Hi Tom,
There's a few ways of looking at that. I get some pain during the ten or twelve day gap in between treatment cycles for Bort. Dex. and Cycloph.
I don't know what's causing it and I doubt my onc can tell me because of how individual the illness is.
I've thought about it a lot. Factors at play could be that whenever the dex leaves the system there is likely to be more pain. It reduces inflammation and hence thre's less pain. Bort. whether it's working or not, is supposed to assist with bone damage and I don't know how many days that takes or when the response peaks, but when it does complex stuff to the bone it could hurt. When I had Zometa infusions at very regular intervals, I discovered that there was even some anticipatory pain in the week before the infusion. Don't ask me to explain that one, but I've confirmed I wasn't the first person to have that.
Of course, we can worry about a more sinister reason: progression. I'd expect that to be measurable either with pp tests, or freelites, or BMB's or if all of these aren't reliable enough – imaging. It sounds as if your oncs are very careful and responsible. Remember that many people can survive for very long periods with residual pain. Pain in itself is not a death sentence. Some papers imply that lesions don't heal- others say they do. I know some of mine have, because of scans I had once I went private. Normal X-Rays only show up damage when quite extensive, so other tests might be good. I had a humerus shatter very painfully due to a big clump of cells in the bone marrow getting out of hand. It didn't show up on X-Rays and the NHS where I was being treated in Scotland wasn't prepared to fund or approve other tests for reasons I could't ever get to the bottom of. If I had lived in London near a bigger hospital, I would have undoubtedly gotten the tests, even on the NHS, and once the problem was discovered, my humerus could have perhaps been re-inforced.
Everything is always more complicated and idiosyncratic:a week after I got home after my transplant I fell very very heavily and from quite a height onto that humerus. I was taking photos of fireworks on New Year's Eve. I thought of going to hospital immediately for X-rays, but I realised that casualty would be full of drunken revellers. It took over two more years before my arm became a serious problem, but I've read that if there are residual myeloma cells somewhere, then a very sharp knock can sometimes make multiplication more likely in that area. Again, I don't know if this is true.
I would be inclined to be delighted with the care your oncs are taking: try not to worry too much.
Best,
Eva
Mothas 11 years ago.
