MDS – RAEB 2 Patient age 82

[Ken Soderstrom]

My wife (82) has MDS RAEB 2 – prone to infections.
Are there proven alternative medicines/supplements that can help? Have had one cycle of Vidaza

[Suzanne]

Yes they are using Zarnestra instead of chemo for older patients. Last I heard it had about a 30% improvement rate. It is a pill-easy to take and few side effects. It should be in phase three trials now-They were hoping for early approval because of the good results and so few alternatives for patients in their 70’s and 80’s but FDA wanted the phase three conmpleted. contact Dr. Judy Karp at Johns Hopkins 410-502-5399.She has been very involved with the research on this drug and would know where you might get it.

[patti]

Ken,

My MIL is 75 and has RAEB with greater than 30% blasts in her marrow. She has been using alternative therapies for the past two years to keep herself healthy. You can do a search of this forum on the different posts I’ve written over the past year in particular. I’ve written about a number of things she is doing. She has had no infections (one fever that lasted only a few hours) in the past two years. One thing we do is use and integrative medicine naturapath. Using natural therapy is a terrific way to go but I would find a naturapath that specializes in cancers and have them help you and your wife understand what she should and should not be taking. If she’s getting losts of infections I assume her white count is low? My MIL has very low white count (her ANC’s usually run between 200-500). She takes neupogen shots twice weekly just to keep her ANC’s (the infection fighting white cells) at that level. If your wife isn’t taking neupogen shots you should talk to her doctor about it. Our naturapath works in conjunction with our hemo/onc. so that they don’t do anything to contradict the other. You don’t mention where you live but if you need help finding a naturapath for your wife I’d be glad to get you some information. I just need to know what city/state you live in.

I do not think you can call the alternative medicine/supplements that my MIL takes “proven.” I don’t think there is much “proven” with natural medicine because doctors don’t want to study it. But if you talk to people who use it they will tell you it works. I know it does for my MIL. Her prognosis was 4-6 months and she’s still doing well almost 2yrs later.

I’d be glad to answer any questions you have.

Best wishes,

patti

[Brenda P]

Please look into the Zarnestra as soon as possible. My dad had RAEB-2 as well and I feel that it would have been the best thing to help him. Your oncologist could fill out a form to obtain it from Johnson & Johnson. Good luck, and keep your spirits up!

[SusanJ]

Ken,

My 73-year-old dad has RAEB with 6% blasts and the doctor suggested today that we read up on Vidaza and talk to him about it next visit. How did your wife respond & handle her first round of it? Best Wishes to you.

Susan

[Ken Soderstrom]

Susan,
My wife tolerated Vidaza quite well, except for the day she forgot to take the pre-shot medication when she really tossed her cookies. We’re not sure if it helps – maybe we need more cycles of Vidaza. The Vidaza knocked down the red, white and platelets which were already very low, but a blood transfusion brought them back up. Our hemo/oncol thought Vidaza better than dacogen in my wife’s case. We’re trying to locate a naturapath Dr to work w/ our hemo/oncol, and going for 2nd opinion at Moffitt cancer center in Tampa. Vidaza has a website and you can learn much from . Good luck!!

[Author]

Posts