Hi Richard and hang in there. I wake up with nausea every morning which I think is the hydrea. Do you eat a big meal with gleevec? I know I had to and no spicy foods. Your success on gleevec has been great. It quit on me after 5 years. You could just have a bug. Good luck and blessings. Jeanie
Sent from my iPhone > On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope <cmlhope@googlegroups.com> > wrote: > > Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 > days all of a sudden for the last 4 days I'm having nausea problems. I'm > taking some promethazine that helps some what but it's not a fun thing. I > have no idea what started it either. I had this problem before when we lived > in Springfield, MO. I got over heated and got hit with nausea every day for a > little more then 2 years then I awoke one morning and it was like someone > turned off the switch and it was gone. This time of the year it's not hot > here so I know that's not what caused this problem. > > I'm going to take a Gleevec break for a week or two to clean out my system > and hope that I get back to normal. I did this before about 6 years ago when > I had a sinus infection and the doctor back in Indiana put me on and anabolic > that interfered with my Gleevec so we stopped Gleevec for 26 days. After > getting blood work some cancer cells did show back up in my blood work but > after stating Gleevec again the next test showed that I was clean again. > > My doctor at that time was doctor Tallman and he gave me a call and said > "well if it worked before it will work again" and that was that. So I have > my fingers crossed to see what happens. I can't stand this nausea problem, > my heart goes out to the women that have babies and have to put up with > nausea. I just hope it's the Gleevec again and not something else. My blood > counts are O. K. so I'm not worried about that. This does not help my > anxiety problems > > Will keep you all up to date as how things go. > > greenie > > In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time, > rbhuffm...@gmail.com writes: > Seventeen and on my first adventure this wonderful world we live in. > > Richard H. > >> On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: >> That's cute Richard--how old were you? >> My IV went in good-no swelling. >> This morning I am sick-- sore throat and mucus. >> Glad everything went good Sherri but couldn't they give you something for >> pain?? >> Blessings Jeanie >> >> Sent from my iPhone >> >> On Jan 23, 2015, at 12:03 AM, Richard H <rbhuf...@gmail.com> wrote: >> >> May I add my sea story of needles, I don't like needles but do not have a >> phobia. When I arrived at boot camp the first thing was get our shots. We >> walked through a line getting shots in both arms as mentioned. They were >> using hugh syringes and had large pillows with the needles that was changed >> while we were stepping in front of them. Someone was calling a slow cadence >> of step, step. As each recruit stepped He was given a shot in each arm. All >> of a sudden the corpsman I was getting ready to step in front of yelled >> "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his >> arm. When I received the 4 pricks for allergy testing I then had to sit in >> the dentist chair I promptly passed out. >> >> Richard H. >> >> >> >> >> On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: >> Jeanie, Needles lord knows I hate them. The first time I had a blood test >> it was to get married. My Doctor lived 3 blocks away form me and I worked >> for him when I was in High School. They did the blood work and he walked in >> after and took one look at me and he put is hand behind my head and pushed >> it down and told me to pushed as hard as I could to keep me from passing out. >> >> Then when I went into the Navy I was on active duty for a year and a haft >> they found out that I didn't get any of my shots. Well you know what >> happened then, I received them all at once, both arms. So years go by and I >> end up with CML and we all know about needles. Yes, some are good and some >> are bad. I had to get blood work this Monday and I think the lady took the >> needle outside and scraped it on the pavement plus I think it was square and >> bent. I think it when through my arm and out the other side. >> >> And the first BMB all they gave me it was so much fun that I asked them to >> do another one. Ha, Ha. After about 10 or 11 of them I asked to be put into >> lala land which they did but I had to have someone drive me home. My wife >> has to give me a shot of testosterone every two weeks, the needle is 1/1/2 >> in long another fun shot. So for me they do the molecular blood work and no >> more BMB. Thank you. >> >> Take care and hang in their, >> >> greenie >> >> In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, >> cml...