[hugstoall]

Mother getting ready to meet with hematologist

by hugstoall on Wed May 06, 2015 8:21 pm

Hi everyone,

We are in that painfully anxious time period after initial revealing bloodwork but before our newly referred hematology appointment. No one has actually said myeloma, but they've indicated that something suspicious is going on and mentioned 24-hour urine testing and hematology.

My mother is not new to the cancer world. We (me as her primary caregiver) and her went through chemo radiation and a lobectomy for NSCLC (non-small cell lung cancer) back in 2011-12. She was fortunate to have a NED for the last several years.

Very recently, she started to notice joint swelling and was referred to rheumatology for blood work and x-rays, which showed calcium deposits / arthritis. This is really where our paths may be converging with all of yours.

Her blood work revealed:

Kappa level - high at 8.01
Lambda level - high at 3.47
Kappa lambda fluid e - high at 2.31

IgG - high at 1690
IgA - normal
IgM - normal

C reactive protein - normal
Lymphocytes - very low (forgot to write down number)
CKD stage 3 with eGFR of 52 (in range creatinine and BUN)
Hyperparathyroid - high at 143
Calcium - 1.07 normal
Prior bone density (6 months ago) showed worsening osteoarthritis

Oddly, there was no immunoglobulin detected. The rheumatologist does not think this is autoimmune and said there are complexities that contradict varying things.

After doing my own research while we wait, I have come to the realization that there is a strong possibility that she may have myeloma. I am silently getting my ducks in a row by doing re­search and trying to get a better understanding of this possible new journey.

There is also the possibility that this is another disease state that shares similarities with mye­loma. I guess we won't know for sure until it's revealed through more comprehensive testing. She does have a new elevated PTH and may have many new non related or interrelated complexities.

I have been reading your forum and would like to extend a ((hug)) to everyone. Your support to one another and individual stories are inspirational.

Wishing everyone wellness and continued strength on their path forward.

[Dr. James Hoffman]

Re: Mother getting ready to meet with hematologist

by Dr. James Hoffman on Thu May 07, 2015 12:04 am

With the limited data, it is hard to be certain. But to me, it seems very unlikely to be myeloma, for numerous reasons. But, rather than speculate on partial / imprecise information, it's better to wait until your evaluation. If needed, this forum will certainly be there to help.

Good luck.

[hugstoall]

Re: Mother getting ready to meet with hematologist

by hugstoall on Thu May 07, 2015 7:08 am

Hi Dr. Hoffman,

Thank you for your insight and reply - it certainly gave me a reason to be hopeful!

I will just wait for our upcoming appointment and further testing to get an official diagnosis. I will post the final results here ... in case it may be helpful to anyone viewing.

Once again, thank you for your insight, courtesy and time.

Regards,

Sarah

[helen]

Re: Mother getting ready to meet with hematologist

by helen on Wed May 20, 2015 7:45 am

I went through the waiting and testing and the uncertainty for a long time with my mother - then my worst fears were confirmed - she had myeloma - but I have learned to come to terms with it and found some strength from somewhere to cope - the main thing is to be there for them and support them and tell them u love them - I hope it isn't myeloma - I do feel for u

[Mister Dana]

Re: Mother getting ready to meet with hematologist

by Mister Dana on Wed May 20, 2015 10:38 pm

I thought myeloma would elevate kappa or lambda, but not both, or neither kappa nor lambda, in the case of nonsecretory myeloma.