[tinkerjack]

New and Old

by tinkerjack on Sat May 09, 2015 8:47 am

I've just decided to register here after this came up on a search for the umpteenth time.

I was diagnosed in February or March of 2007 - I was really sick, so I don't know the actual date. I am still annoyed that I was expected to react badly. They gave me Ativan (lorazepam) without my knowledge.

I don't mind having this. I'd rather not, but also I'm not afraid to die. I've lived twice as much as anyone since I sleep so little, so I figure I'm elderly in Wolf years.

That being said, I'm still here. I was diagnosed stage IIIB. At the time, I had congestive heart failure, 75% kidney failure, pneumonia, and had broken 2 vertebrae. I had severe anemia as well: H&H were 3.9 and 13.1.

I have asthma, celiac disease, and some neurological issues, including dyslexia and train­wreck ADHD.

I have a PhD in psychology and currently teach full time online.

It's a long and entertaining story. Here's the gist:

While recovering from the above, I broke my sternum, responded well to VRD (Velcade, Rev­limid, and dex) chemotherapy, had radiation for the damage happening to my spine, refused to be fitted for a custom wheelchair, and returned to full time work within about a year. I under­went some rigorous testing for a bone marrow transplant and, after failing the respiratory test, went back and passed. Had the bone marrow transplant and went back to work again.

Since then, I have worked through two relapses - I'm in my second one now. I don't expect to beat the odds every time - just this next time. And then maybe the next. I will live long enough to contribute to finding a cure.

[JimNY]

Re: New and Old

by JimNY on Sun May 10, 2015 8:32 am

Hello Wolf - nice to meet you, and welcome to the forum.

Sounds like you're still going really strong 8 years after your initial diagnosis. That's always very encouraging to see.

You mentioned that you were treated first with VRD and then eventually had a transplant. However, you also relapsed twice after the transplant. What were you treated with at each of your relapses, and how did the treatments work?

Also, I'm just curious -- did you ever have maintenance therapy?

Transplants and maintenance therapy are two regular sources of discussion here in the forum, so I thought I would ask about at least one of them ...