Treatment related MDS

[Hal]

Just lost my beautiful remarkable wife to AML. She was treated twice for CLL with FCR as was recommended by Dr. Keating at MD Anderson. She acquired MDS 11/2 years ago and thinking of all her specialists was that it was treatment related caused by the FCR. No one can tell just which round of FCR was the culprit, but the thinking is it was the second go-round administered 2 years ago. At no time was it told to us that it was thought that FCR has a 5-10% chance of causing MDS. No mention of this risk was mentioned in the consent form or in our conversations with Dr. Keating.
I would like to know if others out there have had a similar experience and would like to communicate with them.

[Mary4Mike]

Hal,
I would like to extend my condolences to you and your family at the loss of your wife.

Mary

[Anneg]

Hi Hal,
I am 53yr old, was diagnosed (can not spell) with treatment realated MDS right before xmas. Mine was 4th stage Breast Cancer in 2004 and 2008. They did find the culprit, the very first chemo, and yes it was a side effect that I knew nothing about. I am and 5 day cycle of Vidaza and 21 days of Revlimid. Waiting for a Bone Marrow Match from the donor list. Brother is not a match. And of Course My Cond. are with you. May the lord let you remember the good times and the laughs.

Anneg
God Bless

[knocks]

My heartfelt condolences on your loss. My husband was just diagnosed last month with treatment related MDS. He had cancer of the nasopharynx 5 years ago and had radiation and chemo.

We were informed that there were risks down the road from the treatment, although I don’t know if I understood exactly what those risks were. However, he had only a 40% chance of a cure with the treatment so we would have chosen the same treatment even if we’d known the eventual outcome. It gave us 5 cancer-free years and he would probably have died quickly without treatment since it had already spread to the lymph nodes.

I lost my father 2 months ago to primary AML. It is very hard and now I see my husband starting down the same path. I’m not ready to give him up yet. But I would not trade these last 5 years for anything.

[Anneg]

Hi knocks:
I agree whole hardly. I got MDS from Breast cancer treatment. Did not know anything about the MDS possiblity. But it gave me 4 and a half years of cancer free. Then breast cancer came back. and then clean form 2009 to December 2011, when MDS was diagnosed. Brother not a match, now on list. Chemo is keep AML from full blown. Hope things are well. Always in my prayers.

Anneg
God Bless

[Author]

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