Vidaza Stopped Working

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• May 14, 2019 at 12:21 am #46738
  Shelley Frady

  Participant

  My mom had 4 rounds of Vidaza, the last one in March, 4 weeks later a BMB then saw the doctor at that time he didn’t have the genetic portion back but said her BMB showed improvement, but her labs that day weren’t good. He said he would start her back on Vidaza 5 days a week instead of 7. Before she could restart, she was in the hospital with an infection. Prior to the BMB and the infection her labs were improving. We have went back every Monday hoping to restart Vidaza and no improvement so today he says the Vidaza isn’t working and he won’t continue. He said without treatment she would probably live 3 months but there is an option of a clinical trial.

  I don’t really understand:

  She hasn’t had Vidaza in 8-9 weeks. Wouldn’t that effect her counts?

  At what point do they give platelets? Her platelets were 22 today.

  Anything to help her white count?

  Clinical trials…I don’t understand is that anything to be hopeful about? I haven’t read much of the info but it seems not everyone gets the medication some may get a placebo?????

  Hospice and MDS? I was a hospice nurse years ago and I don’t know how I feel about withholding antibiotics or if they do. I don’t remember ever having a patient with MDS but to me antibiotics can be a comfort measure themselves.

  • This topic was modified 4 years, 11 months ago by Shelley Frady.
  May 14, 2019 at 4:38 pm #46741
  Kathy Stermer

  Participant

  Hopefully you are at a Center of Excellence for treatment. Sorry to hear things are so stressful for you right now. Do they have a palliative care department or patient navigator to help you sort through some of your questions? Might be a good place to start. Wishing you luck. This isn’t an easy journey for patients or their caregivers.

  May 14, 2019 at 4:55 pm #46742
  Shelley Frady

  Participant

  The MDS Foundation contacted the Center of Excellence at Vanderbilt and we have an appt tomorrow. I don’t know if they will give us any different news but we’ll worth a second opinion and so thankful, never thought we would get in so fast.

  May 14, 2019 at 6:31 pm #46743
  Paul Dyer

  Participant

  Hi Shelley,
  I would urge you to get the genetic results to a doctor at Center of Excellence. Depending on certain mutations, clinical trials may be your best hope. Only phase 3 trials involve placebo vs. drug, phase 1 & 2 trials are drug only, but you must meet criteria to join. Trials are the future to treatments for disease. I did 2 different trials before my allo transplant, and I believe they are the main reason I am alive!

  May 14, 2019 at 7:25 pm #46744
  Shelley Frady

  Participant

  This must be a Phase 3 trial then because the paperwork said 2 out of 3 would actually receive the medication one out of 3 would receive “doctors choice”. Whatever that means?

  October 6, 2019 at 5:33 am #49134
  anges

  Participant

  Hi Shelley, Sorry to read about your mother. I am facing similar issues. My mother was diagnosed last year september. Right after the vidaza started, her bloodcounts dropped very low and she got bloodtransfusions for like 4 to 5 months every other week so she could continue her treatment. Around march/april her white bloodcells started to climb and got sky high in May, also her red bloodcounts were very good. She went from 7 to 5 days of Vidaza because she responded so well. After that we were told every month the bloodcounts remained stable. Then she got a new oncologist last week who told her, her white bloodcells were dropping since May and are now so low that she can not get Vidaza treatment. We were confused cause all this time we heard her blood was clean and stable and the blast were low. Now this oncologists says, the blast weren’t just low but totally disappeared for a while and now they came back so she doesn’t think the Vidaza is working any longer because she has now 2% in her blood. So right now I am pretty confused cause I think to myself how is it possible that the doctor already thinks the treatment is not working any longer when she only has 2% blasts. She started out with two% and there was a month in the past that it climbed to 10% and after that decreased again, so it fluctuated all this time. I don’t know why the oncologists say something like that, based on only the 2% found in her blood. I know exactly what you’re going through cause this disease is still not controlable and each case is different doctors sometimes have to test or wait and see before making the right decisions. Hang in there, I wish you much strength.

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