Life After Decitabine/Vidaza/Inqovi?

[Amy Clark]

Looking to see if anyone has had experience with being on an HMA successfully and then stopping the HMA while blasts were low. If you got off of an HMA, how did it go?

I am beginning to think that the drug did what it could some time ago by arresting the progression, and now he needs a break from the drug. b/c we are just adding more harm than good to his body. My husband’s body has stopped tolerating the drug he is on (Inqovi), so he has very few good days in his five week cycle, but we are scared to get off. He once told the doctor he wanted to squeeze “the last bit of blood out of this turnip” before he gets off of it, and I think we are at that point. The doctor has gradually lowered the dose to two pills every 5 weeks and my husband still has multiple debilitating side effects. He has been on it for 4 years and 4 months. He has ASXL1 and SF3B1 mutations and was reclassified as low risk from high risk with the new tool last year. He has needed blood about once every 8 weeks for several months now due to the valley in the cycle. We feel blessed to have been on it this long. We know we are lucky in that regard. Thoughts?

[Heinz]

Hi Amy,
you want to know what life is like after stopping HMA therapy. I have AML and was on Vidaza for 26 months. 4 months of that with VEN in addition. After a few months the effect of the therapy diminished and a steady decline in all blood counts began. After 26 months the therapy was stopped in the hope that the body’s own hematopoiesis would recover without the myelosuppression of the drugs. Unfortunately, this effect did not occur, but the negative trend continued. Within one year I received 10 EC and 4 T-transfusions. So much for the answer to your question.
In September of last year, I received a new therapy for 50 days, from which I still benefit today. However, the therapy only promises success if the karyotype is normal (not complex). If this is also the case for your husband, I will gladly give more details.
Until then, I wish you and your husband all the best.
Heinz

[debbie stern]

Hi Amy, I have been on a micro dose decitabine protocol for almost 4 years. It is still working but not as well as it did and I know we will be looking for something else soon. I am 72 and not a good candidate for a transplant. I would be very, very interested in the new therapy you received. Could you please give me the information. My email is: deblevstern@gmail.com. Debbie Stern

[Amy Clark]

Thank you Heinz and Debbie,
I appreciate you both taking the time to share your experiences. I had read a while back about a couple of people on this forum who were taken off their HMA after having a large reduction in blasts and wondered how they were doing. In each case it had been a year or two since they stopped HMA treatment and they were fine. I also wanted to hear from others like yourselves.
Heinz, I am so sorry yours turned into AML, but am happy you had a treatment for 50 days that worked. I would love to hear about it in case we someday need it as my husband has a normal karyotype. My email is acclark0603@hotmail.com. Debbie, that macrodosing is also a new concept to us. If you don’t mind me asking, could you call or email me specifics. 832-540-4214 Do you still have myelosuppression with that level of dosing? God bless you both, Amy
If anyone else has had experiences after choosing to stop HMA treatment that they are willing to share, please do. Thank you in advance.

[Michael Collins]

I started seven months ago on both Inqovi and Venetoclax. After three months by blood counts really dropped. On top of that I caught covid at Christmas and had to wait another month to recover before I started my fourth dose of Inqovi. Only two pills this time. Stopped Venetoclax. Did a bone marrow biopsy after the third round and no blasts were discovered either in my blood or bone marrow. Glad to read that someone has been on Inqovi for over four years as I have been wondering where this journey is going to take me. I live in Indianapolis and I’m utilizing Community Hospital Cancer Center which is now affiliated with MD Anderson Cancer Center. MD Anderson is recommending my treatment and following which I am very grateful for.

[Michael Collins]

Per my earlier reply what are some of the side affects your husband is experiencing? I just completed my fifth round of Inqovi. Only two pills. Doctor intends to go to three pills next round if my platelets recover quickly. My major issue is bone/muscle pain in both arms.

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