Vidaza

[Zita Desenberg]

Hi everyone:

My doctor has just recommended that I definitely go on Vidaza. This was recommended for me three years ago and I have been resisting. My counts have recently turned downwards. My RBC 10.5, WBC 2.2, Plat 28, ANC .8. I currently have no symptoms.

I would like to know what others have experienced while taking this drug.

You may e-mail me privately or in response to this thread.

Thank you.

[Birgitta-A]

Hi Zita,
I hade hoped that members that are treated with Vidaza should tell you about their results - I am in the same situation as you but my counts are lower. My doctor think we should discuss Vidaza but I hesitate since I am asymptomatic with supportive treatment (red blood cell transfusions, Desferal for iron overload and Neupogen for low white blood cells).

As far as I understand it is important to know your blast cell count - if the blast cells increase to more than 5 % you should start with Vidaza. Vidaza is the best treatment for most MDS patients with more than 50 % hemotological response.

Dacogen give much better results in some patients, Revlimid is almost a cure in some patients (specially patients with the chromosome aberration 5q delition). Then some patients have very good results with histone deacetylase inhibitors like valproic acid (Epival) and Zolinza.

Unfortunately we don't know much about what drug is the best for us - they look for so called hypermetylation and study if the hypermetylation is decreasing after each Vidza cycle (Vidaza is a hypometylating drug like Dacogen). Hypometylating means that the pathological metylation will decrease. As long as these studies only are performed in clinical trials all other patients have to wait for response - Vidaza often takes at least 4 months to "kick in". During this time you only get adverse reactions like low counts.
Kind regards
Birgitta-A
69 yo, dx MDS-interm-1 May 2006

[Zita Desenberg]

Birgitta:

You appear to be very knowledgeable, and I want to thank you for responding to my thread. I stated that my platelets are at 28,000. Are your platelets lower. My doctor is concerned about my low level of platelets. I had a bone marrow biopsy the other day and my blasts were 5%.

I can understand why you are reluctant to try Vidaza, but what are you doing for low platelets?

Thanks for answering.

[Vera W]

I started the Vidaza about a week after my DX. I have already had good results. My platelets are solid and my reds are only a little low. My whites were my worse culprit but last week they were 8. They are steadily improving and the lows aren't as bad but I was 1.9 when I began and 39% on neutrophils (now about 60%) I am 55 and pretty healthy and have read as many case histories on Vidaza as I could find. The manufacturers of the drug have some side effect histories. Some people have a hard time with it. I have some skin problems. dizziness, headache nausea and constipation , it is very dehydrating but I consider this all a small price to pay.I feel a lot better and I was going to do another BMB after this cycle(4) but they have found me a perfect match so I am now awaiting the SCT. I have no way of knowing if my blasts Have improved but I sure feel like this drug has helped me a lot. My blasts we 11-12% so it could have slipped into AML very rapidly. I am very lucky in that I have not needed a transfusion or blood boosters,I have no chromosome abnormalities but aggressive MDS. Strange huh? Try one cycle and monitor everything closely, it was rough for the first two cycles but like I have said I feel so much better. Hope this helps a little. I just now got a call from my Transplant Doctors office and I think they want me to do another BMB OH JOY! So I will let you know on the out come

[Birgitta-A]

Hi Zita and Vera,
Sorry Zita that I didn't answer your question about low platelets - it disappeared behind some other post. My platelet count has been as low as 30 but mostly it is between 40 and 55 (last count 42). I can only protect my platelets from substances that can be bad for them - many drugs and different kinds of food can decrease platelets. Here is a link to Warnings that I have posted before but it is really important: http://www.pdsa.org/itp-information/itp-warnings.html.

Then I am hoping that the new drug Promacta/Revolade for low plateles will show good results in cancer patients with low platelets due to chemo. Now that drug is only approved fot patients with the bleeding disease immune thrombocytopenic purpura but it is in clinical trials for many other diseases.

When your blast cells are 5 % you could try Vidaza.

Congratulation Vera to the good response ! Hope your SCT will be successful! You know a good performance status and no other diseases are very important for the prognosis.
Kind regards
Birgitta-A