Hi Jeanie, First thing, don't be concerned with changing you'r doctor. Moffitt is a big place and I am sure that this new new doctor will take good care of you. just give him or her the chance to know you, and may i suggest having your current doctor get in touch with your new doctor and let them acquaint each other.
Our friends and family's are what keeps us going because they care about us, well mostly anyway. Now do i take any Opiates? Well there was a time that i had to, but let me explain: When i was in that plastic bubble for many months receiving my BMT i had so much pain caused by *mucocytes from the Chemotherapy and Radiation.* Similar to terrible mouth sores that go to most of the mucus membranes from your lips through your entire digestive track including my "solid waste excretion point", causing extreme uncontrolled pain. Worse yet was that i was not allowed to eat any solid food but kept me on IV nutrition called TPN which caused me diarrhea. It was so bad that at first they would try and have me gargle with Viscos Lidacaine but it did absolutely nothing for me. They then tried Mycostatin. Just made me throw up. Then they brought a Morphine drip and there was a button on it so i could press it whenever i needed it. All that did was to make my hallucinate and caused little or no relief but they kept on on me because i would eventually go to sleep, but once i got up the pain was also back again. So much to the point i became addicted to it. It took me by my own will and couple of months to end my addiction but the pain was still there so i decided to not use any types of Opiates again. I once helped a young woman about thirteen years ago who was about to go through a BMT and advised her of what mat happen to her after she started her BMT which was in the same environment that i went through and mentioned about the *mucocytes* and she paid attention to what i said. Yes she did get *mucocytes and suffered through all of that pain but she knew how to handle it, and ended up dealing with it. Mind **controlling** her body....* You may always hear me say that your mind also can control your body, and i learned that it did. I want to let anyone know that if you ever need to take any opiates then only in most cases you may need to but you also have to try some other things if you ever have to. I learned from my nurse that came into the bubble that i had to live in. First she had to gown up and come into that bubble completely serial, surgical gown, hat, booties, mask actually two sets, and had to stay down wind of me because it was actually a laminar air flow chamber which filtered air through a heppa filtration chamber behind me blowing the air from the back of me through a special vent at the end of the chamber. She stood next to me and whispered three words into my left ear "it's only temporary". She then walked out and i was left with those three words which i took advantage of. I immediately stopped that Morphine drip and put my mind in another place, as much exercise that i did within that bubble and waited until my white blood cell counts went to beyond 1,000. That was the magic number. After all of those months i was finally released. I want to tell you something: Remember that was almost 30 years ago and things have been so much better then it was then. Now the point is that if you were to ask me would i do all of this again but back in that time, my answer is YES because of what i learned and have the ability of passing it on to others. You now know some personal things about me but if it can help someone else then it is well worth it. Learn something new every day. Life is a very delicate thing and never sell yourself short even by one day of it. 18's, Marty On Sat, Dec 23, 2017 at 2:28 PM, 'Jeanie' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Marty > Love the way you expressed that. Yes we can still do so much and we are > here still to live our friends and family. > Do any of you take opiates for pain or if you did and quit I would like to > hear your experience with it. > Weather mild in Florida for Christmas. > My doctor, that I have been under for 7 years is retiring and I won't see > him anymore. I've got to make a decision on what to do in Moffitt. I think > they have given my care to another doctor but a little nervous changing > doctors after so many years. > It will ok no matter what. Meet the New Year with all it brings with your > Warrior gear on and ready to fight. > Merry Christmas to all. > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Dec 23, 2017, at 7:32 AM, Myvety2k via CMLHope < > cmlhope@googlegroups.com> wrote: > > Mary, you got that right. > > greenie > > In a message dated 12/22/2017 4:47:42 P.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Hey, we got a Jeanie, and we got a Greenie in here. Life doesn't get > better. > > So Jeanie, you have this pain in you right little finger (we used to call > it our (pinkey) Hum right little finger? Well so do i. But not my legs, > hands and most of my bones BUT my left elbow and my neck really hurt but > especially my left elbow but they have a right to. All of them except my > left little finger. Do you know why? Well the little finger has my friend > living inside of it. His name is Author Right-es But the rest were > severely broken when i broke my neck in three places along with my left > elbow and had these metal plates, screws, nuts and matching bolt put inside > of me. Can you imagine that nuts and bolts? Oh at times i have a pain in my > butt but that doesn't really count. > > So maybe we should consider that we are getting older or you on TKI's or > both of us having Arthritis? > > Who knows, but the fact that we are still alive are all migrating > circumstances, > don't you think...