[Sean Murray]

How Should I Proceed?

by Sean Murray on Thu Oct 18, 2012 11:20 am

Hello!

This post came to me in the comments section of my recent Myeloma Beacon article:

https://myelomabeacon.org/headline/2012/10/02/seans-burgundy-thread-a-letter-to-myself/.

Are there any good thoughts out there from the myeloma brain-trust?

" I am 71 and diagnosed a few months ago. Discovered in a blood test as MGUS, was sent to oncologist, had xrays of bones, nothing showed, had bone marrow biopsy, I have smoldering by my cancer is the more aggressive kind. Dr. wants me to have the stem cells removed and saved for later transplant. I’m so tired all the time I’m always falling asleep. Have high blood pressure, poss.diabetes (find out at dr. office tomorrow), my teeth are falling apart & I’m in terrible tooth pain, no dental coverage of course. At my age, from what I read about the transplant & complications, I’m not sure I want to continue with any treatment. I’ve lived a good long life. What quality of life will I have with chemo and transplants–I only have Medicare, no supplemental, so running up bills I’ll never be able to pay. To do the stem cell removal, I’ll have to travel 6 hrs to the University hospital, no one does it where I live. Has anyone decided or known someone who decided to just stop it all and let nature take it’s course? From things I’ve read, all these treatments at my age will only buy me about 3 yrs. and probably will cause heart problems, etc. I can see fighting it if I was younger, but what is the point at my age? Anyone been through making this decision who can help? What kind of pain can I expect? Thanks for any help."

I wanted to give you all an opportunity to share your perspective and experience with the newly diagnosed, Judy. THANK YOU! Sean Murray

[Snip]

Re: How Should I Proceed?

by Snip on Thu Oct 18, 2012 1:15 pm

Wow... tough one.

The most difficult part as I was reading this post was Judy's attitude, which is so much when dealing with cancer. She sounds like she's already given up, even tho she hasn't really even started yet.

Given that, I don't know that I don't agree with her. And besides, in her condition I am more than a little bit surprised that she's being advised to prepare for a stem cell transplant... I would not have guessed that as a top of the list item on the "fix this" agenda.

Since it is MGUS, there doesn't seem to be much TO do at this point... you might want to tell her that for starters. it's a "wait and see" scenario. It would be great if she could herself in the best shape she can at this point, both physically and mentally, in preparation for the possibility of the condition becoming treatable.

[lys2012]

Re: How Should I Proceed?

by lys2012 on Thu Oct 18, 2012 2:48 pm

I live in Canada so things might be different here, but the cancer hospital (even the regular one I went to before) had psycho-social department where cancer patients can see a councilor / social worker (for free) who can help them navigate the system. I would ask her to speak to someone there.

[Dianem]

Re: How Should I Proceed?

by Dianem on Thu Oct 18, 2012 3:58 pm

Hi - just read the first post and my question is related. My uncle (almost 82) had been seen by a kidney specialist for years.. He was also treated for unknown causes of anemia for several years with transfusions every 3-4 months. His doctor died and he was assigned a new doctor who informed him that he at least has MGUS and is in kidney failure (creatinine = 27). My uncle is tired and complains of leg pains. The new doctor referred him to a hemo-oncologist who recommended a BMA - my uncle refused both an awake BMA and a sedated BMA. Sounds like the new doctor feels he has signs of multiple myeloma and has at least two of the CRAB criteria plus the m spike. I realize without treatment he will get worse. Without a diagnosis and no treatment, what can we do?

[Stan W.]

Re: How Should I Proceed?

by Stan W. on Thu Oct 18, 2012 4:25 pm

if she's Smoldering, why the rush to harvest stem cells. Why not watch and wait? If she's not smoldering, why not some other less intense treatment? Seems like she needs another opinion.

[Dr. Adam Cohen]

Re: How Should I Proceed?

by Dr. Adam Cohen on Thu Oct 18, 2012 10:16 pm

If it's smoldering myeloma, the standard of care (outside of a clinical trial) would just be observation, as patients can sometimes go for years without needing treatment. We don't typically collect stem cells for smoldering patients. Even if the disease progresses to active myeloma, we always give a few cycles of induction therapy first to reduce the myeloma burden in the marrow before collecting stem cells. And transplant is certainly not the only option if treatment is needed. I would agree that something is not adding up here, and that seeking an opinion at a myeloma specialty center may be a good idea.