[BethBurn]

Diagnosed with smoldering a month ago, surreal

by BethBurn on Mon Feb 19, 2018 9:12 pm

Hello,

I’ve been trying to learn about this disease since being diagnosed a month ago. The monoclonal protein was picked up by accident, I was being tested for polymyalgia by my primary care doctor due to an extremely high sed rate and pain in both shoulders. I don’t have any high-risk mutations, no lytic lesions, calcium and kidney values are fine. My bone marrow biopsy showed 70% total cells, which is unusually high for my age (54), and I believe 50% myeloma cells. That number put me close to an active (rather than smoldering) multiple myeloma diagnosis.

I’m seeing a hematologist-oncologist at Dartmouth Hitchcock Medical Center who works with three diseases: myeloma, lymphoma, and leukemia. I’m scheduled for a PET scan and more bloodwork in April. She doesn’t plan to have me do a urine test. I was also just diagnosed with osteoporosis after being osteopenia for years, and the hematologist-oncologist wants to put me on Zometa or possibly denosumab, says it will help work against the myeloma cells. Dana Farber is about two hours away in Boston and I’m considering transferring to a specialist there, but like the convenience of my Dartmouth Hitchcock hematologist-oncologist, which is a much easier drive and only an hour away, and in the network with my other doctors..

So glad to have found this group. Hanging on my by fingernails.

[SaraM]

Re: Diagnosed with smoldering a month ago, surreal

by SaraM on Tue Feb 20, 2018 12:52 am

Your health seems good, as in you don’t have kidney issues, anemia, or lesions, which are signs of active myeloma. I’m new on the board also, as my father was recently diagnosed a few weeks ago. It’s been rough to fathom, but I’m feeling hopeful. Hang in there. Sending you love and prayers.

[Multibilly]

Re: Diagnosed with smoldering a month ago, surreal

by Multibilly on Tue Feb 20, 2018 10:06 am

Hi Beth,

Welcome to the forum.

Note that you can very likely get a second opinion from Dana Farber and utilize them to advise on a treatment plan (should you require one in the future), while still utilizing your local oncologist for regular follow-ups, tests, and any treatment administration in the future. So, your out-of-network expense for accessing Dana Farber specialists would be limited.

My experience is that most specialists in this field are willing to work with this type of an arrange­ment.

[BethBurn]

Re: Diagnosed with smoldering a month ago, surreal

by BethBurn on Tue Feb 20, 2018 9:11 pm

Thank you. I guess I need to decide whether to switch to Dana Farber now, or wait until after the PET scan in April and then get a second opinion. And then decide whether to switch.

I’m also questioning everything I do now. Did this cause the myeloma, or did that cause it, or did I not cause it, or are some of the things I do that I think are healthy cause it.

[Multibilly]

Re: Diagnosed with smoldering a month ago, surreal

by Multibilly on Wed Feb 21, 2018 7:55 am

If it were me, I would likely wait until April for the PET/CT scan and then take a copy of the radiology report, a CD of the PET/CT session, and hand carry copies of all your lab and bone marrow biopsy results to Dana Farber. A PET/CT can tell you a lot about whether your disease might be active or not and will help the folks at Dana Farber form a more comprehensive second opinion.

If you want to see Dana Farber sooner (and I certainly can't fault you for being anxious), you might see if you can reschedule the PET/CT scan to an earlier date. A 2-3 month wait to get scheduled for a PET/CT seems pretty long to me since I've always been able to get scheduled at a radiology facility in a matter of days, regardless of whether I was getting a PET/CT or MRI. You might also consider looking into different in-network radiology offices in your area that you could use if the particular one you are scheduled at is really backed up.