Vidaza not working

[Suzanne]

My mother has had 7 cycles of Vidaza with no response. I initially felt when they wanted to stop on the 5th cycle they didn't give Vidaza a fair chance, I am starting to think they might have been right. My moms counts continue to be low. She takes neupogen injections and receives 2 units of blood about every 2 weeks. The past 3 weeks she has received 1 unit, 2 units and another 2 units today. Her ferritin levels are 2066 and she is on Exjade, but it is like shoveling sand against the tide. Although they did up the dosage of Exjade. The highest I have every seen her hemoglobin and that is after a transfusion is 10. They transfuse her as soon as it goes to 8.5. Her neutrophils are about .4 and the WBC are about 1 without neupogen. Platelets fluctuate between 42 - 90. She is tired all the time and very short of breath. I am finding that you really have to be your own advocate in this battle, because the doctors have so many patients and are overwhelmed. My mother tells me all the time she just wants to get well and is a lamb being led to the slaughter because she does whatever they want just to be better. That makes me the primary voice in her disease. So, I guess what I want to know is at this point in the game what should I be saying and doing? The Ferritin is making me nervous as well as the instability in her counts. Should I be mentioning Dacogen? What other options are there?

[Birgitta-A]

Hi Suzanne,
Your mother's platelet count is quite good and hopefully her WBC is higher when she gets Neupogen. How often does she get Neupogen injections?

A ferritin value of 2066 is really not very high but I understand that you worry because your mother is short of breath. How is her heart functioning? Perhaps she needs heart drugs? A HGB of 8,5 is quite high but of cause some patients feel that and get tired.

Is your mother getting treatment for Lymphoma? Before discussing Dacogen, the new histone deacetylase inhibitors like Epival and Zolinza or stronger drugs like Daunorubicin or Ara-C we have to know that.
Kind regards
Birgitta-A

[Suzanne]

Mom is now starting her 10th cycle of Vidaza and we are cautiously optimistic. Her platelets and white counts seem to be responding. Her neutrophils have been between .2 - .4 for over a year and she has needed neupogen injections to get them to about .8. Platelets have been between 22-90. The last cycle of Vidaza her WBC went to 2.9 and her neutrophils were at 1.5 on her own without neupogen and the platelets were at 165. She still continues bi-weekly transfusions, but we are hoping that this is something positive that Vidaza is doing. I am glad we got a second opinion from Dr. Raza before they took her off the Vidaza, I didn't think they gave it a fair shake with only 5 cycles.

On another note I just wanted to add my mother was diagnosed with early breast cancer and the return of her non-hodgkins lymphoma last December. Moral was very bad last year at this time. The doctors feel the Vidaza has also taken care of those cancers because there is no sign of them anymore. Vidaza, the dual functioning drug.

[Birgitta-A]

Hi Suzanne,
Congratulation to your mother's WBC count and platelet count !

You know Professor Raza is considered to be one of the MDS top experts in the world. You can hear her talking about the most important reports from tha last ASH conference for example results from a study of oral Vidaza if you download the audio. You have to register but it is free.
http://www.clinicaloptions.com/Oncol...gy%202009.aspx
Kind regards
Birgitta-A

[roger]

Suzanne so good to her the good news about your mom. When I first started with Vidaza they told me things would possibkly get worst before they got better. It looks like your mom made the turn and is on her way. Give her a "that a girl" from the ret of us hear waiting to9 see the same.

How have her individual cycles been going? Any oddball reactions or has all gone smoothly with little side effrects. I'm just finishing up cycle 2 today and while cycle 1 went wellcycle two was a challenge.

Continued good luck to your mom and wishing you both a Merry Christmas

Roger

[Suzanne]

Roger,
When she has Vidaza all her counts get very low and it happens over the first 3 days then they tend to drift down till about day 10. They usually give her Neupogen and blood transfusions (which she has yet to be free from usually 2 units every 2 weeks). She is VERY lucky in that she really has no side effects from Vidaza. She did have her hair thin out considerably and her belly is sore from the injection site but other than that it has been smooth sailing. I think the point I really wanted to make with this post is sometimes it takes numerous cycles on Vidaza to see something. Her doctors were ready to throw the towel in on cycle 5, now we are all cautiously optimistic. This is the first positive thing we have seen so far and it has been almost a year on Vidaza.