Converted to AML

[bobweinberg]

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.

[frank]

sorry to hear this, you are always a modol for me, even i didn’t post. be strong.

[ron baker]

converted to aml 1/15/13 from mds dx 8/21/11. admitted to vanderbilt hosp. 1/18/13, 2 treatments of 7 & 3 (52 days) now progressing to consolidation. Wish you the best.

[Mary4Mike]

Bob,
I am sorry to read about the change in your health status. Please keep us posted as you feel able.

We, too, believe that there is no alternative to hope. When it comes down to it, that is really all there is. I don’t know what your hope is in, but we gave our situation over to the Lord. He gave Mike healing.

You are in my thoughts and prayers.

[Judy D.]

Bob,another mountain to climb. Keep your positive attitude and, as you can, keep us posted.

Judy

[bobweinberg]

Update on Induction Chemo: Day 14 BMB showed no effect on blasts. So while I am still experiencing horrible side effects, I know that that effort was for naught. I will begin Day 1 on Monday of a new regimen of ARA-C infusion every 12 hours resulting in 10 times the daily dosage that I received in Ida/Ara-C regimen. Hard to imagine a new set of side-effects being pounded on me before I finish with the ones I have from the first round of chemo. So we are looking forward to 51 days here in total and remission when we leave. It’s all up in the air. Funny how MDS was no more than making adjustments to lifestyle when all I really was worried about were 8-11 day red cell transfusions and taking Exjade daily. It was almost no more than a 15 year inconveience. I am humbled now.

Bob Weinberg – Diag. MDS-RARS May 1998, Converted to AML Feb 2013.

[riccd2001]

Hi Bob: So sorry to hear initial chemo gave you such nasty side effects, and not improve blasts. Stay positive and hopefully you’ll find second round will give better results and not so much of the bad side effects. Best wishes for better days ahead.

[dmaratta]

prayers are with you!

[franb rars dx 12/06 age 57]

I’ll be praying for you Bob. You’ve always been there for other MDS patients, including me. You’re way overdue for a break!

[Judy D.]

Thinking of you, Bob, and hoping your side effects have diminished. Stay strong and positive.

Judy

[Carolyn Talbert]

You have been an inspiration to all of us and our prayers are with you. Faith and hope will bring you through this.

[choijk]

Bob, I am so sorry to hear about your health condition. I remember your kindness and willingness to help and teach others who were new to the site. After my father passed away three years ago, it was hard for me to come back to site. Today is actually the first time I have checked in since three years as I was trying to find a post for low platelets and pineapple juicing. Life is full of unexpected surprises, as my mother has now been diagnosed with colon cancer, which led me to join another wonderful forum called the colon club, where one member had some trouble with low plts.

Bob I will be praying for you, and that your body has a positive response to the chemo. Many blessings bob, you are a very special person. Xoxo

[celebrations]

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

[riccd2001]

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

[choijk]

Thank you Bergit, I was thinking about how Bob was doing. I just read his memorial and watched the slideshow. What a beautiful memorial for a wonderful man.

[Author]

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