Hey Andrea.. im happy to read your doing well :). You sound happy and thats a great thing ! Yeah im home, thank god :). Other than being a big chicken LOL im not to stressed, Cliff and everyone kinda helped me understand my orig. BMB so im clear on that part, just trying to get mentally and physically prepared for the transplant.

Ive noticed and i know ive mentioned this before but ive lost about 15lbs. since my Induction, ofcourse ive lost muscle tone which cliff and everyone says comes back after transplant and getting better but im also losing weight in my waist area ( stomach ) but, my weight is about the same around 209lbs.

Is that normal with the chemo treatments also ??

Phil,

I can assure you that you will get your studly body back after all of this. I have not been able to return to the gym, but my muscles remembered what they used to be and came back. So that should be the least of your concerns.

Just remember Phil...if you ever have ANY questions, anxieties, or doubts....I'm here for you. Much of what I will tell you is from my own experience with a tincture of knowledge. You are a strong guy and you will do fine. I don't know if you sing or whistle, but I will say it again, singing at full throttle or whistling got me through everything. Sounds nutty, right? But it works. You can't sing and worry at the same time. Try it. WE ALL HAVE YOUR BACK, MAN. Ne l'oublie jamais! (Don't ever forget it!)

Cliff

Phil -- It's not the chemo per se, its the loss of appetite that the chemo causes because your digestive system need a LOT of GOOD blood and the chemo had destroyed much of it. So you lose your taste for food and things do not digest right and on and on right on down to your bum being sore. That will cause you to lose weight -- you will get it back when you feel better. Or perhaps take advantage of it and trim down a bit if you need to. I should have but messed up and gained about 10 more than I should have and now I can't seem to get rid of it. -- dave

Have any of us experienced it? The fear, the depression, the anxiety? Well of course, we all have and that is why we can help. I think it turned around for me when I stopped considering it as an ordeal and started looking at it as an adventure. Its something you will be able to tell your grandchildren about. But there were a couple times when I thought it was all over and just threw it on the Lord to do the worrying, and I passed off to sleep. Read Matthew 6 -- that will give you assurance. Take care -- dave

Phil,

Don't worry about gaining the weight back after this is over. I lost about 30 lbs and loved the way I looked, except my ass was like a deflated balloon. I have gained so much weight back, because my appetite is now prodigious and, like Dave, I can't seem to lose it. I have no will power. I think we suffer enough through all of this, that an extra piece of chocolate cake helps make us feel that we are whole again.

I am here for you, Phil.

Cliff

You guys are awesome.. cliff the deflated balloon is a good one. Im trying so hard not to worry and its like im happy to be home but when im here i start noticing every little ache and pain and i worry, when im in the hospital i guess i relax knowing im there and someone can come running if i need it. I know im needy as hell and im trying to stop that. Im 46yrs old and i need to grow up and put my big boy pants on. Trust me, ive always been pretty tough when it comes to challenges but, this is one i never thought id have to contend with. Thank you guys soooo very much for your support, when this is all over please remind me how much of a wuss i was so i can laugh about it..

Btw.. im here for you guys too!

Phil,

You are hardly a wuss. You are a frightened man with a scary illness and you are acting like a man, not a wuss. We all felt that way before our transplant. It is an unknown future at this very moment. They tell use that some people die within the first 100 days of the transplant and we try not to hear that. I just kept singing and whistling my way through the radiation, the chemo, the sore throats (which is why I had to whistle), the anorexia, the constant vital signs....all of it. Damn it Phil, you are not needy. We voluntarily support you, not because you've asked for it, but because we want to. You have provided each of us with the support of your good humor, your candor, and your fortitude.

If there is any time for you to KVETCH (complain in Yiddish), now is the time. Complain about the food, the needle sticks, the noise in the hallway, the uncomfortable bed, the diarrhea, all of it. I did. And by the time you finish complaining (kvetching), you will be on your way to good health and muscles so awesome that only a first place in a Mr. America contest could provide a worthy comparison. So don't act as if you are going to the electric chair. It's an awful experience, but one that you will survive. And, believe it or not, you will appreciate life just that much more when you emerge healthy and whole..

I took out the recycling bin tonight, one of the very mundane things that I now do again. I saw the moon and the stars and thought, "I am so lucky to be here appreciating the beauty of the heavens." Then I came in and hugged my wife and eldest daughter. They though I was possessed!! I was, in ways that cannot be adequately described in words. You will experience this "revelation" and will know what I mean soon enough.

Phil, I have confidence in you and know that God will watch over someone as kind and courageous as you are.

Take a "chill pill" and get a good night sleep. Regards to your wife. Give her a few extra hugs. Tell her "Doctor's orders."

Cliff

Phil,

No, chromosomal abnormalities and mutations are different things. What is written on the top of your report states that your leukemic blasts have normal number of chromosomes and they look normal. It does put you in the intermediate risk category. But to see FLT3 and other mutations they have to look inside the chromosome. It is different analysis and it takes longer to do. You need to get this addendum, just for the peace of mind. My father also had normal chromosomes but in the same time had FLT3 and NPM1 mutations, as I mentioned earlier. We had to wait for quite a while for the info on mutations. But I collected all his tests, all BMBs and blood work. And as soon as mutations were found I got the copy of the report. I hope you will be able to get it on Wed. I am very glad that the donor was found for you. It is a great news. I hope my post will not appear several times like others did!

