BMB and Vidaza

[maueenh]

My father has been seeing a local hemotology oncologist for his weekly CBCs (and Procrit and Neupogen in the early months of his dx) and another at Dana Farber for his monthly Vidaza injections. Dad has been on Vidaza since mid June and his blood levels are close to or within normal levels(and we count our blessings and take one day at a time). The doctor at DF told him earlier this month during his Vidaza treatment that since he is responding they would
not do a BMB right now (“why subject you to that if we know it’s working”). Today he met with the local dr for a CBC and she informed him that he would not be staying on Vidaza for more than six rounds and after that he would just take “some medication” orally. I plan on going with him to Dana Farber when he starts his next round on October 4 but I am curious what others think of this information. My understanding (from reading on the forum) was that he would stay on Vidaza indefinitely or until it stops working and that a BMB must be performed to determine whether or not the disease has progressed to AML. I’m not sure if my father misinterpreted what the doctors have been saying or if I misunderstood. Any thoughts would be appreciated.

Maureen

[eve]

hi maureen

i am not quite sure what oral medication the doctor has in mind – as of right now no one ever gave my dad that option

you’ll probably know more when you hear it yourself from the doctor – don’t be afraid to ask all the questions that you have

good luck
eve

[willie]

maureen Have him get the BMB. It is somewhat tough for the 10 minutes and is sore for the rest of the day but he will get more definitive information.
Willie

[maueenh]

Thanks for the feedback. I will let you know if I have any new info next week when we go to Dana Farber.

Maureen

[Terri]

Maureen, first time Bob was on Vidaza from Nov of 03 for six months same thing that is the initial treatment that was prescribed by the National Institute (Bob was getting it on a compassionate basis before it was approved.) he did well for 7 months but then the doctor who orders slides each visit we see him saw something on the smears so he did the BMB and Bobs blast were increasing so he went back on the Vidaza that was in probably 12 of 04. He was on it up until recently and only off due to some of the bleed problems and the fact he was getting radiation on the spleen. His counts are ok now and we see the doctor next week so we will see if he wants him back on vidaza. But in our case it was being used as a Mtc as well.
Each person is different.

[maueenh]

We 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

[chuckk333]

Maureen. What are all his chrome abnormalities?

Mine are Del of 20, trisomy 7, and monosomy 8, My dx was in June this yr., but I feel just as before I knew about my MDS. Was considering Vidaza, but my counts are not so bad except for WBC particularly neutrophils. Platelets seem to be holding at about 70,000. Doc says I can ski unless platelets fall below 50K

[chuckk333]

Also, what are his counts now and before the vidaza

[maueenh]

Chuck,

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

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