Hi  SCMS,

I have MM and have just relapsed; I see my haematologist tomorrow about restarting treatment.

As I understand things, high levels of calcium can be treated and sorted quite quickly. From what you've said, your loved one is in the process of diagnosis and you're yet to learn all about MM.

Staging in MM is different than for most other cancers and not as significant, and what it says is about the disease burden at diagnosis, how much of the body is involved.

For example, although my calcium has always been fine, I was very anaemic and had lots of bone involvement. Upon relapse, I again have lots of bone involvement, yet my blood results are fine, showing an unmeasurable amount of paraprotein. I was Stage 2 at diagnosis in Oct 2016 but at no time since diagnosis has stage been mentioned and then it was only because I asked.

How each person responds to treatment is different, I manged a complete remission that has lasted for about 21-24 months. About average. How I'll respond to further treatment is unknown, yet to be seen.

Suffice to say that for many, MM is a chronic disease with a quality of life that is sustainable for many years.

I wish you and your loved one well and hope that things go well for you. Please keep us all informed as to how you go on and if you've any more questions, don't hesitate to ask them here and someone will try to help.

Best Regards

Taff

Hi Taff,

Thank you for your reply. How did you get on at the haematologist? I hope & pray that your treatment will keep the myeloma at bay.

He has started his treatment but we are still awaiting the bone biopsy diagnosis, & the waiting is so tormenting as we don’t know how aggressive it is. 

Thank you again for your help & kind words. All the very best with your treatment.

Regards,

SCMS

Hi SCMS,

Thanks for asking. It's been confirmed I've had a symptomatic relapse, with the myeloma evolved to oliosecretory. This means that the malignant plasma cells produce virtually no paraprotein, certainly not enough to measure.

This also means that my bloods look fine, so the only way to monitor progress is with PET/CT scans.

I'm to start chemo again next Wednesday. This time it will be Velcade, Cyclophosphamide and Dexamethasone (VCD). Six to nine 5-week cycles, the better part of a year, rather than the 4 months last time.

Bone involvement at present is in the spine ribs, pelvis, sternum and head.

I got 21-24 months of complete remission from initial therapy of CTD, which is about average, although I consider it good considering I didn't have a transplant. I've felt consistently ill though, since before diagnosis and at times, have been close to death. Haven't felt good, even for a few minutes, for over two years. I do nothing but sit in my chair all day so my quality of life would be appalling for many people.

Not for me though. I ent ded, and that has a quality all of its own. I see my grandchildren a lot and their smiles give me all the quality I need. I am content.

As well as peripheral neuropathy, I've been left with a cognitive impairment, such that I have no internal dialogue and am unable to think or ponder on things. I literally live in the moment, with all my responses being reactive, stream of consciousness stuff. I'll soon have forgotten that I've posted today.

So it's all goodly greatly.

Hope your loved one copes well with his treatments and stays fairly well.

Taff

I am so sorry to read of your relapse. I pray & hope with the advancement of treatment it will put it back in remission for you.

Take care