I have MM but luckily I'm in complete remission at the moment. Can't write much this minute as 

I'm in bed and dropping off. Will answer fully between 1200 and 1400 tomorrow.

Regards

Taff

Thanks Taff. Look forward to hearing more from you.

Aaaand I'm awake, Good morning Amby.

MM is a very individual cancer with everybody reacting differently to it and to the treatments. I can't comment specifically on your MM but I can tell you my story and maybe that'll help some or give you some other questions to ask.

I was diagnosed in October 2016 and started chemo straight away. I was put on CTD - cyclophosphomide, thalidomide and dex - all taken orally over a 3 week cycle which started again immediately. I did 6 cycles of this over 4 months, finishing in Feb 2017. I'd achieved complete remission.

I then had 10 days of radiotherapy to a fist-sized plasmacytoma in my left pelvis, which finished in March.

In about June I was rushed to A&E with sepsis. My sigmoid colon had died due to radiation colitis and it was removed. I was left with a colostomy and a fistula, basically a second stoma from my rectum to release mucus, which the rectum still produces. About 6 weeks ago I had to have the stoma redone.

After diagnosis and at the start of chemo, I was very ill, unable to even wash my face because of fatigue/weakness. My feet and legs swelled as a result of the meds and I've got what seems to be permanent peripheral neuropathy. The weight of my left leg was enough to fracture my pelvis, luckily not in a load-bearing part. So I'm left with a very weak left hip.

I've also had a plasmacytoma on a rib, with fracture, a fractured sternum and a wedging fracture of one vertabra.

One good thing was I managed for a long time to be completely pain free, a revelation after 30 years of chronic pain.

Through good hygeine, I've managed to remain clear of infections until now when I'm recovering from a mild chest infection.

My taste changed and I had loss of appetite for a long time, eating mostly chicken soup and ensure drinks, which I get on prescription. I've lost about 3.5 stone overall but I think my weight is beginning to stabilise now. I have to be watchful of my diet, even while trying to eat more, due to the stomas.

I remain on slow release morphine, with oral morphine for break-through pain. I'm still very weak and fatigued and can barely walk. I exercise for about 5 minutes a day at the moment. I also receive bone strengthening infusions every month which will go on for about another year.

I won't be having a stem cell transplant, which seems to be a part of most treatment plans, as I don't think I'd be able to cope with one. Being in complete remission, I don't know if one would be beneficial anyway.

myeloma.org.uk will supply free a boxful of books and leaflets all about myeloma and they're well worth getting. Another good site, though American, is myeloma beacon. There's people on there that are cycling hundreds of kilometres regularly after treatment, so you can see how different people react differently to treatment.

Best of all though, I ent ded.

Hope the above can be of some help, please feel free to ask me anything.

Best Regards

Taff

Edit - I've just remembered, I've had a prophelactic nail put in my left femur, as it was about to fracture. That was early on.

Thanks Taff that was useful to hear. My base of skull plasmacytoma was discovered by accident as I tripped and had a sideways whiplash which fractured the bone and then showed a tumour behind it on MRI. I have 2 hotspots on my spine hence the chemo. 

My 10 sessions of radiotherapy were ok except I had persistent nausea. I am not looking forward to such a long stretch of chemo especially if the fatigue and nausea are as bad as I have read. Am afraid I am too old for stem cell transplant but with a bit of luck by this time next year it will all be a bit better!! My mantra at the moment is 'this too will pass' ! 

I have read loads about myeloma esp from myeloma.org.uk but have yet to find anyone else locally with the condition. I am going to a support group at the end of the month but it is a distance away - hopefully will meet someone from my area.

I appreciate everyone is different but other peopl's experience can be really helpful. Thank you!

Cheers

amby

Thing about radiotherapy is that side effects can come at you months and even years afterwards, not that knowing this has any benefit, other that you may be able to tell befuddled doctors at the time.

When I got sepsis they hadn't a clue what caused it and were originally thinking of vasculitis and were going to treat with steroids. I told them to speak to my haematologist who immediately said radiation colitis, a known effect of RT in the pelvic area.

Regards

Taff

Hi, I was diagnosed with Multiple Myeloma in March this year. I ve had 3 cycles of chemo so far and one more to go. The only side effects I ve had so far are tiredness and dizziness.  I can't do too much in one day and need regular naps. It really isn't that bad. You ll be fine. Just trust God. Thinking of you xx