[ScottishMalco]

Malcolm, 34, diagnosed in 2015

by ScottishMalco on Thu Jul 13, 2017 4:58 pm

Hi all,

I'm Malcolm from Dundee in Scotland.

I was diagnosed with POEMS syndrome in November 2015. POEMS seems to be a very rare condition that involves multiple myeloma along with a few other symptoms. According to my doc, I don't have all the symptoms of POEMS, but enough to be considered more than multiple myeloma.

At 32 at the time of diagnosis it is pretty safe to say I was pretty shocked!

It was picked up when I went to my GP with pains in my legs and unexplained weight loss. Blood test after blood test and bone marrow biopsy later I was told what was wrong with me.

Since then I went through treatment with oral medications. I forgot the names. I'm sure you're all familiar with them. And then a stem cell transplant in October 2016.

It's been a tough road, but things are getting back to normal, or as close as possible. It's been tough for my friends and family too, especially my girlfriend. We had only been on 2 dates when I made the initial appointment with the leg pain. Not only were we getting to know each other and all that involves, but we were dealing with regular visits to hospital, etc, and my general ill health.

I plan to keep up with these forums, it helps to know others are going through the same.

All the best every one and take care. X

[Victor L]

Re: Malcolm, 34, diagnosed in 2015

by Victor L on Fri Jul 14, 2017 7:15 am

Hi Malcolm,

So sorry to hear about your illness and at such a young age.

You have certainly entered the "myeloma world" at a very exciting time. There are a number of new treatments now which simply did not exist at the beginning of this century, and some of those currently being approved hold out the real possibility of long-term remissions and even the cure.

Myeloma, although still regarded as rare, receives a huge amount of research investment and is one of the most promising fields of progress in the world of malignancy study. We have a lot to be grateful for.

Personally, I think you are following an excellent plan for treatment. At your young age the stem cell transplant would be highly recommended for a good prospect of a long-term remission.

I am sure that all the members would be grateful to learn of your future progress.

Best Wishes,

Victor L.