[celebrations]

Dear Janice, Lisa and Greg,

by chance I've come across your discussion, which caused anxiety and grief in me, since I lost a dear MDS-fellow-patient yesterday. My age, 10/10 transplant of her brother, good post-transplant development, then after six months of moderate shape one infection followed the other plus a severe liver GvhD...

I am in a little leukemia-forum, which I present with three friends of mine.
The members (only about 40, open for newcomers) meet once a year to spend a weekend together. So after the years, we have known each other personally and there are little regional meetings in between. When we meet, we definitely have fun, we eat and drink, have sight-seeing or just walk around a bit. But unfortunately we always have to say good-bye to several friends, who do not make it throughout the year. In 2010 we lost seven of us, this year we've lost two...
Those who are "off the dangerous zone" had their transplants rather in their thirties or fourties...
In fact there is only one ex-MDS-lady, who is rather well off.

BUT in my patient support group there are three transplanted guys (45, 50 and 69 !) who are feeling fine after having been transplanted six months before. I hold them up as my models.

NONE of them had a choice. SCT was the last option for all of them.
I still have the choice, confirmed by my first, second and even third opinion.
I repeatedly went on the nerves of my docs in three different mds-centres.
All of them nodded their head. Even when my tx-frequency will increase (now I am due every 16 days...), NO recommendation for a SCT!!!
They have been telling me that for 6 years now. I was informed, that there would be three cases which would alter my situation immediately and would lead to a SCT-decision.
- a steady decline of white counts and platelets ( I am between 3,0-4,0 wbc and 250 000 plts)
- an increase of blasts over 5% (I don't have any yet)
- an additional chromosomical aberration (I have my trisomy 8, between 50 and 60 % also for six yrs now)
Each of these changes would mean a severe progression of the disease.
And then SCT will be my last option.
Never before.

I am very thankful that your discussion was so realistic, though hard to bear. Well, yes, SCT as a cure? I know all the statistics (of course I try to ignore them). There is only a few of us who will be lucky.

Recently one doc said to me: "If I transplant you tomorrow, you might be dead within two months. If I don't do it, you will be alive much longer than that. Taking this into consideration, I never would recommend you for a SCT at the time being "?

I know, I did not tell you "new things". But your posts have confirmed me again that watch&wait CAN be the best for some of us. It is the best for me. Thank you for reading and sharing.

Solidary greetings,
Bergit