👋 We can see we can pee we can hear, well for the most > part for me anyway. > > We can walk we can talk can do most everything that we can do. Oh yea I > almost forgot we can eat and drink. So let this be a lesson for us, right... > > 18's, > > Marty > > > > > > > > > > > > > 9 > > On Fri, Dec 22, 2017 at 3:18 PM, 'Jeanie' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi all, >> Have you considered Moffitt cancer center. I go there and like it. You go >> to the blood center and get your blood checked and then in about an hour >> they are faxed over to doctor and you see him. I go every three months. >> I was wonder if any of you have your bones aching? My right little >> finger and hand ache and legs hurt sometimes at night. I've been fighting >> cml for almost 14 years and never had this. Blood counts are all good. >> Thanks all. >> >> My Motto: >> Faith and Pills >> With Love >> 🐠18's >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/2015 >> Doctor Balducci Moffitt Cancer Center >> >> On Dec 21, 2017, at 6:56 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Listen Greenie, >> >> This is what i do because of a promise that i once made to GOD. Let me >> tell you about this. >> When i was about to receive my total body radiation almost 30 years ago, >> >> just before they were about to close and lock that radiation chamber >> door i got down on my knees clasped my hands in front of me and prayed to >> GOD asking HIM if he would spare me i would help people that were in my >> situation that i would try to help them. So far i have helped 1,286 people >> in the past 30 years, and wrote my journal about each and every one of >> them. This will never be published because of confidentiality reasons, but >> on occasion i will send some of them parts of my book in order to try and >> help them. >> >> Listen i am no saint just a plain human being but someone that once made >> a promise to GOD and i am still here after many many death defying things >> that i have gone trough. And that is why i do what i promised to do. I hope >> that you understand why i do what i do... >> >> There is also why i write 18's when ever i end any posts that i make, >> because that is what i believe. 18's to me represents LIFE. >> >> If you care to send me your personal email address i would like to send >> you something. Mine is wa2yyx@gmail,com >> >> 18's, >> >> Marty >> >> On Thu, Dec 21, 2017 at 4:28 PM, Myvety2k via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >>> Marty, I want to thank you for your fast reply, I hear you. I do have a >>> Nephrologist and he had me get some blood work last month and he seems to >>> be O.K. with the results. I do have the paper work and will scan it and >>> send it out so you can check it out. I want to thank you so much, you have >>> made me feel so much better and I will listen to what you wrote me. Again >>> I want to thank you. >>> >>> Greenie >>> >>> In a message dated 12/21/2017 11:31:29 A.M. Eastern Standard Time, >>> wa2...@gmail.com writes: >>> >>> Hi Greenie, >>> >>> First of all, you mention that you are worried. Why may i ask are you so >>> worried? When people worry about things that they have little or no control >>> over then it not only effects your mind but also your body. I know all >>> about this because that is exactly what i used to do and i learned to >>> direct my mind in more productive ways. Now just try to relax and get >>> yourself going in the right direction. >>> >>> Now you mention about CRI so read this.. >>> >>> *CRI* (color rendering index) is a measure of how accurately a light >>> source illuminates objects' true colors. Our LED lights have *CRI* values >>> of up to 98, indicating that our LED lights are able to produce white light >>> that approximates halogen or incandescent lighting and natural daylight. >>> >>> It however has some effect on your kidneys because if they are having >>> problems than it is a very simple thing to just go to a Nephrologist and >>> see what is happening and why. >>> >>> As you mentioned the normal Hemoglobin count for women should be from >>> around 13 to 17 however not necessarily for men because men don't have >>> their time of the month as woman do, so men require a bit less of >>> Hemoglobin. >>> >>> Now a count of 10.7 shows that you are enemic and that can from a verity >>> of different things. One being the effects from your TKI being Gleevic >>> which i think may be the cause, now mind you I am not a doctor but someone >>> that does a lot of research into things that i have already been through. >>> >>> Another thing would be kidney problems which i kind of doubt because >>> your doctors haven't mentioned it. Do you know what your >>> >>> *Levels* of *creatinine* in the blood reflect both the amount of