Hi Tex,

I know I don't find time to go into many posts like you all do on my posts, But you have certainly hit something here with lots of interest from people, I too am very curious and Confused and scared about GVHD, My onc tells me they want me to get some mild GVH so that my new cells take over and fight of the GVH and fight off the cancer.

But I am so freaked out I hear so many different things but not too much excites me about getting GVHD at all.

At the moment all my bloods are prefect ,my liver is great and every thing else is normal levels, for being over day +41 and feeling fine with some nausea and some joint pains,and occasional burning in the guts/lower abdomen where the large tumor was growing.

I am now experiencing some anxiety on getting GVH like will I get it how bad will it be can it be fatal and the answers the Oncs give me is yes it possible to all,but its also possible not much could happen to severely harm my body.

WOW I get so confused.

Yes I need to speak to a councilor Will be seeing one soon.

I cant seem to get straight answers from my oncs, they tell me things like they may not know how all this treatment goes until after 5 years if I have had no GVHD or no return of cancer.

I am just shatered and totaly confused and fatiged in the head, sick of taking so many pills ,but it a must I know.

Sorry Tex ,I seen your post here and just had to add my bit ,Do Doctors know exactly what they say about GVHD to patients and how what they say affects them no they dont ,they scared the heck out people by saying things that they are not entirely sure of how it gunna afect each person in different ways.Next monday they said they will decrease my Cyclosporin dose to bring on some GVH.

Is this safe I sure the heck dont know and I'm worried ,my mwife tells me I worry to much about things before they happen.

Well i have read so many bad things that GVH does and it creeps the heck out of me, Sorry I said that enough now.

Good post tex.

Mark.....

Mark, like mamawarrior already said, GVH is unpredictable and not everyone will get it, others will only have it on the mild side, where others get it much worse. I had my transplant almost 2.5 years ago and still deal with it, my symtoms are manageble with medications. Your doctors are only trying to be honest with you. Please remember that you are doing great and take one day at a time. Sonya

You know what, Mark? I have the opposite anxiety....I worry a lot about NOT having GVH! Because of that desired GVL effect from having a small amount of GVH. But I have learned I can't control it anyway, as MamaWarrior said, I can't will it to happen.

At my last appointment, my doc now feels I may have slight chronic liver GVH. She'll do more testing at my next appt. at the end of December. But if so, this will be the first instance of any detectable GVH, and she said the numbers are only slightly deviated. It could be from Mylotarg, too, Mylotarg is known to cause liver problems. So we'll see.

But as others have said, you can't really change what will be. But at day 41, I think you can relax just a little bit about the severity of possible GVH, anyway. Sounds like you are recovering very well physically. I went through some mental challenges after my BMT. Do you have any anxiety meds? Just for when you do feel the weight of all this. I find Ativan really helps. I take it when the anxiety just gets to me. And we all have those times. I also have a great cancer therapist who's helped me sort through a lot of my post-transplant feelings. Like worrying about my lack of GVH. Just some thoughts....

Anyway, hang in there and keep up the good recovery.

Pam

Tex,

I just found your post on GVH and thought it was very interesting.  Like MW, I find the strangest things interesting and like you I HAVE to know all of the details about my tx, my mom's tx, my kids, my husband, etc. I just like the details and the info.  If I don't understand, I will research it until I do.

I just wanted to tell you that my mom has lost almost all of her hair again and the doctors say it's probably a combination of the GVH of the skin she has been battling since summer, the steroids and her poor nutrition when she was really sick in September.

Polly

Tex, are you the same Tex that was on the board in 2006?  I tried to log in with former password but it wouldn't let me.  My originial was jabowden or Judy or something else I've forgotten.  I've posted under "new biopsy after 3 years remission" with several hits, but no responses.  Hope all is well with you.  I just came on the board this afternoon and haven't had time to read everything.  Judy

HI Pam!  Just wanted to drop in and let you know that I still think of you all the time!  I am hoping all is going to go great with your next appointment!  I'll never forget the dream I had with you and mom!  So strange!  Thanks for ALL of your support, and I wanted to get here to let you know I think of you too! hugs, nicole