[CharlotteParticipant]

Hello,

Not sure of the protocol here, but I've been instructed to introduce myself. 😉

I'm Charlotte, I'm 45, I was diagnosed in Jan 2010 (2.5 years ago) with a solitary plasmacytoma that had eaten away my T11 vertebra. I was treated with kyphoplasty (the vertebra had collapsed), 5 weeks of radiotherapy, and a barrage of dexamethasone. The steroids were the nastiest bit – I had a lot of side-effects (including absolutely excruciating pain in my legs and joints – has anyone else had that?), and they took a long time to recover from.

But I have been doing very well ever since, apart from a weakened spine and backache, which is hardly surprising! The wonderful team at St George's in Tooting check my bloods and protein levels every 3 months or so. No sign of cancer since the end of treatment; no myeloma. Last month I walked up a mountain (about 3000 feet), and down again, which given that I could barely walk at all for about 8 months I find pretty amazing. Thank God for the good guys in the NHS.

Every now and then, though, I terrify myself by going online and trying to find data on survival rates and the likelihood of progression to MM. Of course I know that, statistically, this is a possibility, and I think I know what the statistics are, insofar as they are known at all. Mostly I try not to think about it, as there's really nothing I can do about it, is there(??), other than try to live healthily and happily and not get too stressed out. I meditate, I take maitake mushroom tablets to boost the immune system… whatever seems to make sense to me.

I feel that I'm back to normal (if slightly altered) life now, that I don't have to think about myself as ill any more. And a recent scare made me realise just how much I DON'T want to go through all that again – or worse. And I realise that it's… well, I'm superstitious about even saying it. I think you people on here know what I mean.

I would be delighted if anyone here has any POSITIVE stories to tell about plasmacytoma NOT progressing. If there is such a thing, I would really love to know.

Best wishes to you all,
Charlotte

[ellenModerator]

Dear Charlotte

I'm sorry to see that you haven't had any replies to your post. I hope you don't mind me replying, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

I think that the reason you have had no replies is that solitary plasmacytoma is fairly rare and it may be that none of the folk who contribute to the Forum have any direct experience with it. However, if you have a read through some of the other posts, for instance in the 'Side-effects' section (you can do a search if you log in) you will see that many people have experience of steroid side-effects.

If you have a look on the ?Patient Services? section of the website you will see that there is an Infosheet specifically on Solitary Plasmacytoma http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/ which does state that radiotherapy is usually a very effective treatment, but that long-term follow up is recommended as there is a risk of progression to myeloma in some patients.

It is very encouraging that you have done so well and that check-ups show no sign of myeloma. If you feel it would help to speak to myself or my colleague, Maggie, then please do not hesitate to call the Myeloma Infoline on 0800 980 3332 or email us at askthenurse@myeloma.org.uk

All the best

Ellen

[PerkymiteParticipant]

Hi Charlotte, Sorry to have missed your post earlier but I have been busy lately and have just come back from a nice week in Menorca with my Grand children.

Firstly I recommended that you do not go surfing the web for info and cures. All the information you want is on this excellent site. Have a look at the personal stories. Most Stats are way out of date so ignore them. Lastly, I am sorry to say there is not a magic bullet out there waiting to cure you, since I was diagnosed I have seen all sorts from Red Wine, Cucumber to Cumin recommended, and if it gives you some support why not, but when the Haematology team tell me to start taking it I will believe it.

I had a single plassee whatsit in my neck. It ate the 4th vertebrae and it was discovered when I broke my neck getting out of be one day !! I had a SCT etc..etc.. . but my pp level never disappeared as yours seems to have done, it remains around 2.8, the last check. My head is held up by internal scaffolding but you would never know it I have full movement and the scars are at the back of my neck. That was some 3 and half years ago.

I feel fit and I am very active. My wife and I decided to ?Go where we have never been? and I have just returned from an excellent trip to the Scilly Isle. Although 3000 ft mountains are not on my list – well done you 😎 .

My tip would be to keep positive, do not give up and just keep going no matter what. Put Myeloma into the back of your mind and get on with your life. I go for my next check up on the 29th.

Must dash off to Newquay with my Skittle Team for the weekend this week and I have got to sort things out.

Kindest regards ? vasbyte

David

p.s.. Welcome to the site 😉 😀

[tomParticipant]

Hi Charlotte

I also must say sorry as I also missed your post ????? I dont have anything to say about your plasmacytoma as I am fortunate enough not to have had one? (I tell you MM gets staranger the longer I have it?)

I have to say you done as was aked "I've been instructed to introduce myself" and you have done that well 😎

Dont frighten yourself am sure you have found the scary ones I found in 2009 ? and they have not moved on stick to this site as it moves with the times and treatments.

Sorry I was late in the welcome but its stil as warm 😎

Love Tom "Onwards and Upwards" xxx

[lizfParticipant]

Hi Charlotte
I had plasmacytoma L5 Feb 2011 Kyphoplasty and spinal fusion L4-S1 and 5 weeks radiotherapy but no drug treatment. Now on watch and wait review every 2 months. Are your paraprotein levels very low? mine are hovering around 21. Advised no treatments unless CRAB signs.
Keep in touch
Liz

[richdrummieParticipant]

Hi Liz

Thanks for your message.
I have had some bouyant news this last 2 weeks with the tumour gone from my Vertabrae and my para protein down to just 0.1 g p l

However there is not a lot left of my L5 so I am expecting an operation in the next weeks/months at Cardiff Hospital where they plan to install a titanium cage where the L5 was.