@googlegroups.com writes: >> Hi Marty. >> How are you? >> I am going to have the endoscopy today. First I will go to the blood area >> and have blood checked. Then to dr for consultation. Then to have the >> endoscopy. >> Long day. >> Needles are no fun but we get used to them. Some draws are good some bad. >> Pray for me and all in need. >> Love Jeanie >> >> Sent from my iPhone >> >> On Jan 21, 2015, at 7:52 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Jeanie, >> >> You have been through so much it's about time that you got a break or two. >> Not feeling that IV go in and no black and blue afterward then having a BMA >> with little or no pain. >> >> Well, two out of two ain't too bad is it? <360.gif> >> >> When I was a kid I had a phobia, and it was needles. I hated them that on >> the day my school was giving shots I told my mother that I was sick and >> couldn't go to school that day. So, she kept me home and I went to school >> the next day. Guess what? I got the shots that day. >> >> OK I'm in the army and in those days you had to walk down an isle to get all >> of your shots. They used a machine that looked like a gun and I thought it >> wouldn't hurt. Guess what? It did! >> >> Then when I was 45 years old I got CML and went for a bone marrow >> transplant. So many, many needles that I just got used to them. Then having >> 17 BMB's. It looks like needles and me are just like twins, always together. >> Not to mention that one of the aspiration needles break off and lodge in my >> illiac. So in go more needles and an in-cession follows to remove that >> needle. Then four stitches, of course using another needle. >> >> So about 4 years ago my kidneys fail and I go on dialysis. Two very large >> needles are stuck into my arm every Monday, Wednesday and Friday, and they >> stay in there for four hours. >> >> I wouldn't say that I have gotten used to them but maybe I just don't pay >> that much attention to them anymore. >> >> So much for any phobias., but life goes on. Hopefully I will be getting >> some more needles for a kidney transplant soon. Now doesn't that sound >> warped from someone that had a phobia against needles? It just all depends >> on how one looks at it I guess... >> >> 18's, >> >> Marty >> >> >> >> On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope >> <cml...@googlegroups.com> wrote: >> Hi Marty and thanks so much for that uplift. I have been dreading it for >> some reason. >> I pray that you get your kidney soon-- I know those fistula operations are >> tedious. >> The procedure I dread most is the IV. >> My last one last week was a miracle. The nurse put it in and I didn't feel >> a thing. Later I looked for the black and blue mark left by the IV and no >> sign at all. I have never had this before. It's usually black and blue and >> swollen. >> My Bma has hurt very little. Thank The Lord!!! >> >> You are our spice of life and thanks for being there for. And thanks to all >> if you for your prayers and uplifts. >> Blessings >> 18's jeanie<emoji_u1f42c.png><emoji_u1f42c.png> >> >> >> Sent from my iPhone >> >> On Jan 20, 2015, at 10:06 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Jeanie, >> >> Good luck with your endoscopy. They usually do put you out for that >> procedure. I don't know if they will use a Propofol cocktail but if they do >> you will go to sleep and when you wake up you will still think that the >> procedure was not yet done. Very good sleep with no after effects. I have >> had at least a dozen of them. Every time they operate on the fistula in my >> arm they use it. It looks like I will be going in for another procedure for >> my fistula, there is a narrowing in two sections. This will make 13 >> procedures in the last 12 months. I sure hope that a kidney transplant will >> be coming soon. >> >> I have to share a story about my anesthesia doctor. She >> knows me so well that we are on a first name basis. So, the last time that I >> had to be put out I asked her if I could "knock myself out" Of course I was >> only kidding but she told me that she would let me do it to myself. >> >> So, i'm in the operating room and she is standing over me and she puts the >> oxygen mask on my head and as she is holding the needle that is connected to >> me IV she tells me to put my thumb on the plunger but not to push it until >> she tells me so. >> >> Ok I got my thumb on the plunger and she tells me to push it very slowly >> when she counts to three. So, I'm waiting and her thumb is on top of mine >> and she counts "one" then she starts to count "two" and the next thing I >> know is that I am waking up in the recovery room. >> >> When she came to see me I asked her if I was the one that knocked myself out >> and she just smiled. >> >> By the way this Propofol is white in color and looks like milk. >> >> Humor is the spice of life.<360.gif> >> >> 18's, >> >> Marty >> >> On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope >> <cml...