzeem.org/tanzeemeislami/2006-12-08.ra This is not an enforcement, but a humble request. Don't just listen to the puppet politicians; this bill is against our religion, our faith, Islam. And you know quality of faith in our politicians. Please listen and forward as much as you can. Also, subscribe to get weekly jummah biyanaat by subscribing at http://www.tanzeem.org/ Jazakallah --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message ---
[CMLHope] Re: Question?/Back on Gleevec.........
Well Rob he did something, He called today and asked me if I had any Gleevec left and I said yes why? He said (he being my onc.) to start taking it again. They already got my bloodwork back and it jumped from .069 ( I believe that is what it was) to 6%. He said he knew it was under 1% and that it had jumped to 6. He told me to start taking 600mg again and that we would go from there. See if all the pain comes back again I guess and he said if it didnt pull my numbers back down then he would put me on Sprycell but he wanted to get as much mileage as he could out of gleevec. So here I go again, it has been about three months since I took it so I am s dreading it, the nausea, the diarrhea, bone aches ect... Well Wish me luck! Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: Rob <[EMAIL PROTECTED]> > It is not recommended to go for very long without some type of treatment. I > hope he will put you on one of the drugs shortly. > > Rob > > On 12/13/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: > > > > Well I had my first doctor's appt. yesterday since they told me I was > > positive and took me off of gleevec and did not put me on anything else! > > They drew another gene study yesterday to see if I was at the same level of > > positive or if it had increased. He said that if it had increased he was > > either gonna put me back on gleevec or on sprycell. I guess that if it is > > the same he is going to just leave me off of anything. I have been off of > > gleevec now for about three months and my question is this..I am > > having a LOT of bone pain in my right lower leg just below my knee, It has > > been so long since I was dx'ed that I dont remember, does CML cause bone > > pain? I know that gleevec does but since I have been off of it for so long I > > thought maybe the Leukemia was doing it. > > Hugs, > > Katy > > > > -- > > "The innocent and the beautiful have no enemy but time." > > -William Butler Yeats > > > > "Women and cats will do as they please, and men and dogs should relax and > > get used > > to the idea." > > -Robert A. Heinlein > > > > Katy > > DX: 10/03 > > #677 in Zero Club > > > > > > xanga.com/katybug45 > > > > > > > Need a quick answer? Get one in minutes from people who know. Ask your > > question > > > on Yahoo! Answers. > > > > > > > > > > > > > > > > > > > > > -- Forwarded message -- > > From: livia klescova <[EMAIL PROTECTED]> > > To: CMLHope@googlegroups.com > > Date: Tue, 5 Dec 2006 02:45:22 + > > Subject: [CMLHope] Re: Jonathan > > I remember that when I was diagnosed, I had a lot of pain in my joints,... > > my all body hurt. There were moments when I couldn't walk. I just took a > > bath and it helped me so much. My husband stayed with me, we were talking > > and I stayed in the bath at least for an hour. Then I went to bed and I felt > > so good. I was 26 when dg. Time is flying so fast... it is going to be two > > years in February... already. > > > > *Catherine Sierzan <[EMAIL PROTECTED]>* wrote: > > > > Hi Fran, > > > > I know this has nothing to do with CML but I have a grandson who is a > > diabetic and when he doesn't feel good he wants to go in the shower he is > > 9. Maybe this is a satisfying feeling for the boys. > > Thanks for posting I was wondering how Jonathan was doing. > > > > Take Care > > > > Kay wife to Ken > > > > -- > > Need a quick answer? Get one in minutes from people who know. Ask your > > question on Yahoo! > Answers<http://answers.yahoo.com/;_ylc=X3oDMTFvbGNhMGE3BF9TAzM5NjU0NTEwOARfcwMzO > TY1NDUxMDMEc2VjA21haWxfdGFnbGluZQRzbGsDbWFpbF90YWcx> > > . > > > > > > > > > > -- > Powered by NewOrleansEmail.Com http://neworleansemail.com > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to
[CMLHope] Re: Terry
Terry I am so glad you posted I have been pretty worried about you and I have missed you sooo much! I am glad that things are working out for you and Regina and hope and pray they go the way you want them too. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> > Hey David, > > Yeah I had to do allot of thinking and look at things with my eyes open for > the first time in a long time. Now we just have to the save the money so she > can move here, and then we will see what happens. I am pretty positive > things will go allot better than they did are first try at things. Time will > tell, but I am for once in a long time looking ahead with a lot of hope. > Take care, > > Terry > > > On 12/5/06, Dov <[EMAIL PROTECTED]> wrote: > > > > > > Hey there, Terry. I'm glad to hear you sounding positive and > > optimistic. It's great that you and Regina are working things out. It > > sounds like you've gained some insight and self-awareness, and that's > > always a good thing. As well as an appreciation of her viewpoint, too. > > Sounds like you have a good reason to be away, so your absence is > > excused. : ) Be well and drop in when you can. David (Dov) > > > > > > > > > > > > -- > Nothing's ever wrong..But nothing's ever right..Such a cruel contradiction! > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- Hey David, Yeah I had to do allot of thinking and look at things with my eyes open for the first time in a long time. Now we just have to the save the money so she can move here, and then we will see what happens. I am pretty positive things will go allot better than they did are first try at things. Time will tell, but I am for once in a long time looking ahead with a lot of hope. Take care, Terry On 12/5/06, Dov <[EMAIL PROTECTED]> wrote: Hey there, Terry. I'm glad to hear you sounding positive andoptimistic. It's great that you and Regina are working things out. It sounds like you've gained some insight and self-awareness, and that'salways a good thing. As well as an appreciation of her viewpoint, too.Sounds like you have a good reason to be away, so your absence is excused. : ) Be well and drop in when you can. David (Dov) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message ---
[CMLHope] Re: Question?
Well I had my first doctor's appt. yesterday since they told me I was positive and took me off of gleevec and did not put me on anything else! They drew another gene study yesterday to see if I was at the same level of positive or if it had increased. He said that if it had increased he was either gonna put me back on gleevec or on sprycell. I guess that if it is the same he is going to just leave me off of anything. I have been off of gleevec now for about three months and my question is this..I am having a LOT of bone pain in my right lower leg just below my knee, It has been so long since I was dx'ed that I dont remember, does CML cause bone pain? I know that gleevec does but since I have been off of it for so long I thought maybe the Leukemia was doing it. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 > Need a quick answer? Get one in minutes from people who know. Ask your > question > on Yahoo! Answers. > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- I remember that when I was diagnosed, I had a lot of pain in my joints,... my all body hurt. There were moments when I couldn't walk. I just took a bath and it helped me so much. My husband stayed with me, we were talking and I stayed in the bath at least for an hour. Then I went to bed and I felt so good. I was 26 when dg. Time is flying so fast... it is going to be two years in February... already. Catherine Sierzan <[EMAIL PROTECTED]> wrote: Hi Fran, I know this has nothing to do with CML but I have a grandson who is a diabetic and when he doesn't feel good he wants to go in the shower he is 9. Maybe this is a satisfying feeling for the boys. Thanks for posting I was wondering how Jonathan was doing. Take Care Kay wife to Ken Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message ---
[CMLHope] Re: update on Jonathan age 12
Dear Fran, I haven't been on here in several days because we have been moving, and I have 90 emails, s someone else may have already suggested this but just in case, I have had problems with my feet hurting also when I was on gleevec, in fact I developed a neuropathy in my left foot and toes (very painful, yet numb to touch) one of the things that helped me a LOT was to take a warm moist rag and wrap it around my foot then wrap a heating pad around it and sit with it for 30 minutes or so several times a day. It relieved the pain quite well that and Ibuprofen. Hope this helps and that Jon is doing better. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "franw/hope" <[EMAIL PROTECTED]> > > Hi Group, > For those that have followed our Jonathan, I thought I would share our > good news. > Doc has finally agreed to lower Jon's dosage of Gleevec from 600mg to > 400mg. > It has been 4 wks now and we are going back every 2 weeks for counts > and PCR. > Jon is holding. We have written back and forth a few times with Dr. > Druker concerning > Jon's growth and weight not increasing since his dx. His conclusion was > that Jon was on an extremely high dose and also that he has no > reportings that growth was this slow for other children. > Endocrinologist checks were great. Although the Endo does not feel > comfortable with any growth hormone supplications for Jon. > So it is a question for all the doc's why this is going on. Although > since we have lowered his dosage, I have knowtest his appetite slowly > increasing. > So with time...here's hoping.. and maybe even soon we can lower the > dosage again to what he is suppose to have for his height and weight. > He is 4'11 1/4 and weighs 70 lbs. > Jonathan's feet have been hurting though alot more than usual. Seems > like he's always wanting to soak them and let the water run over them > in the tub. The water is to hot I think.. so that is a sign that other > alternatives need to be tried. I would think it would be less > miserable for him on a lower dosage. But it seemed to had started a > week after the lower dosage was started. He's always had feet > problems...but not as often and not for so long of periods. > Getting complicated. Suggestions are great !! > Blessings > fran > Jonathan dx 10/2003 age 9 > 600mg until 11/06 > now 400 mg > PCR 13/100k > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Zicam .........DO NOT USE THIS COLD REMEDY
-- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Forwarded Message: -- From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: [EMAIL PROTECTED] Subject: (no subject) Date: Sat, 2 Dec 2006 20:54:02 + > > > Subject: Fw: Zicam - True > > > > > > > > This is true go to the website at the end.. > > > > > > > > > > Subject: Saturday > > > > > I need to warn you about a product on the market and hopefully you will pass > it on to as many people as possible. I felt like I was coming down with a > cold last Friday and because > > > > > I'm around sick family members so much I wanted possibly head it off. I used > Zicam, which is a gel nose spray which claims to keep a cold from becoming > "full blown." Immediately I > > > > > had an intense, horrible burning in my nasal/sinus passages. The skin on my > face hurt to touch and I had pain and burning so that it hurt to move my > head. My husband was here and kept asking if I wanted to go to the ER but > the > thought of getting in a car was overwhelming. My face was burning hot and my > nasal passages were so swollen that I couldn't breathe through my nose and I > could see the swelling when I looked in the mirror. It lasted for about > three > hours and it was Labor Day weekend and I couldn't see a Dr. until Tuesday. I > have seen two ENT specialists in the last two days because I have lost, > totally > lost all ability to taste or smell. They both told Me the same thing and > suggested an immediate course of action. This is Called "chemical trauma ' > and > most times is permanent. I'm going to have a CT Scan on Monday and am on a > high dose of the steroid, P rednisone for two weeks. If there is even a > thread > of the olfactory nerve left, it will help to rejuvenate what is left. I have > been on the Internet (just put in Zicam) and there are hundreds of people > who > have had this happen. I am so Angry and devastated and saddened right now > that I don't know how to get Through this. I cannot handle the thought of > never > tasting food again or trying A new recipe or smelling a Thanksgiving turkey. > Cooking has been an Absolute passion of mine for as long as I can remember > and at the moment I don't See the point of even putting dressing on a salad. > I > keep thinking that This cannot be happening to me. I suck on a lemon, bite > down on a clove of garlic, smell a bottle of ammonia, nail polish remover, > anything. I'm starting by telling people I love. PLEASE don't use Zicam, > tell > your > > > > > friends. > > > > > > > > > > _http://www.zicam-cold-eeze-lawyers.com/_ > (http://www.zicam-cold-eeze-lawyers.com/) > > > > > This was sent to me so I'm passing it on. > > > > > > > > > > > > > > Nikki > Always keep people in your life that charge your battery, not those who will > drain it. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- Subject: Fw: Zicam - True This is true go to the website at the end.. Subject: Saturday I need to warn you about a product on the market and hopefully you will pass it on to as many people as possible. I felt like I was coming down with a cold last Friday and because I'm around sick family members so much I wanted possibly head it off. I used Zicam, which is a gel nose spray which claims to keep a cold from becoming "full blown." Immediately I had an intense, horrible burning in my nasal/sinus passages. The skin on my face hurt to touch and I had pain and burning so that it hurt to move my head. My husband was here and kept asking if I wanted to go to the ER but the thought of getting in a car was overwhelming. My face was burning ho
[CMLHope] Re: Throat & Vocal Problems
Hi, SuziQ, I have been taking diazide and potassium long before I was dx'ed with CML therefore when I started on gleevec I never had the problems that most people have had with excessive edema. My eyes were still a little puffy but nothing like I expected to have. Now about a year ago I did start having some problems with my arms and upper legs swelling (which I thought was kinda wierd) so they doubled my dosage and it went away. Awhile back they put me on Lasix for a little bit but I put myself back on diazide and DCed the Lasix because it was like it sucked every bit of fluid out of my body and my mouth and eyes constantly felt like they had sand in them. A little update here on me, I have been sick now since around the 19th or so of October, pneumonia, then sore throat and bronchitis then ear infection.wel...after three differant antibiotics I still cannot hear out of my right ear as a matter of fact it had started popping like it was going to open up about a week ago and I could hear a little better then I woke up two days later and it was as bad if not worse then before! My throat is sore again, my lymphnodes in my neck front and back are sore as boils and my OTHER ear is starting to itch and ache, I feel so sick and so tired! I am so frustrated I have NEVER had anything hang on like this and it is getting me down emotionally as well as physically. The last few days I just feel like I want to crawl into a hole as my grandma used to say and pull it in behind me. On top of this I am trying to pack up the house as we are supposed to be moving the eighth of December. Dont know how we are gonna get it all done with me down physically and Dale is down too and he has to work on top of all of it. No vacation time left so his whole two days off he will be working like a mule then have to turn around and go right back to work..sorry, I didnt mean to have such a pity party but it does feel good to kinda write it down and get it out of my system. I have no one to talk to anymore, everyone calls me to "vent" and then I have no one myself because I feel like they have enough problems without hearing mine and Dale is so tore up over loosing the house and everything else that is going on that I cant lean on him right now. Again sorry but thanks for listening. Struggling to "keep looking up" *S* Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats "Women and cats will do as they please, and men and dogs should relax and get used to the idea." -Robert A. Heinlein Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Suzieq" <[EMAIL PROTECTED]> > > Hello to all: > Just wanted to update those I had talked to before about having a > problem with my throat & voice in the mornings. It was like I had > something in my throat & didn't have much of a voiceafter a few > hours, it would be fine. Well, Anjana suggested it might be water > retention around the vocal cords because she noticed her husband who's > been taking Gleevec for some time now had had the same problem for a > while. After taking a mild dosage of a generic form of Lasix the last > month, I don't seem to have that problem any longer. My doctor told > me it was up to me whether I wanted to take it daily or only when I > felt I needed it the most. I just went ahead and took it every day > along with the extra Potassium she prescribed & noticed that I don't > seem to have the swollen hands and feet as before. Still have a mild > swelling around the eyes some mornings & just deal with it. It's not > as bad as it was in the beginning, thank the Lord. I awoke some > mornings looking as though I had been in the ring with Rocky Balboa! > (smile) > > Just keep Looking Up, > Suzieq, Dx'ed 1/2004 > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] [CMLHope]
Just a little humor..I hope everyone has a wonderful Thanksgiving! http://hellocrazy.com/en/view.pl?card_id=290 http://hellocrazy.com/en/view.pl?card_id=288 -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 - > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] UPDATE......
Hey everybody, Just thought I would tell you that we finally found a place to move too. It is about 117 dollars cheaper then our house payment and the utilities should be about half what they are here so we should do okay. I dont understand how I feel though, I should be excited I guess, at least the nomad side of me! But I just feel wierd, kinda down, like I dont want to go but I dont want to stay, I dont know which way to turn. Dale said it's kinda like being in Limbo. I dont know, I just know that I have about two weeks to get us packed and ready to move, in between we have thanksgiving my sons bd, my bd and my daughters bdand I just dont know what to do. We are talking about just not even celebrating thanksgiving but that would depress my two youngest and wouldnt be fair to themanyway just thought I would tell you. Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hey, Terry
Thanx Annie, I was just kidding with him and I knew that he would take it that way but when I realized I had replied to the group I also knew that there are people with CML (not neccasarily on this group) that are quite touchy about joking about death, or even about poetry about it. I sent what I thought was a very sweet poem about dieing and saying what needed to be said before hand to a friend (not on this group) with CML along with other friends and family and she got very uspet with me, so I have been careful ever since of what I say and to whom. I'm glad it gave you a smile! Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Annie" <[EMAIL PROTECTED]> > > Hi Katy > My name is Annie (Mom of Steven who has cml) and I wanted to tell you > that I laughed when I read your post to Terry! I was in no way > offended by your joke. I took it as just that - the joke it was > intended to be :-) > Steven often says that people are way too cautious and sometimes too > easily offended by comments that are really not meant to offend at all. > Your joke is one of those examples - it was said with a smile and I > hope that everyone took it that way. We certainly did. > Love and light > Annie > livingwithcml.blogspot.com > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hey, Terry
I want to apologize for the joke in the post to Terry, I didnt realize until after I sent it that I was emailing him at the group addy, I thought I was replieing to his private email. I know some of you will think it was tacky but I knew he would understand and not take it personally. Again I apologize I wouldnt have said that in the group for anything. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] > Terry, > Thanx for letting us know you were alive..lol.(was that a joke > in > poor taste?) No problem on filling us in, we were just starting to worry. > Hope > things work out the way you want them too. > Hugs, > Katy > > -- > "The innocent and the beautiful have no enemy but time." > -William Butler Yeats > > Katy > DX: 10/03 > #677 in Zero Club > > > xanga.com/katybug45 > > -- Original message -- > From: "Terry Dailey" <[EMAIL PROTECTED]> > > Hi Katy and David, > > > > There is allot going on and I will fill you guys in more on Friday. Your > > gonna think I am nuts, but I will fill you in more when I have time. I am > > still here, just have allot of crap going on and Regina and I are trying to > > work on things. Thanks for your concern, I am not sure how things are going > > to work out, but we will see. I am still living at my mom's just visiting > > Regina for now. I will keep you posted, > > > > Love you all, > > > > Terry > > > > On 11/15/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: > > > > > > > > > I am worried about Terry to, I emailed him privately almost a week ago and > > > haven't heard from him yet. If anyone knows where he is at I hope they > > > will > > > let us know. > > > Katy > > > > > > -- > > > "The innocent and the beautiful have no enemy but time." > > > -William Butler Yeats > > > > > > Katy > > > DX: 10/03 > > > #677 in Zero Club > > > > > > > > > xanga.com/katybug45 > > > > > > -- Original message -- > > > From: "Dov" <[EMAIL PROTECTED]> > > > > > > > > Hey, Terry. It's been a while since you've posted. Just thinking of > > > > you and hoping all's well. David (Dov) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- --- Begin Message --- Hi Katy and David, There is allot going on and I will fill you guys in more on Friday. Your gonna think I am nuts, but I will fill you in more when I have time. I am still here, just have allot of crap going on and Regina and I are trying to work on things. Thanks for your concern, I am not sure how things are going to work out, but we will see. I am still living at my mom's just visiting Regina for now. I will keep you posted, Love you all, Terry On 11/15/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I am worried about Terry to, I emailed him privately almost a week ago and haven't heard from him yet. If anyone knows where he is at I hope they will let us know. Katy--"The innocent and the beautiful have no enemy but time."-William Butler YeatsKatyDX: 10/03#677 in Zero Clubxanga.com/katybug45 -- Original message --From: "Dov" <[EMAIL PROTECTED]>>> Hey, Terry. It's been a while since you've posted. Just thinking of > you and hoping all's well. David (Dov)>>> > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message --- --- End Message ---
[CMLHope] Re: Hey, Terry
Terry, Thanx for letting us know you were alive..lol.(was that a joke in poor taste?) No problem on filling us in, we were just starting to worry. Hope things work out the way you want them too. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> > Hi Katy and David, > > There is allot going on and I will fill you guys in more on Friday. Your > gonna think I am nuts, but I will fill you in more when I have time. I am > still here, just have allot of crap going on and Regina and I are trying to > work on things. Thanks for your concern, I am not sure how things are going > to work out, but we will see. I am still living at my mom's just visiting > Regina for now. I will keep you posted, > > Love you all, > > Terry > > On 11/15/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: > > > > > > I am worried about Terry to, I emailed him privately almost a week ago and > > haven't heard from him yet. If anyone knows where he is at I hope they will > > let us know. > > Katy > > > > -- > > "The innocent and the beautiful have no enemy but time." > > -William Butler Yeats > > > > Katy > > DX: 10/03 > > #677 in Zero Club > > > > > > xanga.com/katybug45 > > > > -- Original message -- > > From: "Dov" <[EMAIL PROTECTED]> > > > > > > Hey, Terry. It's been a while since you've posted. Just thinking of > > > you and hoping all's well. David (Dov) > > > > > > > > > > > > > > > > > > > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- Hi Katy and David, There is allot going on and I will fill you guys in more on Friday. Your gonna think I am nuts, but I will fill you in more when I have time. I am still here, just have allot of crap going on and Regina and I are trying to work on things. Thanks for your concern, I am not sure how things are going to work out, but we will see. I am still living at my mom's just visiting Regina for now. I will keep you posted, Love you all, Terry On 11/15/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I am worried about Terry to, I emailed him privately almost a week ago and haven't heard from him yet. If anyone knows where he is at I hope they will let us know. Katy--"The innocent and the beautiful have no enemy but time."-William Butler YeatsKatyDX: 10/03#677 in Zero Clubxanga.com/katybug45 -- Original message --From: "Dov" <[EMAIL PROTECTED]>>> Hey, Terry. It's been a while since you've posted. Just thinking of > you and hoping all's well. David (Dov)>>> > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message ---
[CMLHope] Re: Hey, Terry
I am worried about Terry to, I emailed him privately almost a week ago and haven't heard from him yet. If anyone knows where he is at I hope they will let us know. Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "Dov" <[EMAIL PROTECTED]> > > Hey, Terry. It's been a while since you've posted. Just thinking of > you and hoping all's well. David (Dov) > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: UPSET TO NO END!!!!!!!!
