[Lauren0307]

Second opinion for possible multiple myeloma?

by Lauren0307 on Thu Aug 02, 2018 7:14 am

Hi all,

I am so glad to have found this forum. I certainly have a lot of reading and research to do, but I am grateful to have found this resource.

I am wondering whether it would make sense for my father to get a second opinion at a myeloma treatment center in our area.

Some backstory:

My dad (age 65. diagnosed with solitary plasmacytoma at 64) was diagnosed with what was believed to be a solitary plasmacytoma June of last year. He had a lump protruding from his forehead for about a month that doctors believed to be shingles. He was taking Lyrica with no improvement. and the lump continued to grow. I stopped by my parent's house one day after work and took one look at my dad and knew we needed to go the ER. The "lump" was now very large and was causing some discomfort near the eye.

He was diagnosed with a solitary plasmacytoma and began working with a local hematologist-oncologist. (We live in New Jersey, about 25 miles outside of New York City). The plasmacytoma originated in the sinus cavity and extended up through the forehead. None of his blood work indicated multiple myeloma (at the time I did no research and did not ask about the blood work being done and trusted the oncologist had it under control). His bone marrow biopsy indicated no indication of myeloma. Thus, the solitary plasmacytoma diagnosis was cemented.

My dad completed radiation treatment in September and his oncologist, ear / nose / throat specialist (ENT), and radiologist were satisfied that the tumor had been eradicated. The oncologist would continue to monitor my dad every three months for changes in his blood work.

In December my dad started to complain of discomfort in his jaw. Two of his molars were loose and the dentist was perplexed. He was referred to endodontist. The endodontist tried to figure out what was going on for months and finally referred my dad to an oral surgeon a few weeks ago. During this time, my dad expressed concern about his jaw to his oncologist. His oncologist was not concerned and told my dad if it was a plasmacytoma he would be in a lot of pain and would know. My dad also completed a PET scan / CT scan at this time, which showed two hyper­metabolic focus areas in the sternum with SUV uptakes of 3.7 and 4.4. The radiologist told my dad that nothing was clear on the CT imaging and so this was probably due to a muscle tear. The oncologist remained unconcerned.

My dad had a CT scan of his head / sinuses in May. CT scan showed lytic lesions in the mandible. Oncologist said nothing. Fast forward to two weeks ago at the oral surgeon. Oral surgeon schedules biopsy. My dad's oncologist calls and tells him that his kappa-lambda ratio is raised back to around the levels they were when he had the plasmacytoma last summer. The oncologist says my dad should complete another bone marrow biopsy given the raised levels.

The biopsy results came back two days ago from the oral surgeon and confirmed it to be a plasmacytoma. We went to the oncologist today for the scheduled bone marrow biopsy. I came more prepared with some questions. I asked about the International Myeloma Working Group diagnostic criteria and said given that criteria could he be given a diagnosis of multiple myeloma. The oncologist brushed me off and said not necessarily. I asked about the SPEP results and he said that they were negative, and that all other blood work came up negative. He expects the bone marrow biopsy to be negative as well. However, given a recurrence of a plasmacytoma, he believes we should treat this as a systemic disease even though the does not believe it to be multiple myeloma at this point.

He started talking about various drug treatments. He said to me something along the lines of "I understand if you have given up faith here and want a second opinion. But we will be doing the same tests and the same treatments they do." I said something like, "No one is saying they have lost faith, but given the already rare nature of these tumors and multiple myeloma, I think it makes sense to get another opinion."

I am quite frustrated for my dad and frustrated in general. I don't really understand how it could be possible that only his kappa-lambda levels are showing abnormality. I have to do some more reading what the kappa and lambda are measuring when his blood work and urine tests have come back with no abnormalities. I am also still concerned about that PET scan from January and the hyper­metabolic foci in the sternum.

Am I being a "diva" for wanting him to at least go for a second opinion at one of the myeloma centers in our area? I don't think it would be terrible to get a second opinion.

Thank you!

[Cheryl G]

Re: Second opinion for possible multiple myeloma?

by Cheryl G on Thu Aug 02, 2018 10:21 am

Hi Lauren,

Yes, I think it would be perfectly normal for you and your father to want a second opinion at this time, and I think you'll get helpful advice at any of the New York City area myeloma centers. If you're about equally close to Philadelphia, you also could consider a center in that area.

About 15-20 percent of newly diagnosed myeloma patients only have elevated free light chain levels, without any M-spike. This kind of myeloma is called "light chain myeloma". It sounds like that's what your father has. You should go back over his results and make a list of the free light chain tests he has had and what the results were (date of test, kappa level, lambda level, and kappa/lambda ratio). If you can, graph the results to see what sort of trends there are. The most important result is really the ratio, but it's helpful to know why the ratio is what it is (it's just the kappa level divided by the lambda level, as its name suggests).

It's good that your father does not have any signs in his blood of organ damage associated with myeloma. That means, in particular, that his kidneys are probably still healthy, which is good.

Best wishes,
Cheryl

[Lauren0307]

Re: Second opinion for possible multiple myeloma?

by Lauren0307 on Thu Aug 02, 2018 10:30 pm

Thank you for the response, Cheryl! I appreciate it.

We will have to obtain copies of the blood work that has been completed since last June. The oncogist said my dad’s blood work relating to kidney function is okay, but I’d line to take a look at it myself. Obviously, I am having some trust issues, haha.

They are sending all his files to two of the New York City-area myeloma treatment centers, and we are working on getting him appointments with a specialist at each of them.

Thanks again!