Some interesting ideas have come up on the Facebook Myeloma UK Support Group today, possibly related to my intermittent right shoulder / neck pain problem. My rational mind says that it's purely muscular, if I've done something a bit stupid the day before. That's supported by a generous spray of Deep Heat usually being effective. But sometimes it appears for no obvious reason and it doesn't always go away quite that easily.
The other part of my mind remembers that lesion in rib #4 at the back - the one that was most probably responsible for the pain in my right shoulder blade. I've always had the feeling - and if I recall correctly it may have been supported by either the radiotherapy consultant or one of the technicians - that I might end up having a course of radiotherapy for it.
Here's the important part of the first Facebook post:
"Can myeloma relapse without showing in the blood work? My father has multiple tumours but his bloods made us and his consultants believe it was still at bay. It was only due to him being less energetic/ mobile that a scan was done."
and the second:
"Mams doctor told us that light chains are important blood indicators however another doctor told us it is not always about the blood numbers but how you feel in yourself any pain or recent changes in health"
I certainly get occasional pain in that area, and the tiredeness / fatigue is getting slightly worse, especially after any exercise when I tend to collapse in a chair downstairs and go dead to the world for an hour or more before I can raise the energy to stand up and start doing anything.
the third:
"That is interesting- thank you so much for replying. He has been on dara, Dex and revlimid for a year. He started slowing down very slightly in lockdown but was put down to him not having his physio and weakening. Last 3/4 weeks been getting worse so a scan was done. His consultant wants to be sure it’s def myeloma so is doing a biopsy tomorrow and then hopefully treatment will resume ASAP."
and the fourth and last:
"Yes can change to non secretory."
Non-secretory myeloma means no production of paraproteins or excess free light chains, so it could match the bloods results I've been getting. But the effects on bone can remain - and get worse.
That's not a complete picture, but it's enough pieces of a jigsaw to suggest what the full picture might look like. Or on the other hand, maybe it's just muscular...
I have a 'phone consultation with my haematologist on Monday (14th) and will raise this with him. If he doesn't reject the idea out of hand, I suppose the next diagnostic steps would be a PET scan (probably involving a trip to London, not a great idea at this time), X-ray or CT scan, and another BMB (bone marrow biopsy). All of those should be possible at Springfield.
That's the first completely myeloma-related post I've written for quite some time. And I did get a good walk around the triangle and across the fields this morning. I then fell asleep for long enough to be late making lunch...
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