Vidaza working great so far
 

I am responding very well to Vidaza - saw positive results after a single cycle and amazing results after two. I'm on a 5 consecutive day, subcutaneous injection regimen with 23 days between injection cycles. All injections have been in my stomach. I've experienced minimal side effects - constipation (relieved with stool softeners) and injection site irritation (1-1/2" diameter red welts that dry and peel over about 10 days and fade out after a couple of months). I take one tablet of the anti-nausea drug Ondansetron 30 minutes prior to each treatment and have not experienced any nausea.

My biggest fear is that the Vidaza will stop working! The longest I've heard of anyone being on it is 55 cycles, nearly 5 years! However, I don't know the specifics about that person's MDS. My oncologist is pushing for a bone marrow transplant but I don't have a related donor and am not ready to take that large step.

Anyway, I know how hungry I've been for information and really appreciate these forums. I'd be happy to answer any questions from my personal experience thus far.

Karen,

Congratulations on the good response so far. There's probably little data for very-long-term evaluation of Vidaza (azacytidine) since it wasn't FDA-approved for MDS (including RAEB-2) until 2004. However, I wonder if they are still tracking the patients who participated in the trials that led to that approval. Those patients started taking Vidaza when the trials began and it would be wonderful to hear that some of them are still surviving on it.

It's understandable that your oncologist wouldn't be anxious to look for alternatives when you are doing well. But it's worth staying aware of your options, including the possibility of a transplant. You said you don't have a related donor. Have they done the initial registry search for an unrelated donor?

Thanks, Neil. Both my hematologist and my oncologist are strongly encouraging me to try to get the BMT. They've submitted me for a preliminary registry search for a matched unrelated donor. My husband and I are the ones resisting, struggling with the idea of having such a dangerous and debilitating procedure when I'm currently feeling so well.

It would be wonderful to hear more stories of long-term azacitidine (Vidaza) successes. For me, it seems like a miracle drug. When I was first diagnosed three months ago, I was told that my life expectancy was only about six months if treatment failed and I did not get a BMT. Having been healthy my entire life and coming from a long-lived, healthy family, I was stunned. My own positive response to this drug, as well as the success stories I've read here and elsewhere online have given us much hope.

Congratulations on your positive response Karen !

My dad completed his first 7-day cycle yesterday and things look good so far.

Counts prior to first dose (after 1 unit packed cell transfusion):
Hb 9.9/WBC: 10,900/Platelets: 44,000

Day 4 counts: Hb: 8.5/WBC: 5100/Platelets: 35,000

Day after 7th dose: Hb: 9.5/WBC: 7700/Platelets: 46,000

He had 100 mg Vidaza for 5 days followed by 200 mg doses on day 6 and 7.
Apart from that he was given an antibiotic cover (Piptaz) as the doctors suspected that eventhough his ANC was quite high, the quality of neutrophils may not be that good. His main reaction was nausea and constipation which were solved by Granicet injection and Cremaffin/Isapgol. He had poor appetitie initially which improved a bit as the doses progressed. Vidaza was administered IV.

Apart from that he used to receive Insulin injection for his diabetes and they have stopped and moved back to oral medication for that after the doses as well. (He had never had to have insulin injections even though he was 30-year diabetic - just oral medication and exercise routines until MDS).

Next dose in 23 days.

My husband just completed his 10th round of Vidaza and is doing very well. He was a really sick man when MDS was first diagnosed. We thought he wouldn't make it 3 months but with the good Lord's help, prayers and last but not least his oncologist, pulmonary doctor, cardiologist and wonderful family doctor it has been almost a year. We are looking forward to being together for many more months and years. When the Vidaza stops working we pray that there will be another wonder drug to carry on. God's blessings to all of you who are fighting this disease and to the caregivers who are right beside you.
ann

I was a little disappointed today. My numbers are still quite good, especially compared to what they were when dx'ed but the platelets dropped back out of the normal range again. I thought I had the Vidaza cycle figured out regarding effects on blood counts but this is opposite from last cycle's behavior. In my first two cycles, my white counts were up and my reds and platelets down immediately after the treatment week and then steadily rising during the time off and my whites declined slightly midway through the time off and then started climbing again by the end of the time off. This time, my highest reds and platelets were immediately following the treatment week and the whites have climbed gradually with no dips. I know that reduced platelets are common with Vidaza but I wasn't expecting the drop after they rose so dramatically during the second cycle...got all the way up to 265k and am now back down to 132k. Of course, that still sounds great compared to the 19k they were pre-Vidaza! My doctor does the CBCs weekly and the CMPs monthly. Next week, I start cycle number 4.

Counts 3 wks after 3rd cycle: WBC 7.0k/Hgb 12.9/Hct 37.2/Plt 132k

CBC and bmb today - platelets dropped further to 102. Doc says they usually bottom out mid-cycle and then start to climb but mine have steadily decreased since last injections. I start cycle 4 next week. Perhaps it is simply too soon for everything to stabilize.

Just a brief update...you can see from my signature that things are going well with the Vidaza as I begin cycle 9. The platelets still bounce all over but everything else is stable at the moment. Hurray!

Vidaza
 

Hi Karen,
Congratulation to the good response to Vidaza :)! You belong to the little more than 50% of MDS patients that get improved counts. Hope the response will continue a very, very long time!
Kind regards
Birgitta-A

Mausmish
 

Congratulations on your treatment. I wish you much success. I too am on Vidaza - just finished first month. I was on dacogen, but didnt work. I am hoping to have the success you are having.