While I was on Tasigna I had to have two transfusions; My onc at that time used anything under 8 as the sign for a transfusion. I am on Sprycel now and have worked on my hemg and it is now 13.4 which is a magic number for me. Eating right and fueling your body often with good foods is a must. Good luck, Jeanie<3 In a message dated 6/27/2013 11:48:54 A.M. Eastern Daylight Time, [email protected] writes:
Hi Marcie, Since I am on dialysis I get Epogen at almost every treatment. Even though it is a low dose my doctor wants to give me at least twice the amount but Medicare will not allow it. This also seems to be the case with you as well. I don't know what insurance you have but it all filters down to money and our "wonderful" health care system. You may also want to ask if you could receive Iron injections. It is much less in cost to Procrit and Epogen and it may help your system. Also if your not diabetic instead of drinking eight glasses of water throughout the day why not drink four glasses of cranberry juice (great for the kidneys) and four glasses of water? You may want to stay away from a lot of caffeine and try to get along with a bit less of it in your diet. I know you mentioned that you eat a healthy diet but does include things that are high in iron? Dark green leafy vegatables like kayle and spinich. Red meat and anything with high amounts of iron. I wish you well. We have just about setteled in here so it is the rest of the summer to try and enjoy. 18's, Marty Even with an 11 HGB I still feel lousy. Once I get up to 12 (rarely) then I begin to feel better. On Wed, Jun 26, 2013 at 8:55 PM, Marcie Goodman <[email protected]_ (mailto:[email protected]) > wrote: Hi Marty, I don't know if any if our fellow warriors have experienced this but about a year ago, maybe longer, my onc told me that protocols had changed and I could no longer receive Procrit or other red cell injection as an out patient. It can only be given if you are admitted to the hospital. Perhaps this is just in Maryland or just at the cancer center where he practices. I have always been told that my magic number was 11. If under that, I used to get Procrit injections. And I was still tired. Now, it has been a long time without and my red cells usually hover around the 10 to 10 point something mark. Fatigue is part of my life but I'm used to operating on a caffeine fueled morning and after that 8 glasses of water throughout the day and night and a healthy diet. Obviously, this is not a one size fits all answer. Hope you are doing well. How are things going now that you are at your summer home? 18s, my friend. Marcie Sent from my iPad On Jun 26, 2013, at 8:24 PM, Marty Gartenberg <[email protected]_ (mailto:[email protected]) > wrote: Hi Wesley, First, I have never been on any of the TKI's but had a bone marrow transplant more then 23 years ago. So that you understand more about fatigue, it could be caused by a lot of things but in your case I would suspect that the Gleevec may be playing havoc with your red blood cells as well as your hemoglobin. A simple CBC could be a very effective tool to determine if you are anemic. If so then I would urge you to speak to your doctor and ask if he or she may want to put you on either Epogen or Procrit. If your hemoglobin is at or below 10 then I think that may be of help to you. That is if either of those will not effect the Gleevec. 18's Marty On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon <[email protected]_ (mailto:[email protected]) > wrote: Morning everyone, I have been silently following this email list for a while. I work in the computer industry and am well aware that anything we write on here will be searchable and viewable by the entire world, so I have been hesitant to write. My question is about fatigue. Does anyone take anything to combat the fatigue caused by gleevec? I read about research somewhere in Texas where they're trying a narcolepsy drug called Nuvigil to combat fatigue in patients taking gleevec. The research is ongoing and closed to new patients. I called my doctor's nurse and asked about something to fight this fatigue and the doctor told the nurse to tell me there is nothing that can be done about it. I don't believe this. In fact, the research I mention above contradicts my doctor's view. My next appointment is in August, I'd like to have some information to take with me so that I can have a potential solution in hand when I see the doctor. I don't have much faith in my doctor. I do believe he understands what he is supposed to prescribe and what the numbers mean, but I don't think he has any experience in treating side-effects. After two years on gleevec, my number is 0.03% and slowly decreasing. Unlike many of you, I have no desire to take a drug vacation. My side-effects, other than fatigue, have been minimal. I'd rather treat the side-effect than change my dose or change the medication. I look forward to your input. Have a great day! \Wes -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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