[vmeyer]

How to make changes in multiple myeloma treatment team?

by vmeyer on Thu Jun 08, 2017 9:47 pm

My husband was diagnosed with multiple myeloma in March of 2016. He had bone in­volve­ment from the start (alerted by collapsed vertebrae due to plasmacytoma and rib fractures). The referring orthopedist dismissed himself from the case after the vertebra healed (presumably from the Zometa infusions) after several months.

In December 2016, Ed began to have symptoms indicating a plasmacytoma in his thigh, and it showed up on a full-body scan. Due to increasing pain, he saw a different orthopedist in January and was told radiation would help, so he had radiation treatments, which did indeed help the pain. Nobody ever seemed very concerned about it.

Fast forward: He told me Saturday (June 3) that his thigh pain had been increasing again for about a month. I told him to take it easy and call his oncologist on Monday. He did not take my advice to take it easy and fractured his thigh all the way across on Sunday night. I will spare you the details except to say I was not at home and he was nowhere near a phone, no help till I returned 3.5 hours later, ....

The orthopedist who put the rod in his thigh grimaced when he found out he had not been being followed by an ortho as part of his treatment team. Well, he didn't have a treatment team except that his oncologist sent us to consult with a myeloma specialist at the state university in January because this doc, a hematologist-oncologist, had never used Darzalex and wanted somebody on board who was. The orthopedist seems to think this fracture could have been prevented if an ortho had been following him. Should we address this with the oncologist and ask who else should be on the team that we don't know about?

We have been increasingly dubious about this oncologist for a variety of reasons and I, at least, am feeling like he has constantly dropped the ball in various ways. We do like his partner, but can you switch within a partnership? And how does one do that, especially without being confrontational? If we can't switch within the partnership, the state university doctor, although good, isn't a great option because we can't travel 2.5 hours on a regular basis.

In the meantime his M-spike has ticked up another 0.1 g/dL, lambda is rising: we may be looking at one more failed treatment.

Discouraged and questioning.

[Ron Harvot]

Re: How to make changes in multiple myeloma treatment team?

by Ron Harvot on Fri Jun 09, 2017 1:48 pm

Sounds like your husband is seeing, or at least did see, a myeloma specialist at the state university. I would suggest that continue. Insofar as a team is concerned, I would suggest that you contact your primary care physician, explain the situation, and ask if he/she could coordinate the team. Oncologists and orthopedic doctors are specialists and tend to focus on their specialty. A primary care physician will see the broader picture and in my opinion is better suited to oversee and coordinate your husband's overall care.

Good Luck

[NStewart]

Re: How to make changes in multiple myeloma treatment team?

by NStewart on Fri Jun 09, 2017 5:33 pm

In addition to what Ron has suggested, I would ask the myeloma specialist if s/he can recommend a local oncologist to carry out the recommended treatments who is closer to you than the specialist.

Also, it isn't easy, but can be done: talk with your current oncologist and let him/her know that you would like to switch to the other doctor in the practice. If it's a problem, then you know that it is time to leave that practice completely.

Nancy in Phila

[vmeyer]

Re: How to make changes in multiple myeloma treatment team?

by vmeyer on Fri Jun 09, 2017 9:40 pm

Thanks for the helpful advice! This is all kind of a learning curve for us. I'm glad for this forum! I learned all kinds of things lurking, but decided to come out of the woodwork during his fluid retention episode.

I don't think that one's over. He decided on his own after his surgery not to take the diuretics, and I noticed his abdomen swelling by Day 2. After a bit of persuasion, he started taking them again. He just thought since he had to use a urinal, it would be one less annoyance if he didn't have to "go" so often. But at any rate, it's obvious that without the diuretics he would retain fluid again.

Something nice happened today that reduced him to tears. HR at his work called today. She was so nice and said they definitely did not want to lose him as an employee and wanted to help in any way they could, told us how his insurance could be paid out of his vacation pay even though he won't be currently drawing a paycheck, said that they really valued him and wanted him back as soon as he was able, etc. He not only likes his job (very low stress physically, challenging, etc., and he likes the people he works with), but he knows that at 66, with multiple myeloma, nobody else would hire him. It really encouraged him!