MDS to AML=No hope?

[Wen Ouyang]

Hi All,
Thank you in advance for any reply and comment. My dad 72y/o was diagnosed as MDS patient with 16% blasts in June 2018 and started Vidaza in Aug 2018. His blast was reduced to 9% in Sep 2019 but counts are not catching up. So our doctor recommended us to try venotoclax+vidaza. In the first two cycles he was tolerating it well, although we didn’t see the counts improved (our doctor told us it is normal). We continued to 3rd cycle and it became tough for him. Counts were still low (WBC 0.5, PLT: 7, Hgb:70). He received weekly transfusions but starting in mid-April, he developed a fever and was admitted to the hospital, he ended up starting there for 1.5 months and the drs couldn’t find out the origin of the fever. IV antibiotic (meropenem) seems able to bring the fever down, but he is so tired of the hospitalization, so we requested to switch to oral antibiotics and brought him home. Two days after, his fever returned and we went to the emergency again, this time his hematologists told me that there is nothing they can do now to treat him as his mds progressed to AML and suggested we take him home and start palliative care instead. He was scheduled for weekly transfusion, but now the doctors said they may not continue.

My Dad is still very stable and does most of the activities on his own, we are just surprised that the doctors suggested taking away the supportive treatments (antibiotic and transfusion).

Just wanting to know if anyone has a similar experience and knows if there is any other treatment option we can try for him?

P.s we are in Toronto

thank you
Wendy

[Kathy Stermer]

My MDS has progressed over past 2 years now heading towards AML. I have failed to respond to treatments, have been followed by palliative care since the beginning of diagnosis, and have now gotten my affairs in order. Just turned 62 and trying to enjoy the time I have spending with family and friends. Have to say, now not feeling bad side effects of treatments and quality best now. I have accepted the inevitable of this disease and have faced what is to come for all of us. My family is completely supportive of my choices and am at peace taking it one day at a time.

[Anonymous]

Hi Wen, Thank you for sharing information regarding your father’s health. I know this is a difficult time for you. The MDS Foundation has created an AML resource intended for patients with AML view here https://www.mds-foundation.org/what-is-aml/. Here you will find expert advice. I would also recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Drs. Karen Yee and Rena Buckstein are both in Toronto. I hope this helps.

[Wen Ouyang]

Thank you kathy and moderator for your response! I agree that quality of lives is more important that the length of lives. I will try my best to support my raised cheer him up. Best wish to you kathy!!

Wen

[Fallis Beall]

Hi Kathy,
Thank you for your update. I continue to battle painful canker sores and extreme fatigue. Before treatment, was feeling full of energy and would have never known there was anything wrong except for my blood-work numbers revealing the contrary. Very much salute your decision as I have been attempting to streamline and get my own affairs in order. Appreciate reading the clarity in your post to enjoy seeing family and friends instead of being tied to a rigorous treatment schedule.

Fallis

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