[wifeanator64]

Living with multiple myeloma after a kidney transplant

by wifeanator64 on Tue Mar 29, 2016 8:00 pm

My husband was diagnosed with MGUS and FSGS (focal segmental glomerulosclerosis) in 2005, then his kidneys suddenly failed in 2012 after receiving an antibiotic for pneumonia. He received his kidney transplant in 2014 and has been on immunosuppressive drugs since.

Now his diagnosis has changed to borderline multiple myeloma.

We have and will continue to see specialists at the Mayo Clinic (Phoenix) and Ironwood Cancer and Research Center. I am just looking for information about day-to-day life living with dual treatments. My husband is in the best shape he has been in for years. He lost 90 pounds after his transplant, continues to work full time, and loves his job. He exercises 5 days a week, stays on his diet and is diligent with his drugs.

Any common sense, everyday advice or information would be greatly appreciated!

[Cheryl G]

Re: Living with multiple myeloma after a kidney transplant

by Cheryl G on Thu Mar 31, 2016 6:27 pm

Welcome to the forum, Victoria / wifeanator64. I'm really sorry to hear all that your husband has been through.

Your husband's situation is rare. I did a quick calculation and I estimate that maybe 25 people per year in the U.S. have had a kidney transplant and are diagnosed with myeloma.

So it will be hit or miss if you find someone here who has the same experience as your husband.

I think, though, that there are lots of people here who can help with general myeloma-related issues. You can also use the forum search box to find discussions about topics you want to learn more about (use keywords when you search, rather than phrases - for example, "Velcade" instead of "what is Velcade"). This posting

https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html

also may be helpful when it comes to finding information on treatments and possible side effects.

Good luck!

[wifeanator64]

Re: Living with multiple myeloma after a kidney transplant

by wifeanator64 on Sun Apr 03, 2016 11:07 am

Thank you for the information, Cheryl, much appreciated.

[ChrisC]

Re: Living with multiple myeloma after a kidney transplant

by ChrisC on Tue Apr 04, 2017 10:28 am

My husband was diagnosed with multiple myeloma and received a stem cell transplant in 2008. In 2012 his kidneys failed. For three and a half years he underwent dialysis 3 times a week while being treated with Pomalyst and dexamethasone to control his multiple myeloma. His myeloma numbers decreased enough that he was approved for a kidney transplant in May 2016. Two weeks later he received a kidney transplant. The Pomalyst and dexamethasone treatment was halted after the transplant.

In March 2017, when it was determined that the myeloma cells were present again (25% accord­ing to a bone marrow biopsy), my husband again went on to the Pomalyst and dexa­metha­sone regimen. Three weeks into the regimen, the kidney failed. The nephrologist is blaming failure of the transplant on the myeloma drugs.