Vidaza Survey - How Long?

[Sue&Dave]

Question for those that have been or are currently on Vidaza. How long have you been on treatment? Dave just finished Round 7 and his local oncologist remarked that he had to do a double take a couple times when Dave's labs hit his desk. His platelets have gone from the 25 range up to 200; with similar results for his other counts. When he first began treatment his COE oncologist said to expect Vidaza to work for 1-2 years. She later clarified (after seeing his results) that the 1-2 year timeframe is based on clinical trial data and that many of those patients were much sicker than he was to begin with (although he was pretty sick). She went on to say that as far as she knows, no further studies have been done on the long term effectiveness of the drug. We know Vidaza is not a cure - but if he hasn't had any significant side effects and does not require any transfusions we'd like to ride that train as long as possible. So, how about a very unscientific study right here on the boards:

1) How long have you/were you on Vidaza?
2) Were you transfusion dependent during treatment?
3) Did you stop because it stopped working, too many side effects or went to transplant?

Thanks all!

[DanL]

my experience was only about 3 months prior to moving to transplant. I have met somebody who went 56 months on vidaza before declaring that it was no longer working. he was transfusion depending starting at month 3 and lasting until round 54 or 55.

[Callie]

My dad received 8 cycles of Vidaza prior to transplant (stopped because he found a match and was in optimal shape to go to transplant), then I believe another 28 after he relapsed. He stopped in March of this year because the Vidaza stopped working. He only had one platelet transfusion during transplant, and then transfusions during/after Induction Chemo, but never during the course of Vidaza treatment.

[Annettec]

My mother was diagnosed at 77, with 13% blasts. Vidaza for 34 months. Stopped treatments as they didn’t appear to be effective. During treatment, she was transfusion independent for about a year and then seldom had transfusions until the last 6-9 months of treatment. She has now been off Vidaza since February 2017 and except for one bad infection when we thought she was going to die, she has been doing “relatively” well. She no longer receives platelet transfusions, even though her platelets are really low ( between 4000 and 18,000) and gets red blood transfusions every 3-4 weeks. She continues to amaze us wiht her will to live and her tenacity. I admire her courage and faith. She still has a good quality of life!
Hope this helps,
Annette

[JoMac53]

Just bumping this up. Aren't there more people that have been or are currently on Vidaza?

[DaveAvl]

My husband was dx'd with MDS last May, was determined not to be a suitable transplant candidate (longterm HIV, among other things) and began Vidaza in August. He got through five rounds without apparent positive effect. The sixth round was attempted twice, each one ending in hospitalization. Last Wednesday he was discharged into inpatient Hospice care, and is down to his final days.

[Sue&Dave]

Dave - So sorry to hear of this latest turn. Peace to you, Alan and your family in the coming days.

[AliceKay1]

JoMac53, to respond to your question February 1, I'm in the hospital in isolation because my WBC is 0.9.
So, the Dr says the vidaza may not be making me feel better, as he thought it would initially, but it's prolonging my life. I hope there's something they can do to raise my immune system, then.

Has anybody out there had Epogen to raise WBC while on Vidaza?. My doctor prefers to let the body heal itself in that respect, but I wonder if I should get a second opinion.

[Barbara K]

Dave--I'm very sorry to hear that your husband's treatments have not worked. I hope the hospice care team is able to keep him comfortable and provide you, and your loved ones, the support you'll need to get through this difficult time. Barbara

[allank]

Sue&Dave,
So encouraging to hear of Dave's current success with Vidaza. I am 65 with MDS-RS watch and wait since last June. I worry that when I get to treatment phase that it might not work, so hearing your story is heartening. Just wondering Dave's age, when diagnosed and type of MDS he has. I understand these are personal issues and understand if you don't want to post such. Good luck in the future, I have read of those who were treated 5 years or more with Vidaza before it quit being effective, I hope that is how it goes for you.

[allank]

Dave, sorry to hear of Alan's situation. I have read some of your earlier posts here and at MDS website about your journey with MDS and am sorry to hear how it is going. I have had hospice situations with my father/father-in-law and a brother and know how difficult it can be. My thoughts and prayers are with you both and your family.

[AliceKay1]

Originally Posted by DaveAvl

My husband was dx'd with MDS last May, was determined not to be a suitable transplant candidate (longterm HIV, among other things) and began Vidaza in August. He got through five rounds without apparent positive effect. The sixth round was attempted twice, each one ending in hospitalization. Last Wednesday he was discharged into inpatient Hospice care, and is down to his final days.

Dave, How're you and Alan doing?. Thinking about you.

