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maueenh
ParticipantFran,
My father just finished his 6th round of Vidaza and is feeling well. His counts are on the low end of the normal range, which is a great improvement. His oncologist has said that he will keep him on Vidaza as long as it continues to work. He has found that patients that stop ultimately relapse and it is difficult to get them back to the previous response rates. It sounds as if it is also working for Jim which is wonderful news. The counts you posted, were as of day 1 of Vidaza or the last day?
Maureen
ParticipantPierre,
That is wonderful and encouraging news. There are so many ups and downs with this disease that good news like this is so uplifting.
Best wishes
MaureenParticipantKristy,
I am so sorry to hear of your mother’s passing. My thoughts and prayers are with you and your family.
Maureen
ParticipantMy father is on Vidaza and the doctor runs a complete blood count before they start each cycle. My understanding is that they will delay if counts are too low but I do not know what “too low” is. They may be able to administer other meds to help his counts such as Neupogen for wbc.
ParticipantEllie,
I’m so sorry for your loss. I will keep you in my prayers.
Maureen
ParticipantMy dad just completed his 5th round of Vidaza. His doctor will perform at BMB after his 6th round so we do not know the status of blasts but he has been tx free since his 2nd round. The doctor has told us that he will continue to treat him with the Vidaza as long as he responds. He said that he has found that patients that stop have relapsed and it has been more difficult to get them back to initial response levels.
Maureen
ParticipantChuck,
The doctor listed 4, 5, 7, 9, 12, 17, 18 and 20. I have sent him an email asking to confirm/clarify since my notes from our first visit were deletion of 7 and an abnormality in 8 which isn’t included in the “new” list. Before he started Vidaza WBC=1.8 RBC=2.33 HGB=8.2 MCV=100 PLTS=64 Blasts=11%. Last Wednesday before he started his 5th round of Vidaza WBC=5.3 RBC=4.74 HGB=15.2 MCV=92.4 PLTS=163 Neutrophils=53
My father looked and felt exhausted when this all started so it sounds like you have a far greater energy level. My father’s counts also plummeted after his first round of Vidaza and he had to have tx of red and platelets. He was receiving weekly Procrit and several days of Neupogen. Also his diagnosis was high risk which yours may not be. My dad did not have many options and has been very very fortunate with his results thus far. Is your doctor recommending Vidaza? Have they offered Neupogen for the white counts? The Neupogen seemed to help his white counts but I do not know alot about this drug.Maureen
ParticipantGloria,
I am so sorry for your loss and have been thinking of you and your family often over the past couple of days. Please know that we are here for you.
Maureen
ParticipantWe went to see dad’s doctor at Dana Farber this past Wednesday and he said he will keep him on Vidaza as long as he is not having any adverse side effects and it appears to be working. He said that his experience has been that many patients relapse after being taken off Vidaza and it is harder to get them back to prior response levels. He also scheduled a BMB for early Dec which will be after 6 rounds of Vidaza.
The doctor said he didn’t know of any oral medication other than Revlimid which would not be appropriate for my dad since he does not have an issue with the 5 chromosome. I did find out though that he has multiple chromosome issues when I originally thought it was just -7 and 8.Maureen
October 7, 2006 at 3:56 pm in reply to: Diagnosed with RAEB – Could anyone explain blood counts please! #15388ParticipantJen, Ask the doctors for a print out of his blood counts. They usually will have the “normal” ranges along side. My dad was diagnosed in May and has been on Vidaza since and is responding well. His platelet count was around 60 when he was first diagnosed and is now 160 after 4 rounds of Vidaza. Every case is different and what works for one patient does not necessarily work for another but there is much more available today than just a couple of years ago. This forum has a wealth of information and great support.
Maureen
ParticipantJeff,
Wishing you the best and will keep you in our thoughts and prayers.
Maureen
ParticipantThanks for the feedback. I will let you know if I have any new info next week when we go to Dana Farber.
Maureen
ParticipantYou are both in my thoughts and prayers.
Maureen
ParticipantJerry,
So sorry to hear that you were in the hospital. Glad you are home and feeling better. I like your suggestion for a tribute to Dennis and will follow up on Terri’s contribution page.
Maureen
ParticipantChuck,
My father has been on Vidaza since mid June and has been responding well. He controls the nausea and constipation with meds and otherwise feels well.
Maureen
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