Hello,

Since about 15 years my father was diagnosed with multifocal motor neuropathy with conduction blocks, for which he receives regularly IVIg treatment. This has always worked very well for him and could minimize the main complaints, which were in his case always loss of strength/feeling in his lower limbs (so not that much the hands).

Recently he also has been diagnoses with non-small cell lung cancer with brain metastasis (so stage IV unfortunately).
He first got chemo treatment cisplatin + alimta. Unfortunately 2 days later (about a week before he normally should have gotten a new IVIg treatment) he lost all strength and feeling in his legs and one hand. The IVIg was advanced and things improved again.
Unfortunately a few days later, he again lost his capacity to walk or stand on his legs. A booster IVIg treatment was again given and things improved and he could walk again, but he didn’t gain back his his normal feeling.
First the doctors thought it was probably the neurotoxicity of the chemo that attacked too much his nerves, but later on they said it was probably the steroids (which he receives to minimize side effects of the chemo) that caused his additional problem.

Apparently and unfortunately his situation is quite unique (very few experience): pre-existing MMN (and so even more heavily responding to whatever affects his nerves) and cancer.

But we can not believe that no one else with pre-existing MMN was also diagnosed with cancer.
So we are looking for patients that are or were in the same situation, to find out how they have been treated without the MMN getting worse dramatically?

The cancer is of course life threatening, and obtaining the best possible quality of life for as long as possible was the objective, but it is his MMN that actually undermines totally his quality of life (being partly paralyzed, condemned to stay in bed, and not be able to do anything independently) and that determines the possible cancer treatments.

He just got his second (a different kind of) chemo (carboplatin + gemzar), but he is (and we all are) very very anxious about the results it will have the coming days. This treatment consists of another administration of Gemzar next week and than 1 week without chemo, before a new cycle starts again. So in fact, if his treatment again affects his nerves and if he could get another IVIg treatment (which is not certain as it is limited in frequency), it would not be during those first 2 weeks. That would leave him 2 weeks paralysed and 1 week (hopefully) able to walk… not that much quality of life for someone who is 66 and was very active and still working a lot until he got his first chemo…

So please, any advice or experience to share?

Notes:
- I’m not sure if it is relevant, but we are from Europe.
- we are looking to find a clinical trial in which he could participate that is based on (in general very promising) immunotherapy, but autoimmune disease is mostly an exclusion criteria. Also the brain metastasis are, but that could be remediated when those would be treated (which is not yet the case right now).

Hi Delvin

I see you also posted in the MMN Forum. Steroids are known to exacerbate MMN symptoms. There is someone in our MMN Facebook group who has had several cancers. I will send you information.

That would be great!
I indeed posted in several forums, even in different countries as we need to find something...

Hello Delvin,
I am a 69 year old female from Dutch decent, born in Netherlands and live in the USA since 1962. I have been diagnosed with MMN in 2010, treatments with IVIg, gave me aseptic mennengitus, two times.
February, 2011 my neurologist put me on Hizentra. It is an infusion I do at home and is given subcutaneous into the fat of the body. The only thing is that I stared out with two time a day, two time a week, 15 ml per infusion. Now I'm up to 20 ml, two times a day, four times a week. However, I do not stumble or fall. If I start to stumble, this when my neurologist up the Hizentra.
My neurologist is with U of M, Ann Arbor, MI.
Also, I do have an elevated protein in my blood, this is also being watched by an hematologist. In the future I may have to be treated with, Rituximab.
Hope this info helps your father?
Sincerely, Maria

Hi Maria, do you take Hizentra additionally to IVIg's, or instead of?

I take Hizentra only. The IVIg gave me aseptic mennengitus, twice.