Dan, Once again I must say thank you. You have all been very kind. I guess you would have to know my son Corrie to understand why I went into such a tail spin. He is so intelligent, and that is not just a mothers prejudice, he has always scored high on everything. He was in gifted and talented in grade school and the academic team (they looked at him like he was their golden boy). He takes AP classes now, he is a Junior. He is majoring in (and going to in college) German, while taking French and had signed up to learn Japanese this year (they didnt have enough students sign up so canceled the class). He has always been shy and very retrospective, unfortunately like myself he over anaylizes everything so that it makes it hard to believe anything. Now that you have all been reminding me how teenagers where, I remember how I was never satisfied with the simple answers and I doubted at every turn, and still do from time to time, not God's existence (not anymore anyway) but so many othe r things and I did go thru a time when I doubted him. I am that way about people too, I read every expression or sentence and look for hidden meanings ( I do it unconciously) I read body language, and Corrie is the exact same way. You know he didnt talk till he was two but he didnt need to, all he had to do was look at me in a certain way and I knew exactly what he wanted. He is so diverse in his opinions and absorbs everything around him. He was so laid back and happy as a boy, but as a man he has become dark and brooding, not in an angry way but meloncholy. I dont know, I didnt mean to go on and on I just meant to say.thank you. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: "skink1100" <[EMAIL PROTECTED]> > > Katy, > > A few comments on your concerns...hopefully to make you feel a little > better. I was raised as a christian and went through the same > "agnostic" period as your son. ...and lived a pretty wild and woolly > life for quite a while...but as I matured I came back and today believe > that the Bible is true and the word of God. This is from someone who > once taught evolutionary ecology and is a scientist. I have no doubts > at all at this point, and with God's Grace was at last born again. > > It is hard as a parent...but you have to pray and leave it in God's > hands and assume all the early teaching will stick. Your son is still > young...just continue to be a good example...as hard as that is for all > of us...and again say your prayers...all will be well I am sure. > > I think it is natural to question at this age...but in my case deep > down I knew there was a God...I suspect he is going through the same > period. You have done well in giving him the foundation...it will > stick...just be patient and pray. I will too. > > Dan... > with CML 2 yrs. > > > On Nov 11, 9:28 pm, [EMAIL PROTECTED] wrote: > > I am s sorry to come on here with this but I know we talk about more > > then > just CML in this group and when you need to vent or talk it always seem > welcome. > Well I need to vent or talk I am not sure which.. > > I know there are alot of people on this group and that some may not be of > > the > christian faith so I hope nothing I am about to say offends you because that > is > not my intention. I know what you believe about a higher power is as > important > to you as to me so maybe you will understand why I am so upset. > >I am by raising a died n the wool Penticostal. I do not neccasarily > > (sp?) > live all the standards that my faith believes in though I have convictions > about > most of them, I am just rather rebellious and tend to ignore the ones that I > am > not completley sure of. > > My 16 year old son just informed me that he is NOT a christian! He is > agnostic. He broke my heart, to put it quite simply. I have raised he and his > brother and sister in church for most of their lives ( It wasnt until I was > dx > that I have been out more then in) From the time Corrie was three he was in > church EVERY time the doors were open. I went (and still do when I go) to > what I > call the "green berets" of the Penticostal movement, I go to a Holiness > Church. > He has heard the story of Christ all his life. At the age of five he told my > pastor he wanted to be babtised, (he has always been a very serious child and > extremely smart and above his age in understanding) when my preacher asked > him > why (seeing if he understood why you do it) he looked up at my preacher and > said > &quo
[CMLHope] Re: Couple of comments on posts
When I went to the Dr. Today he took me off of Augmentin and put me on ear drops called Ciprodex. He also told me the stuff in my mouth, (I think I mentioned it) blisters and my tongue feels like I am chewing on shards of glass when I eat, is Lichen Planus, great! Another "chronic" disease (she says sneakin up behind "K" to steal her crown, so she can become queen!lol) Two years ago and a year after being dx'ed my onc. treated me for what he said was a yeast infection in my mouth, at that time I had noticed the the skin on the inside of my cheeks had a white lacy look to them with "striations" or horizontal little lines, that is apparently when it began. You CAN get a yeast infection along with this but apparently that would be bad because it can turn into a candida albicans super infection. WHATEVER all that means, I just know my ear still hurts and is deaf, my tongue and gums hurt, my head hurts and in general I just feel bad. Droopy Hugs, Katy p.s... Ora I havent had an ear infection since 1969! And it doesnt feel like there is any fluid in my ear. It just feels like pressure and like I have an ear plug in everything is muffled except for this little high pitched noise that has been making me insane for ten days -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: Ora <[EMAIL PROTECTED]> > My husband's Oncologist gives us paperwork for his blood work at the time of > a > visit - but we save it and have the blood work done 7-10 days before his > appointments. We changed that when we changed doctors and it works great to > have the latest and greatest blood work to talk about at our visits. In > fact, > the last straw with the previous Oncologist was when he refused to order > blood > work so we could talk about current information at the time of the > appointment. > > He also has had blurred vision problems since starting on the Gleevec, but > it > seems to come and go - so glasses aren't really the answer for him - but he > has > reverted to using reading glasses a lot - but that could be an age thing - > cause > I use them A LOT too - and I am not on Gleevec. > > Ear/bronchial infections I know well from years of fighting it and now I > have > permanent hearing loss in one ear from it. Augmenten never did it for me. > When > I let an ear or bronchial infection get bad, it takes several rounds of > antibiotic and/or steroids to get it under control. Over the years, I have > learned that if I start taking an expectorant at the first signs of my ear > filling up with liquid, I can avoid a doctor all together. For a couple of > years my family doctor gave me an open ended prescription for as needed. > Then > when the script ran out I found the expectorant is normally found in some > cough > syrups, but just recently in the last few years they have come out with an > OTC > expectorant in pill form that does not have the extra medication to treat a > cough. Kirkland (Costco brand) has it and it is called Mucus Relief - the > name > brand stuff is expensive and I don't remember the name. Might check with > your > doctor to make sure it doesn't affect the Gleevec or > other medications, but it is a wonderful answer for me. I do know I can > throw > off sickness a lot easier than Scott can. My understanding is that his > immune > system isn't as strong as someone without CML, but I don't know how I got > this > understanding. We are just germ careful and get the flu shot every year. > > Ora > wife of Scott > diagnosed 06/00, Gleevec 06/01, off Gleevec 10/06 due to CHF > > > > > - > Sponsored Link > > Get an Online or Campus degree - Associate's, Bachelor's, or Master's - in > less > than one year. > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- My husband's Oncologist gives us paperwork for his blood work at the time of a visit - but we save it and have the blood work done 7-10 days before his appointments. We changed that when we changed docto
[CMLHope] Got my finger stuck today......
Hello everyone, I went to the ENT about my ear today and when I was finished I stopped by my Onc.'s office which is on the same floor and got my favortie finger sticker (lol) Shannon to stick me. Ten days ago at the ER my white count was 7.2 I think. I know it was 7. Here is what it was today: WBC 11.7 LYMP 4.0 Gran 7.0 Those were the only things elevated. Shannon said it was probably because of my ear, but I dont know, I have had worse infections then that and my WBC wasnt elevated. Anyway there it is. Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- --- Begin Message --- Does someone out there need some Gleevec? I am now on Sprycel and have a lot left over from when I stopped taking the Gleevec. By rights we are not allowed to give prescription drugs to anyone but there has to be a way that we can donate to someone who really needs it. Any thoughts out there? Pat F --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message --- --- End Message ---
[CMLHope] Re: gleevec
I have some too, I am not sure how much but I know I have quite a few and some capsules of gleevec too that my doc gave me as samples a few months ago when we were having trouble getting my prescrition refilled and I was out. But, hate to be a bummer here, but isnt it illegal to send drugs thru the mail? How would we get them to her? Hugs, Katy -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats Katy DX: 10/03 #677 in Zero Club xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] > Does someone out there need some Gleevec? I am now on Sprycel and have a > lot left over from when I stopped taking the Gleevec. By rights we are not > allowed to give prescription drugs to anyone but there has to be a way that > we > can donate to someone who really needs it. Any thoughts out there? > Pat F > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- Begin Message --- Does someone out there need some Gleevec? I am now on Sprycel and have a lot left over from when I stopped taking the Gleevec. By rights we are not allowed to give prescription drugs to anyone but there has to be a way that we can donate to someone who really needs it. Any thoughts out there? Pat F --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --- End Message ---
[CMLHope] Re: win cash for free
Who is this that keeps putting this stuff on the group, isnt this spam? -- "The innocent and the beautiful have no enemy but time." -William Butler Yeats DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "pratush" <[EMAIL PROTECTED]> > > Win cash Rs.5,000. Guaranteed real players, real winners. Free > registration! > http://surl.in/HLDDT238206SVRAKSX > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: A Few Questions...
OMW!!! Did I say "dont" call your doctor??? No way YESSS call them. I cannot imagine how I typed dont when I was thinking if that was me I would have called them three weeks ago I am so sorry for the typo! Hugs, Katy -- DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "Suzieq" <[EMAIL PROTECTED]> > > Hi Chrissy: I hope Katy meant to say DO call them in her reply which I > believe she did. I had my last check up & labs done on Oct. 10th and > so far, I've not received any report. Most of the time I wouldn't > unless I requested them to send me a copy. They would just wait until > my next check up four months later to let me know what the reports > said. Now, I'm sure that if there were any type of changes in the labs > that showed that the Gleevec was beginning to fail, they would be on > the phone immediately asking me to come back in. But, after joining > this group and learning so much about what the results show, I now ask > for a copy of all lab work sent to me. I guess I want to see it for > myself so that I can ask questions the next check-up. Sooo, since > I've not received anything from them yet, I will be calling and asking > that the mail me out copies. I always have the CBC copy from the day I > go in, but I want to see the genetics test results as well. Thanks, > > Suzieq > Dx'ed Jan. 2004 > Gleevec Feb.2004 > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: No immune compromise if PCRU
I have noticed the same thing Lori, things that I used to get over in hours or a day or two now seems to take days or weeks to go away. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "lbailes" <[EMAIL PROTECTED]> > > My hem/onc also told me that I would be worse off than other people who > caught the same "bug" as me if I got sick. > > In fact, last week my hubby and I were both sick. He was down and out > for 1 day from work and then felt perfectly fine. I was out for 3 and > had to force myself to go in the 4th day. > > Lori > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: A Few Questions...
Chrissy I always get my results on a FISH in 7-10 days. Your Dr. should already have your results. Are you waiting for them to call you? If so DONT call them! Because Dr.'s office's are often very busy and sometimes they forget. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "Chrissy" <[EMAIL PROTECTED]> > > Group, > > If a molecular study (FISH) takes a long time to come back from the > lab, does that mean there's a problem with it? I'm getting worried as > it's been almost 3 months for my last one, taken at the end of August > 06. > > Also, I've heard about the 18-month marker for CMLers on Gleevec (that > it can take 18 months to achieve molecular remission). I have been on > Gleevec since April 05 (I was increased from 400mg to 600mg in June > 05), but no cytogenetic response was seen until I was put on 800mg in > January 06. Will they start counting the "18 months" from when I > started taking my current dosage in January? Or is it still from April > 05? Because if so, that means I don' t think I quite 'made it,' even > though I'm doing better now (in June, my study came the quote, > "excellent evolution," and in August, I was showing a Ph of 5.7, down > even more). Can they keep someone on Gleevec even if they are having a > suboptimal response? Am I even having a suboptimal response? > > One more thing...can your Ph levels flucuate, even a little, during > treatment? I've had a stressful summer with moving to a new palce and > everything. I'm a creature of habit, not one of change, and I hope > this hasn't comprimised my recovery. If my Ph levels do go up, can > they come back down? What I'm trying to ask is if I get undesirable > results from this most recent study, is there a chance I can still > continue on my treatment successfully? > > I'm sorry about bombarding you with questions, I'm just going through a > bit of a strange time. I've been feeling diffe rently about things, and > I'm ready for some answers to some of my hard questions. Even if > things don't go as I think they 'should,' I realize there are other > treatment options out there. It's time I quit stressing and start > trying to take control of this thing, something I have always been too > scared to do. > > I'd appreciate any feedback. Anything at all. > > Sincerely, Chrissy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: UPSET TO NO END!!!!!!!!
Thank you Joan I guess I knew that was what it meant but just forgot and all I could focus on was his statements about the bible not be inspired of God and that he didnt believe Christ was the Son of God. The way you put it "uncertain" kind of takes the sting out of it, but, it still worries me. Thank you and everyone else for your prayers and know that you are in mine. Hugs, katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "Joan" <[EMAIL PROTECTED]> > > I hope you can remember that agnostic means not certain. Maybe he just > needs to evaluate his beliefs. Don't worry too much. It is my belief > that there is more than one way to reach God. It isn't that unusual > for teens to want to check out other beliefs. Keep praying. > Joan > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: No immune compromise if PCRU
THAT would explain it! --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "Christine Finsand" <[EMAIL PROTECTED]> Not to add fuel, here, however I believe that there are some recent studies that have been mentioned to me regarding the suppression of the immune system as a result of Gleevec. Anyone know more on this?? chris in minn - Original Message - From: mburwen To: CMLHope Sent: Saturday, November 11, 2006 6:50 PM Subject: [CMLHope] No immune compromise if PCRU I recently went through a bout of acute viral gastroenteritis. The ERDr. that treated me for the condition told me that, because I had CML,and even if it was in remission, my immune system was compromised, andthat I was more susceptible to viral and bacterial attacks than theaverage person.I discussed this with my hemo/onc, normally a mild-mannered person, andhe went through the roof. He insists that, as long as the CML is inremission (I am PCRU), there is no degradation of the immune system.He was quite angry at what he considers to be the stupidity of asizable segment of the medical profession.Since my Dr. and his team are recognized experts in the immune systembusiness, I tend to accept what he says. Anyone have any furthercomment on this subject?Mike Burwen --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: UPSET TO NO END!!!!!!!!
Dear Adrienne, You and Dov (I love that name) have been so kind and understanding, you just don't know how much I appreciate that nor how much I needed it. I have no one else I could talk to about it. My mom would have a heart attack not to mention my son asked me not to tell her so he would'nt be subject to a lecture every time she calls..lolbut what you two have said has been not just understanding but comforting. My goodness I almost think Dov is a preacher or (because of the Jewish reference to his name) a Rabbi.*s* anyway I have done all I can about this situation, I prayed, and put it in the hands of the Master. Thank you both. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "artist934" <[EMAIL PROTECTED]> > > Dear Katy, > > I agree completely with what Dave has so eloquently said. As the > mother of a 20-year old and an 18-year old, I know that the teen years > can be challenging. I won't repeat what Dave has said but I want to > encourage you not to be so hard on yourself. You haven't failed your > son. You haven't failed your God. You have raised your son as best > you know how to believe what you believe. Parents's beliefs are > powerful influences on children and even if your son becomes an > agnostic for the rest of his life, your beliefs have shaped who he is > now and will become for the better. It is not for us as parents to > determine what our children's faith, if any, will be. We can provide > instruction and exposure but ultimately faith is a personal matter > between one person and God. Have faith in your God that your son will > find the path that is right for him and that He, God, will understand > and accept your son's choice. You have way too much on your platter > right now as it is. As upsetting as it is to hear your son say that he > is an agnostic, he will be okay. > > Warm Regards, > > Adrienne > > On Nov 11, 9:28 pm, [EMAIL PROTECTED] wrote: > > I am s sorry to come on here with this but I know we talk about more then > just CML in this group and when you need to vent or talk it always seem welcome. > Well I need to vent or talk I am not sure which.. > > I know there are alot of people on this group and that some may not be of the > christian faith so I hope nothing I am about to say offends you because that is > not my intention. I know what you believe about a higher power is as important > to you as to me so maybe you will understand why I am so upset. > > I am by raising a died n the wool Penticostal. I do not neccasarily (sp?) > live all the standards that my faith believes in though I have convictions about > most of them, I am just rather rebellious and tend to ignore the ones that I am > not completley sure of. > > My 16 year old son just informed me that he is NOT a christian! He is > agnostic. He broke my heart, to put it quite simply. I have raised he and his > brother and sister in church for most of their lives ( It wasnt until I was dx > that I have been out more then in) From the time Corrie was three he was in > church EVERY time the doors were open. I went (and still do when I go) to what I > call the "green berets" of the Penticostal movement, I go to a Holiness Church. > He has heard the s tory of Christ all his life. At the age of five he told my > pastor he wanted to be babtised, (he has always been a very serious child and > extremely smart and above his age in understanding) when my preacher asked him > why (seeing if he understood why you do it) he looked up at my preacher and said > "I have a movie at home and in it Jesus gets babtised, if He did I want to" my > preacher grinned real big looked at me and said "good enough for me!" He was > babtised later that day in the river at Carrsville Kentuc > > ky. > > It breaks my heart to hear him say that he is not "sure" Jesus is the Son > of God. I just wanted to start crying. He does not believe anymore that the > bible is the inspired word of God. I thought oh my Lord what have I done. I > havent taken him to church like I "should" have for too many years. I know he > will be required of me in heaven. I feel sooo lost right no w. And right before I > started writing to you guys I hung my head and thought Dear Jesus just go ahead > and take me now, I dont want to be cured, I dont want to live to see this > happening. > > The ones of you that are of christian belief on this group will > understand my frustration and grief, the ones who are agnostic, a
[CMLHope] Re: UPSET TO NO END!!!!!!!!