@googlegroups.com> wrote: >> Hi Marty >> Yes a fl cracker--hope you are great today!!! >> I am going to have an endoscopy thur. >> First one--they put you to sleep. >> Blessings >> Jeanie >> >> Sent from my iPhone >> >> On Jan 19, 2015, at 7:55 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Jeanie, >> >> You sound like a real southern gal. As for me, I'm just a good old plain >> city boy that also loves to go fishing. When I was a kid my father would >> take me out deep sea fishing and my favorite fish was blue fish. My mother >> used to cook it in milk to get rid of the fishy taste. It was really good >> but I can't seem to find blue fish here in Florida. >> >> Anyway, I am kind of surprised to hear that your having a difficult time >> with Hydrea. That was the first drug that I got along with Allopurinal when >> I first had CML. >> >> Both of those drugs never gave me any problems except if I took too much and >> it would take about a week for them to start working. Once they did then my >> blood counts would drop sometimes drastically so the doses had to be >> adjusted, but I never got sick or anything like that from them. >> >> Good luck, >> >> 18's, >> >> Marty >> >> On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope >> <cml...@googlegroups.com> wrote: >> Hi all, >> My family all love to fish, and we keep and eat everything legalhehe. >> I was reared on good fried to a golden brown perch that live in the Fl lakes >> and rivers. >> There is nothing better than good fried mullet with their roe fried to t >> golden brown. >> We love it with grits and tomato gravy and cornbread. >> I am feeling some better, but taking Hydrea is no fun at all. Knocks you >> for a loop. >> I haven't heard about the pontatinib yet. >> My doctor says its a powerful drug and has to be kept monitored every week. >> Well all the drugs are powerful as far as I am concerned. >> Good luck everyone, >> Jeanie<3 >> >> >> In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> Hi again Greenie, >> >> Like you said, don't look back but only forward. >> >> By the way, I am an animal lover whether it be dogs, cats, birds or fish. >> >> I am glad to hear that you threw back those fish where they belong. >> >> 18's, >> >> Marty >> >> On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope >> <cml...@googlegroups.com> wrote: >> Marty, My aunt left me some stock and money and one of the stocks was >> Novartis and my stock guy told me to sell it. That was before Gleevec was >> in any kind of study. Because of him I also lost $43,000.00 and I pulled my >> money out and fired him. If I, would have, could of. Of course I wish I >> would have kept some of my early Corvette's that I had I would be worth a >> more money then Novartis. But can't look back, just look forward. >> >> Thanks for your reply, also I live in South Fort Myers not far from the >> beach. In fact I went fishing yesterday by the beach and caught 8 fish. >> But I do not keep any, back into the water they go where they belong. >> >> greenie >> >> >> >> In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> Hi Greenie, >> >> First, where in Florida do you live? I am on the east coast, Boynton Beach. >> If we are not to far maybe we can do lunch one of these days. If my memory >> serves me right I think that you may be in Ft Meyers??? If so then I guess >> that lunch is out of the question... >> >> About STI571. Do you know how it came about? As >> everyone already knows Dr. Brian Druker who was the one that had first >> discovered it. He tried finding a drug company that would produce it and >> finally found Novartis which was at the time an agricultural drug company. >> >> One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and >> it was working. Novartis didn't want to produce it in quantity >> because of the start up costs. Both Zavie and I got in touch >> with one of the principals of Novartis and told him that we may be able to >> bring a lot of investors into the company. >> >> At the time there was another CML site and we got on and asked if people >> would like to invest in the Novartis stock. At that time their stock price >> was $1,200 a share but there were also what is called American registry >> shares of Novartis that was selling for only $20.00 a share. >> >> Everyone started buying those shares and Novartis then started production >> but only after it was approved by the FDA which normally takes about 10 >> years. With pressure being put on the FDA STI571 was approved in about one >> and a half years, and became Gleevec. >> >> I bought many shares of Gleevec at $20.00 a share and have nor will I ever >> sell them because of my support for Novartis. As of my December stock >> portfolio Novartis is listed at 92.6600. Novartis stock has continuously >> gone up and up over the years. >> >> I am however disappointed in the price they are getting, most notably there >> are people with CML that can not afford it. Now Novartis does have some >> options for those that are having a difficult time but it still would be >> nice if Novartis would look back at what they were and what they are now, >> and maybe consider dropping their price for Gleevec. Wishful thinking? Maybe >> but maybe not, hopefully... >> >> But Greenie, as you mentioned it is all about greed and money. >> >> 18's, >> >> Marty >> >> On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope >> <cml...