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Vidaza disaster

This topic has 10 replies, 1 voice, and was last updated 17 years, 3 months ago by patti.

Viewing 11 posts - 1 through 11 (of 11 total)

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January 21, 2007 at 2:50 am #16785

Debster01
Member

Hello All..I have been a lurker her on this site for several months. My dad was officially diagnosed with MDS in May, 2005-but has had low counts for years. He received standard induction chemo at the Mayo Clinic that month, and after that his counts were much better for a year. Blasts went back to 14% in July of this year and he repeated the chemo. Blasts down to 8%.
He has had 2 rounds of Vidaza(last one ended Dec 3rd) and is now on hospice care. He has less than a week to live. His hemotologist says the drug killed his bone marow…counts plunged-platelets around 5, whites .2-.7. Had many transfusions for several weeks with no help.
We are all devastated and I am so angry-no where in any literature have I read a thing about Vidaza being that toxic. Especially after 2 rounds??? Can anyone share any insight here?
Thanks for listening-Deb

January 21, 2007 at 5:12 am #16786

kat58
Member

Deb….I too have been a lurker, but for about a year. I can tell you that drugs that help some seem to hurt others. My mother was put on Revlimid because of low hemoglobin levels. After about 2 months, her platelets, which had been fine, plummeted. I know that the Revlimid has helped a lot of others, but not my mom. I have decided that while the Revlimid probably hastened her death, we had no way of knowing that would happen, and it was worth a try. Am so sorry that you are going through this.

January 21, 2007 at 5:16 am #16787

Zoe
Member

I am so sorry to hear about your dad. Why do you think it was the Viazda? I really don’t know anything much about it. Will be praying for you .
Zoe

January 21, 2007 at 2:46 pm #16788

Debster01
Member

Hi Zoe…It is the Vidaza because while he had low counts before starting the injections, he at least had some healthy bone marrow in there. This has happened so fast it is scary. I sure appreciate all the prayers…Deb

January 21, 2007 at 2:47 pm #16789

Debster01
Member

Hi Zoe…It is the Vidaza because while he had low counts before starting the injections, he at least had some healthy bone marrow in there. This has happened so fast it is scary. I sure appreciate all the prayers…Deb

January 21, 2007 at 5:51 pm #16790

willie
Member

Deb I am very sorry to read what is happening to your dad. I believe that the Vidaza helped my wife for the short time she was on it prior to the transplant. I also believe that there are varing doses of Vidaza from what I read on this forum. I do not know how they arrived at her dose – or what the factors were. Some get the MDS from a prior treatment but most get it because they were unlucky. The blood disorders and treatment attempts are so unique to each that what he was doing by taking the Vidaza was probably worth the risks. Willie

January 21, 2007 at 8:02 pm #16791

JSRN
Member

Deb,
I am so sorry to hear about your father. My mother is on her second course of Vidaza. She is 80 years young. I also fear she may be doing more harm than good. She had 4 courses of it last year. The MD said it was not working as her counts dropped (platelets and whites were always okay before Vidaza) and she needed blood more often. I was ready to discuss Hospice when miraculously the Vidaza kicked in and she went 12 weeks without blood and her other counts came up. Now she needs transfusions every few weeks so she is back on Vidaza. He wanted to start her on Gleevec but the cost is so high she said no. He has seen no success with Vidaza. The oncologists that work at my hospital have seen good success with it.
What I have learned from this forum is every one responds differently. My prayers are with you.

January 22, 2007 at 5:11 am #16792

seekay
Member

Dear Debster,

I seem to recall that the drug manufacturer’s website (http://www.vidaza.com??) does contain eight or so case studies of patients whom they list as their clinical trial for Vidaza. Perhaps you need to click on the professional health provider option to bring up their info. It might be informative to look through how those patients responded to Vidaza. I looked at it about a year or so ago because a friend of mine was considering taking it.

January 22, 2007 at 5:19 pm #16793

Debster01
Member

Yeah-I have read all of those case studies. They all looked they responded so well. A couple of them died after using Vidaza for an extended period of time-one person lived for 6 years! I guess that is part of why I am so confused on why this turned out so badly. I guess with everything there are cases where things do not go as planned…

January 31, 2007 at 3:29 am #16794

Debster01
Member

I need your input!Okay-it has been 2 weeks and my dad is still here!Has had no transfusions-nothing-and when discharged to go home to die his platelets then were less than 5 and was receiving platelets every day.He is VERY weak but is mentally all there…dr is supposed to call this week and my mom is requesting a blood test. What is happening? Any thoughts appreciated!!!

January 31, 2007 at 3:37 am #16795

patti
Member

Debster,

With any chemo drug (Vidaza, Dacogen, etc) counts almost always go down for several weeks before they go back up. It almost sounds like your dad did just that. Definately do a CBC and see where his counts are at. It’s possible the Vidaza actually did what it was supposed to and his counts are finally coming back.

patti
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