Discussions that mention neupogen

Leukemia board


Hello there.

I don't quite know exactly why i'm writing all of this here.. I stumbled across this website while looking for information on Graft vs Host Disease. After reading a couple posts, it seemed like a good place to come and talk about what's going on in my life these days. You guys seem nice after all :) I don't exactly know what i'm looking for here. Maybe advice. Maybe an outsider's point of view.. Maybe i just need to write things down to help me get a focus on things..

So here is some background information of what's been going on for the past three months.

-October 1st, i learn i have AML. I was going there for an x-ray of my foot after a soccer injury, 6 hours later they're telling me i can't leave the hospial for the next month or so...

-October 27th, i"m finally going home after 4 weeks of staring at the same four walls.

-A week later, they tell me i'm in remission. Life is good.

-November 8th, i get my first dose of consolidation chemo, i go back home 5 days later.

-Three weeks later, they started giving me the Neupogen injections because my white cells weren't going back up quickly enough for them.

-3-4 days after i start having my injections, I started having a high fever, so I went back to the hospital. I stayed there for almost 2 weeks

-I kept having really high fevers (102-103 degrees and around that) every 12 hours or so and I had some difficulties breathing (but not that much, just a slight strain. Wheezing a bit. Much like an ahsmatic person starting to have a reaction )

-They did every test they could think of including 2 separate bronchoscopy (that’s when they stick a camera in your lungs through your nose and spray water in them. Easily the worst thing I’ve ever been submitted to.. If you hear the word bronchoscopy, run away and never look back !

-In the end, they found nothing infectious or bacterial or viral so they concluded by elimination that it must have been an allergic reaction to chemo. But they can’t really be sure. They only way to fid out would be to give me another consolidation chemo treatment. But according to my doctor, that could result in really messing up my lungs (leading to lung disease in the future.) I for one think it might have been a reaction to the Neupogen. They say they don't think so. I'm not a doctor, but i've learned to trust my gut. And it tells me it was the Neup.

So this is where I am. January 6th, Waiting for them to talk to some other doctors in Montreal to see if a bone marrow transplant is a good idea for my specific case.

Basically, I have to decide if I want to try chemo again and see if that was really the problem (and risk causing myself harm in the long run) or have the transplant if they can find a donor. I’m pretty stumped on what to do… On the one hand, I could try something that could give me lung disease in 20 years, and on the other I can try something that could potentially kill me if my body decides to reject the transplant… That’s the big thing that’s got me scared. I can deal with all the other side effects associated with a bone marrow transplant, but this has got me running for the hills…
It’s really a tough choice. It boils down to this bigger, more existential debate: Would you risk dying in a week just because you don't want to die in 20 years ? Who knows what could happen in those years... All the extra time i could spend with the people i love. I'm 25, i really don't feel like ending it right now. But then again, i could get hit by a car tomorow... Who knows...

Does anybody know the risk percentage of a host’s body not accepting the transplant ? Ballpark figures i'm talking... Is it a real risk or am i just taking all of this way out of proportion ? I'm walking in the dark over here. Maybe the image i have of the road ahead is a lot scarier then the road itself...