CMML morphed into AML

[johnwc]

When I had my doc visit two days before admission for BMT, she informed me my Leukemia has morphed into AML. Pretty rare, I think.
My original "cure" chance has gone from 60-70% to 20-30%.
Relapse chance and GVHD disease problems have also greatly risen.
I have a lot of questions that the docs are answering but does anyone out there have any thoughts or experience with this situation.
Much appreciated,

John in Portland Oregon

[Cheryl C]

So sorry to read this John. I can't advise you except that in your changed circumstances you are very wise to give the SCT very deep and serious consideration. Baillie is a shining example of how successful it can be, but there are also people on this forum who are really struggling post-SCT/BMT. I wish you all the very best as you try to decide what is best for you. May God bless and guide you.

[bailie]

John, keep in mind that there are many in our hospital who have similar circumstances and are doing very well. I met with many in our infusion room. You have an excellent Dr. and you have a great attitude. Do your very best to control everything within your power. All of us are working with odds we never imagined. We just want to make sure we make our best effort.
Keep us posted, we are pulling for you. I hope you have had a chance to enjoy the excellent milkshakes.

[johnwc]

Hi Bailie,
Oh yes the shakes are great. Pretty hard to screw up Hagen Daz and Milk.
Ever blessed to meet Dr Trubowitz. She's not a SCT specialist but other Leukemia. Great long frank talks regarding having two leukemia's now and chances for quality of life and now in a high risk transplant status. My wife was here and we talked about what gives me the best chance for some quality time. Neither of us want a SCT with years of sever GVHD. Not a life I want and the chances have risen. I've had great sit down talks with some of the nurses and the doc. Never felt rushed. Great staff!!
JOHN

[bailie]

John, does that mean you have decided against a SCT? Whichever way you decide we all understand its difficulty and wish you the best. Whatever you decide it is the right decision and not worth second guessing. Any information you wish to share is greatly appreciated.

[johnwc]

Meeting tomorrow with Dr Meyers, my main doc. If i don't do SCT probable death in 12-18 months. Probably going to go ahead with SCT, as I like a challenge and brings out the fighter in me.

Still got a rash?? Anything else??

Numbers are just starting to rise and will probably be able to go home Thurs-Sat. Getting pretty bored with the menu and crappy internet and their idea of cable TV.

JOHN

[bailie]

John, that is great! It is the decision I was hoping you would make. I was in the exact same position so I know the thought process. In my first couple of appointments I heard the words "7 or 8 months and get your affairs in order". It was then that I decided that if there were better options, I was going to give it a shot. Family and friends are too important to turn loose.

My rash is pretty much negligible. Absolutely no problem. It happened over small areas and no itching and hard to notice. Seems like it has run its course. Nothing else going on. I am still power walking and feeling stronger each day. My leg muscle is almost normal. The one thing I have noticed is the golf clubs feel heavier indicating that my arm strength is not quite back to normal. I am on Day +122 and hoping to continue feeling very stable.

[johnwc]

Oh, you are my guiding light. Thanks for the news. Four months out and #1 complaint is the golf club is heavy. I feel like every muscle is atrophying with lack of blood cells delivering support.

Just got email from doc. Transplant is on the 5th, so being readmitted on the 1st... They had better get me to my bed by 1:30 so I can watch the DUCKS.
GO DUCKS!!!

JOHN

[KMac]

John,

You are a brave man, and I'm very glad you've decided to fight. Your courage gives inspiration to many others. You're a soldier now, fighting for not just yourself, but for all of us in the war against blood disease.

If not for the brave souls willing to go in against the odds, SCT/BMT would not even exist.

I recall reading about one of the world's longest post-BMT survivors, a young kid with aplastic anemia transplanted around 1975. At the time they put his odds of survival at 5%. But he made it, and last I heard he's now a middle aged-man, healthy and going strong:

http://quest.fhcrc.org/articles/2001...ectations.html

Thank you!

[johnwc]

Thanks KMAC

Your words go straight to my heart. This family we are in is like no other family, how our emails touch each other, inspire, motivate, and how we share with each other is extraordinary.

Blessings,
JOHN

[Cheryl C]

You are courageous, John! I pray your treatment will be successful.