I post by way of being informative. Diagnosed in Oct 2016, followed by initial therapy of CTD. Achieved Complete Remission in Feb 2017 after 6 cycles, then had 10 sessions of radiotherapy to a large lesion in my left pelvis (About 10cms x 9cms x 9cms). Left with cognitive impairment and peripheral neuropathy. Also a lot of bone pain.
Sepsis in June 2017 saw me get sepsis due to ischaemic colitis; had my sigmoid removed and a permanent colostomy and mucous fistula. This has had to be redone 3 times due to a stricture that was causing bowel obstruction. I’ve felt ill since before diagnosis.
Increasing pain since just before Christmas 2018 saw me getting an x-ray, followed by a CT scan, which found a lesion on a rib. A further PET scan recently, showed up about 20 new lesions. This despite having the best bloods since before diagnosis. Originally my bloods while in remission showed paraprotein as undetectable. The last two showed it as detectable but unmeasurable. A recent bone marrow biopsy showed less than 10% of nasties.
Had radiotherapy this morning to two ribs, one on either side. Also had more bloods, before a haematologists consult on 27 of this month, when I’ll no doubt restart treatment. I hope it works quick enough to sort the spongy spot on my skull.
It appears then, that I’ve had a symptomatic relapse, rather than a bio-chemical one, possibly non-secretory or oligosecretory. I was surprised at the number of new lesions, though they explain the increase in pain. An increase in my morphine sorted most of it though.
I’ll update when I’ve had my next consult but would be interested if anyone’s had anything similar.