High Risk MDS, starting 2nd cycle of Vidaza soon

[Kim Marshall]

My dad (70 years old) was just diagnosed with MDS- EB1 at the end of January. He was in remission from Multiple Myeloma and when his blood counts dropped- the bone marrow biopsy revealed his high risk MDS. He has done one cycle of Vidaza and is scheduled to start the second cycle next week on Monday. He had a rough go at the first treatment. Several days of diarrhea led to severe dehydration, and ended up with a 10 day hospital visit.

My question is regarding experiences of high risk MDS with Vidaza. We were told it could take 3-4 months to see it working. I’m curious how long it took others to see an improvement with Vidaza only and how long it worked for. I know every case is different, but looking for anyone willing to share similar experiences. Thank you very much.

Thank you,
Kim

[Kathie Wolf]

My husband was on vidaza for 5 months and two of his labs, hemoglobin and platelets moved to the normal range. At 7 months the wbc entered the normal range. He completed 12 months of vidaza and ended with normal labs. He’s been in remission since then, going on 4 years. He has low risk MDS…

[Bill Corbin]

While I do not have high-risk, I have low risk MDS and have been on Vidaza for 28 cycles and will start cycle 29 on March 4. It took 4 to 5 cycles for my CBC to become normal. My platelets have been in the normal range ever since. My RBC and WBC count fluctuate from the lower end of normal to just below normal each cycle of CBC’s. ANC has remained at the lower end of normal for most of the past 24 cycles. My side effects from Vidaza have mainly been discomfort and redness at the injection sites, fatigue, some queasiness controlled by Sofran, and constipation controlled by Miralax.

[Michele Polland]

I also have high risk MDS. It took 6 months for me.

[Marie Davis]

Michele,
My husband is high risk too. He has been taking Rebloyzl and it has raised his HG to about 11, but it seems like the medicine’s side effects are worse than the cure. He has had a bunch of cardiac and pulmonary tests and nothing found, but he can barely move without have serious breathing issues. After the 6 months for you did the levels get up to ‘normal’? And how long did they stay like that?
Thanks, Marie

[Marc Sevigny]

Hi All,
I am new to this site and learning to navigate through it. I had no idea that MDS was this common. I was diagnosed not long ago with high to very high risk MDS. I have two more rounds of chemo to go and I’ll be finished with my first round of Vidaza. I am also supposed to be taking a pill to go with the chemo but we haven’t received it from the VA (community care) yet. I believe this was caused by Agent Orange from my tour in Vietnam. The gift that keeps on giving. I am hoping we get it before the next round starts next month. Any I am 75 this year in October, happily married, living in Punta Gorda, FL, overlooking the Peace River. I am an artist and do aboriginal style dot painting, mostly abstract. I was also learning to play the fiddle and piano before this hit. Now, I am extremely fatigued and lightheaded when I stand. I am not afraid of death but I am actually enjoying my life now and would appreciate another 10 year or more.

[Susan Park]

Hi,

My husband was diagnosed 3 weeks ago with low MDS. His is a direct result of previous cancer treamtnet he recieved back in 2016.
I have noticed that some of you have mentioned that although you are low risk, you have started treatment. My husband was told since he is asymptomatic at the moment (0% blasts/wbc has been low since 2016 treamtnet/all else seems to be ok since last labs on 2/14), it will be a watch and wait with labs taken every 3 months. Can anyone tell me why with low they are already being treated? Unitl 3 weeks ago we had never heard of MDS.
thank you.

Marc Sevigny- we live in Florida as well- Brevard County- Viera area north end of melbounre
Sue

[stacey]

Susan,

20 years ago, when I was about 34, I was diagnosed with low risk 5q- subtype MDS with a normal blast count. The 5q- meant I had a specific defect in the 5th chromosome. At the time, I was also severely anemic. MDS had affected my red blood cells (and related hemoglobin), and I think just one other line (white blood cells) which wasn’t as big of a problem.
Upon diagnosis, I either needed medicine or red blood cell transfusions from time to time because of the problem with my hemoglobin being too low (5.9 at its lowest). That affected the oxygen being circulated in my body. I was extremely out of breath. The medicine that was recommended to me (Revlimid) had been in clinical trials and was known to work well at treating that specific subtype of MDS. It could boost the hemoglobin and red blood cell count so I could avoid getting packed red blood cell transfusions instead. The only thing they used to do for my white blood cell line was to give me a Neupogen shot a long time ago. That maybe happened only twice, to help boost my white blood cell count. Otherwise, I think I would have been in more of a watch and wait situation as well.
Hope this helps, and I hope others can chime in to give you their perspective for another type of MDS.
Best wishes to your husband.
-Stacey

[Susan Park]

Stacey,
That is so encouraging to hear that you have been 20 years with MDS. He has a 7q deletion (not the -7), as a result of previous cancer treatment. Even though he is staged as low they are saying possible in 5-8 years, he will need intensive intervention (stem cell/bone marrow transplant). Not really sure when one procedure is chosen over the other.
As of his last labs, WBC was actually in the normal range as were RBC. Platelets were just off a very little bit. Next labs are April. Sometimes it feels as if the stress of watching and waiting is going to be worse than the condition.

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