Conversion to AML after 15 Years
 

After 15 full years of living with MDS-RARS with over 800 units of PRBC's transfused and <5% blasts, my CBC results started climbing last month. Over that time I went from 1.7 WBC to 17.0 WBC today. Platelets went from 40,000 to 90,000 and have now dropped back to 70,000. The differential recorded blasts in the periperhal blood of 15%. I had a BMB two weeks ago. The morphology report stated 75%-80% of the marrow was comprised of blasts. As of yesterday, my ANC was reported as "Failure-Instrument limitation Very Abnormal."

I was admitted to Penn yesterday and began induction chemotherapy today with 3 days of 15 minute idarubicine ("IDA") infusions and 7 days of continuous Cytarabine ("ARA-C") infusion. By day 14, my marrow should be cleared-out and my counts should be zero. Hopefully they will rise during the next 14 days. The question is whether the leukemic cells will come back. If the leukemia is gone, then I can go home for a month and come back and get a bone marrow transplant. Don't know the status of the donor search yet.

I can honestly say that I am scared and think the deck is stacked against me. But I believe that there is no alternative to hope.

Bob,

We can wonder what could cause such a rapid change after 15 years but there may be no way the doctors can solve that mystery. What matters is that you get through this treatment.

This must be a tough setback to take, but like you I think hoping for and working toward the best outcome is an important way we help ourselves. Even though this is not an easy treatment regimen, it may finally be the year you finally beat this disease.

I wish you the best of luck and I hope you have Penn's best doctors on your team.

Thank you Neil. I remember the old AAA-MDS listserve in 1998; the stories about young Katie with AA, the comforting, informative words of Suzanne Fleishman and the always optimistic tone of Bob Carroll. And I remember your and Ruth's battle. It has been a long odyssey for me. I will let the post my status as it develops.

Bob

Hello Bob! Just want you to know that I'm hoping for the best results possible for you during this treatment. Hope is very important...

Best wishes

Good luck with the treatment Bob. Must have been a shock after such a long period of time to find the transition to AML.

Hopefully there is a donor there for you.

Bob,
I wish you the best. Keep the Faith!
God Bless,
Sally

keeping you in my prayers Bob!

AML
 

Dear Bob,
What a shock for you when they report that RARS patients seldom transform to AML - many of us with more dangerous types of MDS are always worried about AML.

We do hope the induction therapy will work OK and that you will be able to receive a SCT!
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, tx dependent from dx due to severe fibrosis. Supportive therapy until 2010. Since then positive result with Thalidomide + Prednisone.

Hi Bob: This is a total shock! We've had some debates over the last few years. I've always regarded you as an inspiration, both for having PRBCs to keep going ahead living with MDS as well as a great source of knowledge.

I wish you best of fortune with the upcoming treatments in your future. With all you've been through, you can be successful with this too! Be sure that you're in our thoughts for the best outcome. Keep strong and let us know how well you're doing when you can. :cool:

Regards, Ric

Hi Bob,

What a shock for you. Your induction regime is the same as mine was. Fortunately I did pretty well on it. Unfortunately, my bone marrow never regenerated & had gcsf injections but then was told the leukemic cells were back. So did a second round of chemo. Then remission & to transplant on march 6th. So even if remission doesn't happen first time round you just pull yourself up & go again!

I too was scared & like you felt the odds were stacked against me especially already being tired from 2 rounds of chemo, infections etc.. but now in hospital I take each day as it comes.. fight one day at a time, think positive, get up & walk each day.. like everyone says. Good luck to you on this next detour in your journey, here's hoping there is not too many speed bumps , detours & loop the loops!

Sharnie.

Sad news to hear from Bergit...
 

From Bergit's post in MDS Foundation patient forum

"Dear all,
I was a friend of Bob and we knew each other through MDS.
I thought, you all knew already, because nobody had posted after april so far. But since there is a new post, I think I should tell you that Bob passed away at the end of April from his second chemotherapy. I am still very sad, I lost a dear friend.
You can read some meomorial remarks and see some photos on the website of the MDSF, you only have to go to the homepage.
Regards, Bergit"

Thanks Bergit. This is so sad to hear. Bob was an inspiration to so many of us, Ric

Beautiful tribute.....

this is certainly sad news. Bob truely inspired many here on the forums.
could someone please post the link to the tribute for Bob?

MDSF link...

http://www.mds-foundation.org/in-mem...bert-weinberg/

thank you so much.