Dad's transformed to AML

[andrzej g.]

It goes too quickly.
Yesterday we did the flow cytofluorimetry.
Blast percentage in the aspirate is 27%.
4% of blasts in the peripheral blood.
Induction needed, but what the aim would be…
Golden standard is the infamous ‘3+7’…
No answers for now.
Tomorrow I’ll talk to some kind people in Wroclaw.
However unlikely it seems I’ll try to investigate into transfering my father to the German center of excellence.
Time is accelerating…

[Carrie]

I’m sorry to hear about your dad’s transformation. I hope that they can do something for him.

Carrie

[KP2112]

Have you talked with your Dad about this, what are his thoughts?

Kind Regards,
Karen

[Terri]

Sorry to hear your dad is progressing. I wish you well.

[PamyRn]

Sorry about Dad. You said his sister is a perfect match..is he considering a mini stem cell transplant? I know that age is a factor and thats why I said mini. How is he feeling and how strong is he? I transferred to AML in Jan. Had induction with the 3/7 I think you are talking about. Ara-C and Doxyrubicin. Just to let you know I did not have one symptom of nausea. Basically felt good as long as they kept me full of RBC and platelets…only thing was on 6th day, broke out in rash…bothered me for a couple of months…rash went away in a couple of weeks, but the itcing lingered on. All counts holding..last blast count 3%. Await stem cell transplant. 2nd 10/10 donor was just deferred. Hitting up the registry for a new batch. Best wishes for your Dad
Pam

[shirlsgirl]

I’m so sorry about your Dad’s transformation. If only time would stand still…Hopefully his doctor’s can come up with a good plan of action!

Thinking of you, Jody

[LisainOk]

Sorry to hear that:( Will be praying for him.
~Lisa

[geebeebee]

Very sorry to hear about that…hopefully the chemo will do the trick and give you some time to decide where to go from here.

Take care,

Greg

[sarah]

Sorry to hear about your Dad. Hope things will improve for him in time.
Sarah

[April]

I’m sorry to hear about your dad. My thoughts and prayers will be with you and your family.

[andrzej g.]

KP: No I haven’t. For that moment it wouldn’t change a thing. He’s depressed and I prefer to talk to him about promising treatment options he still has to choose from. I had a phone conversation with Professor Mufti from London today and that one was very encouraging. His experiences in reduced dose conditioning (fludarabine, busulphan and alemtuzumab) followed by hematopoietic stem cell allotransplantations are still growing to exceed the total number of 120 patients and the outcomes are quite astonishing.
Tomorrow I’ll talk to the Polish Professors from Poznan and Wroclaw.

Pam: You are the lucky one. It’s not common to reach remission from the MDS-AML. The odds are 50/50 more or less, stretching even the word ‘less’, I would say. Thank you for your post. Your case gives hope to all of us and proves that remission might happen even without significant toxicity. Best wishes in finding the right HLA match and succeeding with the transplant!

Thank you all for your posts.
It’s time to go on with action.

[alexandra7]

Sorry to hear that . My prayers are with you. Alexa

[Suzanne]

Andrzej, I too am in remission after High risk RAEb-t transformed into AML and treatment with induction and consolidation chemo.I also had a high risk chromosome change for RAEB. We actally caught mine pretty early when counts were still in the normal range. The transformation came just less then a year from diagnosis of MDS and I had 75% blasts in the marrow and a low % in the blood. It has been 2 & 1/2 years since I was diagnosed and a year and 3 months since I went into remission. My quality of life has been good for all except a few days during the first round of chemo.I hope your father elects to at least try treatment but everyone has to choose their own way.I know all the listed side effects to a BMT and any treatment I had scared me to death and it was hard to come to terms with the fact I might die in a relatively short time even tho I felt fine. There definitely are some of us that are doing much better then originally told. In my experience a 50/50% chance of success is very high compared to that for most treatments. I started off with an estimate of about a 30% chance with the two rounds of chemo, then went to something like a 40% chance when I tolerated the Zarnestra well. And now that I am finishing my last round of that used an experimental maintenance drug for the 1st high risk year of relapse, they are guessing that my chances of at least a long term remission is about 50%. I am thrilled!

[KP2112]

Hi Andrzej,

I am glad to hear that the doctors had some encouraging advice. I think that is one of the most impostant things to keep things moving forward. I was glad to hear of your plan to ‘go on with Action! Perhaps extend this information to your father will help become less depressed and more hopeful.

Ps. my dad was born in Poland, although I do not know the name of where, offhand.

Kind Regards,
Karen P.

[Jutta]

Hi Andrej,

sorry to hear about your dad’s condition.
You won’t know anything about my dad’s story as my last post was in 2003, I believe.

My dad was diagnosed with MDS in 1996 (RARS), became transfusion-dependant in 2000, had a mini-transplant (brother a perfect match) in 2002. The mini-transplant improved his condition – but after a few month, his cells took over again – his RARS transgressed to AML in spring 2003. Had a bmt in June 2003 – he passed away 2 months later as the cells didn’t engraft. He was at a German centre of excellence in Frankfurt/Main.

As you are considering a transfer to Germany I just wanted to tell you that the university hospital of Dresden has a good reputation for bmts. (Although you might know that already)
The one to contact is Prof. Ehninger: ehninger@mk1.med.tu-dresden.de.

All the best to you and your dad
Jutta

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