Dov, First you make me feel betterthen ya make me laugh!..lol.did I say a little "rebellious"? (never that) Dave I have always tried to respect what other people believe even if it didnt jive (for lack of a better word at the moment) with what I believed. I have not that I know of tried to push my beliefs on others, though if asked I have answered questions about what I believe and even though at that time I may not "be in church" I still become quite passionate and excited when talking about what I believe in. My children more or less "teethed on a pugh" (sorry southern saying are just ingrained) as did I. But unlike my son, I never questioned how I was raised religiously. I resented it sometimes when my friends could wear pants, or jewlery, or go to a ball game or dance and I couldnt, but beyond resentment I still believed. And I think God forgave me that transgression considering my age. I just dont understand how "my" son who was raised in the same church (not literally) I was could drift so far from my belief's. He got really mad at me tonight when he told me that, because I got a "sad" look on my face. I told him .. Look I am your mom, and when you tell me something like that you cannot expect me to not be worried at the very least. He came in the kitchen later and said something along the lines of even if he didnt believe the way I did he would still always love me (which I felt was more of a "will you still love me" kinda thing) and wouldnt be angry if I didnt agree with him. I told him, honey what ever you believe I will ALWAYS love you, you are my son, my baby, and you will always be welcome in my home. And yet still I feel like I have failed. It's just this has come on the heels of other major setbacks for me and us as a family, I havent said anything to anyone on here but, not only have I relapsed (which I have told ya'll bout) but we are loosing our house. We fought for the last seven years to be able to buy a home, finally a year ago we got a loan, and a year later we are in foreclosure. We got served papers two days ago and yesterday I went out and already found us a place to move (rent) so financially, physically, mentally, emotionally, I am just about strapped. Now all I need is for my 14 year old daughter to come tell me something of the like and I think I will just loose it .*S* but only for a moment. I have said even before I had CML, I am a survivor, just give me a couple hours to be overwhelmed, and to cry and I will come out swingin! You just have to give me a day. Anyway Dov thank you so much for your reply, I think at this moment it is ex actly what I needed to hear! Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "Dov" <[EMAIL PROTECTED]> > > One more thing, Katy. I note that you refer to yourself as "rather > rebellious." What a coincidence -- apparently the acorn didn't fall > far from the tree. : ) Chin up! David > > > --~--~-~--~~~---~--~~ > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > [EMAIL PROTECTED] > For more options, visit this group at http://groups.google.com/group/CMLHope > -~--~ ~~~--~~--~--~--- > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] UPSET TO NO END!!!!!!!!
I am s sorry to come on here with this but I know we talk about more then just CML in this group and when you need to vent or talk it always seem welcome. Well I need to vent or talk I am not sure which.. I know there are alot of people on this group and that some may not be of the christian faith so I hope nothing I am about to say offends you because that is not my intention. I know what you believe about a higher power is as important to you as to me so maybe you will understand why I am so upset. I am by raising a died n the wool Penticostal. I do not neccasarily (sp?) live all the standards that my faith believes in though I have convictions about most of them, I am just rather rebellious and tend to ignore the ones that I am not completley sure of. My 16 year old son just informed me that he is NOT a christian! He is agnostic. He broke my heart, to put it quite simply. I have raised he and his brother and sister in church for most of their lives ( It wasnt until I was dx that I have been out more then in) From the time Corrie was three he was in church EVERY time the doors were open. I went (and still do when I go) to what I call the "green berets" of the Penticostal movement, I go to a Holiness Church. He has heard the story of Christ all his life. At the age of five he told my pastor he wanted to be babtised, (he has always been a very serious child and extremely smart and above his age in understanding) when my preacher asked him why (seeing if he understood why you do it) he looked up at my preacher and said "I have a movie at home and in it Jesus gets babtised, if He did I want to" my preacher grinned real big looked at me and said "good enough for me!" He was babtised later that day in the river at Carrsville Kentucky. It breaks my heart to hear him say that he is not "sure" Jesus is the Son of God. I just wanted to start crying. He does not believe anymore that the bible is the inspired word of God. I thought oh my Lord what have I done. I havent taken him to church like I "should" have for too many years. I know he will be required of me in heaven. I feel sooo lost right now. And right before I started writing to you guys I hung my head and thought Dear Jesus just go ahead and take me now, I dont want to be cured, I dont want to live to see this happening. The ones of you that are of christian belief on this group will understand my frustration and grief, the ones who are agnostic, atheist or of some religion that does not recognize Jesus Christ will probably think I am stupid and that is okay but the rest of you will understand and that is what I need at this moment, an understanding ear. I hope I havent offended or infuriated anyone and thank you for listening. Sincerely, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: No immune compromise if PCRU
Hi Mike, My Onc. said the same thing your ER doc said. He told me that he did NOT want me getting sick. That I was more susceptible and that if I did get sick (even in remission) and started running a fever of 100.5 or greater to let him know. Now I am not that great a patient soo my temp has gotten up to over 101 a couple of times and I didnt call him but it went away so I wasnt worried. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "mburwen" <[EMAIL PROTECTED]> > > I recently went through a bout of acute viral gastroenteritis. The ER > Dr. that treated me for the condition told me that, because I had CML, > and even if it was in remission, my immune system was compromised, and > that I was more susceptible to viral and bacterial attacks than the > average person. > > I discussed this with my hemo/onc, normally a mild-mannered person, and > he went through the roof. He insists that, as long as the CML is in > remission (I am PCRU), there is no degradation of the immune system. > He was quite angry at what he considers to be the stupidity of a > sizable segment of the medical profession. > > Since my Dr. and his team are recognized experts in the immune system & gt; business, I tend to accept what he says. Anyone have any further > comment on this subject? > > Mike Burwen > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Blurred vision
Hey Greenie, Over the past year suddenly my eyes got really blurry and I couldnt read a lot of things I have always been able to, now the opt. says it is my age (soon to be 46) but I dont really know. Here lately it has gotten worse. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Hi Everyone, I have a Question. After starting Gleevec back in 2000, I went to the eye Doctor to get new glasses. After a few days I notice that I had blurred vision in my right eye. Went back to the eye Doctor and rechecked my eyes. Found out that I had blurred vision in the left eye. The only way I can solve the problem would be to get to different sets of glasses. I'm could go a week with the right blurred then wake up and the left will be burred for a few days. I know it's the Gleevec, I just wonder if anyone else has the same problem. Thanks, Greenie Springfield, MO. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Question?
Adrienne, Hello. I am not in remission right now and I am not on gleevec or any other drug for CML. What I was asking was if Leukemia could make you resistant to antibiotics? I actually didnt go to my personal doc but to an ER and no they didnt swab my throat (they are not that thorough though they should be) He just looked in it, did a bunch of bloodwork, looked in my ears and told me my right one was infected and put me on Augmentin. I have always felt like taking Augmentin was like taking water *shrug* but that is just me. I have made an appt. with my ENT though for Monday so he should be able to clear it up. You know something that I think is funny, for a couple of years before I was dx I would get a "sore throat" but it would only last like a day, and I would think I was getting bronchitis or a cold but it would also just as quickly dissapear and I remember thinking how strange that was. I told my husband after I was dx I wondered if that had been becau se my white count was so high that it immediately killed any germ that came along??? I dont know if that is right or not but it makes since to me. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "artist934" <[EMAIL PROTECTED]> > > Katy, > > I'm not aware of any problems with Gleevec making you resistant to > antibiotics. I know from my own experience (I'm not the CMLer, my > husband is) that it can be very difficult to get rid of throat > infections. Bacteria can be resistant to antibiotics, including > augmentin. Did your doctor do a throat culture to identify the > bacteria? That should tell him/her whether the bacteria is resistant > to augmentin and if so what antibiotic will work. Even so, it can take > a long time to get rid of these infections and they are no fun. I > think that you might also be having a difficult time because you have > CML and even if you have a CCR, your immune system is still > compromised. In my case, I finally had my tonsils out as an adult, > also no fun, and that stopped my throat infections. Check with your > doctor to make sure you're on the right antibiotic and the right dose. > I hope this clears up soon for you. > > Adrienne > > On Nov 10, 10:30 pm, [EMAIL PROTECTED] wrote: > > I have a question, do any of you know if CML makes you resistant to > anitbiotics. I have a problem I have never had before. You know I had viral > pneumonia and when I started getting over that all of a sudden I got a bad sore > throat and caught bronchitis from my hubby, I am pretty sure I had strep I had > pustules on my throat and Uvula, and then a week ago I woke up at 4:30 a.m. with > a severe severe earache and finally went to the E.R. I had an ear infection from > which I have lost the hearing in my right ear, there is s much pressure and > I can barely hear out of it. I have been Augmentin 875 mg twice a day for seven > days now (taking it religiously) and the hearing in my ear and the pressure have > NOT improved even slightly, then today I started feeling pretty rough, got > reallly nauseated (took some phenergen) and then started having diarrhea. > Tonight my throat started hurting and I looked at it and I have pustules AGAIN > and the lymphnodes under my ear are starting to ache again > > . I cant believe that this is not clearing up with an antibiotic, thus the > question, does CML make you resistant to antibiotics? And remember I am not on > any form of chemo at present so it is just my immune system alone to fight this. > > Hugs, > > Katy > > > > -- > > DX: 10/03 400mg gleevec > > 1st remission: 12/03 > > #677 in Zero Club > > 1st relapse: 6/05 raised to 600mg gleevec > > 2nd second r emission: 8/05 > > 2nd relapse: 6/06 to current > > Taken off of gleevec 6/06 > > > > xanga.com/katybug45 > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Question? some natural things to do for colds and infection
Hi Jeanie, Sorry but I can't do LemonsI have a pretty bad stomach and I would be in agony for days if I tried doing the "real" lemon thing. Nope havent had a flu shot, as a matter of fact I have only had one in my life and that was the year before I was dx'ed and that was only because I worked in a OB/GYN's office and they made us. Never had one and for years I havent really had a problem with "flu" now I get colds, and bronchitis and I had pneumonia for the first time about a month ago. So I have never really felt the need for a flu shot. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Hi Katy, Sorry you have been so sick; I have had those sore throats and they are noo fun. I have had to take antibiotics a lot since being dx and they seem to work ok I suggest trying a new antibiotic since that one isn't working. Also my son came up with a natural remedy to take even before you get sick. Take 4 lemons cut up and boil them in about 1 or two quarts of water. After they are soft from boiling, get a masher and mash the lemons good. Strain through a strainer and drink a couple of cups hot. Did you have your flu shot? I just got mine and this helps a lot during the cold and flu season. I also gargle with hot salt water several times a day and eat lemons. A good hot soak is good also if you can stand hot water. I put epson salts in the bath water and just relax for a while. It's good to help nature along in healing these colds and infections. Blessings, Jeanie<3 In a message dated 11/10/2006 10:30:25 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: I have a question, do any of you know if CML makes you resistant to anitbiotics. I have a problem I have never had before. You know I had viral pneumonia and when I started getting over that all of a sudden I got a bad sore throat and caught bronchitis from my hubby, I am pretty sure I had strep I had pustules on my throat and Uvula, and then a week ago I woke up at 4:30 a.m. with a severe severe earache and finally went to the E.R. I had an ear infection from which I have lost the hearing in my right ear, there is s much pressure and I can barely hear out of it. I have been Augmentin 875 mg twice a day for seven days now (taking it religiously) and the hearing in my ear and the pressure have NOT improved even slightly, then today I started feeling pretty rough, got reallly nauseated (took some phenergen) and then started having diarrhea. Tonight my throat started hurting and I looked at it and I have pustules AGAIN and the lymphnodes under my ear are starting to ache again. I cant believe that this is not clearing up with an antibiotic, thus the question, does CML make you resistant to antibiotics? And remember I am not on any form of chemo at present so it is just my immune system alone to fight this. Hugs, Katy --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Question?
Rien, WOW your the first person I have met on here from Italy! That is so cool. Ya know I know I have talked to people from Singapore, Australia, Canada, Africa well all over the world but you really dont realize how far people are away on the computer. Anyway...lolThank you for your comments. This stuff is really starting to bug me, I am still taking my anitibiotic but my ear and throat are getting worse today and today my cough started coming back. I also (which I forgot to mention in the other post) have started running a fever again, around 100 which isnt much to some but to me 99 makes me ache all over! Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: rien jonkers <[EMAIL PROTECTED]> Ciao Katy, I had sinilar experience, two years ago I had antibiotics because of a flue and the side effects of glivec, that are not that serious for me, fortunately, started to become teriible: hurting throat, pain in fingers and toes:: I stopped the antibiotics and these side!effects disappeared nearly immediately; I still have them, but it is nearly nothing normally. Good luck, sunny greetings from Italy, Rien - Original Message From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>To: CMLHope@googlegroups.comSent: Saturday, November 11, 2006 4:30:08 AMSubject: [CMLHope] Question? I have a question, do any of you know if CML makes you resistant to anitbiotics. I have a problem I have never had before. You know I had viral pneumonia and when I started getting over that all of a sudden I got a bad sore throat and caught bronchitis from my hubby, I am pretty sure I had strep I had pustules on my throat and Uvula, and then a week ago I woke up at 4:30 a.m. with a severe severe earache and finally went to the E.R. I had an ear infection from which I have lost the hearing in my right ear, there is s much pressure and I can barely hear out of it. I have been Augmentin 875 mg twice a day for seven days now (taking it religiously) and the hearing in my ear and the pressure have NOT improved even slightly, then today I started feeling pretty rough, got reallly nauseated (took some phenergen) and then started having diarrhea. Tonight my throat started hurting and I looked at it and I have pustules AGAIN and the lymphnodes under my ear are starting to ache again. I cant believe that this is not clearing up with an antibiotic, thus the question, does CML make you resistant to antibiotics? And remember I am not on any form of chemo at present so it is just my immune system alone to fight this. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Question?
