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Maryvillepat
MemberBety, did you read the Dr. azra raza thread for the info you requested?
PatMemberThis is a response to private email message sent by bety:
Azra Raza, MD, St. Vincent’s Comprehensive Cancer Center, 325 W. 15th St., NY, NY 10011email: azra.raza@yahoo.com, araza@aptiumoncology.com (as of 10/01)
Phone: 212.604.6004 (office), 917.305.0447 (office fax), 508.612.5914 (cell)Hope this will be helpful. Good luck.
Pat
MemberMary & Jack: Chuck and I are rather surprised and puzzled about Dr. Raza, too. Chuck visited her at UMass in 2006 and said she had a really nice setup there. St. Vincent’s in NYC isn’t even listed as a center of excellence, but perhaps they want to change that and have given her incentives (financial, better facilities?) to relocate there. Also, I think it’s far more accessible than UMass. She sent new phone numbers including cell phone but we misplaced those. I suppose it will be publicly announced any day now. Regards, Pat
MemberChuck was on thalidomide (Thalomid) for almost two years. His counts went up for quite sometime, then started dropping, and his thyroid gland was permanently disabled, so that he’s had to take Synthroid for years. He also developed mild neuropathy from feet to knees. After he went off thalidomide, his local hemo put him in Vidaza. He went into remission twice. By then Revlimid came out, and Dr. Raza was in UMass, and expressed doubt that it would work for him, and she was right, it didn’t. So now he’s back on Vidaza, which is helping some. Dr. Raza is taking some of her staff with her to New York. She is a brilliant lady, and dedicated, and what is too bad is that patients must pay to be in clinical trials (not her fault, of course). I continue to believe, though, that she will come up with something very effective for a lot of MDS patients, but it may not be any time soon, though I wish it could have been yesterday.
MemberHi Abe,
My husband Chuck is on his fifth cycle of Vidaza, and it’s the third time around for him. He has needed TXs (2) during the cycles, but yesterday his rbc was 12, which is the highest it’s been for a long time. His doctor seems to think it’s working for him, although he was dubious when he put him back on it for the third time. Chuck uses Kytril, too, and he gets welts, but they do go away. Best luck.MemberWe’ve FINALLY gotten some good news after three cycles of Vidaza for my husband, Chuck. Today he began his fourth cycle, and the doctor said it’s finally working. He hasn’t needed any TX for two weeks, and his hgb was 11.6. That’s the first time it’s been in normal range for about a year, I guess. He’d been on Vidaza, then went on Revlimid, which didn’t help, and the doctor wasn’t sure Vidaza would work this time, so we were pleased about the good news today. Greetings and blessings to all. Pat
MemberSandy B, Barb et al, thanks for your prayers, well wishing, and sharing. The sharing is so helpful, and keeps us mindful that MDS is bewildering to doctor and patient alike sometimes, and also that it’s an up and down disease, and we need to focus on the ups rather than the downs. But it’s good to be able to share both with others on the forum.
God bless all of you, and prayers for healing are constantly going out.
Happy Easter, PatMemberGood news about Chuck. For the first time in several weeks, his rbc was 9.2. He started his second cycle of Vidaza, and they feel right now that it’s beginning to work. His wbc is 2.5, so the doctor didn’t delay the second cycle. He was so relieved not to have to take a TX, although he said they’re not so bad if the nurse knows how to stick properly. Happy Easter to all.
PatMemberChuck has had to have another TX this week. His rbc was 6.8. Of course the first cycle for Vidaza has lower counts. His white cell count was low, too. He doesn’t know if he’ll be able to begin his second cycle next Monday or not. If his white cells are too low, he’ll have to wait.
MemberChuck has had to have another TX this week. His rbc was 6.8. Of course the first cycle for Vidaza has lower counts. His white cell count was low, too. He doesn’t know if he’ll be able to begin his second cycle next Monday or not. If his white cells are too low, he’ll have to wait.
MemberHi all, my husband had his first round of Vidaza and finished it last week. He needed a TX this week, as his rbc were 6.3. Of course, since he was on it before going on Revlimid, he knew that the first cycle, the counts go down. It would be good if the oral version of Vidaza is approved, because then it could be used on a maintenance basis. Anyhow, we’re still praying and crossing our fingers, and send out prayers for all of you.
PatMemberMy husband has gone back to Vidaza after Revlimid didn’t work. He started on it this week. He gets two 75 mgs. by injection. The difference this time between last time (he had gone off it to try Revlimid) is that he is taking Kytril, an anti nausea drug before each injection, and he hasn’t been sick once since taking them! I don’t know if it’s a new drug but suspect it is. They gave him a couple samples, and since they worked, he got a script for them. Our prescription insurance covers them, so the copay is only $20. It’s well worth it to avoid the nausea and vomiting he used to get. His counts will probably drop with the first week’s dose, and it did in the past, and the doctor said it might not work at all this time, but we’ve got our fingers crossed, anyhow.
PatMemberMy husband was given thalidomide treatment from Dr. Raza at Rush. When trials were announced at UMass, where she is now, he was quite excited and thought she’d have something to offer, which she did. Unfortunately, it would’ve entailed weekly trips and frequent BMBs, and just getting from the airport in Boston to Worcester where UMass is an expensive proposition, let alone the costs of consulting her and the tests she gives. It was highly experimental, and he felt he had other options close to home. There is no doubt she’s dedicated and gifted, and always readily available on her cell phone for patients, and also, she predicted that Revlimid would not work for my husband, and it didn’t. No doubt if she were closer to us (in Chicago, it was easier to get to), and the protocol less onerous, my husband would’ve enrolled again. But she’s too far from us, and the costs too high for an already strained pocketbook. On the other hand, she might be of real help to you. At present, all treatments are merely interventions, not permanent cures, including Raza’s, but she is trying. Good luck!
MemberLook up Pharmion on the Web. It will give you a phone number. My husband is going back on Vidaza after trying Revlimid, which didn’t work for him. I don’t know if your doctor will use Vidaza with such low white cell count, although perhaps he could be given Neulasta to build them up. When my husband was on Vidaza before, he was TX independent. It is given through injection, not IV. The side effects for my husband were nausea, vomiting, and sneezing, but they only lasted for an hour or two after each injection. At first blood counts will drop, but then if it works, they will come up. I would assume he could still receive TXs if needed while taking it, although my husband didn’t need them. Good luck!
MemberMy husband Chuck was on Vidaza and went in remission twice. He switched to Revlimid when it came out more or less against his hemo’s wishes, and after six months, it evidently didn’t work. He has increasingly needed TXs. The doctor is putting him back on the Vidaza but says there is no guarantee it will work this time. Anyhow, there is never any guarantee any meds will work, and it has worked for him before, so we remain optimistic that it will again. He had occasional bad side effects a while after getting the Vidaza injections, but sometimes, if they shook it hard enough, he experienced none. We’ll see how it works this time. Good luck to all.
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