Hi Linda,
Thanks for your reply. I spoke to the Macmillan nurse yesterday, who told me much the same thing, i.e. that they wouldn’t really expect the lesions to get smaller at this stage, and that they go by the paraprotein level, which was apparently “zoning” when they last checked it. I think this means it’s present but too low to quantify. But since it was very low to begin with, despite there being 4 lesions, I worry that it’s not a great indicator of how much cancer there actually is… Anyway, you’ve confirmed what she said, i.e. that they would do the SCT if the paraproteins are right down even if the lesions don’t get smaller, and that they would expect the lesions to remain in some (presumably non-cancerous??) form anyway. I was assuming it would be like with radiotherapy, which I had last time, which got rid of the cancerous cells and healthy bone/marrow grew back in their place – insofar as they were able to, as that vertebra had collapsed.
I’ll hopefully be seeing the consultant tomorrow so will be able to ask her about it then.
Charlotte
Tom, what a bugger. I’m so sorry. I see this was a few months ago – how are you doing now? How are they tackling it?
I haven’t been on here for a long time, but have been thinking of you. You were right about my plasmacytoma progressing. I wasn’t in the lucky percentage; it did so after just over four years. I’ve completed 4 cycles of VTD and have just started a fifth, but the MRI done two weeks ago apparently shows no change in three lesions, and one that may have got bigger, so having reconciled myself to the idea of the SCT I am now all at sea.
What a bastard this disease is.
Charlotte
Hi Carolyn,
In remission is great news. I'm glad you're feeling so much better. Do keep on trying not to think about it too much, if you possibly can. I take the view that there's nothing much I can do about whether or not it decides to come back, and as long as I'm feeling good I should just remember to enjoy that. I understand your concern about the light chains, but if your doctor doesn't seem worried, I guess you just have to take this as the new 'normal', keep having regular checks and make sure they monitor it properly. I'm still having blood and urine checks every 3 months – I've been in remission for more than 3 years now, and they did say we could space the appointments out more, but I prefer to know they're keeping an eye on things, and they're fine with that.
I've been busier than I would like to be this past year, with work being a bit more intense than I'd planned to let it get: it's all good and interesting stuff, but involving quite a lot of travelling back and forth, and I do notice that I tend to get absolutely exhausted if I don't get at least 8 hours' sleep and make sure I pace myself. I do have to catch myself and remind myself that, while I'm not ill, it is important for my health that I take breaks when I need to and don't let myself get stressed out, and that this is more important than the work.
Other than that, though, everything seems fine, and to be honest I don't think about it much any more, except in terms of why I have a bad back. I've stopped feeling as if Death is lurking just around the corner. If something bad happens, I guess I will deal with it, because, somehow or other, whatever happens, we always do.
Take care, and good luck on the 13th,
Charlotte
Hi Tom,
So glad to hear you're doing so well. I hope you had a good break in Norfolk, and that your strength continues to return.
The same message, of course, to Scott – great to hear that your SCT went well. Here's to long, long remissions for us all.
All the best,
Charlotte
Tom – I just popped back to see how you were doing. Very glad to hear you are getting the transplant soon; I really hope it all goes smoothly for you. I'm sure you'll have plenty of friends and family looking out for you, but if you would like this strange face to pop round and say hello as you recover, let me know.
All the best and stay strong,
Charlotte
P.S. I followed your advice re. getting an MRI, and my spine looks fine, thank God (other than being a bit of a mess!). It's really good to have that bit of paper, though.
Hi Tom,
After scuttling away to put my head under the pillows and sing 'la la la' very loudly after your last posts, I've come back briefly to take a quick sideways look at the website to see how you are doing. Very glad to see on another thread that your treatment seems to be going well, and seriously impressed that you are managing to do so much work! I hope you're only doing 'good' stress – don't have any truck with the bad kind…
Thank you for encouraging me to ask for an MRI. I did get quite worried, so at my next appointment in January I asked if they would consider doing one, as it had been nearly 3 years. They confirmed that they don't actually do them as part of the standard follow-up at all there, let alone twice a year. The haematologist's point of view was that if it's going to recur it could pop up anywhere, and they can't repeatedly MRI the entire body; neither did it make sense to keep MRI-ing me if there was no indication that anything was wrong. However, she was quite happy, as I was worried, to refer me for a scan of my spine to set my mind at rest, and it was done a week or so later. I haven't actually been sent any results; it's a bit annoying that they operate on the 'no news is good news' principle, but I've given up asking them to write to me anyway. I assume that all was well.
She also, incidentally, confirmed that she'd had several plasmacytoma patients who'd been "discharged back into the community" after ten or so years with no symptoms. I'm sorry that that won't be much consolation for you at this point; however, it did cheer me up.
All the best and keep going with your positive attitude – perhaps this whole thing will somehow eventually evolve into a Wellcome commission! (I was looking at your blog.) I just heard from a German friend the same age as us who had a bone marrow transplant a year ago (for a very aggressive form of lymphoma) that she is still doing well and regaining her strength, which makes me optimistic that it will be as successful for you too.