I have a question, do any of you know if CML makes you resistant to anitbiotics. I have a problem I have never had before. You know I had viral pneumonia and when I started getting over that all of a sudden I got a bad sore throat and caught bronchitis from my hubby, I am pretty sure I had strep I had pustules on my throat and Uvula, and then a week ago I woke up at 4:30 a.m. with a severe severe earache and finally went to the E.R. I had an ear infection from which I have lost the hearing in my right ear, there is s much pressure and I can barely hear out of it. I have been Augmentin 875 mg twice a day for seven days now (taking it religiously) and the hearing in my ear and the pressure have NOT improved even slightly, then today I started feeling pretty rough, got reallly nauseated (took some phenergen) and then started having diarrhea. Tonight my throat started hurting and I looked at it and I have pustules AGAIN and the lymphnodes under my ear are starting to ache again. I cant believe that this is not clearing up with an antibiotic, thus the question, does CML make you resistant to antibiotics? And remember I am not on any form of chemo at present so it is just my immune system alone to fight this. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Anybody decided Glivec not for them/MIKE W
Mike you do know, dont you, that you can buy dieuretics over the counter at the grocery store? They are usually where the diet aids are. But you have to be careful with them. They dont (I believe) work quite the same as prescription and you need to watch your potassium when you take them. I was lucky (I guess you would call it that) because I had high blood pressure at first so I was already on a diuretic along with bp meds and when My pressure dropped because of weight loss I asked the Dr. if I could stay on the diazide because of the edema that gleevec can cause and he said yes. Just adding my two cents, didnt know if you had thought about over the counter dieuretics or not. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "mburwen" <[EMAIL PROTECTED]> > > Please see my responses in-line. > > > My dr told me the other day if I had a 0% reading on my PCR then I > > would have 100% chance of living 5 years and I was cured. The > > definition of cured being I would continue on Glivec. Well like many > > others I am grateful for Glivec but not sure what quality of life it is > > with the side effects. > > Rusty, most people have an extremely good quality of life on Gleevec, > and most people on Gleevec or one of the newer drugs are expected to > live a normal life span, not just 5 years. The first few months on > Gleevec, you may experience any of several side effects from > time-to-time. These include nausea, diarrhea, pain in the legs or > feet, fatigue, weight gain, etc. A great deal has been written on this > subject, and I encourage you to read as much as you can about it. Most > of the side efects can be mitigated. For example, Immodium usually > takes care of the diarrhea, and drinking tonic helps with the leg/foot > pain. After a few months, many of the side effects will disappear, > and/or you will have learned how to manage them. Sometimes, > homeopathic remedies work. For example, I get foot cramps at night; at > bedtime, I take a couple of tablets of a homeopathic remedy called "Leg > Cramps" which works quite well. > > > > 1. Has anybody decided to go off Glivec after dramatically changing > > their diet? > > It would be well for you to learn about the root cause of CML and how > Gleevec and the other targeted therapies work to control it. At the > present time, I do not believe that t here is any evidentiary > correlation between diet and CML, either scientific or anecdotal. > There are experts on this forum who can be more definitive on this > issue than I am. > > > 2. What supplements are we allowed to take and what are we not. My dr > > seems to roll his eyes when I mention supplements. > > I don't know of any supplements that interefere with the Gleevec > healing process. MDs know very little about most supplements because > the companies that make them are not often interested in spending the > money to scientifically test their efficacy. Most supplements are > harmless, so it probably won't hurt to try them. I can only suggest > that you do as much research as possible. > > > > 3. What generally happens if you go off Glivec? Does it all come > > flooding back. > > The evidence is that Gleevec will not eradicate th e biochemical > mechanism that causes CML. It merely keeps it under control. If you > stop taking it, chances are that it will return. > > > 4. If you go off Glivec for a short period does this create resistance > > to the drug. > > No, but you are taking a risk. I wouldn't suggest trying it until your > PCR test shows no evidence of the disease. Then, if you stop, I'd get > a blood test done every month, and would resume taking Gleevec at the > first sign of the Philidelphia chromosome. Conventional medical wisdom > is "don't stop unless you can't live with the side effects." > > > 5. Has anybody cured themselves by alternative therapies? > > I don't know of anyone who "cured himself." The only known cure is a > bone marrow transplant, and even there, success is not guaranteed. > Many BMT recipients appear to be cured only to have the disease > res urface. > > > > I am not sure if there are many folks that are on this board that are > > just alternative health folks? Are there alternative health folks that > > have come to the decision that the only way to go is Glivec. Anybody > > cured themselves naturally by dramatically changing their life. > > I suspect that the majority of individuals who
[CMLHope] Re: Anybody decided Glivec not for them,
Pat I have a problem with yeast infections under my belly. Try using Tinactin creme for jock itch! Seriously I use it after I shower, (not every time but when I have been extremely hot or when I can tell I have one coming on) and it will prevent it. If you already have one wash it with mild soap like Ivory and then make sure it is dry and apply Tinactin and it will clear it right up. BUT DO NOT under ANY circumstances use the areosol sprayOMW..talk about a burn and it will make it peel really bad. But the cream is painless and peeless and works like a charm! Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Angie and Hilary, I also have 'yeast' (Candida) in all the warm places (underarms, groin, under breasts) going on 15 years now and living in AZ makes it worse in the summer. Winter and the dry keep it at bay, but I know it is there. I would love to find out if there is any connection. Pat dxd 11.04 Gleevec for 23 months Resistance and now on SPRYCEL --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Anybody decided Glivec not for them, gone all a 10% alternative therapies, dramatic diet change
Dear Rusty, 1. There is no cure for CML. 2. Secondly unless you have a resistance or allergic reaction or some other mitigating factor (like it cause me severe nerve pain) as long as glivec is keeping you in remission you will not be able to stop taking it. 3. If you do stop yes your CML will return. My Neurologist was diagnosed 8 years ago with CML, he was on gleevec or glivec until the last year or two I believe, he is in the AMN something another trial right now. I was also told in 2003 that with gleevec I would survive five years but with all the new drugs that are coming out I should live a lot longer. Yes your diet will change because gleevec has some pretty rough side effects among which are diarrhea and nausea which in turn brings on loss of appetite. It can be pretty rough the first year or so but it is better then the alternative.death..right? I know there will be several people in this group that will answer your question a lot better then I did and with greater detail. Just know that you will be okay and that the people here are very sweet and caring and available to talk to. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: "rusty blood" <[EMAIL PROTECTED]> > > I was diagnosed with CML earlier this year and have had a good blood > response to Glivec. I am generally not into Western Medicine. > > My dr told me the other day if I had a 0% reading on my PCR then I > would have 100% chance of living 5 years and I was cured. The > definition of cured being I would continue on Glivec. Well like many > others I am grateful for Glivec but not sure what quality of life it is > with the side effects. > > So my questions are: > > 1. Has anybody decided to go off Glivec after dramatically changing > their diet? > 2. What supplements are we allowed to take and what are we not. My dr > seems to roll his eyes when I mention supplements. > 3. W hat generally happens if you go off Glivec? Does it all come > flooding back. > 4. If you go off Glivec for a short period does this create resistance > to the drug. > 5. Has anybody cured themselves by alternative therapies? > > I am not sure if there are many folks that are on this board that are > just alternative health folks? Are there alternative health folks that > have come to the decision that the only way to go is Glivec. Anybody > cured themselves naturally by dramatically changing their life. > > Anybody figured out if there is a link between leukemia and candida. > > Oh so many questions. > > I believe in quality of life not quantity so hence my thought process. > > Cheers. > > Not so rusty blood > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: 6 new messages in 5 topics - digest
Gleevec is targeted chemo therapy. Hugs, Katy --DX: 10/03 400mg gleevec 1st remission: 12/03 #677 in Zero Club 1st relapse: 6/05 raised to 600mg gleevec 2nd second remission: 8/05 2nd relapse: 6/06 to current Taken off of gleevec 6/06 xanga.com/katybug45 -- Original message -- From: dee hedman <[EMAIL PROTECTED]> > > I guess I may have missed something along the > way. Why is gleevec radiation? > > --- IAintFinishedYet <[EMAIL PROTECTED]>> wrote: > > > Hey Tony: (my 2 cents) don't know the effect > > our gold has on Sperm; but several brother > > survivors have fathered children. My X (not a > > survivor) took Zinc for energy/stamina once and > > it worked (hehehehehe). There's only 5+ years > > of scientific documentation on our gold to > > date; maybe you could begin gathering data for > > brothers for the future. I have noted that more > > of our survivors are younger or should I say > > that younger survivors are joining the groups. > > After diagnosis, my Oncologist told me that > > it was a very benign medication; but it is > > radiation and we ingest it daily. > > All are in my prayers. > > > > > > "K" > > "I AIN'T FINISHED YET"!!! > > > > > > > > > > > > > __ > Do You Yahoo!? > Tired of spam? Yahoo! Mail has the best spam protection around > http://mail.yahoo.com > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Lowering the Gleevec Dose
Mike my doc had me on 400mgs a day until a year ago when I relapsed, then he raised it to 600 mgs. until he took me completely off a month ago. He never offered to lower it again. I know the Dr. I was seeing (transplant doc) at Vanderbilt told my husband and I that when I reached remission that my doc would probably want to keep me on the higher dose but not to let him, once I reached remission the dose should be lowered. BUT I was not that comfortable with him and trusted my doc more so I did what he said. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "mburwen" <[EMAIL PROTECTED]> > > Dan's post in which he said that he was on 800/day and is now > maintaining remission on 400/day piqued my interest. How many of you > have lowered your dose after achieving remission? Of those of you who > did that, did you manage to stay in remission or did the bad stuff come > back? > > I'm currently on 600/day and in remission. My Dr. is reluctant to > lower the dose because it is working. > > Mike Burwen > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Anyone got any answers/confused.....
Okay I am very confused by something and always have been since I was dx in 2003, when you look at your white count it says say...10.2...okay is that read 100,000.something? Or is it just ten? When I see peoples WBC and they say their count was like 300,000 I think man! Mine was next to nothing when it was 28.5 but if it is read 280,000 then I am tottaly on the wrong track...so like I said I am confused, can one of you please turn on the light? Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Sheila, My name is Pat dxd 11/04 WBC 330,000, platelets 1,500,000...on Gleevec and Hydroxyurea for 10 days to get WBC under 200,000 went home, had fevers for a week, went back into hospital for 5 days and went home again with counts still going down. WBC went to normal up until April '05 and from then on went up and down, but platelets never went down to normal always above a million. In April '06 we upped the dosage to 600mg and still same WBC ran about 30,000 and platelets always at 1 million 700,00 to 1 million 900,000, sometime taking Hydroxyurea along with Gleevec to get them all down and then off the hydrea.. April this year Dr. sent me to Tucson to talk to experts there and gave me options. I decided to wait for new AMN107 to come out this year, Sprycel became available sooner (7/1). I took Sprycel for 15 days and all counts went right away to normal, went off for four days and counts still came down a tad, took one pill (normal dose = 1 pill 2xdaily) for 2 days last Tuesday and Wednesday, stopped taking last Thursday, had labs done Monday and counts are a tad under normal. It is a great chemo as far as I am concerned, just need to find a dose that is consistent for me. I had become resistant to the Gleevec. Pat --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Update on Rachel
Dear Annie, I looked at ya'lls blog sites and your webpages. They are really cool. My dad's whole side of the family is originally from Tennessee! I have family in Hohenwald (where they originated), Manchester, Nashville, Trenton, Knoxville just all over southern and western Tenn. I am glad Steven is doing so well. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Annie" <[EMAIL PROTECTED]> > > Dear Julie > Rachel is beautiful and she and Kenny make a really cute couple! > Just reading the dx-etc below your name tells quite a story - you have > all been through so much! wow. Its wonderful that Rachel is doing so > well. > My 23 year old son has cml and is doing really wonderfully too. We got > the results of his 2nd BMB today but the fax was only half legible so > we will wait for the full report in the mail before doing the "big > yeeehhhaaa". One line I did seeBCR/ABL: NEGATIVE. Sounds like > music to my ears. > Steven is # 987 on Zavies list and that has become my very favorite > number... :-) > Love > Annie (Steven's mom) > www.livingwithcml.blogspot.com > dx: 6 March 06 > 400mg gleevec 10/03/06 > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Well I think I got a handle on it........
Lisa, Provigil also goes by Modafinil, go to google and type it in and search it will tell you all you need to know. I havent looked up the side effects because If I SEE them I will GET themlol..I know this about myself so I take a medicine for awhile before I look at side effects! I took it for the second time yesterday and it worked really well, I didnt have that speedy feeling I had the day before I was just wide awake. BUT when it wore off it WORE off and I was soo tired. But it did help me to stay awake all day. Good luck with it. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "lisa mcneil" <[EMAIL PROTECTED]> > > Hi Katy > > Does Provigil also have another name. I live in Australia & I don't think we > have that drug here, but it could be under another name. It's sounds great > but are you aware of any side effects it may cause? > When I was on Gleevec I saw a pain specialist & he put me on Lyrica. He > gradually increased the dose until it was quite high but it had no effect on > me. > I am on Dasatinib now. I have been on this for 2 mths. I had bad heart > palputations last week & was admitted to hospital for a couple of days. > Apparantly this is a side effect. I was not informed about this before I > started taking it. My doctor has been away but will be back on Monday. I > will be i n touch with him first thing. > Thanks for the information. > Take Care > Lisa > > > >From: [EMAIL PROTECTED] > >Reply-To: CMLHope@googlegroups.com > >To: CMLHope@googlegroups.com > >Subject: [CMLHope] Re: Well I think I got a handle on it > >Date: Sat, 28 Oct 2006 15:31:45 + > > > >Hi Lisa, > > The name of the drug is "Provigil" I took the first one yesterday and > >it works really well. As for the nerve pain, before they took me off of > >gleevec (which totally got rid of the pain) my neuro gave me Lyrica, it > >works really well for nerve pain BUT it will mess up your head so be > >careful. > >Hugs, > >Katy > > > > > >-- > >SHIH-POO Puppies now available! First shot and wormed. Email me for more > >info! > > > >xanga.com/k atybug45 > > > >-- Original message -- > >From: "lisa mcneil" <[EMAIL PROTECTED]>> > > > > > > > Hi Katy > > > > > > I like the sound of that drug that gives you energy I sure could do with > > > alot of that. Did your neurologist have any theories on your pain. Has > >he > > > ordered any tests or suggested any drugs to take. I saw a neurologist a > >week > > > ago. He wasn't too sure on what my pain was or how to treat it. He > >suggested > > > having a bone scan. > > > Thanks Lisa > > > > > > > > > >From: [EMAIL PROTECTED] > > > >Reply-To: CMLHope@googlegroups.com > > > >To: CMLHope@googlegroups.com > > > >Subject: [CMLHope] Well I think I got a handle on it > ; > > >Date: Sat, 28 Oct 2006 07:10:18 + > > > > > > > >Well as ya'll know I have been rather nervous for the past week after > >my > > > >onc's nurse calling and telling me I was positive. I have also been > >pretty > > > >scared considering they had just taken me off of gleevec and were'nt > >going > > > >to put me on anything else and I couldnt figure out why? I also told > >you I > > > >was going to talk to my Neuro. who also has CML and maybe HE could > >explain > > > >to me what my onc. was doing since they know each other. > > > >Well this is what he said, At one point he had to go off everything for > > > >four months, so they could see what his Philidelphia chromosone was > >doing. > > > >That apparently that is what my doc is doing, I guess to see how fast > >or > > > >slow it will come back, maybe I guess to see if the gleevec impeded it > >to a > > > >point that it will be very slow going.(on that I am not sure) Also he > >said > > > >there IS a criteria for being taken from one drug to another. They have > >to > > > >wait a certain period and I DO have to be positive to a certain point. > >Well > > > >I still am not happy but at least I understand a little of what is > >going > > > >on. I love my Neur. I feel better after seeing him then I do when I see > >my > > > >onc. He just understands better
[CMLHope] Re: Well I think I got a handle on it........
Hi Lisa, The name of the drug is "Provigil" I took the first one yesterday and it works really well. As for the nerve pain, before they took me off of gleevec (which totally got rid of the pain) my neuro gave me Lyrica, it works really well for nerve pain BUT it will mess up your head so be careful. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "lisa mcneil" <[EMAIL PROTECTED]> > > Hi Katy > > I like the sound of that drug that gives you energy I sure could do with > alot of that. Did your neurologist have any theories on your pain. Has he > ordered any tests or suggested any drugs to take. I saw a neurologist a week > ago. He wasn't too sure on what my pain was or how to treat it. He suggested > having a bone scan. > Thanks Lisa > > > >From: [EMAIL PROTECTED] > >Reply-To: CMLHope@googlegroups.com > >To: CMLHope@googlegroups.com > >Subject: [CMLHope] Well I think I got a handle on it > >Date: Sat, 28 Oct 2006 07:10:18 + > > > >Well as ya'll know I have been rather nervous for the past week after my & gt; >onc's nurse calling and telling me I was positive. I have also been pretty > >scared considering they had just taken me off of gleevec and were'nt going > >to put me on anything else and I couldnt figure out why? I also told you I > >was going to talk to my Neuro. who also has CML and maybe HE could explain > >to me what my onc. was doing since they know each other. > >Well this is what he said, At one point he had to go off everything for > >four months, so they could see what his Philidelphia chromosone was doing. > >That apparently that is what my doc is doing, I guess to see how fast or > >slow it will come back, maybe I guess to see if the gleevec impeded it to a > >point that it will be very slow going.(on that I am not sure) Also he said > >there IS a criteria for being taken from one drug to another. They have to > >wait a certain period and I DO have to be positive to a certain point. Well > >I still am not happy but at least I understand a little of what is going > >on. I love my Neur. I feel better after seeing him then I do when I see my > >onc. He just understands better what I am going thru having been thru and > >still going thru it himself. I told him I almost called him one night at > >home and his response was YOU SHOULD HAVE..I almost fell off my chair, > >around here you just DONT call a Dr. after hours much less at home, he told > >me "we blood brothers!!! wel > >l blood brothers and sister"...lol.YOU call me ANYTIME you need to > >talk!!! He is sooo cool. You remember back awhile ago I told you I had > >suddenly lost the use of my leg?(three times) and had lost the use of my > >hands several times? He said it was from the gleevec! > > Also remember a few weeks ago when I asked if anyone else had had > >abdominal charley horses? Well I was working at the Dead End haunted house > >tonight and they started hitting me one right after the other!!! It was > >awful! I would be right in the middle of scaring the pants off of someone > >and my side would knott up like crazy!! The cramps would hit me over and > >over for about thirty minutes then quite for a while then start again. > > Oh yeah, on October 9, when they did the gene study my WBC was 10.2, > >I had them do a finger stick yesterday morning before I went to my Neuro > >and it was DOWN to 8.2! And without having gleevec for the last three > >weeks! But then again worry wort that I am that is kinda bothering me since > >my left side was cramping up so bad tonight because one of the symptoms of > >an enlarged spleen is a low white blood count! > > One more thing before I go, any of you guys having trouble staying > >awake or being tired all the time need to ask you Dr. about a new drug > >called "Providgil" my neuro started me on it and OH MY WORD I have not been > >sleepy all day, actually I been running like a windup toy on high!!! (as if > >you cant tell by how I am rambling in this email) anyway it really works > >well! > > Okay okay I am going now just wanted to check in and let you all know > >what I found out. > >Hugs, > >Katy > > > > > > > > > > > > > > > > _ > Research and compare new cars side by side at carpoint.com.au > http://a.ninemsn.com.au/b.aspx?URL="" > %2Fcgi%2Dbin%2Fa%2Fci%5F450304%2Fet%5F2%2Fcg%5F801459%2Fpi%5F1004813%2Fai
[CMLHope] Re: The Eagle has landed
Hey Terry, Glad you made the trip safely and are at home once again. I am also glad you will still be online. Hope everything works out in time. Keep your chin up! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> I have safely arrived back home in Indiana. One thing I wanted to let everyone know is that while I was still in Ohio Regina got into my email, I have since changed my password so she cannot access it anymore. I do not want to bad mouth her but that upset me big time. Anyway, I am safe at home and am going to lay down. I might be online later tonight if anyone wants to chat. It has been a very draining 7 days. Regina and I broke up 7 days ago but we were forced to be in the same apartment for those 7 days until I got my check. Now that chapter of my life is over. It was not all bad, but it was a struggle. I guess now a new chapter begins. The sad thing is I am not sure I am looking forward to it the way my luck has been going. Take Care all, Terry-- "There is nothing ever wrong..butnothing's ever right..such a cruel contradiction". --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Well I think I got a handle on it........
