Clinical Trials – To Do or Not To Do?

[bexar2120]

I have completed 4 rounds of Vidaza and am having excellent response. All blood indices are normal.

But, I had a consult with Bone/Stem cell transplant physician this past Wednesday. I have to be mindful that MDS progresses to AML. The main point of this consult was to determine whether to continue to Stem Cell transplant. It must occur while there are no indicators of progression to AML.
The visit reinforced that Stem cell transplant is difficult process and Quality of Life will degrade. For How Long? You will discover this when you choose that option.
So, I contacted my Hem/Onc requesting assistance to find a clinical trial that applies to my genetic abnormalities. I was researching clinicaltrials.gov but, decided best to seek assistance from HealthCare team.
My preference is to enroll in an appropriate trial but will pivot and turn when my clinical situation changes.

[Kathie Wolf]

My husband has followed a similar process. He did one year of Vidaza and went into remission, he is now going on four years this summer and doing fine, We consulted with the stem cell specialist at Stanford midway thru and while it is an option, it is difficult and not always successful. We opted to stay with the Vidaza as it was working. My husband was diagnosed in 2017. He was 71. He is very active, hikes, hunts and has no underlying diseases. His Vidaza treatment was in 2019. Generally Bone Marrow transplants are not done after age 75, but the specialist told us each case is looked at independently. So for know, he is staying the course with every four month blood tests. Curious why you are looking for a clinical trial. Sounds like the Vidaza is working for you.

[Amy S.]

Thanks Kathie for sharing. Your husband is blessed to be in remission. May I ask if he is still on Vidaza since 2017 or is he off medication and is under monitor only? I am asking because I am thinkg of stopping the vidaza treament after a remission. Thanks very much for any information.

[Kathie Wolf]

Our oncologist gave him the option of staying off of it or continuing. She said there was no right answer based on the studies. So, after a year of treatment, we stopped. She did feel at that time the years treatment was important. We felt like his body would be better without the Vidaza, no need to expose him to it if he was stable. She also told us, if his remission stopped, we could use it again. I felt like it would be more likely to be successful if he had not been on it all this time. Less risk of resistance. Every persons journey through MDS is different. His diagnosis is very low MDS, so not as big a risk to progress to AML. As a retired RN, I am very aware that the physiology of each person effects how they do with any disease. The healthier and active he stays the better he does and hopefully will keep him in remission. Good luck! Be sure you use the resources from the Centers of Excellence for MDS. For us Stanford is close by and our doctor consults with them as needed and they are readily available to her. Good Luck!

[bexar2120]

Well, have a consult with Genetic counselor and a scheduled appointment for consult at Houston- Mays Cancer Center downtown in mid May. I have High Risk MDS with a genetic variant, TP53. Purpose for the consult is to search for appropriate clinical trial.
Otherwise, Cycle 5 starts on Monday and will continue on till physician says clinical outlook has changed. Hopefully, Vidaza treatment stays effective for near term. No remission for this variant.

[Joanne Roberts.]

It’s hard to define “remission” in a disease such as MDS. If your counts are improving or stable, that demonstrates the Vidaza is effective. I was diagnosed 20 months ago with high-risk MDS (RAEB-2), and have had a nice improvement in hemoglobin and platelets. My neutrophils bounce between 400 and 900. I am a retired palliative care physician, and our plan is to add venetoclax to the Vidaza when my hemoglobin starts to decline. Once that second drug shows evidence of failure, I’ll volunteer for clinical trials. All in all, I’m please with the course I have chosen. I’m 72 and in excellent health otherwise. I chose the Vidaza route over BMT because I wanted “good life over long life.” As another person mentioned, quality of life with BMT can be rugged, with long-term outcomes in older folks being not a lot better than Vidaza/venetoclax.

[bexar2120]

Yes, Kathy- most interesting that decision was made to discontinue Vidaza treatment. Never occurred to me to stop Vidaza. Anyway genetic counseling found no inherent risk for myself or family/children. Had Hem/Onc consult at M D Anderson Houston (May25 2023) for TP53 variant clinical trial. They performed bone marrow biopsy which gave me important information concerning future treatment decisions. They performed Next generation Sequencing for my variant and any other genes that were developing. received all results yesterday and glad to report all identifiable variants were lower limits/non detectable/ normal… for Now. Stop Vidaza,,,hmmmm. Definitely speak with my physician about stopping Vidaza in future. Currently. started Cycle 6 today and asked for a Return to Work letter; only work 20 hours a week as a part time driver for Enterprise car rental at airport. Stay Healthy and LiVe Life!! We just returned from Las Vegas this Saturday. I am 61 this Wednesday.

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