[MG1]

Monitoring schedule for smoldering multiple myeloma?

by MG1 on Mon Jul 13, 2015 8:08 am

Hi everyone,

First post. I just want to say that I've learned so much from the forum and want to thank the community who contribute - I have learned tons from reading the threads, columns, and articles. Thank you.

My background:

I've been an asthmatic all my life. However, for this past 3 or 4 years, I have suffered from recurring chest infections. Whilst infection-free, I had a constant cough and brought up about half an egg cup of mucous each day. Exercise would cause it to dislodge and I'd bring it up quicker. I ignored it until late last year until my wife made me investigate things further.

So I went through a load of asthma drugs, eventually changed GP, who referred me on to chest specialist who suspected bronchiectasis. I had a bronchoscopy and some other lung function tests, but I got a call in early January to say all clear, it’s not bronchiectasis, but come in a few weeks for a full review.

About two weeks later he called asking me and my wife to come in the next day as a problem had shown up in my blood tests and there might be a problem with my immune system. That's when the smoldering multiple myeloma diagnosis came through.

My numbers are:

IgM 0.17 g/L (17 mg/dL) (0.4-2.4)
IgG 4.9 g/L (490 mg/dL) (8-15)
IgA (M-spike) 8.6 g/L (0.86 g/dL, 860 mg/dL)

B2 Microglobulin 1.7
Haemoglobin 13.4 (13-17)
Creatinine 64 (62-106)
Calcium 2.15 (2.2-2.6)

Kappa lambda ratio normal at 1.55

CT Scan - Query on L5, follow up MRI said it was non-significant. I had a slight recurrent pain in my left thigh since Jan but nothing showed up in the MRI. (I had the MRI on my spine and left thigh)

Bone Marrow Plasma Cells: 30%

FISH:
1q gain on 65 of 200 cells analysed.
No del 17p
No t(4:14)
They noted the loss of 14 on 65 of the 200 cells analysed.

My haematologist is retiring next year and he thought that, given where I am, treatment is not advisable, but he’s aware that treatment is starting earlier these days. So he recommended I get a second opinion, which I am in the middle of getting.

Hopefully I stay smoldering for a long time, but I am conscious that I have three high risk markers according to the most recent paper on classifying smoldering multiple myeloma, IgA, immunoparesis & 1q gain.

I don't want to start treatment before it is necessary, but I want to propose a robust monitoring schedule to my hematologist. I've been getting IVIG on a monthly basis for the chest trouble and it has helped. As part of that, they measure the M-spike, which has bounced around between 7.4 & 9.1.

We have no real plan in place for following up on the other tests, e.g. repeat MRI, FLCs, etc. So what sort of follow up plan should I be looking at? Is it biomarkers only, or should I be pushing for an MRI every 6 months? Any thoughts or feedback very welcome.

Thanks in advance!

MG

[NStewart]

Re: Monitoring schedule for smoldering multiple myeloma?

by NStewart on Tue Jul 14, 2015 2:55 pm

It's difficult to give you a definitive answer to your question. I was smoldering when I was diagnosed in 2008 with a much higher m-spike and percentage of myeloma cells in my bone marrow. I had borderline anemia, but no other problems. I was followed every 3 months for almost a year with a full panel of bloodwork each time.

Unfortunately, when my oncologist decided to switch me to a 6 month schedule, I progressed with a fractured arm as the indicator that bone lesions had developed. I had a skeletal x-ray when diagnosed and when I progressed. At that time, I also had a PET/CT scan. I had 24-hour urine at diagnosis and at progression, but none since. I also haven't had any scans except for occasional skeletal x-rays.

Since your oncologist is retiring, now would be a good opportunity for you to see a myeloma specialist if the one you are getting a second opinion from isn't one. It is very important to have a specialist in myeloma on your team even if s/he isn't the oncologist who sees you the most frequently. Since a specialist sees mostly people with myeloma and does myeloma research, s/he is most up to date on what the newest / best treatments are, what's in the pipeline, and what clinical trials there may be that you would be appropriate for.

All the best for navigating this new area of life,
Nancy in Phila

[JHWyoming]

Re: Monitoring schedule for smoldering multiple myeloma?

by JHWyoming on Tue Jul 14, 2015 6:10 pm

My doctors at Mayo say every 3 months for the first 2 years and the time between testing can be extended after that. I have t(4:14), del(13), 20% bone marrow plasma cell percentage, IgA, and immunoparesis.

Enjoy everyday and best of luck.