Well as ya'll know I have been rather nervous for the past week after my onc's nurse calling and telling me I was positive. I have also been pretty scared considering they had just taken me off of gleevec and were'nt going to put me on anything else and I couldnt figure out why? I also told you I was going to talk to my Neuro. who also has CML and maybe HE could explain to me what my onc. was doing since they know each other. Well this is what he said, At one point he had to go off everything for four months, so they could see what his Philidelphia chromosone was doing. That apparently that is what my doc is doing, I guess to see how fast or slow it will come back, maybe I guess to see if the gleevec impeded it to a point that it will be very slow going.(on that I am not sure) Also he said there IS a criteria for being taken from one drug to another. They have to wait a certain period and I DO have to be positive to a certain point. Well I still am not happy but at least I understand a little of what is going on. I love my Neur. I feel better after seeing him then I do when I see my onc. He just understands better what I am going thru having been thru and still going thru it himself. I told him I almost called him one night at home and his response was YOU SHOULD HAVE..I almost fell off my chair, around here you just DONT call a Dr. after hours much less at home, he told me "we blood brothers!!! well blood brothers and sister"...lol.YOU call me ANYTIME you need to talk!!! He is sooo cool. You remember back awhile ago I told you I had suddenly lost the use of my leg?(three times) and had lost the use of my hands several times? He said it was from the gleevec! Also remember a few weeks ago when I asked if anyone else had had abdominal charley horses? Well I was working at the Dead End haunted house tonight and they started hitting me one right after the other!!! It was awful! I would be right in the middle of scaring the pants off of someone and my side would knott up like crazy!! The cramps would hit me over and over for about thirty minutes then quite for a while then start again. Oh yeah, on October 9, when they did the gene study my WBC was 10.2, I had them do a finger stick yesterday morning before I went to my Neuro and it was DOWN to 8.2! And without having gleevec for the last three weeks! But then again worry wort that I am that is kinda bothering me since my left side was cramping up so bad tonight because one of the symptoms of an enlarged spleen is a low white blood count! One more thing before I go, any of you guys having trouble staying awake or being tired all the time need to ask you Dr. about a new drug called "Providgil" my neuro started me on it and OH MY WORD I have not been sleepy all day, actually I been running like a windup toy on high!!! (as if you cant tell by how I am rambling in this email) anyway it really works well! Okay okay I am going now just wanted to check in and let you all know what I found out. Hugs, Katy > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Update
Terry, I hope since I email you privately that it wasnt something that I said that upset Regina, I am so sorry things have been so rough for you and I hope they look up soon. Have a good and safe trip and let us know when you get home. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Thanks all, I am awaiting for my check to come in the mail, which could come any day now. Then I will go to the store for Regina, give her money to get her license plates for her car, stock her up on food, and give her some money to last her until she gets her check on the 3rd, and then I am heading two hours away back to Indiana. I was going to stay here even if my check comes today so Regina was not here by herself, but yesterday she read an email I had sent that upset her, so I think it is best I go as soon as my check gets here. She claimed she was not snooping but I know better, because the email that upset her, she claimed had been forwarded to her outlook express from my gmail account?? I know I didn't forward it. So do the math. Anyway, I am hoping my check comes today, so if it does I will be back in Indiana today. Take care and I will let you know as soon as I land back home. Take care, Terry On 10/25/06, Dov <[EMAIL PROTECTED]> wrote: Hey, Terry. I'm glad you gave us that update. I was wondering howyou were doing, but didn't want to pry and force you to dwell on negative stuff. As for you and Regina, I just want to say that youare, as they say in Yiddish, a "mensch" -- a very decent guy -- towant to protect Regina against negative impressions right in themidst of your own troubles. I'm also glad to hear that theinsurance company is not giving you a hard time -- it didn't makesense to me that they would, but it must be a relief to have thatconfirmed by them. Best of luck with your move to Indiana. Let us know when the eagle has landed. Warmest regards. David (Dov) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Well I got the numbers/something else?
Dear Anjana, Thank you for your reply and the information. I really dont know what my Dr. is thinking, he has me kinda confused at the moment and really upset. I agree, he should have put me on something else if he was taking me off of gleevec. Apparently they caught my CML very early, and I have had NO complications except for side effects of gleevec. No mutations, no extremely high WC no high platlets nothing so I agree why is he taking the chance that the CML will become aggressive or resistant? I have an appointment with my neuro this week, as I have mentioned before he also has CML and has been in remission off and on for 8 years, I am going to tell him what is going on and get his thoughts. He knows my onc very well and he may have some insight, if not, then I am going to make an app. with my onc just to go in and talk to him and try to figure this out. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "anjana" <[EMAIL PROTECTED]> > > Dear Katy, > > Spleen will get enlarged only when the white counts go up to 50,000 > and up. With remission, there are several stages, first you have > complete hematologic remission when the blood counts get normal from > high counts, then comes cytogenetic remission when the BMA test on 20 > cells show negative and then molecular remission when the PCR is > negative. Similarly, relapse can occur in 3 stages in the opposite > order. You were PCR negative, so first you will show molecular > relapse, when your PCR is going up but your BMA or FISH may still be > negative. But if you do not take any meds, this state of molecular > relapse will translate into cytogenetic relapse and the BMA and FISH > will become positive, you may test 50-100%Ph+ with time. If you > continue not taking meds, then finally, your counts will go out of > control and then your spleen will enlarge. > > All patients will not have this kind of relapse, some can relapse > right out of PCRU into 100%Ph+ and their counts begin rising very soon. > Some may even go into advanced phases. When doctors see the PCR > rising, they know the disease is back so obviously some action is > warranteed regarding therapy. I don't rightly know what your doctor is > waiting for. Have you asked why he is delaying treatment? Obviously, > once the disease is on the move, the earlier therapy is initiated the > better the outcome, you don't want to get one of those mutations which > can happen if you are on no meds for too long. I know a patient who > was not on meds for pregnancy and so was off Gleevec, she ended up > developing resistance and is now on Sprycel. I know other patients who > have been pregnant and off meds and been fine, question is, does your > doc know your disease well enough to take the risk to see whether you > relapse slowly or aggressively? Most docs would just start the meds. > Are you comfortable knowing your disease has come back and no steps are > being taken? If you cannot get answers from this doc, consult a second > medical opinion. > > I would be very uncomfortable if Roy's doc had him off meds and the PCR > was rising. When he is on meds, and PCRs bounce, I worry. We should > never underestimate CML, dear Katy. > > Love, > Anjana > caregiver to Roy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Well I got the numbers/something else?
Pat, Not yet, but that is what I am afraid of. I have had a lot of pain in that area in the past few months. So I was just asking the question would my spleen get enlarged since I was off of gleevec. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Katy, This is Pat F. I was on Sprycel after G intolerance, but waited until the med could get to me (insurance) and my spleen did get enlarged. WC went up to 64K+/Platelets were up to 1,700K+. Darn right your spleen will enlarge. Is your spleen getting larger? Pat --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Well I got the numbers/something else?
Anjana, One more question, without me being on anything to keep the CML from proliferating, wont my spleen get enlarged?? Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "anjana" <[EMAIL PROTECTED]> > > Dear Katy, > > 0.169% is not a low PCR value since you relapsed from 0 to 0.169%. > In most labs 1-2% correlates to 10-20% Ph+. I know a patient whose > doctor started Sprycel when his PCR went positive after he was off > Gleevec for intolerance. The doctor did not wait for the patient to > have a 20-50% Ph+ value. That is what PCRs are done for, if there is > any sign of relapse, the doctor has to think of treatment options. You > have disease, Laura, you have had a molecular relapse, so you should be > talking to your doctor about Sprycel. > > Love, > Anjana > caregiver to Roy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Well I got the numbers
Anjana, Thank you for your reply and the information. I am afraid. Plain and simply afraid. I am confused by what my doctor is doing and unsure of why. I have slowly been slipping into a kind of depression over the last few days. I feel like when I first found out that I had CML to begin with which is kinda strange cause I didnt feel this bad when I found out a year ago that I had relapsed. Maybe it is because it is not sunny and warm and I am one of those people with seasonal depression. Anyway, thank you for the information and hope you all have a good day. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "anjana" <[EMAIL PROTECTED]> > > Dear Katy, > > 0.169% is not a low PCR value since you relapsed from 0 to 0.169%. > In most labs 1-2% correlates to 10-20% Ph+. I know a patient whose > doctor started Sprycel when his PCR went positive after he was off > Gleevec for intolerance. The doctor did not wait for the patient to > have a 20-50% Ph+ value. That is what PCRs are done for, if there is > any sign of relapse, the doctor has to think of treatment options. You > have disease, Laura, you have had a molecular relapse, so you should be > talking to your doctor about Sprycel. > > Love, > Anjana > caregiver to Roy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Well I got the numbers
Well I got the test results and they are... Positive for BCR/ABL at 0.169% of the median level. So (Anjana) what does that mean?? Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -~[CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~--- --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New Doctor visit
Hi Anjana, Yes he is sure, he had me go off for two weeks to see if the pain in my arms and legs went away then restart it. It went away within about three days and when I restarted within one or two days was coming back so he told me to stop taking gleevec completely. He just worries me. He is going to leave me off for two months. I just dont understand what he is doing. My test has been at zero for a year, I dont know if you remember or not but a year ago it was positive and he raised me up to 600 mg of gleevec (I am Laura by the way from the asian group in case you didnt recognize me) and it went back down to 0. Now it is positive again but he wants to wait to see in two months if it is more positive? How can it "hold" if I am not on anything to hold it back? I dont know. I am kinda stuck here between a rock and a hard place. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "anjana" <[EMAIL PROTECTED]> > > Dear Katy, > > Maybe you are just barely above detectable by the PCR and your onc > wants to see if that holds or the PCR climbs up further. I do think > you need to treat the CML, Katy, and if you are intolerant to Gleevec, > you may need to go on Sprycel. Its very bad if the disease comes back > aggressively. Is your doc 100% positive that your side-effects are > from Gleevec? When you are off Gleevec, you do not have the > side-effects? > > Love, > Anjana > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New Doctor visit
Go ahead Terry rant away! We all need to rant and rave once in a while...speaking of which.hehemy onc's office called this morning, my ABL/BCR (or whatever those intials are) was "a little bit" positive.is that like being a "little bit" pregnant? S I asked the nurse, well what is he going to do? He took me off of gleevec? She said there was a new drug out, and I said yeah, sprycell, and she said but he was gonna wait until I was "more positive"??? to put me on it.okay anyone else confused? or is this standard procedure. I am going to pick up a copy of the test this afternoon and will post the numbers as soon as I get them. OKAY now, I am done with my ranting and raving.anyone else? *S* Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Hi all, Well tomorrow is the big day. I am have my first appointment with a new Onco here in Cincinnati. I did not want to leave my doctors in Louisville, despite having problems with Dr. Montez, but the drive every month was rough on me and my pocket book. So I really had no choice. I have to admit I am a bit worried. I am hoping this new doctor is not going to want to experiment on me, or want to change my treatment, because, despite the side effects I have with Gleevec it is keeping my blood counts within remission guidelines. They go up and down but have none of them have gotten into the danger zone. So in my mind if it is not broke don't fix it. I have been worried for the past week about this visit and honestly dreading it, because every time I have seen a new doc(twice since being dxed) they always want to do a BMB. I know I am being a sissy, but to me they hurt like hell, and at CBC(where I was going) they were only going to give me a local and not medicate me any other way, at least until I told Dr. Huber that unless he wanted me to jump off the table it would be wise to give me something to remain calm..hehehe. One thing I can say good about the first doc that I fired was that he did a great job with my first BMB. Dr. Huber stabbed me at least 10 times when he was giving the local for my second BMB, and my hip was sore for weeks after. I guess I spooked him so much he wanted to make sure the local took..hehehe. My biggest worry to be honest is when it comes down to my disability insurance company. I am not sure how many remember my recent post about Aetna calling me, but they have me pretty worried. I don't discuss it with Regina because she worries enough as it is about me. Not to mention I have been having one of my "bad" spells. For the last week and a half I have felt like crap, and the pain(the meds still help most of it) has been pretty bad. I have had to lay down every day, and despite having more good times then bad, when the bad times hit, it just reminds me of the fight I am in. Anyway, this thing with a new doctor, and Aetna changing what their definition of me being disabled is, has me very concerned. It is not that I do not want to work. Trust me, I would love nothing better than to be making the kind of money I was when I was able to work, and I loved my job. It is just if Aetna finds a way to not pay me I will be totally screwed, and if this new doc is one of those typ es that is not going to be supportive that could really cause me problems. I may be over reacting, but it just seems since Regina and I got together and I have tried to make a new life with her, we have had one thing after another go wrong. The one good thing so far is we are moving to a house, but there are worries there that we will be having a rougher time making it there. I keep my game face on for Regina, because she has Crones disease and does not handle stress well at all. She knows I have been feeling bad lately, but I just tell her it is the flu because I do not want her to worry to much. She told me a few weeks ago that sometimes in the middle of the night she reaches over and feels my chest to make sure I am still breathing, so I know she is worried about me allot. I keep telling her if I go it will not be one of those over night things and not to worry, but I know she still does. I am sorry for such a long post, but since I have moved here to Ohio, I really do not have anyone to rant to, my family(back in Indiana) were not supportive at all about Regina and I hooking up, and even though my mom and I speak on the phone, I can't talk to her about concerns because she either goes into "I told you so" mode, or worries more than she already probably does. So I really do not have anyone here I feel I can talk to. Don't get me wrong Regina is very supportive, it is just she has health issues herself and worrying about me just makes hers worse. One good thing that happened recently
[CMLHope] Re: Viral Pneumonia??
Thank you for the concern guys I really do appreciate it but I am feeling better today, no fever, less cough, not feeling so much like I am drowning today just treadin water and my voice is on the way back. Ya know you always get worse right before you get better and last nite when I emailed ya'll I was at the bottom so maybe it is all up from here, if NOT I will call my Doc. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] (katy leans way out of her chair looks behind Zavies back and sticks her tongue out at Terry!)lmborof Love ya too Terry, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Katy, First I have to words for you when are going to be out in the cold for any reason or length of time...Warm Coat...hehehehe. Okay I am done being a smart a*&..hehehe I know you hate going ot a doctor but Rob is right, you really should. Even if it is nothing it could turn into something and make you far worse, and none of us want that, I am sure especially you, and Dale. So get to the doctor goofy:) Please take care, Terry On 10/17/06, Rob <[EMAIL PROTECTED]> wrote: If you think it could be pneumonia you definitely need to see a doctor. Because CML patients have an impaired immune system any type of respitory infection could easily become serious. Rob On 10/16/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I think I may have viral pneumonia. I told you guys I was sick about a week ago with a low grade fever, cough and was stopped up .well guess what..it dropped.straight into my chest. At first I thought I had bronchitis cause when I coughed up stuff it was kinda yellow and had that flavor, ya know, the one only bronchitis has? Well that went on for a couple of days and I was taking Sudefed PE which does not help, by then Dale had it too so we bought some REAL sudefed and it was working good. I had a low grade temp still, but the cough was drying up and became non-productive. I was a little hoarse but nothing major. Saturday night Dale and I decided to work at the haunted house my kids work at and help out. It is a big deal and brings in thousands of dollars for charity. My daughter has been doing it for four years, since she was ten. A local photographer does it and it is fantastic ANY way! I stood out in the cold air for about five or six hours holding a flashlight for people to see their way from one section to the other. It got down in the thirties. I had not gone prepared to work. Dale was going to and I was gonna either hang out a bit and then go home but ended up working because they were shorthanded. By about the fifth hour I couldnt feel my fingers or toes and couldnt do much more then whisper so I told them I had to leave and went home. By the next day I had completely lost my voice and my cough was worse and my temp was up a little to 100.9. Today my voice is a little better but my cough is really bad. I am coughing up white frothy sputum and feel like I am drowning, in between coughing spells I wheeze and bubble. My temp is down. My lungs have started hurting tonight in my back pretty bad. But I looked up Virul pneumonia and it said they dont do anything for it that it usually clears up in 1 to 3 weeks by itself. So I am just tryin to hang in there. I dont want to go to a doctor, I have gotten where I absolutely hate going there. Guess I just needed to whine a little and see if it sounded like pneumonia to you guys (I know I know you cant diagnose BUT you can opionate!!!...lol) Hope you guys are faring better then I. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Zavie miller" < [EMAIL PROTECTED]> > Chat Reminder - Tuesday 9:00 PM Eastern > > Photos were taken at the New York Botanical Gardens last weekend. The > work is by Dale Chihuly, a glass artist from Tocoma, Washington. > > > > -- Forwarded message --From: "Zavie miller" < [EMAIL PROTECTED]>To: < [EMAIL PROTECTED]>, < CMLHope@googlegroups.com>Date: Tue, 17 Oct 2006 02:37:16 +Subject: [CMLHope] Chat Reminder - Tuesday 9:00 PM Eastern-- Powered by NewOrleansEmail.Com http://neworleansemail.com --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Viral Pneumonia??
