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maueenh
ParticipantJen,
My dad was just diagnosed in May 06 and is being treated with Vidaza and responding. There is alot of information on this website so the best approach may be to just search around and read various posting etc. Much of the information on the internet is outdated. If you can get a better understanding of your dad’s diagnosis (affected chromosomes, blast %s, etc) you can look into various treatments that are available now Vidaza, Revlimid and Dacogen. My understanding is that bone marrow transplant or stem cell transplant have the potential of putting this disease in remission but I will let others comment on that since I am really not familiar. I too came to this forum feeling lost and hopeless and have found a wealth of information and much support.
Maureen
ParticipantKatie,
I’ve heard that Vidaza can take 4 cycles before you see improvements. My dad has had a definite improvement in his blood counts since beginning Vidaza but they do fluctuate during the month. A couple of weeks after the Vidaza the counts seem to fall then creep back up. Everyone is different but if Vidaza does not work then there is Dacogen as Russ mentioned. I will keep your dad in my thoughts and prayers.
MaureenParticipantRuss,
Did the Vidaza reduce the blast %s at any point? My father has been on Vidaza since June and his blood counts are up but he has not had a BMB yet. What was your experience with the Vidaza?
Thanks
MaureenParticipantDennis
Best of luck. You are in our thoughts and prayers.
Maureen
ParticipantKathy,
My dad has been on Vidaza (for 3 months) and does experience a rash where he receives his injections. He said it’s sore but not very painful. After his first treatment his blood counts fell (which is expected)and he had to receive a tx of both reds and platelets. When counts fall you have to be very careful of infection.
Maureen
ParticipantSusanJ
My father is also having a good response from Vidaza. He is in the middle of his 3rd cycle right now. He has meds to treat the nausea and constipation and has figured out when to take both. Otherwise he is feeling good. We take one day at a time but atleast we are going in the right direction. My dad did experience a fall in counts after the first round and had to be tx both reds and platlets but has not had a tx since. He does not have a BMB until September so we do not know %blasts but again we are hopeful. As you know everyone responds differently but it does give hope. Have you considered Dacogen? Dad’s onc had mentioned that as an option but it had not arrived by mid June when my father began treatment.
Maureen
ParticipantDad just started his third treatment of Vidaza this morning. His CBC was great just about everything is in the normal range. They also said that they will stop the weekly Procrit since his HGB was 15.2. On the way home my father asked me if this means he’s in remission and I don’t know the answer. Is remission based upon blast %s and does this mean you stop the Vidaza? The nurse administering the Vidaza said that he will continue Vidaza and after the 4th round they will probably do another bone marrow test.
Eve, that is wonderful news about your dad. I didn’t realize that Vidaza could work for such a long period of time. Has he been on the Procrit from the beginning of the Vidaza treatments?
Maureen
ParticipantSusan,
So sorry for your loss. You are in our thoughts and prayers.
MaureenParticipantPatti,
My thoughts and prayers are with you and your family.
Maureen
ParticipantNelson67,
My dad is being treated at Dana Farber. I will email you the info.
Maureen
ParticipantKLG,
My father was diagnosed with high risk MDS about a month before your father. This forum has been a good friend during a very difficult time. Everyone is informative and compassionate. Neil has given you good advise. Once you determine his classification that will guide you as to what treatments are available. My father felt very similiar to the way you have described your dad and today is feeling good. He is responding to treatments but had several transfusions in the interim.
Maureen
ParticipantDennis,
How long did the Vidaza work for you?
MaureenParticipantThanks for the feedback. I will contact my dad’s doctor and get the reasoning. I told my father that my pals on the forum thought he should be getting weekly CBC but he liked Jerry’s response. Thanks again.
MaureenParticipantSusan,
My father was also diagnosed in 5/06 so I too am learning. If you click on your profile you may enter a tag in the box indicated. My dad initially lost about 10lbs but has gained a few in the last couple of weeks. He stills has a decent appetite so not concerned at this point. I’m not well versed on the chromosonal issues so I will leave that for someone that is. Keep us posted on your Revlimid treatment.
Maureen
ParticipantSusan,
My dad just started his second round of Vidaza yesterday. A week after the first round his counts fell and he needed a tx of both red and platelets. He also received several injections of neupogen (for wbc) and procrit. His counts were up yesterday and he began the second round of Vidaza. He had an issue with constipation but otherwise feeling good. Our onc has had some positive results so feels that it’s worth a shot. Good luck.
Maureen
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