[Bev823]

Solitary plasmacytoma & peripheral neuropathy

by Bev823 on Fri Feb 27, 2015 10:31 pm

I was curious how common it is to have neuropathy related to a solitary plasma­cytoma?

[Bev823]

Re: Solitary plasmacytoma & peripheral neuropathy

by Bev823 on Sat Feb 28, 2015 12:15 pm

I am feeling discouraged that no one has had experience with my symptoms. It would be reassuring to know there was someone who could relate.

I have gone through my radiation and have returned to work even though I am still unable to perform all job functions. My solitary bone plasmacytoma was treated, but I still have the neuropathy and loss of balance that has been going on for 8 months. I have accepted the possibilities of my diagnosis but find it hard to come to terms that I will have to deal with the balance and neuropathy issues.

I am 45 years old and still have to take care of my family. I am fearful that I will lose my job and unlikely be able to find another in my condition. I feel like, once the treatment for the solitary plasmacytoma was done, the doctors considered my treatment over. This is very depressing and I feel useless.

[nymom]

Re: Solitary plasmacytoma & peripheral neuropathy

by nymom on Sat Feb 28, 2015 4:49 pm

Hi. I also have been diagnosed with solitary plasmacytoma in my left iliac. However I have not experienced neuropathy. I am responding because, believe me, I know how hard it is to go through this diagnosis. There are so few of us that have it that I don't even think the doctors know exactly how to treat us and what to expect.

Have you seen an orthopedic oncologist? I was sent to one after a regular orthopedic discovered my tumor on xray. He seems to be the expert on bone strength and regrowth, and maybe one could provide treatment options for what you are feeling. Or maybe you should look into finding a doctor experienced with neuropathy and treat that in conjunction with the oncologist.

Don't lose hope. I think we need HOPE to keep going through each day and be functional. These tumors do damage to our bones and they don't easily heal without the help of medi­ca­tions. Maybe, even though your treatment is complete, you need aid in regenerating the bone. I'm not a doctor, and I don't know what is causing your symptoms, but I do think if you don't get the help you need from one doctor, then you need to find another who will try.

BTW I am 44 and am 8 radiation treatments away from hopefully being done.

[Steve]

Re: Solitary plasmacytoma & peripheral neuropathy

by Steve on Sat Feb 28, 2015 5:11 pm

Depending upon the location of your plasmacytoma I suppose PN-like symptoms could arise. For instance, if the plasmacytoma somehow injured nerves in your spine then maybe that might create a situation like you've described. Beyond that, as a lay person, I really couldn't speculate.

Best,

Steve

[Multibilly]

Re: Solitary plasmacytoma & peripheral neuropathy

by Multibilly on Sat Feb 28, 2015 5:44 pm

Bev,

I agree with the great comments by Steve and nymom. Building off what has been said so far, are you currently working with a multiple myeloma specialist? I'm also wondering if taking on a minor amount of drug treatment such as a steroid like dex or prednisone might help with the problem?

Also, has your doctor investigated the possibility of you having something like POEMS syndrome?

Again, a multiple myeloma specialist would be best suited to comment on all this. Second opinions are always great things to get.

[Bev823]

Re: Solitary plasmacytoma & peripheral neuropathy

by Bev823 on Sat Feb 28, 2015 9:29 pm

Thanks for responses.

I am back with neurologist (the doctor who found m protein). It's as if no one knows what's causing the neuropathy so they pass me on to the next doctor, now the neurologist. wants to do another emg/ nerve test to see if damage has improved since radiation. These tests are painful and I'm not looking forward to another one.

I don't want to be a Debbie downer up here because I have so much to be grateful for, but I want to understand what's going on.

[Bev823]

Re: Solitary plasmacytoma & peripheral neuropathy

by Bev823 on Sat Feb 28, 2015 9:38 pm

Hi nymom,

I am going to a PT for gait training. He says I'm not rotating my hip and have weakness in my leg. The weird thing in this whole situation is that I never went to the doctor about hip. It didn't bother me often even though it was 5 cm. I started having trouble performing job duties be­cause of balance/ numbness.

I started this journey 8 months ago and still feel the same issues and found cancer I didn't know I had.

[nymom]

Re: Solitary plasmacytoma & peripheral neuropathy

by nymom on Sun Mar 01, 2015 8:32 am

Hi Bev. I can totally relate to much of your experience. I am a runner and soccer player and had been having assorted muscular issues in the left hip, glute, and even hamstring and quad area for months and months. I had gone for PT, chiropractor, and a spine specialist. Finally, I figured it was a sport related injury, maybe a stress fracture?, and went to an orthopedist who, upon first visit, first xray, knew there was something going on. I mean cancer ... are you kidding?? I guess that's the normal reaction when people find out their diagnosis.

I hope you find a doctor and a treatment that will make you feel better and comfortable working. Please share your journey. Don't lose hope.

Denise

[Dr. Jonathan Kaufman]

Re: Solitary plasmacytoma & peripheral neuropathy

by Dr. Jonathan Kaufman on Sun Mar 01, 2015 6:24 pm

Bev823,

I am sorry that you are dealing with this. It is possible to have neuropathy related to a plasma­cytoma. There are syn­dromes, like POEMS, where neuropathy is directly related to a plasma­cytoma. In these circumstances, without other areas of disease, the neuropathy usually gets better after radiation. Sometimes a plasmacytoma can cause peripheral neuropathy outside of the area of the plasmacytoma. In these situations, again, with treatment of the plasma­cytoma, the neuropathy should get better. Unfortunately, nerves can be damaged and not recover quickly.

It's also possible that the plasmacytoma directly damaged a nerve based on location and, in those cases, it can take a long time – months or even years – to improve.

And you also need to make sure that there is no evidence of systemic disease. If there is systemic disease, then that could also be a cause of ongoing symptoms.

I hope you get better soon.

Jlk

[Wetpaint]

Re: Solitary plasmacytoma & peripheral neuropathy

by Wetpaint on Thu Jul 23, 2015 4:17 am

At the age of 55, I became paralyzed . It took six months but I became basically a quad. The apparent cause was a plasmacytoma in my left scapula.

The radiation remedied the cancer and my nerves are slowly regenerating. It is now five years since the onsite. I have regained significant use of my extremities but not walking and no life in my toes.

I have continued increasing pain in my feet as the nerve regenerate. To date I am cancer free. I quest that's the big picture. I am alive and healthy. My mother used to say if you think you have problems, put them in a hat with other people, and you will be happy to tske your problems back.

That is inspirational no matter where you are at in your recovery.

Does anyone found relief for there neuropathy? I find that a dimple vibratory on my calves give temporary relief.

Good luck in your journey.