(katy leans way out of her chair looks behind Zavies back and sticks her tongue out at Terry!)lmborof Love ya too Terry, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Katy, First I have to words for you when are going to be out in the cold for any reason or length of time...Warm Coat...hehehehe. Okay I am done being a smart a*&..hehehe I know you hate going ot a doctor but Rob is right, you really should. Even if it is nothing it could turn into something and make you far worse, and none of us want that, I am sure especially you, and Dale. So get to the doctor goofy:) Please take care, Terry On 10/17/06, Rob <[EMAIL PROTECTED]> wrote: If you think it could be pneumonia you definitely need to see a doctor. Because CML patients have an impaired immune system any type of respitory infection could easily become serious. Rob On 10/16/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I think I may have viral pneumonia. I told you guys I was sick about a week ago with a low grade fever, cough and was stopped up .well guess what..it dropped.straight into my chest. At first I thought I had bronchitis cause when I coughed up stuff it was kinda yellow and had that flavor, ya know, the one only bronchitis has? Well that went on for a couple of days and I was taking Sudefed PE which does not help, by then Dale had it too so we bought some REAL sudefed and it was working good. I had a low grade temp still, but the cough was drying up and became non-productive. I was a little hoarse but nothing major. Saturday night Dale and I decided to work at the haunted house my kids work at and help out. It is a big deal and brings in thousands of dollars for charity. My daughter has been doing it for four years, since she was ten. A local photographer does it and it is fantastic ANY way! I stood out in the cold air for about five or six hours holding a flashlight for people to see their way from one section to the other. It got down in the thirties. I had not gone prepared to work. Dale was going to and I was gonna either hang out a bit and then go home but ended up working because they were shorthanded. By about the fifth hour I couldnt feel my fingers or toes and couldnt do much more then whisper so I told them I had to leave and went home. By the next day I had completely lost my voice and my cough was worse and my temp was up a little to 100.9. Today my voice is a little better but my cough is really bad. I am coughing up white frothy sputum and feel like I am drowning, in between coughing spells I wheeze and bubble. My temp is down. My lungs have started hurting tonight in my back pretty bad. But I looked up Virul pneumonia and it said they dont do anything for it that it usually clears up in 1 to 3 weeks by itself. So I am just tryin to hang in there. I dont want to go to a doctor, I have gotten where I absolutely hate going there. Guess I just needed to whine a little and see if it sounded like pneumonia to you guys (I know I know you cant diagnose BUT you can opionate!!!...lol) Hope you guys are faring better then I. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Zavie miller" < [EMAIL PROTECTED]> > Chat Reminder - Tuesday 9:00 PM Eastern > > Photos were taken at the New York Botanical Gardens last weekend. The > work is by Dale Chihuly, a glass artist from Tocoma, Washington. > > > > -- Forwarded message --From: "Zavie miller" < [EMAIL PROTECTED]>To: < [EMAIL PROTECTED]>, < CMLHope@googlegroups.com>Date: Tue, 17 Oct 2006 02:37:16 +Subject: [CMLHope] Chat Reminder - Tuesday 9:00 PM Eastern-- Powered by NewOrleansEmail.Com http://neworleansemail.com --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: chili and thanks for all your e-mails
lol..that last one was supposed to say GALL bladder cancer not BALLbladder cancer. Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Hey Terry, Location I believe has a LOT to do with it! I live in Paducah Kentucky and we have a Nuclear plant here and we have been told we have the highest incidence of cancer (period) in the nation. I know in my family alone I have an aunt who died of ballbladder cancer, a grandmother who died of uterine cancer, an x father in law who had colon cancer, my dad had prostrate cancer and his second wife just died two years ago of melenoma, and my mom has colon cancer, I have an aunt who here who has lymphoma, and I have CML. I also have two uncles (not here) that have lung cancer and one of them died with it about two years ago. My kids feel like they are doomed. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Hi Pat, I have read once that in either Long Island, or Rhode Island, can't remember exactly which..hehe. That breast cancer in women in that area is unusally high. Alex Baldwin's mother had it and he was doing a charity thing for it. So there could be something to location being a factor. I guess it depends on how much toxic stuff is in the area perhap? With them not knowing what causes CML for sure it is hard to say, Take care, Terry On 10/13/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I also read somewhere that it is extremely rare for more than one person in a family to get CML...Well, just this past summer, my 80 year old Uncle who lives in PA was diagnosed with it and I was DXD on 11.04 and we are 18 years apart, but we are both type 'a' personalities. He is a very stressed filled person with a nasty, short temper and I am the perfectionist with a very slow burning temper. I hold it all in and he lets it all out at once, When I told my onc he was shocked. I have lived in AZ since '93 and he has lived in PA almost all of his life except for a 4 year stint in NJ which is where I grew up. Wonder if there is any correlation. Pat --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: chili and thanks for all your e-mails
Hey Terry, Location I believe has a LOT to do with it! I live in Paducah Kentucky and we have a Nuclear plant here and we have been told we have the highest incidence of cancer (period) in the nation. I know in my family alone I have an aunt who died of ballbladder cancer, a grandmother who died of uterine cancer, an x father in law who had colon cancer, my dad had prostrate cancer and his second wife just died two years ago of melenoma, and my mom has colon cancer, I have an aunt who here who has lymphoma, and I have CML. I also have two uncles (not here) that have lung cancer and one of them died with it about two years ago. My kids feel like they are doomed. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Hi Pat, I have read once that in either Long Island, or Rhode Island, can't remember exactly which..hehe. That breast cancer in women in that area is unusally high. Alex Baldwin's mother had it and he was doing a charity thing for it. So there could be something to location being a factor. I guess it depends on how much toxic stuff is in the area perhap? With them not knowing what causes CML for sure it is hard to say, Take care, Terry On 10/13/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I also read somewhere that it is extremely rare for more than one person in a family to get CML...Well, just this past summer, my 80 year old Uncle who lives in PA was diagnosed with it and I was DXD on 11.04 and we are 18 years apart, but we are both type 'a' personalities. He is a very stressed filled person with a nasty, short temper and I am the perfectionist with a very slow burning temper. I hold it all in and he lets it all out at once, When I told my onc he was shocked. I have lived in AZ since '93 and he has lived in PA almost all of his life except for a 4 year stint in NJ which is where I grew up. Wonder if there is any correlation. Pat --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Charlie Horses or Muscle Spasms
Hey Pat, One other thing is I cant take calcium, I was told in 1990 not to take any calcium supplements and to stop taking Rolaids and Tumms because of the calcium because I had Kidney Stones (they run in my family) and the Dr. told me the excess calcium is what caused it. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] To Katy, I am one of those who had the muscle spasms, cramps whatever you want to call them. The first one I had was my chest right around the ribs, but I did not know that it was a spasm at the time. I thought I was having a heart attack and drove myself to the hospital because there was no one else to drive me. I have had them in my lower back also. The majority though, have been in my hands, fingers, arches of my feet, ham strings, knees, femur muscles, neck, and ankles. I only read recently that Gleevec may have something to do with them. I also took 3600 mg of calcium a day to counteract them not realizing it the 'G' doing it but the calcium helped as did the potassium. The calcium and potassium did work. I am on Sprycel now and have not had spasms for 5 days. So I really believe it was the Gleevec. Pat --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Charlie Horses or Muscle Spasms
Hi Carolyn, Yes I have learned what brings on the foot, hand, leg, hip back spasms.lol...but have yet to figure out the ones on my left side. I havent been doing anything that should bring them on. Thankfully I havent had anymore of them lately. And to answer a couple of others.I have been taking potassium pills for a long time because I am on a diruetic (sp?) and I know when I have cramps from low potassium I have had those since I was in my early twenties and am now 45 but these are much differant. As a matter of fact over the last five months I had my doc increase my potassium, so I am good on that front. Anyway hope you guys are having a great evening. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "c aldous" <[EMAIL PROTECTED]> Katy- I read in one of your emails about you getting charlie horses in your back and abdomen. I've been on Gleevec for years now, and occasionally have had nausea, but have suffered the most with what I call muscle spasms. I get them all over, but the worst are in the back and abdomen. I basically have just learned to live with them, because I am on so many other meds since I had a bone marrow transplant, I really don't want to add more. You learn what positions are quick to bring them on, and try to avoid those positions. I'm sure there are others out there who have the same thing. Carolyn --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Swollen Glands
Yep Chrissy.it is called a cold/flu...lolI have had it since yesterday morning! I have been absolutely miserable, my darling adorable kissable lil granddaughter who is only 8 months old spent the night with me a couple of nights ago then my 10 month old nephew night before last, both teething both with a little cold and I woke up yesterday morning sicker then a dog, glands swollen, nose stopped up, chest tight and running a fever, I feel a little bit better today but not much. This too shall pass!!!..lol .use sudafed or nyquil and gets lots of sleep and you will be okay. Hugss, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Chrissy" <[EMAIL PROTECTED]> > > Has anyone had swollen glands recently? I think I have a cold, but it > is so aggravating, because it seems like the symptoms just want to > linger around and not actually DO anything. I just feel a little > horrible, not totally horrible (yet). I'm just wondering if it's > normal to have swollen glands (in my neck, under the jawbone) if you're > not feeling well, while having CML as well. > > Chrissy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Who Likes The Dentist?
Terry, LOLI still smoke also.my Onc. told me I had to quit, I looked him dead in the face and said HUH How you gonna tell me in one breath I have cancer, then turn around and tell me to quit smokin? That just AINT happenin.(hehehe sorry some of the hillbilly reared its ugly head) Anyway he hasnt said anything else about it ecxept every once in a while he will walk in and sayAHEM.if I can smell it your smokin TOO much!...hehe and I just look at him and say and what brought that on?.I told my husband when I was diagnosed well they cant tell me to stop smokin now or I will get cancer, and my then fourteen year old son who knows EVERYTHING...pipes up and says yeah but not LUNG cancer.lolI could have strangled him. Now I know I sound all flip about it and will probably be rained on with angry emails, but just let me say..I do know I NEED to quit and to be perfectly honest I would LIKE to quit, bu t I am soo addicted and my nerves are so bad I just CANT quit. I smoke about 2 and 1/2 packs a day and have for years, I just cant. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Hi all, I am a smoker, I worked in a gas station, and I drink dark soda, so I guess I am screwed..hehehe. Seriously, I was told there are so many things that I could have been exposed to that they are not willing to say it was any one thing. I was also in the military, and honestly I think I got it during that time. I know this may be a stupid way of thinking but several months ago, I had someone tell me they could not believe I have Leukemia and I still smoke. My answer was "Well I have a blood Cancer not lung cancer". I did not know about benzene and cigarettes until recently. In my opinion I think there "are" so many things in our enviroment that can cause our mutation, that the only safe thing is to build a dome in the mountains and live there..hehehe. I was teasing with my lady the other night while we were watching X-men 3 that it would have been nice if I was going to get some sort of mutation to my body to get something cool like they have instead of CML..hehehe. Take care all and hang in there, Terry On 10/11/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I have never smoked, but was having a lot of xrays for dental work. Jeanie<3 In a message dated 10/10/2006 8:41:59 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: You know Chrissy, I was just wondering that the other day.and the only way to find out (in a manor of speaking) would be to ask certain questions of all the CML patients that are alive and available today. I was thinking about approaching the Leukemia Society to help me think of the questions even though I know already a lot of the ones I want to ask, but it would take time an resources, but I would love for it to be done and find out if there is a common thread to all of us. Answer me a question...are you a smoker or ex smoker? I read in one of the many data I researched that 'virtually all people who have CML are smokers'...I was, were you? I can find that article again if I have to but I was shocked when I read that and figured there might be a law suit involved for someone. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: causes of CML
Lora, I am not sure if you are angry with me or not, you said "Katyjust for your grins..." If I said something that offended you I am sorry that was never my intention. I cant even remember now what I put the *S* after but I was trying to let you know that I was not being fececious (sp?) or glib. I hope everything goes well for you and Terry. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] first, Terry has had various minor dental work done, fillings, etcdidn't seem to concern our dentist at all that Terry has CML Terry did smoke some as an older teenand a "bit" during his young adulthood.when we were young married, he would smoke some at work...but never, ever at home, etc. Yes, enough to be a factor that it could have caused CMLbut he is 47, hasn't really smoked anything but a once a year cigar since he was 25 maybe. we think that Terry got CML from benzene exposure working in the printing industry. He ran different size printing presses, and was even the OSHA specialist for one print shop. ha ha now!! The thing is that while he was working in the industry, he made good money, and possibly the whole time, he was being exposed to a chemical that has given him cancer & has now devastated us financially. what a mess..& yep, we did sign up with a Dallas law firm for a class action lawsuit. They assured us it would be years before going to trial, and certainly to not count on anythingespecially as Terry did the research for them as to the chemicals usedhe found many companies were bought out by others such as 3M, or were out of business. So, whether we get $4,000 or $4 million.well, it would go towards the massive debt, trying to buy his 20 some odd prescriptions he takes now, etc. Wow, we might even be able to have a house, etc. LOL!!! You do go through a stage of ANGER ...wanting to blame whatever or whoever has done us wrong...eventually in order to live a fairly happily daily life, you must just move on..Yes, if it is definitely smoking or dark colas, etc, then you would want to cease the continuous exposure. For Terry and his poor health, he can no longer work in the printing industry. As he cries out in pain throughout the day or night, he will never be able to stand 8 to 10 hours a day at a press. At least now, he is able to work fulltimetook 2 years through this journey for him to even do that. But, I always think ahead as to what if he just can't any more. Katy, we did consider divorce, but it would not have helped our situation.. even with working part-time, Terry wouldn't qualify for Medicaid in Texas. He could only earn $350 a month to get Medicaid...and we had 3 children still at home, and if he could work, he certainly wanted to, and will continue till he no longer can work. SS & SSDI both were denied, since he could work some, even if not fulltime...and he could work at any job, even if could no longer work in his field, nor earn his previous rate of pay. We consulted an attorney for appeals, but they said that Terry could not work for a year in order to have a good case. Jeez.Terry wants to work, but has a serious illness & there is no help for those of us who were born in America. I certainly believe that we all need to be responsible, but if we had to shell out the $70 or so for every appt he has to go to, he would have just given up. Katy...just for your grins.when Terry got diagnosed 11/04 & a lengthy hospital stay.when he was discharged we were sent home "ignorant". There was no plan of action, etc, other than go see the oncologist in 2 weeks. When I called & they said the first appt was $565, I explained that there was no way we could pay that & could we have a referral to some place else. The lady said what could you pay?.and I said well, what else would we be looking at.she said a $50 weekly lab bill, etc. Remember, that Terry was not able to work at all at this point. She said well pay for the lab bill and then pay a payment on the first apptI stood my ground & explained that we couldn't do that, and thanked herthat is when she finally explained that they did have a program for Terry to apply for aid from the cancer center if he qualified. So, I picked up the formsfilled them out, and was glad he was approved. Then, about a week later, (they had given Terry one day of Gleevec in the hospital) we get a call from the center saying they were trying to rush a 30 day supply from Novartis & we had to answer some basic financial questionsagain, we were approved.but the gal told us that Gleevec cost a $1,000 a DAY. So, for months that is what we understood was the cost of Gleevec. Novartis approved
[CMLHope] Re: Who Likes The Dentist?
Chrissy and Pat, I am a smoker. And something I forgot on the other post was, I only had six teeth left when I went to the Transplant Doc and he told me to have them all pulled because of chance of infection I guess and I did, went to an oral surgeon and had no problems. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] You know Chrissy, I was just wondering that the other day.and the only way to find out (in a manor of speaking) would be to ask certain questions of all the CML patients that are alive and available today. I was thinking about approaching the Leukemia Society to help me think of the questions even though I know already a lot of the ones I want to ask, but it would take time an resources, but I would love for it to be done and find out if there is a common thread to all of us. Answer me a question...are you a smoker or ex smoker? I read in one of the many data I researched that 'virtually all people who have CML are smokers'...I was, were you? I can find that article again if I have to but I was shocked when I read that and figured there might be a law suit involved for someone. In another article they talked of being exposed to Benzene. I have a topical allergy to Benzocaineany relation?I do not know and have not found out so far, but I also read the radiation thing. That would be a great research project would it not? Pat --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Who Likes The Dentist?
Chrissy, When I was diagnosed three years ago the only thing they knew of that they could actually say caused CML was exposure to benzene. Like people that worked at gas plants or gas stations. Also they have discovered that cigerettes produce benzene and I heard on the news a couple of weeks ago that soda's the dark ones I believe produce benzene while they are sealed although they thought it was at "safe" levels they have now found that some are not safe after all. I know I worked at convenience stores for years around gas and fumes and also used industrial cleaners while working there barehanded. I also have had more then my share of X-rays, CT's and MRI's in my life due to many health problems so that could be part of it. Supposedly though CML is not hereditary and I hope they dont change that one! h also I smoke..so there ya have it..my two cents. Hoped it answered at least one of your questions. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Chrissy" <[EMAIL PROTECTED]> > > Hey group...I have been having a horrible time with my wisdom teeth. I > have two questions. > > 1) Have any of you had any dental surgery done while on Gleevec? What > were your results? > > 2) Are x-rays dangerous? I've had a lot of dental x-rays in the past, > and when I was first diagnosed, I thought it was because of the x-rays > that I got CML (I thought the x-rays exposed me to harmful radiation). > > > Ok, while I am on a roll, why not a third question... > > 3) Do any of you know how you got CML? Do any of you suspect why? > Seeing as a typical cause is radiation or exposure, I myself am kinda > stumped about how I ended up with this disease. One theory here is > that it may have something to do with the fact my Dad worked at CFB > Gagetown back in the 1960s when they did Agent Orange and other dioxin > testing. Dad's healthy, thank goodness, but they wonder if it skipped > him and went to me. > > Anyway, I need to know about the dentist thing first...my teeth are > making me CRAZY!!! > > Thank you and God Bless, > Chrissy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: understanding test results
Kathy, HANG ON! We are here for support and understanding, and you need to email ANJANA she can explain all your test results she is great with this stuff and has emense (sp?) knowledge of CML her husband Roy has it. I do not claim to understand your test results I cant understand mine half the time. I go to a Onc. Locally and all he does every six weeks is a CBC and that is okay because it will tell him if your white counts are up and if your platelets are low, or if your anemic from chemo, it tells them ALOT. BUT you do need to go to a Hemotologist locally (along with a specialist like at MD Anderson) they will work in conjunction. A regular GP does not know enough about Leukemia to help you. I have been amazed at the Dr.'s I have met in the last three years that dont even know what CML is!!! Surgeons, GP's, Gastroenteroligist's and I had to educate them. Just hang on when you first find out that you have CML it is very confusing and scary and depressing but as time goes on it will get better! Cling to the people in these groups they have a wealth of understanding and knowledge that they can share with you that you wont find anywhere esle. It WILL BE OKAY!..(smile) Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> > > This will be my second post, tho I've been reading the posts since I > was dxd in May 05. I'm feeling discouraged, and even afraid. My local > doctor knew little about cml, so I went to MDAnderson in May 06. The > FISH test was 99%negative in May, so I think this means I hit the > desired response of cytogenetic remission at 1 year. The PCR was .17 . > In Sept 06 the PCR value had risen to 0.32. The doctor would like to > get to 0.05, so I think that means their baseline would be 50.0. Is it > important to hit molecular response quickly? I've been on 400mg > gleevec, except for 10 weeks on 800mg in 05. I had to fight with my > local doctor for that increase, and she prevailed upon me to lower it & gt; after tests in 11/05 that she intrepreted being better than they > actually were. I saw her again in 1/06 and 4/06. Both times she did > only CBC, saying this was adequate. As I type this, I can't believe I > waited to go to an expert. I'm sorry to go on so long. I hope someone > will tell me I'm overreacting and my progress has been good. Thank you > so much--Kathy > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: To Katy about off Gleevec for life
Hi Pat, I know in my heart (and head..hehe) gleevec is not a cure, but I will say that when I was diagnosed three years ago a Dr. Jagasia in Nashville told me that some patients were "cured" by gleevec. THAT is why I no longer see him!!! I knew better, he was a transplant specialist. I told my doc yesterday when he wanted to wait three monts that I knew gleevec had not cured me and that I knew there was no "cure" for CML. That even if you had a transplant you had a chance it would show back up, that and HVGD are the main reason I opted not to do a transplant. I didnt want to trade one disease for another. I know about Luekemia and what to expect so why would I want to trade for one I have not experienced. Not to say that if they told me today that if I didnt have a transplant that I would die in a few days that I wouldnt have one, in that case YES I would most certainly reconsider. I know this disease is slow moving, but I also know as I said in my other post today that I know it can skip phases. I guess it is just not knowing what is actually happening in my body and wondering what is gonna happen that scares me. I guess I will just have to wait and see. Thank you for your post you and Lora really have made my day! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] To Katy, I was dxd11/04, did very well on Gleevec for 7 months, really. Then in June of '05 counts started to increase and then went up and down from that point on. Finally, my onc sent me to Tucson to meet with the specialists at UMC. They offered me 3 options. 1. join a study and see what happens 2. bone marrow transplant (I am 62 now with only 40% cure at my age) 3. wait for the new AMN107 to be approved hopefully by later this year. I had chosen the BMT, but neither of my surviving siblings was compatible. They still tried to convince me to do it anyway, but insurance was the problem. I also started reading, very carefully the info book for BMT...and decided that at my age, for whatever time I have left I wanted to be as mobile and 'well' as I could be, not sick trying to fight all the complications that are associated with BMT. Dr put me on Hydroxyurea to get platelets down as I was hovering at the 2 mil mark. That stuff is great, but it is very dangerous, of course, so when counts went down all of a sudden, I had to immediately stop the Hydroxyurea. Counts start going up again, Dr puts me back on Hydroxyurea which bounces the counts up right away because it is poison and my body was trying to fight the poison. I stopped taking it and count rising slowed. Then I get emails from Leukemia Society newsletters saying 3 new chemos for CML patients are almost ready (for Gleevec resistant patients). Go see Dr. and have been on Sprycel for 6 days now and the counts are really great. Took 10 days for the insurance company to not only approve, but for the wholesale distributor to get it to me. My spleen has reduced in size already. Had diarrhea 2 hours after taking each pill, then it stopped and have not had any in 4 days. I do have a little itching with a few accompanying blisters (allergy) just like when I first began the Gleevec, but no other discomforts as of yet. I AM SORRY, MAYBE RAMBLINGPOINT IS..You can never be rid of CML it is a condition that will always be there because the DNA in your body has changed and with the BRC_ABL gene created from this your body will always be fighting this. Gleevec will hopefully keep us from jumping into 'ACUTE' mode. We are really lucky that we are in chronic and not acute mode. Chronic means 'slow', Acute means 'fast. That's all Gleevec is engineered to do, keep us from jumping into 'acute' ML. I would write down all these questions you have, make a call to your doctor, ask the questions, and if you do not like the answers or the answers are confusing or not really clear, then find another onc. Gleevec is NOT a cure. Keep having your blood checked to monitor the counts. There is so much info out on The Leukemia & Lymphoma Society : - Leukemia. just follow all the links and read all the data and before you now it you will be telling the doctor what to do (LOL). Remember they have many patients with many diseases, and although it would nice to know that they know everything about us and our illness.THEY DON'T! So educating yourself is a must in this war against cancer. Let me know. Pat [EMAIL PROTECTED] --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com
[CMLHope] Re: Katy & no Gleevec
Dear Lora, ( My real name is Laura...hehe) thank you so much for your response, everyone else has been great with their responses but there was just something about yours that made me relax. I have my own horror story about affording gleevec, I dont know if you are new or not but a few weeks ago I told everyone how my husband and I had to get a divorce so that I would not loose my medicaid coverage or we couldnt afford the gleevec either. It only cost's me about a dollar on medicaid. It just makes me sick and I keep telling him from time to time I just want to get remarried and we will do what we have to do. But he says he is scared that I will need something and we wont be able to afford it so we stay together just not married. He says after all it is just a piece of paper but as I told everyone else it still bothers me. But he is great so I guess I shouldnt be so obssesive about it. Like I told Judy I think the only thing I am worried about now is that when the CML flares again it will be really bad instead of mild as mine has appeared to be. We must have caught mine reeay early. From what I understand people usually have it for a couple of years before they are diagnosed, my white count never got over 28000 so we must have caught it really early. I have learned since belonging to the CML groups that CML doesnt always follow one phase after the other and sometimes it skips entirely the accelerated phase and goes straight to blast and that is my fear. But I am going to try not to worry about it, just one day off gleevec and I feel pretty good. I still had the stupid headache and my arms still hurt but give it a few days and those should be gone too. Anyway thank you so much for your reply and hope you have a great day!!! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Katy, my dh, Terry, was literally falling apart due to all the side effects from Gleevec and the CML...they were killing him, long before the leukemia would have gotten him. After another long hospital stay, Terry was taken off Gleevec. The scary thing for us was that they didn't do anything about the cancer for several months. CML is somewhat of a slow acting disease & I don't know why I was freaking that if 2 months went by, he would become more ill from the cancer or even die. Just that "fear" that gets hold of ya!! before he started Dasatinib his white cell count did start to rise, but not in huge amounts, but rise it did do..so not like we could ignore the cancer for forever. my only "fear" is that while he is doing s well on Dasatinib, what if the study he is on stops & we lose the free meds, how will we afford them?.and since he is able to work more, will we lose the free care he is getting from our local oncologist? What a merry go round. The cancer center is basing his care based on income and family size. He now has insurance, but due to the massive medical debt, there is no way we will ever recover financially, so that we can't even pay deductibles, etc. Folks mention the costs of the drugs(we were getting Gleevec free from Novartis when we could get them to ship it)it is scary all I can say is take each step and each day as they come..if you are off Gleevec, then just take a few days NOT thinking about CML, etc. We tried to dedicate a day or a weekend on occasion just not talking about cancer...it helped our outlook. You realize that sooner, than later, you will be pursuing other drug therapies if you chooseso just take a few days of a mental break and get a fresh outlook to renew your strength for the next fight. Lora --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: [CMLHope]OFF GLEEVEC FOR LIFE?
