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jaxem
Membernancy
then her 13th q is not paired as it should be. mary hit it right stating no way to know why the q changed. Chemo, however, is my guess as a layman.mary
in all blood transplants, stem cells are replaced with a donor’s stem cells from which all other blood cells are created.Membernancy
women and men both have a pair of 26 chromosomes with the 26th one the one that determines sex. In the case of 5q del, this means the 5th chromosome (q) only has one rather than 2. In the case of my wife, she originally was diagnosed with trisomy 8 which means the 8th q had an extra. she then developed over time to have pentasomy 7 or 5 of q #7. The evil q #7 is famous for its extras (trisomy 7, etc.). After a blood transplant, the transplanted patient will show the sex of the donor, regardless of sex of the patient.MemberBill
The only method that these drugs will increase HGB is that will minimize or hopefully eliminate the harmful aspects of the MDS which in turn will allow the body to begin producing good cells again. Although a patient has become transfusion independent, any of these drugs may and usually is given until a prescribed cycle for the drug is completed.Memberbill
let’s be sure everyone understands that aranesp & procrit are EPO drugs that attempt to increase red blood levels (anemia) whereas dacogen & vidaza are hypomethylating drugs which in no way will increase red blood levels per se. dacogen, vidaza & revlimed alter the scheme of blood cell production.Membernancy
sounds like hemoglobin. 8 is usually the transfusion floor. Procrit & arenesp are erythropoiesis agents that can be used to stimulate red blood cell growth. they never worked for my wife either so she was destined to get packed red cell transfusions every 3 weeks or so. The problem with transfusions is they increase the iron content in the blood so after a period, you need to get rid of this excess iron usually with oral tablets like exjade (which are very expensive).Membertrish
so sorry about Bill. At least you know he’s at peace from this [censored] of a disease. I may be cynical but we’ve got a long, long way to go to stem a lot of these blood diseases like aml, n-h lymphoma, etc.Memberjohn
as I’ve stated before, no difference between mds & aml, just the level of blasts get above 20% w/ aml. "going back for stem cell" means he’s going for a transplant? got to get the blasts down as much as possible to assure the best chance for a successful transplant. where is he getting his treatments?Memberjeff
you state you’ve had 2 biopsies. what were the results? If no chromosome defects, are there blasts? something is beating up your blood cells. what kind of specialists are you seeing? it seems to me with the counts you state, you shouldn’t be watching & waiting. are they giving you blood products & neupogen/neulasta to increase your counts?Memberfrankie
great idea about the recorder. I had one too & it proved to be well worth the expense. The docs give so much info & a lot of it flies right over your head but if you can play it back while doing research with your computer, you can really learn a lot. RARS shouldn’t go into leukemia as there are no blasts involved. I assume you have had a biopsy that showed other than RARS.MemberHi, Bev
I am so sorry to hear about Barry. I never met him but was happy to have met with you while at Fairview. It was so nice meeting with you on this Forum, then at the Hope Lodge when my wife & I were there with you. We shared so many common thoughts. getting through this grieving period can be tough for you so please e-mail me to discuss whatever as it has been about 6 months since my wife has passed.Memberhey, frankie
so sorry to hear you have progressed into aml. there’s not much difference between mds & aml, just the amount of blasts so you can go pretty quickly between the two, back & forth. I agree with getting you into treatment asap. that’s one thing about mds & aml, there’s never a big thing on pain. that’s why it’s such an insidious disease. the "pain" is loss of appetite & thus weight, becoming infected easily with infectious diseases, fungus, tiredness, bleeding issues, etc. DO NOT BE AFRAID TO TALK TO YOUR DOCS!!! They’re the one saving grace in determing how to deal with this ugly disease. AND if you don’t have a doc that will spend the time with you to answer all your questions, find another!! My wife would become exasperated with me because I had a million questions for her hematologist. And the guy would spend all the time in the world to make sure ALL our questions were answered. A typical session with him would last about an hour. From my experience, this site is the best one I’ve found to vent and find out answers to my questions. Use your browser and research also. Please stay in touch with the Forum and ask here.Membermarla
so sorry to hear about ralph. try to keep busy as the grieving can be tough on you. after 5 months, I continue to have good & bad days. please feel free to e-mail me about what you are experiencing.Memberjohn
ditto on the brutality and insidiousness of the disease. Have the blasts progressed to the peripheral blood or just in the marrow? like mary’s question, what now?Memberyou might find people that have had success going from hypomethylating drugs such as dacogen and/or vidaza but I’d be doing research on your doc’s recommended drug. where is your father receiving treatment? how old is he?
MemberJUDITH
I assume they did a biopsy when they did an mri of your lungs. I know it’s a hit-or miss when they take the biopsy but they’re pretty good at it. any results yet from the lung biopsy or bmb? -
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