Hi Chris 12345,

Not nice to get MGUS with a high probability of myeloma at 43; let's hope that it stays as MGUS for many years yet.

Having said that, myeloma isn't all bad. I was diagnosed with it in 2016, although a few chances to diagnose were missed in the previous 18 months/2 years. Not sure why but I've always thought of it as being one of the nicer cancers to have.

I won't go into all that's happened since diagnosis but . . .

Have you any questions you'd like to ask; anything at all? I'll be glad to help in any way I can.

Best Regards

Taff

Thank you very much Taff for taking the time to reply. I put a similar post on Blood Cancer UK and had lots of replies with links etc. Lots to read 

I feel like a bit of a fraud sometimes to be worried about something that may be years before developing, but in the same way lucky to have found out when I did and not when it had already started to develop. 

I am rubbish at talking to family. I would feel selfish telling people just to make me feel better / have an outlet, hence my post on here. 

How are you? Readings staying level and everything under control I hope. 

Thank you very much. I really appreciate it. 

Hi Chris,

Thank you for asking.

I was actually told in Sept/22 that I had a couple of months to go, at best, but everybody thought weeks, maybe days. I've been close to death so many times that it's become run of the mill now. Officially, my myeloma is being managed as I decline and die. I've had 'the' conversation with my consultant.

Not sure if it's me or the meds, or a combination of both but I simply don't care. About anything.

Body is falling apart. Although healed now, I recently had seven fractures in my spine. I healed all twisted and bent out of shape, losing about 10 inches in the process.

My paraproteins have been coming down over the last few months from over 30 to 12.4 but the latest had a slight rise to 12.8. I'm expecting the next reading to be higher.

I've had so many bad experiences in hospital that I've decided I'm never going in again, not even for life-saving treatment. All my family have accepted this.

Anyway, enough about me, I've beat the odds at almost 7 years since diagnosis.

I can understand you not wanting to burden your family talking about MGUS and its possible repercussions and that's what sites like this are for. Please feel free to ask anything. I'll help as much as I can, subject to the vagaries of memory.

Best Regards

Taff

Hi Chris,

Ha ha, not everything by a long chalk.

I could tell you about the 30 mm hole in my skull; several cracked or broken ribs; fractured sternum, fist-sized hole in left hip; radiation damage to my bowel, resulting in sepsis and permanent colostomy or nail in left femur (but I won't, ha ha). Oh, I've just been told that my paraproteins have gone up from 12.8 to 13.3. May be a plateau or the start of an upward trend.

This is all to point out how individual myeloma is. I know of people who've spent longer in remission. My wife's uncle died of it within 4 years.

With you having MGUS, you may never go on to get meloma.

Most important bit of advice:- Live

Best Regards

Taff