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Suzanne
Memberfantastic! Hope goood things are ahead!
MemberDoreen, what classification of MDS did they tell you that you have? Maybe you don’t have abnormal # of blasts. How about chromosome changes? the cord bllod thing must be neew because someone else on the forum mentioned it recently but before that I had not heard it talked about.
MemberThe center of excellence where I am reviews cases regularly with the whole team that works on MDS.I have even seen a time or two when directions changed from what My doc was talking about-a result of the opinions of others I think. Also met all the other doctors when I was in for chemo because of the schedule for who did rounds.
Memberwonderful news! Enjoy! enjoy!
Memberkate, I will be hjping for the best you both of you.
Memberthe “shake and bake” refers to the side effects of the iv meds used to fight the fungal-many patients got extreme chills and I guess hot flashes during the treatment. the nurses called it that. When I came home they gave me Norvasc. It has been a year but I think they kept me on it until counts came up then put me back on during the second round of follow up chemo when they took the counts down again. They gave me several scansdudring the second round to check for it but it did not come back and even the “Nodule ” on the lungs that they said might be permanent went away during that second round.As I remember I still took the medication until the counts came up and it took a long time after the second round-more then 30 days!
MemberPat, any side effects I have are so minor that I would not notice unless I was watching. they don’t even knoe for sure whether the mild things I do have are due to the zarnestra or the original induction chemo. I have gained weight (my nurses say this has happened to others even tho the Dr’s say there is no weight gain documented) I sometimes have a slight amt of gas-in my digestive tract(acid reflux)I have trouble absorbing and retaining new information. And occasionally my eyes get tired and I have trouble focusing. they tell me all these things are typical from any type of chemo. None bother me much. I walk almost 3 miles a day, take a jazzercise class a couple times a week and have gone back to work part time so you know things are pretty normal for me.
Memberthey diagnosed mine from a scan. Get the terms of types mixed up. They put me through a doughnut shaped thing.I too had the “shake and bake ” after other meds did not work on the fever.I was really nervous about it They gave it to me at night and gave me adivan Iv before. I slept through the whole thing.
MemberWe know you could do it! suzanne
Memberglad to hear from your and so glad Ruby is improving.
MemberDawn, Tell that Dad of yours not to give up. There are lots of us out here who got past that scary “6 months to a year to live” and “no cure except a bone marrow transplant”! Some of us had the transplant but a lot of us have not for one reason or another and we are months and years beyond that prognosis. Our time has also been quality timefor the most part. Most of us are dealing with experimental drugs going for improvement of our condition or slowing down the progression of the disease.There have been so many new development just in the two years I have been dealing with this disease-a lot of them very recent. I can’t help but feel there is hope for many of us!
MemberAs I have said before Look into Zarnestra for someone who cannot do the induction chemo. I understand that it is hard to find now because all the trials have been closed to collect statistics to submitt for approval. Or if he is healthy enough otherwise consider the induction and follow up round of heavy chemo. That has worked for me, Barbra’s Ron and another contact who is on her 70’s.We are all in remision and tx free. I don’t know that there is a specific # of tx’s to cause too much of a build-up. People are probably different even in how how a level they can tolerate.
MemberOn the Fab classification the MDS disease is CMML or CMMoL for cronic Myelomonocytic leukemia. CML is a different disese I think Which one are youall talking about being tested for? I would thonk it would be the MDS one.
MemberGlad things are looking better. Good Luck!!!
Memberjimbob, What wonderful news!Hoping for contunued improvement for you so you can enjoy being “cured”
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