Terry, Another reason ...three months...is because he only runs the gene study every three to four months, I guess it takes that long for some kind of change to take place. who knows maybe he thinks I am cured..lol Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Katy, I have to echo Rob's questions on why 3 months? Also I have had one of my docs mentioned he wanted to check for nerve damage, but I told him I did not want the test because I know what is causing my pain, it is a side effect of the Gleevec. Worse case I would try and get a second opinion, I am not sure I would be willing to stay off of Gleevec for that long myself, unless I was becoming intolerent to it, or it was not working. Take care and please keep us posted on what is going on, Terry On 10/9/06, Rob <[EMAIL PROTECTED]> wrote: Why does he want you off of everything for 3 months?Rob On 10/9/06, [EMAIL PROTECTED] < [EMAIL PROTECTED]> wrote: Well I just came back from my Onc.'s office and my counts were good. My white count on the high side of normal at 10.2. Everything else was fantastic. But I am very very nervousHe said said that apparently the gleevec is causing nerve damage so I cant take it anymore. But he doesnt want to switch me to sprycell. He said he wants me off of everything for three months. He did a gene study today and is going to do another one in two or three months and see if the CML comes back. I am kinda confused, kinda excited and scared s___less!!! He also said that the abdominal cramps where I am having them sounds like spleenomegally but he cant feel my spleen so I guess he is going to just keep an eye on that also. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Powered by NewOrleansEmail.Com http://neworleansemail.com --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: [CMLHope]OFF GLEEVEC FOR LIFE?
Rob, I'm not sure that is why I am very nervous. He said to see if the CML comes back, but what I am afraid of is if it does come back it could come back with a vengence, I havent had the problems a lot of you guys have had with mutations and trisomys and extremely high counts, so I am worried that if it comes back it will come back and just skip the excellerated phase. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: Rob <[EMAIL PROTECTED]> Why does he want you off of everything for 3 months?Rob On 10/9/06, [EMAIL PROTECTED] < [EMAIL PROTECTED]> wrote: Well I just came back from my Onc.'s office and my counts were good. My white count on the high side of normal at 10.2. Everything else was fantastic. But I am very very nervousHe said said that apparently the gleevec is causing nerve damage so I cant take it anymore. But he doesnt want to switch me to sprycell. He said he wants me off of everything for three months. He did a gene study today and is going to do another one in two or three months and see if the CML comes back. I am kinda confused, kinda excited and scared s___less!!! He also said that the abdominal cramps where I am having them sounds like spleenomegally but he cant feel my spleen so I guess he is going to just keep an eye on that also. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Powered by NewOrleansEmail.Com http://neworleansemail.com --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: [CMLHope]OFF GLEEVEC FOR LIFE?
Well I just came back from my Onc.'s office and my counts were good. My white count on the high side of normal at 10.2. Everything else was fantastic. But I am very very nervousHe said said that apparently the gleevec is causing nerve damage so I cant take it anymore. But he doesnt want to switch me to sprycell. He said he wants me off of everything for three months. He did a gene study today and is going to do another one in two or three months and see if the CML comes back. I am kinda confused, kinda excited and scared s___less!!! He also said that the abdominal cramps where I am having them sounds like spleenomegally but he cant feel my spleen so I guess he is going to just keep an eye on that also. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Katy and Charliehorses
Judy, I'm sorry for ya...but glad to know someone shares my misery...lol..Your right Charley horse just doesnt look right anyway you put it. I have been having them in my feet and calves and hips also along with my back and they are miserable. I had surgery (C-section and open Gallbladder @ the same time in 1991) and I had had charley horses along the gallbladder incision before but this is on the other side where there is no incision, right were my spleen and liver and pancreas reside. Has to be the gleevec. I was having them really bad in the arch of my feet this summer and right above my ankles on the outside and if I moved my foot wrong they got worse!! I would have them in my hip but they only occurred when Dale and I were..ahemmm well ya know ya know ya know..lol..But these in my left side are awful because there is not much way of stretching them out! Let me know if you find out anything. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "JudyPrusky, Calgary" <[EMAIL PROTECTED]> > > Goodness, is that one word or two? I tried it both > ways and it looked silly either way! > > Katy, I have been having these in my abdomen and > thought it was from some previous surgeries I have > had. But, when I start thinking about it, the > incision was no where near where this is happening. I > also get them in my thighs, groin, calves, feet, > hands. > > Guess this abdominal thing is worth mentioning to the > onc on the next visit in December. I know how you > feel, it's excruciating. I haven't found a solution > yet but I'll share it when and if I ever do! > > Hugs, Judy > > Hugs, > Judy P. in Calgary > > __ > Do You Yahoo!? > Tired of spam? Yahoo! Mail has the best spam protection around > http://mail.yahoo.com > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Abdominal Charley Horses..
Hello all, Has anyone in the group had trouble with charley horses?? I have been having some bad ones in my back over the last six months or so but the worst have been in the last three days abdominal charley horses! Two days ago I had one and then today I had two one right after the other on my left side up under my ribs and a little below the edge of them. They were wicked! I had to bend forward then try to stretch them out by arching my back it was awful and got quite painful. Just wondered if anyone else had, had this problem and what they did? Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: judy <[EMAIL PROTECTED]> Hi Judy its Judy I have been on the 400 since it came out and just this past week I am getting nausues. (spelling?) anyway I think I will see if I can try switching back to the 100;s if it keeps up. Take care Judy in Michigan. dx99"JudyPrusky, Calgary" <[EMAIL PROTECTED]> wrote: Hi all, for what it's worth, when the newer version ofGleevec came out in the 400 mg doses I used it and wassick every time, didn't matter what I tried. I toldmy onc about it and told him that with the 100 mgpills I was at least able to eat my breakfast slowly,taking a pill about every five minutes. So heswitched me back to the 100 mg pills and it makes allthe difference in the world. I still feel a littleicky for a while but it is so much better than the 400mg dose.That's my story and I'm stickin' to it!Hugs, JudyHugs,Judy P. in Calgary__Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nausea & Diarreah
Hey Dave, Promethazine is the same thing as phenergen just remember it will make you sleepy, usually I can break them in half and 12 1/2 mg will settle my stomach and doesnt make me too sleepy. Medrol dose pack is prednisone a steriod they give it to you for bronchitis, infection and other things I dont know about...*S* BUT unless you are wanting to GAIN weight you dont want it!!! It made me hungry as a horse A doctor has to prescribe it. The other thing you asked about...I have NO cluelol..but good luck with it! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Hi Katy, Well, this morning I awoke and had no nausea, what a great feeling. I'm going to stay off Gleevec one more day to see what happens, Saturday will be the 6th day. My Doctor here called in a prescription for Promethazine, but I haven't taken any yet. This way if the nausea comes back after starting the Gleevec again I know for sure what's causing it. Next subject, (Food). Medrol Dose pack, what is that? Is it something that I can get over the counter and where do I go to get it. It's a good thing I didn't get rid of some of my old jeans, I can fit into them now. One more thing, I have a nurse friend back in Indiana that called me yesterday to see how I was doing. I told her my problem and she made a comment about something. Intestinal Permeability Leaky Gut Syndrome. Does anyone know anything about this? Thanks to all for posting to me. Dave Greenberg You can learn more here then from any Doctor, and it doesn't cost you your first born. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nausea & Diarreah
Mike, Maybe the reason Dr.'s are not in a hurry to switch people over is because one of the major side effects of Sprycell is Internal bleeding? Another reason my doc gave me was "you ride a horse till it drops" why mess with something that is working and take a chance that Sprycell would let your counts get out of control? I dont know but that is what my doc says. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "mburwen" <[EMAIL PROTECTED]> > > This thread highlights the fact that Drs. aren't in any hurry to move > their patients from Gleevec to Sprycel. That includes my Doctor. Yet > Sprycel has an anecdotal reputation for far fewer and less intense side > effects than Gleevec (with a few relatively rare exceptions), and there > isn't any statistical data to refute that - at least that I have seen. > Can anyone out there shed light on why this is so? My Dr. says Gleevec > is working, so don't change anything, and, because the Sprycel trials > were restricted to people who could not tolerate Gleevec or for whom > Gleevec was ineffective, there isn't enough data to suggest that > switching to Sprycel is a good idea for people who are successful on > Gleevec. My intuition says "so what." There doesn't seem to be any > evidence that switching to Sprycel causes harm, so why not try it? If > it doesn't work, one can always go back on Gleevec. > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nausea & Diarreah
Dave, Something I forgot to mention in my other reply was that gleevec completely changed my appetite also. I completely lost it. I didnt want to eat either and between that the nausea and the diarrhea I lost 85 pounds the first two years after dx, Three months ago I took a round of Medrol Dose pack and its like it flipped a switch and suddenly I was starving. I gained 30 pounds in two months which totally ticked me off (I weighed over 300 pounds at dx) but since the doc had me stop the gleevec for two weeks then restart it my appetite is gone again (thank the good Lord!) and I have lost 7 pounds in the last five days. That is the ONE side effect I have been grateful for. I get tickled at my mom (she will be 70 in Dec.) she will hug me and say honey you are just wasteing away...I just kinda laugh and say give me a break mom...I still weigh over 200!!! For years and years every one was constantly on me to stop eating so much, now all I hear is you nee d to eatgo figure!!! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Hi Larry, One thing I forgot to add. I don't know if this means anything at all but I'm 67 years old and the color of my urine has changed about the same time that the nausea started.. Let's say that the color rating is from 1 to 8 and (1) being the light side and (8) the darkest. Most people's avg. is no. 4. Mine as changed from 4 to mostly 2 and sometimes 3, now that's odd. And my fluid intake has not changed. My Urologist doesn't seem to be concerned about it. This is my 5th day off Gleevec and I still feel nausea in the morning. If I feel the same Saturday morning I'm going to start back on Gleevec. Their has to be something else wrong. The worst thing is that I do feel like eating at all. Take care, Dave Greenberg --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nausea & Diarreah
Dave, It is the gleevec. I have had trouble with nausea ever since I started it in 2003. Phenergen works better then compazine. Also try taking your gleevec at bedtime, it works better for me that way and I have noticed a couple of others on here saying the same thing. Good luck! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] Hey Everyone, This nausea thing that you all have been writing about, I wonder if this is the same thing I am having. It's been going on for about a month. Mostly in the morning. Been to the Doctor did some test and can't find anything wrong, and the other thing is I don't feel like eating. I have to force myself to eat at all. I stopped taking all med's Monday to see if it will make a difference, I plan to start up the Gleevec on Sunday and see what happens. Any input will help. I started taking Gleevec in Feb. of 2000, that's a long time and never had a problem with nausea before. The Doctor gave me some compazine for the nausea but haven took it yet. I just feel like Crud. Thanks for any input. Dave Greenberg --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: KNEE OPERATION / BONE GROWTH
Steve, Two years ago I had to have an ovarian cyst removed abdominally and had no problems. In fact I have been hurting really bad since last night and since I have had two of these blasted things before I know it is another and will probably have to have it removed also. Just make sure your surgeon knows about the CML so he is aware of the bleeding risk. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: [EMAIL PROTECTED] I'M GOING TO SEE A ORTHOPAEDIC SURGEON ON THURSDAY ABOUT THE SHARP PAIN UNDER MY KNEE CAPS. I'M SURE IT IS THE WEARING ON MY MANISCUS. I MAY HAVE TO FACE THE FACTS AND HAVE MY KNEE(S) REPAIRED. I'M 49 AND HAVE BEEN VERY ACTIVE IN SPORTS . I'VE BEEN COACHING TRACK THE PAST 15 YEARS. HOWEVER I THINK THAT BEING ON GLEEVEC THE PAST 16 MONTHS HAS SOMETHING TO DO WITH THE ADDED PAIN. I REMEMBER SOMEONE IN THE GROUP WRITING ABOT THE EFFECT GLEEVEC HAS ON BONE REBUILDING. IF ANYONE HAS ANY MEDICAL INFO ABOUT GLEEVEC AND BONE GROWTH / REBUILDING PLEASE SHARE IT WITH THE GROUP AGAIN. ALSO WHEN I WAS FIRST D/X MY ONC. STATED THAT NO DOCTOR WOULD DO A KNEE OPERATION ON A PATIENT WITH LUKEMIA. I'M HOPING THAT WILL CHANGE SINCE I AM IN REMISSION. IS THERE ANYONE OUT THERE THAT HAS HAD SURGERY SINCE BEING D/X OR SINCE GOING INTO REMISSION ON GLEEVEC? ANY INFO WOULD GREATLY APPREICIATED. & nbsp; WISH ME LUCK, & nbsp; STEVE --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nausea & Diarreah
Hey Guys, Well after two weeks off of gleevec the pain in my arms, legs and even the neuropathy in my left ankle and toes left! I was sleeping good for the first time in a while. But then I had to go and start taking gleevec again! I started back on it about a week ago and the pain in my arms started coming back within two days also the diarrhea that had finallly gone away for the last six months is back!!! My legs are starting up too. Oh wellI will see what the doc has to say on Monday. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Suzie, I had a simliar experience with Gleevec. I have been on it since April 04 and around late June nearly all of my side effects had leveled off, and I tried to go back to my job. Well to make a long story short, they came back. The nausea, diarreah(in my house the bath room doors are vaccumed sealed..hehehehe. just kidding) fatigue, and bone and muscle pain all came back. About the only one that has maintained a level, is the eye swelling, that rarely occurs anymore. The nausea is now around almost on a daily basis, along with the others...Check with your doc, but for me nearly the exact same thing happened. It was almost like the Gleevec was pulling a fast one on me or something..hehe. But it still is keeping me in remission, so I can't complain. Take Care, Terry On 9/29/06, Suzieq <[EMAIL PROTECTED]> wrote: Hello everyone:I've been on Gleevec now for a little over 2 1/2 years. In thebeginning the nausea & diarreah were pretty rough, but eventually leveled off and I adapted. In fact, barely had any nausea at all.Well, about a week or so ago, it's all come back with a vengence. Iwas up way in to the middle of the night last night & thought I wasgoing to throw up. I did try some Pepto Bismal earlier in the evening,but didn't even faze it. I certainly don't want to be taking any moreprescription drugs.so does anyone out there have any other way ofrelieving the nausea. The diarreah, I can handle prettymuch...just the nausea is what gets to me right now. Is it usualfor these side effects to come & go like this? At first, I tought Ihad caught a "bug," but I am pretty sure it's from the Gleevec. Thanks for any helpam sorry to read of those who are havingsuch a bad time of it.and for those who are so young. No one thatyoung should have to deal with a disease like CML.Keep Looking Up: Suzieq --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nausea & Diarreah
Suzie, ONE word..PHENERGEN! (yes I know it is prescription sorry) It works better then anything. If your doc gives you 25 mg tabs you can break them in half and just take 12 1/2 mg (childs dose) and it will settle your stomach without knocking you out as bad. Good luck. Oh yeah you could also try saltines and 7 up or sprite. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Suzieq" <[EMAIL PROTECTED]> > > Hello everyone: > I've been on Gleevec now for a little over 2 1/2 years. In the > beginning the nausea & diarreah were pretty rough, but eventually > leveled off and I adapted. In fact, barely had any nausea at all. > Well, about a week or so ago, it's all come back with a vengence. I > was up way in to the middle of the night last night & thought I was > going to throw up. I did try some Pepto Bismal earlier in the evening, > but didn't even faze it. I certainly don't want to be taking any more > prescription drugs.so does anyone out there have any other way of > relieving the nausea. The diarreah, I can handle pretty > much...just the nausea is what gets to me right now. Is it usual & gt; for these side effects to come & go like this? At first, I tought I > had caught a "bug," but I am pretty sure it's from the Gleevec. > > Thanks for any helpam sorry to read of those who are having > such a bad time of it.and for those who are so young. No one that > young should have to deal with a disease like CML. > > Keep Looking Up: > Suzieq > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BY THE WAY..........