@googlegroups.com> wrote: >> Thank you Marty, Everything you wrote is so true about Gleevec and CML. >> It's unfortunate that greed and money has to be in the equations in the >> final outcome. After Interferon that almost killed me all that was left was >> Hydrea. So when Doctor Tallman called me and wanted be in his study for >> STI571 I had no idea what was going on. Within 3 months I was 85% clean and >> after 6 months I was clean. Yes their have been over the years some up's >> and down's put that's part of life. Like my late Aunt used to always say >> when she was in her 80's I just take one day at a time. >> >> I wound like to see a cure in my life time because the old hour glass is >> starting to run low on sand.. And the way these people drive here in Florida >> the end could come anytime I leave the friendly confines and that's not any >> guarantee because most of the people speed and run the stop signs in this 55 >> and older community. >> >> Keep in touch, >> >> Greenie >> >> In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> >> Hi Greenie, >> >> So you have been on Gleevec for 15 years. That is something good to know >> because what would you have done without Gleevec? This drug is responsible >> for saving countless lives. Thank GOD it is here or you wouldn't be here >> right now. >> >> If it weren't for dialysis neither would I be here right now. This is the >> advancement of what medicine has on our lives today. I always say that there >> will be a cure for CML and you can mark my words it WILL come soon. Just >> like all of the things that were not around years ago now they are coming. >> >> GOD bless you Greenie! >> >> 18's, >> >> Marty >> >> On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <shannon...@gmail.com> wrote: >> Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 yrs >> after dx) >> Shannon >> >> On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: >> Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting >> to retain fluid around my ankles a little but that could be and age thing. >> 75 years old. >> >> greenie >> >> In a message dated 1/9/2015 7:53:41 A.M. >> Eastern Standard Time, cml...@googlegroups.com writes: >> Hi Richard and thanks for the update. My onc doesn't like for me to be >> informed either; he just ignores what I say and goes on to tell me what he >> thinks. >> My uric acid was high along with my WBC and Platelets. He seemed to be more >> concerned with the high uric acid--even called me on my cell personally >> twice; never had that happen before. >> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the >> same thing they did 11 years ago when I was first dx. >> He took another blood sample to see if I have a mutation against the >> Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. >> Is five years a cut off point? Has anyone else have this happen? Anyone >> else been on Hydrea after tki? >> Going next week to Moffitt to see if I have the mutation. Will let everyone >> know. >> The leukemia has reared it's ugly head once again!! >> Pray for me and everyone in need. >> Blessings >> Jeanie >> (18) >> >> >> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >> rbhuf...@gmail.com writes: >> WOW! Just read todays posts. I am praying for >> the group. I will add my problem to the list. Dec. 30 I contacted ONC >> about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. >> His nurse called that he was out of the >> country on vacation with his family. She checked with the DR. covering for >> him and he asked me to stop Gleevec as he >> thought I was gaining weight too fast also. My ONC did return to the >> office on Monday but finally had a conference with his Associate and he >> agreed with that decision. They both thought that I should be on a >> different treatment. My ONC was to draft an e-mail to the VA ONC (the one >> controlling my prescriptions) about my reaction to Gleevec and to recommend >> the treatment he thinks I should be on. So I am still in a wait and see >> stage. My ONC tells me I am too informed about my condition and that >> challenges most blood cancer specialists that rarely see CML. >> So let the fun and games continue. I am still feeling great, but the >> "Gleevec Brain" was also starting to show itself, but nine days off has >> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >> >> As always, "life" and may your tomorrow be beautiful and better than today. >> >> ... > > -- > -- > [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-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [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-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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