This topic contains 30 replies, has 10 voices, and was last updated by 
Carolynjane 11 years, 2 months ago.
Hi Charlotte
I was diagnosed woth solitary bony plasmacytoma in my sternum in May 2011. I had steroids and 5 wks of radiotherapy. Following treatment there was no paraprotein trace but I still had high serum free kappa light chains. These gradually reduced at each blood test but it took until August 2012 for them to return to normal levels. My PET scan in March 2012 showed there was still some activity in the sternum but my Haem felt this was more likely to be signs of bony healing over actice tumour cells (although nobody can be sure). She stills reminds me that I have had definitive treatment and we should watch and wait. I had a second opinion on this and he agreed. I have just had a re-staging MRI so we'll see what that shows.
In terms of the future, I have been told that I have a 50/50 chance of progression to mm, but this decreases after 5yrs and then peaks again at 15 yrs. I am 34 and really hope I don't progress.
I'm really pleased that life is almost back to normal for you. I still have a lot of muscular pain in my back and shoulders, plus upper body weakness ( they think because of the large size of the tumour). The bony pain has reduced in the last few months.
I've stopped looking for stats now as it caused far too many sleepness nights, as I realise there are so few of us, but still get really anxious about test results before each appointment.
Anyway good luck
Meera x
I would just like to say Hi Charlotte.
My name is Carolyn and I was diagnosed with a solitary plasmacytoma of my sacrum in January this year. I have had 4 weeks of radio therepy and I'm currently waiting for results from my most recent blood tests. My doctor has suggested waiting until next year to do another scan as it may still be too early to see any results. I am still in pain and hoping this will get better. Its great to read such positive messages and I have also been given a 50/50 chance of my cancer developing into myeloma, but thats 50% it won't!!! I am 40 and some days are easier than others, I do get very tired but I think that must be the same for all of us.
All the best
Carolyn
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.
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
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
Hi Charlotte,
I've copied this from another post I made.
[quote]I've just been diagnosed as having MM after being in remission from Plasmacytoma for 6 months.
Plasmacytoma is also known as solitary plasmacytoma as it's an incidence of a single lesion rather than multiple (hence multiple myeloma). In many cases it doesn't progress to full myeloma but for most it does. It has for me.
Last year after severe pain my my shoulder they discovered the lesion and treated it with 3 cycles of cyclophosphamide and Dexamethasone followed by 5 weeks of radio therapy. It seemed to successfully zap it so I was happy.
Alas, rather than the many years of remission I was hoping for, I've been dealt a different hand of cards. They've found evidence of multi focal progression in 4 areas of my back, which are in very, early stages and I am now fully upgraded to the MM community. [/quote]
My understanding (I am not a medic so treat with caution) is that Plasmacytoma progresses to full MM in around 65% of cases. It is very rare but you are in a better postion that people diagnosed with straight MM. It may never progress or not for many years. Progression is also impacted by whether it's in the bone or outside of the bone. Mine was in the bone which made progression more likely as was ultimately the case.
all the best
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 Charlotte thanks for the kind words. Kind words go a long way even on the internet 🙂
After my treatment for Plasmacytoma I was on a 3 month blood test regime and a yearly MRI scan. I only finished my radio treatment in Feb, so this MRI scan was to confirm that the treatment had dealt with my shoulder – which it successfully had.
Unfortunately or fortunately depending on which way you look at it, it also showed some very subtle indications that there was disease progression in different areas. My bloods are good there is no sign of increases in protein levels or anything else.
My specialist told me that as the activity is so subtle and early it would only show up on MRI scans. So that's how they have caught it.
It's very rare this disease and like you I struggled to find anyone else in a similar situation or clear advice on the Internet.
I believe it really depends on where you are getting your treatment but, my advice is that you insist on regular (perhaps 2) MRI scans a year alongside your blood tests. The earlier they catch it the better.
It was part of the regular protocol where I am treated, so I guess I got lucky.
I'm phlegmatic about it, or I'm trying to be. I'd always thought it was likely to progress.
I hope your's doesn't or not for many many years
tom
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.
Charlotte please don't panic. I'm sure if you request one they will arrange if for you.
I was at Mount Vernon, but the team is the UCLH team as they cover both hospitals. My next treatment will be at UCLH but all the scanning takes place at Mount Vernon which is north west london.
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
Dear Charlotte
I have only just read your post dated 28/11/2012 and may I say thanks for your support and advice. I hope all is still going well for you and that your not finding to difficult to put all this to the back of your mind, which I battle to do every day.
I have been told I am currently in remission and my tumor has reduced in size following radiotherapy last summer. I am in less pain thankfully and manage most things easily. The only thing concerning me right now is the fact that my light chains are not reducing, although, they are not increasing either. My Doctor said he would like to have seen a reduction in my light chains following radiotherapy but didn't seem too concerned. I will be seeing Dr Blessing again on Friday 13th September so I will try to gain a clearer picture if that's possible. All in all I'm feeling pretty good and hope you are too. Would love to hear from you soon. Take care. Carolyn
Dear Charlotte
I have only just read your post dated 28/11/2012 and may I say thanks for your support and advice. I hope all is still going well for you and that your not finding to difficult to put all this to the back of your mind, which I battle to do every day.
I have been told I am currently in remission and my tumor has reduced in size following radiotherapy last summer. I am in less pain thankfully and manage most things easily. The only thing concerning me right now is the fact that my light chains are not reducing, although, they are not increasing either. My Doctor said he would like to have seen a reduction in my light chains following radiotherapy but didn't seem too concerned. I will be seeing Dr Blessing again on Friday 13th September so I will try to gain a clearer picture if that's possible. All in all I'm feeling pretty good and hope you are too. Would love to hear from you soon. Take care. Carolyn
Dear Charlotte
I have only just read your post dated 28/11/2012 and may I say thanks for your support and advice. I hope all is still going well for you and that your not finding to difficult to put all this to the back of your mind, which I battle to do every day.
I have been told I am currently in remission and my tumor has reduced in size following radiotherapy last summer. I am in less pain thankfully and manage most things easily. The only thing concerning me right now is the fact that my light chains are not reducing, although, they are not increasing either. My Doctor said he would like to have seen a reduction in my light chains following radiotherapy but didn't seem too concerned. I will be seeing Dr Blessing again on Friday 13th September so I will try to gain a clearer picture if that's possible. All in all I'm feeling pretty good and hope you are too. Would love to hear from you soon. Take care. Carolyn
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
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