[greenrobin]

Brother - starting treatment with some urgency

by greenrobin on Tue Feb 03, 2015 2:39 pm

Hi All,

It's been a while since my first posting about my brother who has multiple myeloma.

My brother has seen a specialist and we were told that he was smoldering with high risk. I didn't know to ask what criteria were used to establish the high risk at the time.

Since that appointment he had a PET scan to take a closer look at the one area mentioned on his x-ray/full-body scan, a "slipped disc with possible nerve impingement" (the rest of the x-ray was normal).

We also got his karyotyping results back - normal.

The PET scan results are just in, and they located an area of high focal intensity in his lower back with a SUV over 9.0. We've spent 2 days contemplating whether this high focal intensity might be inflammation from the slipped disc and ultimately back pain he has had for a few years now. He was going to reach out to his oncologist to talk about the results in a few days - he wasn't ready to do that yet.

However, his oncologist (who works at a major cancer center and who stated about 25% of his patients are myeloma patients) called him today and, to paraphrase because I was not on that call, told him that he needed to come into the cancer center tomorrow to begin treatment immediately. He told him that he has a very active myeloma discovered in his spine (again I wasn't on the call) as indicated on the PET results.

My brother has not had a second opinion yet from a myeloma specialist. We have an appointment with a doctor who is a bona fide myeloma specialist - but not until the end of this month. The second opinion specialist is in the same practice at the same cancer center as the doctor we've already seen and will see tomorrow to begin treatment.

We think we may have a better rapport with the new specialist and have a lot of respect for his passion surrounding multiple myeloma and amyloidosis. But the soonest appointment is the end of this month.

My question: Since the only doctor we have right now, and who is a very good doctor, would like to begin treatment TOMORROW - is my brother putting himself at any disadvantage by starting treatmen, without having seen his 2nd opinion specialist first? Should I get on the phone and try to see the 2nd opinion specialist right away?

We don't want to ruffle any feathers needlessly, but we do want to be sure we are proceeding in the best manner.

Thank you for your advice.

[Multibilly]

Re: Brother - starting treatment with some urgency

by Multibilly on Tue Feb 03, 2015 3:45 pm

I would first try and get on the phone with the specialist's scheduler, explain the situation and urgency, and see if he/she could squeeze you in within the next couple of days.

[Christa's Mom]

Re: Brother - starting treatment with some urgency

by Christa's Mom on Tue Feb 03, 2015 6:49 pm

Hi Greenrobin,

I'm so sorry this is coming at you all so fast!

If I understand what you wrote, the doctor you are trying to get a second opinion from is in the same practice at the same hospital as the doctor who is currently treating your brother. If that is the case, I suspect they may already have spoken about your brother's case, as it seems to be somewhat unique and urgent. You could certainly explain to the treating doctor that you had an appointment with the specialist and ask him if they have talked.

Good luck.

Lyn