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maueenh
ParticipantWell dad ended up in the hospital Friday night with a 102 temp. Since Friday night they have given him 3 bags of rbc and 1 platelet. He is still in there and they are giving him IV antibiotics. He still has no appetite which really bothers me but hopefully this will pass.
It sounds like the next round of Dacogen (which was supposed to begin Wednesday) will be delayed.Maureen
ParticipantMy dad is two and a half weeks out from beginning Dacogen and his counts are horrible. He has been transfused every week both rbc and platelets. On Saturday his wbc was 0.6 and his platelets were 5. Has anyone had this hard of a hit on their counts from Dacogen?
It sounds like he will not be able to start the next round if his counts keep sinking.
Maureen
ParticipantJanice,
That is great news. Thanks for sharing the dacogen combo, I will mention it to my dad’s doctor.
Maureen
ParticipantRuss how have you have been doing with the Vidaza and PDX 101 clinical trial? I noticed that you progressed to AML in January and have been following this protocol since. I read that your BMB showed a reduction in blasts but there was an issue re blasts in the blood. If this has been stabilizing you, that gives hope.
ParticipantThanks Russ. He is going for a cbc on Thursday and I am guessing if his neutrophils are low they will prescribe something or should I have him ask?
ParticipantThe BMB report came back on Wednesday and my father’s blasts are already close to 20% so they began the Dacogen. He received a rbc transfusion and just completed 5 days of dacogen. I’m praying this works and he stays healthy despite his low wbc.
thank you for all the support.
MaureenParticipantThank you all for your replies. We are scheduled to go back to Dana Farber on Wednesday and I’m sure they will do a BMB. Dad is on the borderline of needing a tx but we will wait until Wednesday.
Shari-I read dad your reply and he was encouraged.
Russ- I have considered calling Dr Raza before and maybe now it’s time.
ParticipantThank you for your replies. He is going in for a chest xray this morning but it was only after I read him all your responses.
Maureen
ParticipantAbe,
Do you have a copy of the report? If so it should indicate % blasts, cytogenetic analysis (chromosone abnormalities) and a summary finding or diagnosis such as RAEB. If you do not have a copy maybe you could call the office and ask for the information.
Maureen
ParticipantJen,
My dad is also on coumadin and Vidaza. I have questioned this numerous times and the response by three different doctors has been that it is ok but needs to be monitored. In the past, when his platelet counts have fallen below 50 they have temporarily taken him off coumadin. I should also mention that my father is on a low dose of coumadin.
Dad has never had any of the symptons that you mentioned and I agree with the others that your father should be checked. You must be proactive with this disease.
Maureen
ParticipantPatti,
I am so sorry to hear of your mother in law’s passing. You have been a wonderful caregiver and a valued member of this forum.
Maureen
ParticipantChuck,
I am thrilled to hear that you have been able to maintain your lifestyle and keep your counts in check. Just curious……what were your blasts when you were diagnosed last May? My dad was diagnosed around the same time but his counts were not as good as yours.
Maureen
ParticipantSaritha,
My father’s counts fell soon after his first round of Vidaza. He had to be transfused with both RBC and platelets. Within 2 months his counts were up. Based upon others experience, it can take up to 4 rounds of treatment before people start to see any response (if at all). During the process counts are closely monitored (weekly). You may want to search this site for Vidaza to get the full picture of the pros and
cons of this drug. If your dad comes to the US for treatment, you should consider a center of excellence.
MaureenParticipantSaritha,
You mentioned that the doctors have recommended Vidaza but it’s not available in India. What are they recommending you do?
My father also was diagnosed with RAEB 11% blasts last May and began Vidaza in June. He has responded well so far.
I would ask the doctors what options are available and then let folks on the forum weigh in.
Maureen
ParticipantSandy,
My dad receives 2 injections, each with approx 75mg. The dosage is based upon the individual’s weight. He was originally on a one week on, three weeks off schedule that has been extended one week (off). As Patti points out, the protocol for MDS treatment vs AML may be very different.
Maureen
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