How long did it take for Vidaza to work for you?

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• October 31, 2019 at 1:16 am #49297
  Pam Grillo

  Participant

  My Mother was diagnosed with high risk MDS in July and has completed 3 cycles of Vidaza. She should have started her 4th cycle 2 weeks ago but her Doctor said that he didn’t think the treatment was working and was basically suggesting she not continue treatment. I said that I thought it typically took 4-6 cycles to begin working but he said we should have seen some improvement by now so I’m curious at what point others began to see results? She feels good and has tolerated the treatments well without any issues so I don’t see the harm in continuing at least until 6 cycles are complete before calling it a failure. The Doctor did another bone marrow biopsy and we will get preliminary results next week. I’d like to have some information before that meeting about other people’s experiences. Also, if she is to be considered for a clinical trial she needs to have completed at least six – 4 week cycles so I’m worried that this could affect that even being a possibility. I’d really love to hear other people’s experiences with Vidaza.

  October 31, 2019 at 8:01 am #49298
  Kathy Stermer

  Participant

  I was switched to Vidaza after failing treatment with Revlimid. After 2 cycles of Vidaza without improvement had biopsy which showed dose adjustment down was warranted. Completed 6 cycles without any improvement and after another biopsy will get results later today. Decision was made between myself and physician to complete the full 6 cycles before calling it a failure. Now have to wait for biopsy results to see where to proceed from here.

  October 31, 2019 at 9:39 pm #49311
  Pam Grillo

  Participant

  Thanks Kathy for sharing your experience. I hope you have good results from your biopsy. Good Luck !

  November 1, 2019 at 3:17 pm #49313
  JAMES KAMP

  Participant

  I saw significant improvement in month 3.

  November 1, 2019 at 10:13 pm #49320
  Pam Grillo

  Participant

  Thanks James for sharing. Good luck !

  November 4, 2019 at 9:16 am #49329
  Denise Fowkes

  Participant

  My husband has had 2 cycles all blood counts have dropped has anybody else had this happen to them ?

  November 5, 2019 at 7:08 am #49361
  Kathy Stermer

  Participant

  Counts dropping is a side effect of the chemo. The hope is eventually they begin to recover as the chemo has an effect on the marrow. I was told 4-6 months to see results but after 2 months of low counts bone marrow biopsy revealed that dose adjustment was warranted. After 6 months of no changes am now on supportive care only (my choice) and after 2 failed treatments have made the decision to live life as best I can. Am involved with the palliative care service to help me live the best I can with a chronic disease. They are a great source of support.

  November 5, 2019 at 8:32 pm #49363
  Pam Grillo

  Participant

  Denise, that is very common and even expected during the first two cycles especially. The hope is that they will start to rise by 4th-6th cycle. Kathy, what was the other treatment that you tried besides Vidaza? How long were you on it?

  November 5, 2019 at 10:56 pm #49364
  Owen Maguire

  Participant

  Pam: I complete my 34 cycle on Vidaza tomorrow. I am Trilineage and had 4% blasts when diagnosed in 2012. Was on W & W until 2015 when Hgl. dipped and placed on 40,000 units Epotine Alfa (Eprex) self injected each week. This stabilized Hgl but below normal level. Blasts rose to 6% in Jan 2917 and started Vidaza. Saw a slight dip in all areas for 3 months then all 3 areas began to rise. Over last 2 and half years platelets have been in low normal range but have a tendency to jump all over the place. WBC continue to remain lower than normal except when I need antibiotics for chronic sinus infection and then approach low normal. My original Oncologist retired and my new one was shocked I was still on Eprex with Vidaza. My Hgl had been rising and in 2 month period was just below low normal. Her concern was that the Eprex with Vidaza would cause the Hgl to take a drastic rise. We reach3d a c
  ompromise and I now inject Eprex every other week. My Hgl hs dropped about 10 points. My most recent blasts were 3%.

  November 6, 2019 at 9:32 pm #49370
  Pam Grillo

  Participant

  Owen: Wow, 34 cycles !!Thank you for sharing your experience. I’m glad your numbers are holding for you, I hope it continues.

  December 2, 2019 at 11:56 pm #49799
  David

  Participant

  After 2 cycles there is no improvement, but there is change. Per the doctor, “well, it’s doing something”. This is with 2 years of blood work to look back on. As someone else posted Revlimid was a failure for me also. The something it is doing is Platelet related. I have the expected dip immediately and +1 week post cycle. Then my Platelets skyrocketed to 120 (Normal is 58 – 62 range with no variance for the past 2 years), then 133. Then a new cycle started. After second cycle similar results.

  Will it effect my RBC? Hope so. Other than injection site pain I tolerate the drug well.

  If there are no negative results or reactions I would definitely continue thru 6 or more. Keep in mind, “No, we will continue this course of treatment” is an acceptable response to a doctor’s recommendation.

  “Policy” at the cancer center I go to is, 2 units when hemoglobin drops below 7.0 this is too low for me, 7.5 is my fully functional bottom so treatment is scheduled in the 7.8 – 7.7 range to hit this 7.5 target. I didn’t give them an option. I look at it as I’m a senior partner in my care. I want their opinions and recommendations, but if the answer to the question “is there a reason not to do this that makes me feel better” is no then let’s do that.

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