MDS to AML question ??

[Pam Grillo]

My Mother was diagnosed with high risk MDS in July and began Vidaza in August. After 3 cycles which she tolerated very well her Dr. said “it’s not working and we should have seen some results by now” and stopped treatment and did another bone marrow biopsy which showed that blasts had dropped from 7% to 4% however she had developed extensive scarring in the bone marrow (Fibrosis) and nothing more could be done so he gave put her on prednisone and changed her blood work from twice a week to once every 3 weeks. After 10 days we requested her blood be checked based on how out of breath she was and sure enough her hemoglobin was down to 64 so now her blood is being checked every 10 days. Anyway, she just had her 2nd bloodwork done since starting prednisone and her white blood cells are up to 84 (from 45) 10 days ago and her platelets are 10 (holding steady for a while). Based on this bloodwork we had a call within 2 hours and the Dr. says it has now turned into AML and she has days to weeks to live. We are shocked by this and think it doesn’t make sense. She feels great, isn’t in any pain, is still getting herself places and now she has days to weeks to live!! It seems he’s basing this on her high white blood cell count which from our understanding can be caused by prednisone (not sure how high it might elevate it) It was at 11 when she started the prednisone and was at 45 after 10 days and now up to 85. Does anyone have any thoughts or have a similar experience with this. Is it possible to be this close to death and still feel great? Should she not be feeling ill if this was the case? Any thoughts would be appreciated.

[Sherry Pratt]

This sounds a little off to me. I would get a second opinion right away. I have no experience with AML personally, but Inwould either request an appt with this doc to ask him in person or get a se one opinion at a center that specializes in MDS. You can email me if you would like at pratt8075@aol.com

[Pam Grillo]

It sounds off to us too. I’ve been thinking about getting a second opinion as well and will see what she thinks about doing that. We have an appointment with her family Doctor at the beginning of next week and he’s the one who had to break the news to us (he got a call from the Hematologist after the blood test results) anyway, he also doesn’t think she has the symptoms that should go along with this diagnosis although he does say that he is not an expert in MDS/AML. The nearest Center of Excellence is 1600 km away and I’m not sure how to even go about getting an appointment there but might try looking into this. Thank you for your support.

[Glen Sakamura]

I tried putting up two responses and do not see them here. Send me a private email. I am a patient with MDS/MPN and Sweet Syndrome. I can share to you what my HEMONC, not PCP is doing for me. For the last year. glenmsak@yahoo.com

[Michael]

Please seek a second opinion preferably for a center of excellence. I was diagnosed in July 2016 with low risk MDs. My sole cytopenia is neutropenia. My typical wbc is 1.5 with severe neutropenia. I have been on watch and wait the entire time. In July 2019 , I was diagnosed withpolymyalgia. I have been on prednisone since. My while blood count has increased to 3.0 and neutropenia has become mild from severe. I was told prednisone would cause increase in wbc. Last week I had my annual bmb at Ctr of Excellence. I don’t yet have results but there were no blasts in my peripheral blood. There was no talk of progression to AML.
Best wishes.

[David]

Get multiple opinions.

Early in my diagnosis (low risk) I was advised to immediately get a stem cell transplant, to never get a stem cell transplant, to take Revlimid, never take Revlimid, etc, etc.

Take all those opinions and combine them with your own research and plan of attack on MDS. Go back to one of the doctors you had the best experience with and lay out your plan with them. If they completely shoot you down, its the wrong doctor. If they offer suggested tweaks to your plan, it is the correct doctor.

[Cheryl McCall]

Get anothe opinion. Or two. It’s worth the time and trouble. My HEMONC recommended Revlamid, so I went to MD Anderson in Houston. They did a whole new BMB and a raft of bloodwork. If I had taken the revlamid I would most certainly developed AML within a year or less because of the multiple blood abnormalities. On weekly Procrit injections I’ve been toddling right along.

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