What symptoms do you suffer with at the moment? fatigue? night sweats?

Thanks

Richard

[richdrummieParticipant]

Here is a scan of my spine
before and after
Feb 2012 and then July 2012 after having radiotherapy

[VickiParticipant]

Hi Charlotte

My partner Colin has mm, diagnosed last october 201-. He had a vertebrae fractur at t12 on his spine, they did radiotherapy. Is that the same as a plasmacytoma? He did not have any other lesions. He had 7 cycles of cyclophos. Dex and revlimid, and is now waiting for SCT. His pps went down to zero and light chains were 700 which will apparently be finally zapped by high dose chemo at SCT. I don't know of any of this information helps you as I am not sure how that compares to the plasmacytoma?

You keep positive and that's a great boost for anything….eat well, fruit and veg. I can't recommend any 'cures' wish I could be just look after yourself, and don't look back, you've progressed.

Perhaps you can help us too? Colins vertebrae fractured at t12. No one mentioned kyphoplasty (sorry about spelling).how did you get on with that. Can if be done after radiotherapy? Colin is worried that he has got a little stoop and has lost 3inches I height. Did your posture get affected? As the kypho helped?

Sorry to ask you questions when I feel I've been no help to you!

Vicki

[CharlotteParticipant]

Thanks very much for your reply, Ellen. I was getting quite worried that no news was bad news. I suppose it's a bit too much to hope that someone is going to come on here and say "I had a plasmacytoma 30 years ago and have been absolutely fine ever since!", but hey, you never know…

That's also partly why I wanted to post here and say that I'm doing well (so far), in case there's anyone else out there who's had it and is looking for good news. I guess, as a friend pointed out to me, people tend to come on forums like these when they have a problem, not so much to say that they're fine.

Similarly, when I was trying to find out how long it would take for the dex side-effects to wear off I found lots of posts all over the place about the side-effects but nothing at all about when, or even whether, they would go away! I told myself I'd go back and post something myself when I'd got through it, but never did so. (For the record, I was on between 10 and 24mg for about 3 months, had lots of – differently – nasty side-effects after coming off, and didn't de-puff completely for almost a year afterwards. But it did all go in the end.)

It's because plasmacytoma pretty rare that I thought of posting here. At least people here are fairly likely to know what I'm talking about, which is a start. Thanks for the links and the info; I'll take a look.

Best wishes,
Charlotte

[CharlotteParticipant]

Thanks, David. Glad to know you're doing well. I hope your check-up was fine.
I also broke my back getting out of bed, to answer the phone – the insurance company who'd called me ended up calling an ambulance!

I've wondered about scaffolding. They wanted to put it in at one point, but I resisted as I couldn't face another op at that time, and wanted to see how I would get on once my muscles had recovered. I was also worried that it would mean I couldn't have MRIs, but I gather titanium means this isn't a problem…? Anyway, my back is generally fairly okay, but sometimes it does ache a lot, and I do wonder whether having that internal support would mean I didn't have this. There's no guarantee it would, though, so for now I don't plan to ask them to do it; I'll save that pleasure it for some later date. :-/

All the best,
Charlotte

[CharlotteParticipant]

Hi Liz – thank you very much for replying.
I seem to have had "no visible paraprotein, no Bence-Jones protein" since finishing radiotherapy, which judging by what people are saying here makes me very lucky.
I'd be very interested to know how you feel about the spinal fusion, if you don't mind answering…? namely: was it a big operation? Did they do it at the same time as the kyphoplasty, or later? Do you notice any restriction in the movement in your back as a result, and does it feel to you as if your spine is weak at L5, or does it feel well supported?
All the best,
Charlotte

[CharlotteParticipant]

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

[VickiParticipant]

Blimey Charlotte, you have been through the mill too!

Thanks for all of your background information that's really useful. You sound like you have made real progress and had to work really hard for it. It all sounded so very scary for you but really glad younger keeping yourself active. Colin is doing quite well thanks but is having trouble,harvesting stem cells (we have failed twice), but fingers crossed if we get a third chance. You know I think younger right about the kyphoplasty, I thought I read somewhere that the couldn't do it after radiotherapy as it makes the bone hard and solidifies it so your thoughts make sense.

Your use of an osteopath and meditation is quite an interesting one because Colin always says his back hurts more when he is tense so it makes sense that any muscle relaxation will help.

I am absolutely amazed at what challenges you have faced, and met :-). Good on you, and keep that positive outlook

Vicki and Colin

[lizfParticipant]

Hi Charlotte.

I had my kyphoplasty and spinal fusion done at the same time 3 weeks 3 days after my MRI found the plasmacytoma and fractured L5. Back pain went instantly on awaking apart from surgical soreness. My back aches now particularly on flexion activities but I still play tennis. It feels well supported and I can touch my toes. On CT scan there is some loosening of the screws which may be related to the radiotherapy after surgery but I am not doing anything about this unless I have to (this may account for the backache). I hope this answers your questions.

Liz

[CharlotteParticipant]

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!

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