[double dignosed]

Double diagnosed with LBCL and myeloma

by double dignosed on Mon May 19, 2014 8:36 am

Two years ago I was diagnosed with large B-cell lymphoma (LBCL). During staging they did a bone marrow biopsy and found multiple myeloma. I was only 42 at the time. I was a stage 3 of the aggressive non-Hodgkins lymphoma. They sent my bone marrow off to UNC and they came back a couple of months later and said it was inconclusive and to retest in 3 months. My doctor at the time kept saying that there was no way I could have both -- the the odds of that happening were out of this world and that she was not concerned.

I had another bone marrow after I finished my chemo and the results were still showing myeloma with with only at 5% of plasma cells, They started calling it plasma cell dyscrasia.

During the last 3 chemo I had to have Neulasta shots to increase my counts, the bone pain was intense and has never went away. My doctor did suggest that I have the urine test to check for M proteins. They were there and were kind of high, but with no spike. So again she says she is not worried. At this point my insurance nurse suggested a second opinion and I made an appointment at Duke. He was wonderful and said although it was not active that it did need to be monitored. He ordered bone scans etc I was then told I had degenerative disc disease in my neck C2- C4.. Which since has went all the way down my cervical spine.

Last year after almost of a year of being in terrible pain, we ask that I be referred to a pain clinic, and the local one came back and said they were full, and to try back in 6 months. And that was her suggestion to try back later.

After being in pain that long, and her not taking results seriously, I then changed doctors after doing research and found one that came up from Winston to the neighboring county. I also found a pain clinic to go to. He took one look at all my records and said he wanted to do a complete testing on the bone marrow. He did a bone marrow and a full work up.

He found the plasma cells but no changes in the chromosomes, and now is keeping a check on it through blood work. I had a bone density tests and my hips are thinning, I am 2 1/2 more likely to have a fracture. I have high protein in my blood and every time I get the blood work back the lab always suggest MUGS, myeloma, and now they are suggesting hypogammaglobulinemia. It seems the more I get tested the worse things get.

I have since change my general doctor also and she did blood work to see how my D values were and they were terrible a 8.2 . I have been put on a D vitaimine. of 50,000 3x a week. I will say my leg pain is easing some, but I still have issues with lots of pain and I have been falling asleep at work and can't seem to stay awake. My cancer doctor put me on Ritalin to hype me up. Sometimes it works and other times I think I could take the whole bottle and it wouldn't help.

My grandmother had breast, lymphoma, then bone cancer and my grandfather had multiple myeloma. With this history and my own, I am wondering if any of these precursors are being taken seriously.

What are their connections and what others are doing? Anyone out there have any suggestions?

[Joy]

Re: Double diagnosed with LBCL and myeloma

by Joy on Sun Jun 29, 2014 9:08 pm

Hi Doublediagnosed,

Unfortunately, I don't have any suggestions or answers but hope you are feeling better. If myeloma or MGUS seem to be a possible diagnosis, it would be wise to seek out a specialist.

Best of luck to you.