[MothasParticipant]

I finished my PAD treatment 2 or 3 weeks back, and since then have noticed the creeping return of bone discomfort in a few places.

During treatment my bone pain pretty much disappeared, has anyone else experienced something similar?

I'm seeing my consultant tomorrow and it looks like I'll need some scans to have a look to see what's going on, which will push my SCT back. Grrr.

Tom

[meganjaneParticipant]

Hi Tom,

Sorry to hear that your bone pain is back. Phil had bone pain all through his PAD treatment and SCT and he still has it now although some days it seems better than others. His main problem is his back and ribs. Phil has had a consult to see if kypholplasty would help but at the moment he has decided against it, he will see the consultant again in June.

None of this really answers your question except to say that for Phil the bone pain is better or worse depending on how active he has been. We have not been told that there is any reason for concern and we have also heard that sometimes the SCT itself can help with bone pain. Hopefully any additional scans will not delay your SCT. Phil had a MRI the day he was admitted for his transplant as his back was not getting any better. Phil asked for the MRI but there was no talk of delaying the transplant for it.

Megan

[MothasParticipant]

Megan thanks for the reply that's really helpful.

My pain, well it's more discomfort than anything and is less than prior to the treatment, I was just getting that horrible paranoia that it meant that PAD might not have worked.

I think also that Dex can mask pain and discomfort and when you get off it, the discomfort can re-emerge.

thanks again

tom

[MicheleParticipant]

Hi Tom
I had CTD for 6 months and am now 15 months post SCT.
I still get the odd bone twinge in different parts every now and again and have been assured that it's due to damage done prior to my diagnosis.
My PP's have remained steady at below 1 since SCT so I have no reason to disbelieve what the specialist says.

Hope this reassures you a bit!

Michele

[EvaParticipant]

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

[tomParticipant]

Hi Tom

Well you know am on nothing so I can't help, just wanted to say hope your SCT is not delayed

From one Tom to Another Onwards and Upwards

[MothasParticipant]

Thanks Michele most helpful and congrats on your remission. Looking good and long may it continue.

[MothasParticipant]

@Eva

thanks Eva, I suspect (and fingers crossed) that coming off dex is the thing behind this. I've also started taking a bit more strenuous exercise. I'll have a clearer idea tomorrow after seeing the onc.

Thanks to everyone who's replied it has eased some of the anxiety.

t.

[MothasParticipant]

Always heading vertically Tom, always.

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