Phil,
Trish is correct, but I would be absolutely flabbergasted if they have not already ruled in or out FLT-3 and the other abnormalities commonly looked for. I have read several articles about "normal looking chromosomes." No malignancies have normal chromosomes, although they may appear so with out sophisticated tests. There have been a few papers that look at the "normal chromosomes" and find specific changes that may help predict who does and who does not need a transplant, who is likely to do well, and who is not going to do well. The problem is that these are not routinely run, and are not used to determine treatment at this time. I did not even ask my doctor about them, because, as I always say, if such knowledge will not affect your treatment, why add to the anxiety that we each have that can easily bubble over to feeling depressed and frantic. Make sure, as Trish says, to get the FULL report. Then, put yourself in your doctor's and God's hands. Experts in the field of leukemia know what they are doing. Just be informed and then go with the flow. Don't swim against the tide.

Cliff

Phil,

I too was really busy, and then I see this big thread! With a lot going on.
Looks like you have all your questions answered re chromosomes and mutations... FLT3 sounds like the big one... I had normal karyotype, FLT3 negative and NPM1 mutated, which meant I was put in the "good" category and chemo only for now (a year and a bit since remission started, counting the days...sometimes forgetting relapse is a possiblity in my life...)
I know it's all about the first BMB.

AND, you are really lucky to have a donor. This is one thing I learned, having unusual HLA and siblings who don't match, it's a constant fear that if I relapse, BMT is the only cure and who knows if there'll be that 10/10 or 9/10 out there...

And regarding weight, I am so glad to hear I'm not the only one who's finding it really hard to be motivated to lose weight after treatments :-)

Phil: I'm with Cliff re Kvetching and being a so called wuss...please, DO complain, get really angry, scared, needy, sad, sarcastic, whatever you want and especially whatever you need....no need or point to be "tough". there are no awards for the toughest AML fighter, you know...

Be well.
Abby2

Thanks for everyones support ! I guess i was feeling sorry for myself lastnight. I feel a lil better today after a good nights sleep :).

Im a lil confused, so, just because i have a normal chromosome report, it does put me in the intermediate category but doest really rule out if i have FLT3, etc. ? correct ? So, i need to find out for sure about that part ?

I guess thats what concoerns me about my Onc.. why would they tell me all this. The report i have the way its written right below the Addendum about the chromosome analysis is the three anaylsis's for FLT3, NPM1, and CEBPA so.. im assuming thats where they looked for those things ? Im gonna take a pic of the report and post on here and if you guys dont mind take a look at the link..

Here is the report hopefully it can be read my camera isnt the best.. its not all pages but i think the important stuffl..

[IMG]http://i104.photobucket.com/albums/m193/phils94850/2012-11-27_10-11-50_666.jpg[/IMG]
[IMG]http://i104.photobucket.com/albums/m193/phils94850/2012-11-27_10-11-30_803.jpg[/IMG]
[IMG]http://i104.photobucket.com/albums/m193/phils94850/2012-11-27_10-11-17_568.jpg[/IMG]
[IMG]http://i104.photobucket.com/albums/m193/phils94850/2012-11-27_10-11-04_533.jpg[/IMG]
[IMG]http://i104.photobucket.com/albums/m193/phils94850/2012-11-27_10-10-59_483.jpg[/IMG]

If these images dont work here is the link to my photobucket page and you can look that way..

http://s104.photobucket.com/albums/m193/phils94850/

Phil,

First, I have to comment on the most important thing....your family. They are beautiful. How many kids are there? Second, you....you are a strong, handsome man and will emerge the same way you went in. We all have some ego about our looks, strength, intelligence, wit, and common sense. You will not lose any of that.

It was difficult to read the reports. I am so unsavvy about computers that I couldn't rotate the ones that were horizontal, so I had to rotate my computer! lol. i DO NOT SEE anything that says you are FLT-3. THEY ALWAYS LOOK FOR THAT!!! I am convinced that you are in the same category that I am....intermediate with no obvious chromosome translocations, deletions etc. Go over these reports tomorrow with the doctor until he explains EVERYTHING...what the reports have and have not looked at, what therapy is appropriate for you AND WHY!!!!? Do not ask statistics, unless YOU HAVE TO. I don't think that I need to reiterate my feeling about statistics. Tell him that you want to know everything so that you can make informed decisions. DO NOT APOLOGIZE FOR ASKING QUESTIONS TO YOUR DOCTOR. Let me know what happens as soon as you finish your discussion.

Be good man. DO NOT WORRY, because you have us and God on your side.

CLiff

Thank you Cliff. Trust me as far as me, a good camera on me helps a lot! Lol. I have 3 kids :)and and theyve been a blessing in my life. I have 3to grandkids also ( getting old) lol.
Thanks for trying to read the reports, i posted so i wouldnt keep causing confusion on how i was interpeting it. Im gonna ask about my report and such tomorrow.