LOL..Terry ..you slay me!!! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Lisa and Katy, First Lisa...I had a similar experience while on Gleevec. I have never went off of it and have always been taking 400mg. The odd thing is after a few months nearly all my side effects went down to nearly nothing, but then a few months after they all(except the major swelling around the eyes) came back, with the pain being a bit worse, as well as the fatigue? They have stated the same since. The only difference in my counts were that my platets dropped a little then came back up? I have no idea why and neither does any of my doctors. Kind of funky huh?? Katy, Damn right I am concerned, because my doctors told me point blank in front of Regina...If I stop taking the gleevec I will be a goner. Now having said that, I do admit I on occasion(mainly if some sort of special occasion is coming up) take at the most a day or two break. The longest I have been off of Gleevec was five days, and that was due to my former employer being bought out by Bank of America and the resulting change in RX coverage caused some confusion. I do share with you though the whole, "sick of being sick and tired" thing. I have also thought about in the past just letting the chips fall, but that was in a darker time in my life and I would not even think about doing that. Not to mention, Regina would beat me if I tried that..hehehe. Please keep let us know how your doing and go back on it as soon as you can, or maybe try the new meds, regardless, I want no chips falling in your case anywhere;) Take care, Terry On 9/24/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: Terry, Thank you so much for your concern. I can truly feel your sincereity and it really means alot to me. I am taking care, but I have to see I am so relieved to be off of gleevec "legally" even if just for two weeks. I am grateful for gleevec but I am sorry I also hate it..you have heard the old saying "the cure is worse then the disease" well gleevec makes me feel soo bad all the time, sometimes I feel like just stopping it altogether and letting the "chips fall where they may" bt I dont. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" < [EMAIL PROTECTED]> Katy, Please just be careful, I don't want anything to happen with you not taking the gleevec. I hope your doctor does something for you, please take care, Terry On 9/23/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I have been off of gleevec now for a week and the pain in my arms and legs, all the stinging and burning, itching and aching is almost completely gone! Guess it was gleevec. Wonder what my doc will do now? Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" < [EMAIL PROTECTED]> Hi Chrissy, Yeah I have not read up much on Legionnaire's, but from what I do know it is very contagious, so it would not surprise me that it could go through a water supply. About three years ago when I lived in Louisville Kentucky, there was a major problem with a hospital and people coming down with staff infections, that should not have. I think allot of it has to do with poor ventilation systems and such. Think about it, I know when I was working in my office, if a person came down with the flu, for instance, even if they were on the other side of the building, it always made it's way to my side of the building and soon a bunch of people would come down sick. So yeah it is pretty scary stuff. Take care, Terry On 9/23/06, Chrissy <[EMAIL PROTECTED] > wrote: Hi Terry,Yes, that's what I thought Legionnaire's was 'limited' to...I'd heardof air-conditioning units in retirement homes containing the bacteria. I had no idea that it could be carried throughout an entire hospitalvia its water system. Scary.Take care, Chrissy --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BY THE WAY..........
Terry, Thank you so much for your concern. I can truly feel your sincereity and it really means alot to me. I am taking care, but I have to see I am so relieved to be off of gleevec "legally" even if just for two weeks. I am grateful for gleevec but I am sorry I also hate it..you have heard the old saying "the cure is worse then the disease" well gleevec makes me feel soo bad all the time, sometimes I feel like just stopping it altogether and letting the "chips fall where they may" bt I dont. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Katy, Please just be careful, I don't want anything to happen with you not taking the gleevec. I hope your doctor does something for you, please take care, Terry On 9/23/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: I have been off of gleevec now for a week and the pain in my arms and legs, all the stinging and burning, itching and aching is almost completely gone! Guess it was gleevec. Wonder what my doc will do now? Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" < [EMAIL PROTECTED]> Hi Chrissy, Yeah I have not read up much on Legionnaire's, but from what I do know it is very contagious, so it would not surprise me that it could go through a water supply. About three years ago when I lived in Louisville Kentucky, there was a major problem with a hospital and people coming down with staff infections, that should not have. I think allot of it has to do with poor ventilation systems and such. Think about it, I know when I was working in my office, if a person came down with the flu, for instance, even if they were on the other side of the building, it always made it's way to my side of the building and soon a bunch of people would come down sick. So yeah it is pretty scary stuff. Take care, Terry On 9/23/06, Chrissy <[EMAIL PROTECTED] > wrote: Hi Terry,Yes, that's what I thought Legionnaire's was 'limited' to...I'd heardof air-conditioning units in retirement homes containing the bacteria. I had no idea that it could be carried throughout an entire hospitalvia its water system. Scary.Take care, Chrissy --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BY THE WAY..........
Lisa, My Onc. told me to stay off of it (gleevec) for two weeks. It has been one. The pain in my arms and legs is almost entirely gone but in it's place I have had the worst headache I have had in years!!! And yesterday morning I woke up with my head just exploding in a migraine, It hurt at just the thought of moving my arm to get the tylenol #3! But I finally did and took one and a phenergen then went and laid back down, when I got up a couple of hours later it was just like tension in my head and then by last night it left but is trying to come back tonight. I am heading it off though (hopefully) with some tylenol #3 and phenergen before it gets a good foothold. Anyway I have an app. with my Onc. on Thurs. I will let you know what he says. Oh yeah and he doesnt want to change me to sprycell until the gleevec stops working for me. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "lisa mcneil" <[EMAIL PROTECTED]> > > Hi Katy > > How long does your doctor want to keep you off of Glivec? When I have gone > off Glivec twice due to the pain it went away and then came back. It could > take a few weeks to come back. Its up to you & your doctor but it would be > interesting to see if your pain stays away or comes back. For me that is > where the mystery lies. Stopping Glivec improved my pain for a short period > then it starts to come back & eventually its as bad as it always was. I have > been off Glivec for nearly 12 weeks and on Dasatinib for 4 weeks. My pain > went away for 1 week then it has come back stronger & stronger each week.It > is so bad again I have had to stop the codeine and start MS Contin & gt; )morpheine 30mgs. > I hope your pain does not come back. Is it possible for you to change drugs > to Dasatinib? > I am very interested to know how it all goes. Please keep in touch. > > Best wishes > Lisa > > >From: [EMAIL PROTECTED] > >Reply-To: CMLHope@googlegroups.com > >To: CMLHope@googlegroups.com > >Subject: [CMLHope] Re: BY THE WAY.. > >Date: Sun, 24 Sep 2006 02:58:50 + > > > >I have been off of gleevec now for a week and the pain in my arms and legs, > >all the stinging and burning, itching and aching is almost completely gone! > >Guess it was gleevec. Wonder what my doc will do now? > >Hugs, > >Katy > > > >-- > >SHIH-POO Puppies now available! First shot and wormed. Email me for more > >info! > > > >xanga.com/katybug45 > > & gt; >-- Original message -- > >From: "Terry Dailey" <[EMAIL PROTECTED]>> > > >Hi Chrissy, > > > >Yeah I have not read up much on Legionnaire's, but from what I do know it > >is very contagious, so it would not surprise me that it could go through a > >water supply. About three years ago when I lived in Louisville Kentucky, > >there was a major problem with a hospital and people coming down with staff > >infections, that should not have. I think allot of it has to do with poor > >ventilation systems and such. Think about it, I know when I was working in > >my office, if a person came down with the flu, for instance, even if they > >were on the other side of the building, it always made it's way to my side > >of the building and soon a bunch of people would come down sick. So yeah it > >is pretty scary stuff. Take c are, > > > >Terry > > > > > >On 9/23/06, Chrissy <[EMAIL PROTECTED]>wrote: > > > >Hi Terry, > > > >Yes, that's what I thought Legionnaire's was 'limited' to...I'd heard > >of air-conditioning units in retirement homes containing the bacteria. > >I had no idea that it could be carried throughout an entire hospital > >via its water system. Scary. > > > >Take care, Chrissy > > > > > > > > > > > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BY THE WAY..........
I have been off of gleevec now for a week and the pain in my arms and legs, all the stinging and burning, itching and aching is almost completely gone! Guess it was gleevec. Wonder what my doc will do now? Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Hi Chrissy, Yeah I have not read up much on Legionnaire's, but from what I do know it is very contagious, so it would not surprise me that it could go through a water supply. About three years ago when I lived in Louisville Kentucky, there was a major problem with a hospital and people coming down with staff infections, that should not have. I think allot of it has to do with poor ventilation systems and such. Think about it, I know when I was working in my office, if a person came down with the flu, for instance, even if they were on the other side of the building, it always made it's way to my side of the building and soon a bunch of people would come down sick. So yeah it is pretty scary stuff. Take care, Terry On 9/23/06, Chrissy <[EMAIL PROTECTED]> wrote: Hi Terry,Yes, that's what I thought Legionnaire's was 'limited' to...I'd heardof air-conditioning units in retirement homes containing the bacteria. I had no idea that it could be carried throughout an entire hospitalvia its water system. Scary.Take care, Chrissy --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: DISABILITY HELP (SSD)
I personally know of a family who for one (which totally pissed me off) waited to have surgery on their son done (born with club feet) so that he wouldnt be able to walk until he was almost a year old so they could draw SSI on him and then waited to have the other surgeries neccasary for as long as they could so they could continue to draw SSI on him and then the "father" went and applied for SSI on himself claiming he couldnt read! (his brother had done the same thing and was awarded SSI the year before) and HE was awarded SSI I know for a fact the guy can read because he gets online and can read a car manual and anyway I just know he can read. The whole thing is sickning! Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Terry Dailey" <[EMAIL PROTECTED]> Hey Suzie, I will have to check out that article. It really burns my butt when I hear about people like the drug fiend that get awarded SSD. I remember seeing something on one of the news shows before I was dxed and was working, about how various people were busted filing false workmans comp claims, and SSD claims. That was back in the 90's. One guy was drawing it for a bad back he supposedly had, but an investigator video taped him in his backyard pulling heavy brush to a brush pile. The guy was arrested and did some time over that. It ticked me off then, and really ticks me off now. I do not pay taxes on what I get from my private insurance disability, and they are contracted to pay me until 2031(I thought until 2030, but I got a recent notice it was 2031) so even if I do not get SSD I am still okay. I am mainly doing it at the request of the private insurance carrier. For that I have to have my doctor fill out a form every quarter. They do not hassle me, and there is no problems. This is off the subject but I watched a show Michael Moore did(I am not a big fan of his at all) and I have to admit, right now our country seems to have forgotten about the "little guy." The thing with Moore is he stages allot of things and only gives part of the facts when he is trying to prove his point. It was Bowling for Columbine, and was basically a anti-gun docu movie. I am not a fan of gun control laws, but somethings I did have to agree with were these.. There is an ever growing gap between the haves and have nots in this country, and the reasons for some of the problems we have in this country our because the news media is doing nothing but keeping Americans in a constant state of fear. It makes allot of sense when I think about it. It seems every year there is always some sort of big scare that they instill in the American people. Anyone remember the "killer bee" scare from a few years ago? What about the whole Y2K scare, if you turn on any news channel you will see something about murder, rape, and all sorts of violent crimes. No wonder many people in other countries thing we Americans are a bunch of paranoid violent nutjobs. My point of view may not be popular but it is that guns do not kill people it is the people with the guns that do it. I think the media has so many here in the states believing that they can be killed at any moment by so many different things, it has breed a nation of people that are trained to Fear, then consume. For example, use this mouth wash or people will not talk to you, if you have pimples, people will not want to be with you, or use our weight-loss pill or people will also not want to be with you, etc...It is all because there is so much money to be made on making people afraid. Don't get me wrong, Terrorism is something everyone in the world has to be concerned about, but when I found out that at least one of the 9/11 hijackers set off a metal detector twice, set off the wand detector, but was still not searched and allowed to board the plane...That just shows to me that airport employees just failed to do their jobs. Moore brought up the point that the punks that did the killing at Columbine bought their ammo at K-mart. The fact is even though that is a fact, if anyone goes and buys an unusually large amount of ammo, it will get noticed. An example is the recent crack down on Ephedra (spelled wrong). It is a main ingredient of crystal meth, so in my home state of Indiana, you are only allowed to buy so much of it per week, and have to show a picture ID, and sign a form. They also make it now in a gel cap instead of the pill form. I guess the point I am trying to make is that even with the "threats" that face us today, there are ways to monitor things without taking away people's rights. Sorry for the rant, but back on the subject of SSD. I guess the thing that annoys me the most is there are allot of people with CML(and other health problems) that were not as fortunate to have had disability insurance through their former empl
[CMLHope] Re: Fishing for answers...
Trey, My mom is a retired R.N. she thought the hip BMA,BMB was odd. She said that they used to only do them from the sternum. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "Trey" <[EMAIL PROTECTED]> > > You seem to be responding well, and the FISH test results are > definitely going in the right direction. > > The FISH test looks for cells that have the Philadelphia Chromosome > mutation (which means they are leukemic cells). A sample of cells, > either from the marrow fluid or from the circualting blood, are given > something like a "dye" that turns the Philadelphia Chromosomes yellow, > which can then be seen under a microscope and counted. FISH generally > looks at a sample of up to 200 cells randomly selected. > > Here is a good website describing FISH and other testing: > http://www.cmlmedicalmonitor.com/medical-monitor/education/ayd_response.asp?tria > l=show > > Here is a link to a site that shows what a FISH test result looks like, > with the Philadelphia Chromosome showing up as yellow: > http://home.comcast.net/~john.kimball1/BiologyPages/C/CML.html > > Some people don't have much fluid inside the hip bone cavity. That > fluid (aspirant) is used to do a marrow FISH test. If the doc can't > get a sample of fluid from your marrow, then both FISH and PCR can be > done on the blood, not just on marrow fluid. The sternum thing sounds > odd, and there usually is not much fluid in the sternum. I would > prefer to just have blood FISH and PCRs, since the results are not much > different than marrow tests: > http://patient.cancerconsultants.com/news.aspx?id=36694 > > A marrow biopsy (BMB) is still a good idea on an annual basis to check > for possible new mutations. The biopsy does not require fluid from the > marrow, just a tiny piece of bone and the marrow th at clings to it. > > As for me, I have had FISH and PCRs done on both marrow and blood. My > Onc says testing the blood is just fine, and tells her what she needs > to know. > > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: TOLD TO STOP GLEEVEC.......
Lisa, I am very lucky indeed even if he isnt. I love my Onc. he is a great guy but I honestly get more out of my appt.'s with my neuro. since he understands exactly what I am going thru. I will let you know what he says. Hugs, Katy --SHIH-POO Puppies now available! First shot and wormed. Email me for more info! xanga.com/katybug45 -- Original message -- From: "lisa mcneil" <[EMAIL PROTECTED]> > > HI Katy > > I have an appointment in December with a neurologist. It was the earliest I > could get in. I would be extremely interested to know how you go at your > appointment in October. You are fortunate that the doctor you are going to > see also has CML. Hopefully he will understand your pain. I seem to have > alot of trouble trying to get doctors to understand my different types of > pain. > Best of Luck > Lisa > > > >From: [EMAIL PROTECTED] > >Reply-To: CMLHope@googlegroups.com > >To: CMLHope@googlegroups.com > >Subject: [CMLHope] Re: TOLD TO STOP GLEEVEC... > >Date: Wed, 20 Sep 2006 14:34:26 + > > > >Lisa, > > Lyrica helped at first, but now not as well. It helps with the > >neuropathy pain but not this new pain. It might if I could take a higher > >dose but I cannot even take half the recommended dosage on a regular basis > >because it messes my head up so bad. When I first started taking it I was > >supposed to be taking a 75 mg cap twice a day but could only take one > >because it knocks me out after about two to three hours. I had been taking > >one a day for two weeks when my husband and I sat down to do the check book > >together, I had made $500 worth of mistakes I stopped taking it > >immediately. I had noticed that I was transposing numbers and writing down > >innappropriate things like I was at a grocery store called Super Valu and > >was making out the check and instead of writing Super Valu on the check I > >wrote "head"..lol..embarrassing. ... and then about thirty > >minutes later in the Mc D drive thru writing another check to them I wrote > >"Super Valu"??? Then when we found the mistakes I > > knew it was the Lyrica. When I stopped it it got better. So now I only > >take it p.r.n and never more then a couple of days in a row if I go over > >two or three days I start having trouble again. Unfortunately the Dr's in > >this lil hick town that thinks it is a big city and a mega medical center > >consider you a "drug addict" or a "drug seeker" if you need anything > >stronger then tylenol or darvocet for more then a week dont even think > >about getting Lortab or much less MORPHENE!!so you just have to > >deal with it. It's funny cause about four years ago they had this big > >article in the newspaper and did segments on the local news about how the > >local hospitals and doctors were going t o stop worring about drug addiction > >when it came to pain because curing the pain was the biggest part of the > >battle to get well...did it change? NO! Anyway.I am seeing a great > >neurologist who happens to also have CML I have an appointment with him in > >October hopefully he can figure this out, becaus > >e it is driving me crazy! > >Hugs, > >Katy > > > >-- > >SHIH-POO Puppies now available! First shot and wormed. Email me for more > >info! > > > >xanga.com/katybug45 > > > >-- Original message -- > >From: "lisa mcneil" <[EMAIL PROTECTED]>> > > > > > > > I also have experienced this severe pain for years. My doctor stopped > >Glivec > > > for 1 month back in March. My pain improved then in week 4 off Glivec it > > ;got > > > worse again. I stopped Glivec 3 months ago for 2 months. My pain quickly > > > improved & in week 3 I was pain free. The pain then slowly came back > >worse & > > > worse each week even though I was not on Glivec. I started Dasatinib 3 > >weeks > > > ago & my pain is continuing to get worse as it was when I was on Glivec. > >My > > > next step is to see a Neurologist to search for some answers. > > > > > > I will post my results once & if I get any. > > > > > > Does Lyrica help your pain. I was taking 35mg of morpheine & Lyrica. I > >kept > > > increasing the dose of Lyrica until I was on quite a high dose, but it > >had > > > no effect on me. > > > > > > I am on 8 codeine a day but my pain is getting worse. I need to start > > ; > morpheine reluctantly again.