Charlotte
Oh sh*t. They haven't MRI'd me since I finished treatment two and a half years ago. My bloods are fine. I feel slightly sick now.
Are you at UCH? I'm at St George's. I think they're very good, but MRIs don't seem to be part of the standard follow-up.
Hi Tom,
I'm so sorry to hear your story. I can only imagine how you are feeling right now, and hope that whatever treatment they decide to give you now will succeed in keeping it at bay.
How did they discover the new areas in your back?
I'm actually acutely aware of the negative risks and percentages and likelihood of progression. What I've heard almost nothing about are the people you refer to who don't progress, or who progress only much later. I'm trying very hard to stay positive, and so posted this in the hope of hearing from some of them, if they are indeed out there.
Wishing you all the best – I hope you have good people around you to give you love and support.
Love,
Charlotte
Hi Carolyn, and sorry to reply only now.
Only 40, my God. I was (only just) 43, and Meera above is only 34. They told me the majority of people with this disease were over 60, male, and Afro-Caribbean, which was why it hadn't occurred to them to look for it in me!
What did your recent blood tests say? I'm wondering why your doctor doesn't want to do another scan, especially as you're still in pain. They scanned me to pieces, repeatedly – though when I think about it, all the MRIs and CTs were before and during treatment. Since then it's just been X-rays, and maybe they don't want to keep giving you chest X-rays…? They always tell me to let them know if I have any kind of bone pain, or notice anything unusual, so I do, they immediately pack me off to X-ray, and it's fine, and everyone's minds are at rest. Perhaps yours requires a CT scan to see things properly? – which I can imagine they'd be more reluctant to do.
Anyway, it's definitely worth asking your doctor to explain in detail why there's no point in doing one now. If you really feel worried and want it done sooner rather than later, explain that to him/her and see what he/she says. I hope you have good and sympathetic doctors. I've been lucky in that respect – not at the first hospital, but where I ended up being treated. However, my awful experiences at the first one really brought home to me the need to be very clear and firm and insistent about having things properly explained, and persisting in getting answers, and treatment, if you're not happy with the way things are going. Do you have someone supporting you, also in your dealings with the doctors? This can be useful.
As for still being in pain: there are different kinds of pain, of course. I very much hope you're not in as much pain as before and during treatment…? – but it doesn't surprise me that you would still be in pain at this stage. I know it feels like it's been going on forever, but 9 (now 10) months is actually not that long, when you think of all your body has been through. Be patient with it – it needs more time than you think to recover. Every time I reached a point when I'd thought "surely I'll be better by THEN", I was nothing like as far along as I'd thought I would be. Now I look back and wonder how on earth I'd thought I could mend so fast. I'm sure you are mending, albeit slowly. Just take it easy, only do as much as you feel comfortable doing, and just focus on continuing to get better! As you say – 50% it won't, and we are going to be in the GOOD 50%.
Love,
Charlotte xx
Dear Meera,
Thank you for your reply and sorry not to have written before. I also really hope it doesn't progress for you – 34 is ever so young. What did your recent MRI show? Does "re-staging" just mean reassessing the stage of the disease?
I was also told 50/50, but I'm very heartened to hear you were told that the risk drops after 5 years. I think I've read something similar, as in that those who remain free of the disease for 5 years are more likely to have a good prognosis – I'm not sure whether this is the same as the risk itself dropping, but either way it sounds good to me! I marked 2.5 years on November 20th – past halfway. 🙂
As for the risk increasing after 15 – I wonder what that's about. Could it be that, with this being a pretty unusual condition and more common in older people, this simply means that it is more likely to come back when we are VERY OLD, in fact giving us another 40-odd years, since we are still very young?! Let's hope so. (45 is still very young, or so I seek to believe. 😉
I'm not surprised you're still weak a year and a half on. I was much improved at that stage, but looking back I was definitely still weak in some respects; I'd only just stopped walking with a stick, my back still ached a lot of the time, and I was still working on getting back the muscles that had been devoured by the steroids, and further weakened by not being able to walk for so long. It's hard for me to imagine exactly how being treated on your sternum will have affected the areas you mention, but of course it's all in the upper body area.
I expect they've given you gentle exercises and stretches to do, have they? You really do need to do these to get the muscle strength back – resting is good sometimes, but the ache will only really go away when you work on the muscles. If you haven't had hydrotherapy, I strongly recommend it – I had to badger my GP for a referral, but it was well worth it. After that, when i was well enough, I joined a remedial pool exercise group organised by the local authority. Most of the participants were elderly people who'd had hip replacements etc.; I was already quite a lot fitter than them by then, and the movements we did in the water were so small I wasn't sure they'd help. But they did – I would really notice the difference if I missed the weekly session.
I probably mentioned above (I haven't re-read all my posts) that I've found acupuncture a tremendous help. Find someone GOOD, though, preferably someone with lots of experience who actually trained in China. If you don't notice anything at all after a couple of sessions, they're probably not much cop. You may also find reflexology helpful – to my surprise, it worked better for me than massage. That and meditation help me relax mentally, and this has a noticeable effect on muscle tension.