[Sue&Dave]

Hi Allank - My husband was 58 when he was dxd in March 2015 with low risk MDS RAEB-1. He was on W&W for a year when we decided to go ahead with a transplant while he as was in good health. He had no match, so we were going to do a haplo / cord blood as part of a clinical trial. Ironically he was scheduled to start conditioning treatment the day he was admitted to the hospital for a subdural hematoma (brain bleed), which may or may not have been related to his MDS. 2016 wasn't a great year for him as he endured 3 separate brain surgeries and 2 months of IV antibiotics. His doc wanted him to start on Vidaza since all 3 of his counts had been drifting downward as he dealt with the brain issues, but also wanted him off the antibiotics for 6 months before he started treatment. By January 2017 he was so weak we had no choice but to start on the Vidaza. He just finished round 13 (we doubled up one month early on at the suggestion of his doc); and we couldn't be more pleased with the results. These past 2 years have been so important to us, making us realize how short and precious life really is. Up until then I had been hoarding my sick and vacation time in order to be there for him when he will eventually need to go to transplant. But during this time I also saw how sick he really can get, and of course how exhausting being a caregiver is. We are fortunate enough to have made the decision for me to only work part time to spend as much quality time together as possible. We are now focusing on bucket list things while we can. So, while this disease is a monster, we have chosen to look at it as a small gift that allowed us to understand how short life can be and live it accordingly. Best to you as you start your treatment.

[allank]

SueandDave,
Thanks for the encouraging words. My wife and I are looking at life now much the same as you are now. Grateful for the many years we have had and trying not to take any day for granted now. We are planning a family reunion this summer for all the kids and grandkids to be there. My variation of MDS is one of the best for an extended survival but I know it can change and get ugly really fast (you can certainly attest to that) so we will do as much as we can while we can. My oncologist thinks I have a good chance of putting off treatment for 2-5 years as my progression has been very slow to start with. I hope he is right but know I can't count on anything. Thanks again for your response, I wish you both the best in the future.

[DaveAvl]

Originally Posted by AliceKay1

Dave, How're you and Alan doing?. Thinking about you.

Thanks, Alice - I'm sorry to say that Alan passed away on February 7th. He lived 25 years after being told he had 2 years to live - that was for HIV, and new medicines in the early 1990s saved his life. Because of that, he had long ago come to terms with his mortality. His hope regarding MDS was to hang on until some breakthrough for folks who, like him, were not SCT candidates. We had six-plus good years together, illnesses and all...

[Sue&Dave]

Dave - am so sorry to hear of Alan's passing. It sounds like MDS came crashing into your lives and never let up. Peace to you and yours, Sue.

[Callie]

Dave - Please know there are many of us feeling sad with you. I am so incredibly sorry to hear about Alan.

Callie

[allank]

Dave,
That is sad news indeed, may you be able to find some comfort in the days ahead.

[JoMac53]

Sorry for your loss, Dave.

[Neil Cuadra]

Dave,

Perhaps it was that hope of medical advances that kept Alan going for so many years, and helped you too.

I'm very sorry to hear of his passing. You have my sympathies.

[DaveAvl]

Thank you, folks. I've been keeping busy and continue to start each day with a meditation meeting of a substance abuse recovery group. That keeps me going. Yesterday (Tuesday) was a mixture of picking up Alan's ashes and death certificates and cleaning out gross fish tanks for donation to the local hospice resale shop.

Looking back I can see the relentless progression of Alan's MDS. But he faced it with calm acceptance, and I was right on that former pilot's wingtip until I had to turn back while he flew on into whatever comes next...

[Jill2008]

I have been inactive for awhile. Just busy, enjoying life! I am currently on my 58th cycle of Vidaza. It took about 12 cycles before I was transfusion independent. I have been told that most doctors would have discontinued treatment, but my doctor stuck with me. His theory is that it has created a graft vs. leukemia effect. he briefly explained that the Vidaza has programed my donor T-cells to fight the MDS. I'm trying to find more information on this.

[JoMac53]

Jill, thank you so much for coming back and for replying to this thread. Did you have any GVHD problems after your transplant?

[AliceKay1]

Originally Posted by DaveAvl

Thanks, Alice - I'm sorry to say that Alan passed away on February 7th. He lived 25 years after being told he had 2 years to live - that was for HIV, and new medicines in the early 1990s saved his life. Because of that, he had long ago come to terms with his mortality. His hope regarding MDS was to hang on until some breakthrough for folks who, like him, were not SCT candidates. We had six-plus good years together, illnesses and all...

(I don't know how to respond without saving the quote)

Dave, thanks for responding to me. I'm sorry for your loss of Alan and happy that you had 6 good years together.

I'm in the hospital with pneumonia for the third time in a month. Tomorrow they're going to do a broncoscopy to find out if there's another issue. But the good news is my three daughters are throwing me an 80th birthday party in a couple weeks. Yay!. I have to get well for that.

[Thomas Hawkinson]

I have been on Vidaza for 14 cycles. Monday, April 23rd will be the beginning of my 15th round. I have had excellent results, to the point that the 7 day regimen is now down to 5 days each cycle. So far, no transfusions or other interventions. Side effects have been minimal.