The Leukemia & Lymphoma Society Community: Message List

Re: Relapse 11 months post transplant

communityreply@lls.org — Wed, 19 Jun 2013 17:58:56 GMT

One thing to remember, I think, with the different health care practices, is price. What something COSTS and what our hospitals here CHARGE for it are two very different things. So maybe tests don't necessarily cost that much to perform, but hospitals here might charge a whole heckuva lot for them lol.

Anyways, I hope Matt continues to show progress and feel better. Keep us posted

Re: Shrinkage

communityreply@lls.org — Tue, 18 Jun 2013 18:18:23 GMT

Tex wrote:

Sorry something that was meant to be supportive has somehow turned into the lecherous meanderings of a dirty old man.

This just cracked me up.

I don't think you're a dirty old man, Tex

Anyways, Nate actually never took prednisone or ANY other steroid. He couldnt tolerate them mentally and just took an additional immunosupressant called Cellcept...

Shrinkage

communityreply@lls.org — Mon, 17 Jun 2013 21:30:37 GMT

SHRINKAGE

Okay, now that I have your attention...

My question is shrinkage related, but not the kind you all probably thought of at first

Has anyone out there shrunk post transplant? Now keep in mind that Nate had TBI as part of his conditioning, which could be the culprit...

Nate has never been a very big man. I have always had about an inch on him in height and about 10 pounds on him weight wise (what can I saw...I'm Swedish). I am 5'9 and he WAS 5'8. Lately it has seemed as though I am towering over him a bit more. Like, the top of his forehead is not at eye level for me. I feel like a giant. He got his height measured at his last appointment and he's now only 5'6.5! He has shrunk and inch and a half! This is only concerning to me because I dont want him to continue shrinking. I mean...if he keeps shrinking he might get as little as his grandparents (who are 4'9 and 4'10, and legally little people) or as little as his moths (who is 4'11.5). I CANNOT be a foot taller than him. It just wont work for me. I feel like a friggin amazon already when I stand next to him (dont even get me started on the terrible experience of dancing with him at my sister's wedding)...

I've always been a bit self conscious about being such a giant. I wear a size 12.5 womens shoe, and about 90% of the time I have to buy mens shoes because they dont have any in my size. I can also palm a basketball, and am the go-to-pickle-jar-opener. I used to date men who were significantly taller than me, but Nate broke the mold. I guess it was acceptable because shrinking seemed at least 60 years away

So yeah, anyone else experienced this? Any insight or advice is appreciated! I'm already considering getting him lifts for his shoes lol.

Re: Revolution No. 9

communityreply@lls.org — Mon, 17 Jun 2013 21:20:47 GMT

Thanks for sharing the anniversary with is. 9 years is a heckuva long time. You'll have to do something extra special next year for the 10th

Re: 3th relapse of PH+ ALL , time for a BMT?

communityreply@lls.org — Sun, 16 Jun 2013 12:04:54 GMT

Good to hear from you!

180 days, that's really getting there. Sending positive thoughts for a good bx result (though it sounds like there's absolutely no reason to worry).

Nate had the tremors as well when he was on tacro and they went away when he stopped. So I wouldnt worry too much about long lasting effects of it.

As for the OCD, just let your psychologist know and take it from there.

Keep us posted!

-Lottie

Re: Relapse 11 months post transplant

communityreply@lls.org — Wed, 12 Jun 2013 16:46:29 GMT

So I'm thinking that the measurements are different from around here, just as Tex and MW said.

What are the normal ranges listed for his ALT and ALKP?

Since "high normal" bili is 21 and he's 22, that isn't anything to be totally freaked out about. See, here in the US, Nate's lab states that the normal range for bili is 0.0-1.0. For us, normal range for ALT is 10-55 and normal ALKP is 45-115.

So if you know what the lab states are the normal ranges for these numbers, it might not freak us out at much lol. When I first saw his bili was at 22 all I could think was holy crap, because for us, normal is 1.0 and below.

Anywho, I do think that perhaps you guys could benefit from a biopsy, just to be fully sure it is GVH.

Keep us posted!

-Lottie

Re: Relapse 11 months post transplant

communityreply@lls.org — Tue, 11 Jun 2013 17:58:33 GMT

Hey, that's pretty exciting about the wedding! There is absolutely nothing foolish about planning your wedding. It's so important to have something to look forward to, especially with something like cancer taking over most other parts of your life. Don't get spooked by this; just think of the GVH as making sure everything goes as planned. He got the DLI, he now has the GVH, and you'll be getting married .

When Nate found out he had leukemia, I was 12 weeks pregnant. I actually had a couple coworkers ask me if we were still keeping the baby. I was just like "uh, yeah...why wouldn't I?" and they basically said incase he dies. Well, he's still here and we have out little girl and life is good. Don't let cancer get in the way of living your life and planning for the future. Just think about how much more vows will actually mean considering all you've been through.

Re: Relapse 11 months post transplant

communityreply@lls.org — Tue, 11 Jun 2013 17:02:31 GMT

I would be the exact same way if I was in your shoes. Sometimes emotions overtake reason. It's just the way it is.

I've heard of photopheresis before; I believe several people on these boards have had it.

Isn't it funny how sometimes google helps, and sometimes (okay, most times...) it makes things worse? lol. Regardless, if you're concerned, call his doctor or nurse and ask them to reassure you that this is manageable.

Also, you might get some more responses on here from some seasoned liver GVH vets if you start a new thread just about the liver GVH (in case they haven't been following this one). You can also do a search at the top of the webpage here for liver GVH and you'll be able to see the results and other experiences.

Re: Relapse 11 months post transplant

communityreply@lls.org — Tue, 11 Jun 2013 16:30:35 GMT

Hey Chip,

Sorry to hear about Matt's GVH issues. One thing to remember, though, is that the presence of GVH is what will keep that leukemia from coming back.

Now Nate never had liver GVH but it seems like many, many people do deal with liver GVH. Also, from what I understand about the staging (grading) of GVH, the level depends on how much of the entire body is effected, not necessarily how bad his liver is. So they probably graded him stage 3 because his has liver involvement, skin involvement, and mouth issues. The good news, though, is that he obviously responds to the 60mg of pred, so it should be kept under control.

I can only imagine how freaked out you are (and you know me, I would probably be having a full blown panic attack right about now). But the thing to remember is that GVH was the whole idea regarding the DLI. Remember when you were worried that he wasn't responding because for months he had no GVH? Well, here it is! He's got some, and boy it came all at once, but it's here now. He's got the meds to control it and keep the levels safe, and that's really all you can ask for. And remember, if he was in serious condition right now, they would have admitted him right away.

So yeah, I know you're scared and I would be too. But just remember that GVHD is keeping the leukemia at bay. If it's attacking his skin and liver and mouth, it sure as heck is attacking any leukemia cells he has left.

Hang in there and keep us posted!

-Lottie

Re: I've become a hypochondriac...

communityreply@lls.org — Thu, 06 Jun 2013 20:23:53 GMT

It's always good to have someone tell you that you're not crazy lol. Sometimes I feel crazy and I'm sure sometimes I act crazy. It's probably time for me to see my therapist regularly again just to get back on track...