OK, I think I've rambled on enough now. Do let me know how you're getting on. Take care and all the best xxx
Liz, thank you for going into detail about the spinal fusion. I'm not sure what you mean by flexion activities; do you mean bending backwards so that the vertebrae are compressed?
I spoke to the orthopaedic consultant last week just to find out more about this, and he set my mind at rest. He explained that the operation would involve removing the vertebra entirely (which I didn't realise), replacing it with a "cage", and fusing the vertebrae on either side. He said that after the op most people are left with an average pain level of 3-4 out of 10 for the rest of their lives, and was that something I would exchange my situation for? Definitely not is the answer (I guess my pain level generally varies between 0 and 3, though my pain scale is somewhat different these days after what it was like at its worst!). So I'm happy now that I/we made the right decision not to operate again after the kyphoplasty, and that this is about as good as it gets – which is fine.
I wish this site had a "like" button like the one on Facebook!
I just wanted to say that those were very good posts, Dai and Paul (to which I am coming about a year late…), especially re. managing other people's reactions, keeping a note of side-effects, and staying positive.
Charlotte
Hi Carol,
I'm sure others can give more useful advice than I can, as I've not experienced any of what you're going through. I just came across your post and wanted to send my love and best wishes, positive thoughts, whatever, for your recovery.
I think there's something especially scary about the thought of it coming back when you've been through it once, not least because you have some idea of what to expect, whereas the first time you're just blindly getting on with it! Try to stay positive – by which I definitely don't mean pretending to be fine when that's not what you're feeling, but do keep on believing you are going to come out the other side and that all shall be well again.
Love,
Charlotte xxx
I'm answering my own question here, in case anyone else would like to know what the registrar told me when I asked her today. She said that yes, she had come across people for whom plasmacytoma had been a one-off occurrence and had not recurred in 15, 20 years or something along those lines. It's great to know that this is possible. I think the other doctors I've seen to date have been careful not to get my hopes up – I'm just happy to know that there is something concrete I can hope for!
Hi Vicki,
Blimey, Colin has been through the mill, hasn't he. I hope he's doing okay now?
The fracture sounds very similar to mine, at least in the position, but as I understand it if they have told him he has MM this is different from solitary plasmacytoma even if at present he only has one lesion. They did a bone marrow biopsy on me to determine whether the disease was present outside the vertebra and told me it was not, hence "solitary" plasmacytoma… I didn't have all those drugs, and no chemo (other than the dexamethasone).
I believe it can be problematic to operate around the site where they have directed the radiotherapy; I think it creates scar tissue or something. I seem to remember asking whether something or other would be possible and they said not after radio for this reason. But as I can't remember what I as asking about, it might be worth asking… The kyphoplasty was an emergency operation to stablilise the vertebra, as it had completely collapsed and the tumour was compressing the spinal cord; they were afraid I might lose the use of my legs if they didn't relieve the pressure.
Because the vertebra had deteriorated so much and the bone had been softened(?) by the tumour they weren't able to put in as much cement as they would have liked, with the result that it is now wedge-shaped; I'm 3cm shorter and tilted forwards by about 35 degrees, I think they said. People say they don't notice it when they look at me and that I stand pretty straight. What I notice, though, is that:
1) I've also lost 3cm
2) I have a slight 'hump' (kyphosis, I think it's called)
3) the vertebra sticks out a little, which means I keep bumping it on hard chairs, and find it hard to lie flat unless on a soft surface
4) it's quite hard work for me to sit/stand upright. The muscles of the lower back have working harder now to pull me upright; they get very tense, and the area around the site aches quite a lot of the time. I need to lean on something after a few minutes, i.e. if sitting I usually have to lean on a table or on the armrests of a chair, and if standing I tend to lean or hold on to something. I find things like standing in queues quite hard. Oddly, walking is easier – something to do with the weight of the body not bearing straight down on the bone, I think.
So yes, my posture has been affected, and I don't think there's much to be done about that, though possibly the scaffolding might help, I don't know – I hope to be able to do without it. I have found an excellent osteopath/acupuncturist who does very deep acupuncture on the muscles of my lower back, which releases them, and myofascial release on the muscles around the T11. I was still bent over and leaning heavily on a stick when I went to him in Sept '10 (I was diagnosed in Jan '10), and he got me walking upright within 3 sessions.
Other than that, what helps me a lot (when I do it! I really notice it when I don't for a while – e.g. now) is gentle exercise – general light stretches, gentle exercise to strengthen the stomach muscles, walking and swimming – combined with meditation. Not from the 'zen' point of view; I find it can really make a physical difference – breathing, relaxing the muscles, etc. (If you're interested, you could google Jon Kabat-Zinn – he did medical research at Harvard on the use of meditation in treating chronic pain.)
I hope that helps a bit… Good luck and let us know how you and Colin get on.
All the best,
Charlotte
