[Dr. James Hoffman]

Re: Peripheral neuropathy & smoldering myeloma

by Dr. James Hoffman on Tue May 05, 2015 11:27 pm

Happy you are aggressively working towards an answer (a shame that the doctor did not give you your due time).

Once you have a diagnosis, a prognosis can be established. That said, many of the potential etiologies for your neuropathy do get better with therapy.

Post any results as you get them if you want additional input.

[Mitchatlas]

Re: Peripheral neuropathy & smoldering myeloma

by Mitchatlas on Wed May 06, 2015 4:08 pm

I have been diagnosed with smoldering multiple myeloma since Christmas 2014. I also have been feeling tingling in both hands, especially when sleeping, but intermittently during the daytime as well.

Breve conduction study revealed bilateral ulnar neuropathy. I also have been experiencing fatigue.

[ldahle1]

Re: Peripheral neuropathy & smoldering myeloma

by ldahle1 on Sun May 17, 2015 10:41 pm

Ulnar neuropathy, yes. Wrist guards and little bean bag pillows under your elbows help. Keep track of your symptoms, as one by one they will paint a full picture. Seems the docs can brush off a few random symptoms, until a pattern emerges. Don't let anyone belittle or disregard your discomfort.

I am sorry you are going through this, as that constant ache and electric shocks will wear you down. Chin up!

[jhorner]

Re: Peripheral neuropathy & smoldering myeloma

by jhorner on Thu May 21, 2015 8:59 am

Hello,

I have been smoldering since August 2013 and one of the reasons I was adamant about the BMB that confirmed my diagnosis was due to significant neuropathy. Neuropathy was con­firmed with nerve conductivity testing. I never had a nerve biopsy, but nothing else was found as the causative factor besides smoldering multiple myeloma. My hands and my legs were the worst, both of which had heterogeneous peripheral neuropathy. Leg neuropathy was pretty severe at night.

I am currently on IVIG therapy for immunoparesis and this all but cured my neuropathy as well. I only have symptoms now after exercise.

Point being that you can have smoldering multiple myeloma and neuropathy. When I first saw my specialist at Dana Farber Cancer Institute, I was begging for treatment because I was so sick and in so much pain, and they were willing to consider a clinical trial, but not standard treat­ment. I appreciate Dr. Hoffman's approach to patient analysis and his comments here on this thread. When there is no other explanation for sickness and neuropathy, and myeloma is presumably the cause, why are we still considered asymptomatic and subject to the "watch and wait" guidelines? Quality of life should be the indicators for treatment - not organ failure - in my opinion.

I'm very happy with my current treatment of IVIG because it has improved all of my myeloma symptoms and I get to watch and wait comfortably, but had I not qualified for this remarkable treatment, I would have preferred the symptoms of chemotherapy over the symptoms of "smol­dering multiple myeloma".

Best
J

[Mitchatlas]

Re: Peripheral neuropathy & smoldering myeloma

by Mitchatlas on Fri May 22, 2015 1:08 pm

Thanks jhorner and Idahle1 for your encouragement.

[ldahle1]

Re: Peripheral neuropathy & smoldering myeloma

by ldahle1 on Wed Jul 01, 2015 11:02 pm

Thought I'd post a quick update, for those who might be interested.

I am now seeing a specialist at Emory Winship and am making progress. I am awaiting the results of a skin biopsy to affirm or rule out small fiber neuropathy. Consult on July 16th.

I did receive results of my FISH test, and they are troubling. Positive for monosomy 13 (38 of 50 cells), positive for loss of one copy of IGH (13 of 54 cells) and positive for trisomy 7 (21 of 54 cells). Survey says: Poor prognosis, aggressive and chemo resistant myeloma in my future.

Question is, if I am now considered MGUS (5 -10% plasma in BM), what do the chromosomal abnormalities mean for length to progression? Am I more likely to progress quickly, or is that still an unknown?

I don't want to delude myself into thinking I have 10 years before the proverbial hits the fan. There are lots of things I want to do while I still feel relatively good. Hopefully my doc will give me straight answers (if indeed there are any). Sugar coating the truth doesn't help me at all.

Does anyone have experience they can share? Are specialists reluctant to share discouraging news, or are there really so many variables that it is impossible to predict?

[JimNY]

Re: Peripheral neuropathy & smoldering myeloma

by JimNY on Thu Jul 02, 2015 2:08 pm

Hi Laurie,

So is your diagnosis now MGUS, not smoldering myeloma?

I'm not aware of any studies that have been done linking the risk of progression in MGUS patients with their chromosomal abnormalities. I'm not saying that such a study hasn't been done; I just don't know of one and haven't found one.

There are studies linking certain chromosomal abnormalities with more rapid progression in smoldering myeloma patients. See, for example, the study discussed in this Beacon article,

https://myelomabeacon.org/news/2013/03/29/chromosomal-abnormalities-smoldering-myeloma-high-risk-progression/

Given that study, I would find out more about the IGH result mentioned in your FISH results, if I were you. IGH abnormalities involve chromosome 14, and a translocation between chromosome 4 and chromosome 14 -- t(4;14) -- is the abnormality mentioned in the above article as leading to a higher risk of progression in smoldering patients. No one knows for sure right now, but it wouldn't surprise me if it would have a similar effect in MGUS patients.

If you poke around in the MGUS part of the forum, or search on the keyword "progression", you'll find information about the standard model myeloma specialists use to categorize MGUS patients based on their risk of progression. I believe it involves the type of immunoglobulin the patient has, the M-spike level, and the free light chain ratio.

Good luck!

[ldahle1]

Re: Peripheral neuropathy & smoldering myeloma

by ldahle1 on Thu Jul 02, 2015 10:35 pm

Thanks Jim! I'll be doing some moe research, but I think for the sake of my sanity I should wait to hear from my doctor. I am on information overload and will end up driving myself crazy. I really appreciate your comments and guidance!

[Brian Burson]

Re: Peripheral neuropathy & smoldering myeloma

by Brian Burson on Wed Sep 28, 2016 8:47 pm

I was diagnosed with smoldering multiple myeloma earlier this year at age 46. Up to this point, I have always been very physically active and healthy. Within the last 6-7 months, I have developed pretty severe peripheral neuropathy in my feet and legs. My feet constantly feel like they are on pins and needles and burn as well. The muscles in my legs have an odd twinging and contracting feeling and I have some bone pain. My bone scan was clear. My neurologist diagnosed me with small fiber neuropathy.

I was wondering, jhorner, if you were still on IVIG treatment and what your status was regarding your peripheral neuropathy. If you are still on IVIG treatment, has your neuropathy been resolved as a result? Have you had to continue to have treatments in order to maintain that relief? Did insurance cover the cost of your treatments?

Also, did the IVIG treatments have any effect on your free light chain or M-spike numbers?

Thanks in advance for any information you can provide!

Brian

[jhorner]

Re: Peripheral neuropathy & smoldering myeloma

by jhorner on Sat Oct 08, 2016 10:52 pm

Hello Brian,

Sorry for the delayed response. I am still on IVIG monthly treatments and they are covered by insurance because I have immunoparesis. I was just lucky that the treatment also works for the peripheral neuropathy. However, I think IVIG is often approved for autoimmune neuropathies and some specialists believe that this condition is a symptom of a para-neo-autoimmune response to the myeloma, and so it may be covered with this diagnosis. I can tell you that my quality of life prior to the treatment was not great and, though I have some limitations now, I am mostly pain free. I strongly suggest this treatment for neuropathy.

Best
J