muscle >>> a person has and their amount of kidney function. Most men with normal >>> kidney function have approximately 0.6 to 1.2 milligrams/deciliters (mg/dL) >>> of *creatinine*. Most women with normal kidney function have between >>> 0.5 to 1.1 mg/dL of *creatinine*.. >>> >>> My Creatinine level was 8.2 before i started on my dialysis and i had to >>> go onto dialysis which lasted for four years. Then i was able to get a >>> kidney transplant from a 20 year old deceased man who was anonymous, and >>> about two weeks later it dropped down to 4.1 and kept dropping to where it >>> is now at .8 and it now stays there. Remember, i have only one kidney >>> while most other people have two kidneys so i know that having only one >>> kidney is doing very well for me, and no more dialysis for me anymore. >>> >>> What you did mention is that your counts are now at "My white count is >>> find >>> at 5.8). Iron was 88 (50-212), Iron binding capacity was 281 (250 - 450)". >>> Which >>> are quite acceptable and very good for you. >>> >>> And speaking about your kidneys let me give you some information. When >>> my kidneys started to fail i noticed that my Hemoglobin also was dropping >>> especially after i began to receive dialysis. They were at 14 then would >>> gradually drop to being 9.9 and that was the magic bullet that triggered >>> that i would be able to start receiving Procrit or Epogin injections which >>> brought my Hemoglobin to usually 11 and it would take about a week. Then a >>> few weeks later another shot and so on. The reason why is that your kidneys >>> produce a *hormone that is sent to your bone marrow that stimulates Red >>> Blood cells into your bone marrow. >>> **Erythropoietin* (*EPO*) is a hormone produced by the kidney that >>> promotes the formation of red blood cells by the bone marrow. The kidney >>> cells that make *erythropoietin* are sensitive to low oxygen levels in >>> the blood that travels through the kidney. >>> >>> This is what happened to me so i know what i am talking about. Ever >>> since i received my kidney transplant about two and a half years ago my >>> Hemoglobin has gotten to be around 14 >>> >>> Now i am not saying that you have any problems with your kidneys but i >>> am puzzled why did your doctor mention about CRI? As I mentioned why not >>> go to see a Nephrologist . Couldn't hurt. >>> >>> Another suggestion that you have already mentioned, and because you have >>> a smart doctor looking after you why spend over $600 to fly to Chicago when >>> you have loads of very fine doctors in Florida especially in your area? >>> >>> Now I have given you a lot of useful information and hopefully it will >>> help you and do you know why? It's because i was there and had to go >>> through all of this and i learned what i had to do, and besides your worth >>> it! Yes you are. Just as was my friend Lottie. She did a lot of research as >>> well in her time which i never forgot... In fact so did Zavie, >>> >>> Now finally, since AOL is going out then you already did the right thing >>> by switching over to another (FREE, I love that four letter F letter word) >>> internet provider. You also may want to get another F word like gmail just >>> in case as a backup. >>> >>> Please, please Greenie try to stop worrying, just take it one day at a >>> time. You know it will all work out. >>> >>> 18's, >>> >>> Marty >>> >>> On Thu, Dec 21, 2017 at 7:10 AM, Myvety2k via CMLHope < >>> cmlhope@googlegroups.com> wrote: >>> >>>> To all of my CML friends and care givers. >>>> >>>> I took a flight to Chicago Dec. 6th to see my cancer Doctor get blood >>>> work. A week later she called me to tell me that my Hemoglobin was down to >>>> 10.7 and the norm is 13.0 - 17.5. My Hematocrit was 32.1% and the norm is >>>> 38.0 - 50 %. >>>> She wants me to get a Bone Marrow test here in Florida because the >>>> airfare to Chicago would be $601.00. That's not going to happen. I'm also >>>> taking Folic acid for the last 6 months (1mg). Folate is 16.7 >=5.9. >>>> >>>> She sent my other cancer Doctor down here a fax as to what she wants. I >>>> have and appointment set for Jan. 2 and talk to him about what to do. (I'm >>>> worried). She made a note to him that I also have CRI which may be >>>> Contributory. >>>> >>>> So back in 2010 my counts on these two item were Hemoglobin 13.3 and >>>> Hematocrit was 39.0. >>>> >>>> So back in 2015 my counts on these two items were Hemoglobin 12.0 and >>>> Hematocrit was 36.1. So the counts are coming down and I think it's from >>>> the Gleevec. >>>> >>>> My white count is find at 5.8). Iron was 88 (50-212), Iron binding >>>> capacity was 281 (250 - 450). >>>> >>>> So anyone that may have some answers that may make me feel better just >>>> hop right it and I will very happy to hear from you. >>>> >>>> ALSO, I don't know now to do it but AOL is no longer going to be as of >>>> Jan 15. My new email address is (myvet...@comcast.net) and it's free >>>> for me and much better. >>>> >>>> Any feedback would be deeply appreciated. >>>> >>>> Thank you all and have a Very Happy and Safe Holiday. >>>> >>>> Greenie for South Fort Myers, FL. >>>> >>>> >>>> -- >>>> -- >>>> [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 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