This topic contains 43 replies, has 20 voices, and was last updated by 
sb3006 11 years, 1 month ago.
Hi
some interesting stories on here! Your all great fighters.
I was diagnosed back in April with solitary Plasmacytoma of the L5 vertabrae!I was in agony, 2 morphine and 8 co-codamol pills a day plus oral morphine for the pain relief.
The tumour fractured my vertabrae and its now crushed and half the size, I have had 6 weeks radiotherapy and am now waiting MRI results of the current situation. Its worked to an extent that i no longer need pain killers, but I was a very active person, and at the moment restricted to what exercise I can do which is frustrating.
Apart from seeing Haemetology, I am also under orthopeadic specialists with regards to repairing the Vertabrae.
I am 35!
Hi Richie
Welcome to the site, hope you get some normality back soon, it's a very frustrating situation to be in. No doubt you will be. Kept under observation quite closely from now.
You should look on the under 50 site for some contemporary views of the situation, not that we don't want you looking in here too.
Love Helen
Hi Richie
I had exactly the same as you aged 48 Plasmacytoma diaganosed Feb 2011 collapsed L5 vertebrae. 3 weeks 3 days MRI Scan to kyphoplasty and spinal fusion L4-S1 followed by 5 weeks radiotherapy. Not allowed to do much apart from physio for 3 months. Now back to playing tennis although I still have some backache on flexion activities. Ever since I have been on 2 monthly reviews with blood tests and bone marrow biopsy last Nov. Finding it difficult to live with the watch and wait scenario. Feel like a living timebomb of not knowing what is ahead. feel free to ask anything. Hope your back is settling down.
Liz
Thanks Helen
Its very good to hear everyones situations and stories from a knowledge point of view. Everybody is so positive.
Thanks Liz, ive responded on one of the other forums to yourself.
Hi Richie
Sorry for the late reply, just seen this.
I understand about the frustration of being restricted, I am still struggling with upper body strength and mobilty.
Good luck with it all and hope things are getting better for you.
Meera
Hi Richie,
I hope things are going well for you. I was diagnosed with solitary plasmcytoma of L1 in February this year, like you after a great deal of pain for 3 months. The tumour had shattered the vertebrae and so I had a vertebrectomy having L1 and L2 vertebrae removed and replaced with titanium cage. That was followed by 5 weeks of radiotherapy. 10 months on I am back to a fairly normal life, but can no longer run or do high impact stuff which I used to enjoy. I am just so thankful to the medical team that I am still walking. I am free of mm, at least for now, and can only hope it stays that way.
Hi there,
I just came across this site.
Would you be able to tell me what your presenting symtoms were?
I hope you are doing well as it has been sometime since your post.
Thanks
Adrienne
Hello All
Just thought I would add my little bit to the conversation I was diagnosed in 2003 with a Plasmacymtoma (PCT) affected my vertebrae L5 which almost destroyed it but I had a bi-lateral scaffold but in to support my spine which has worked very well except for the fact it has damaged my sciatic nerve and does cause quite bad pain in my left leg but I take pain killers but in general I still still stay fairly active even for a 72 year old.
Over the years I have several treatments SCT, and Velcade which was very sucessful and I was in remission for 4 years on that but recently my PP started to rise and I went on Revlimid which in its self was working howevr recently I developed a bump on my leg below the knee, had it checked and unfortunately it is a PCT and pressing ion my nerve causing even more pain in my left leg.
So its RT to be done asap and a CT scan in a fortnight and it looks like another bout of different chemotherapy.
I never know if I do right by putting all my woes on here, but sometimes I do read other peoples and I think its helps, we did have a support group group here in Exeter but it was so difficult to get ppl to join and unfortunately our numbers dwindled and we had to disband, it was very sad as it really was a good help we always did things like art, had talks by all sorts of people not necessarily about MM, its seems some people are afraid, but we always enjoyed ourselves.
Enough of my rambles, all I hope is all your treatment go well.
Peter Perham
Hi Peter
Since 2003 you have done very well pity about RT but if it solves the immediate problem,then it must be worth it.
10 years to anyone on here is all good news,the fact that you now need more treatment is a bit of a bummer,but that's what we are here for to support each other when times are hard,age does not come in to it.
Slims come out of remission,we saw the consultant first time in February 2011 he's had CDT then Velcade then SCT,but the consultant does not think the treatments are gruelling ,his words.
Slims attertude is being positive,I am just angry,I suppose I will calm down,and just get on with what needs to be done,but you still give me hope .Eve
We all get angry at times, but one has to remain positive as there is no other way, just go with the flow, I know there are days when I feel terrible but as my wife says no good feeling sorry for yourself. I know she has to put up with a lot of things, it seems the one nearest to you takes all the flak, but I do try and be good :-))
If the consultant thinks the treatments are not grueling perhaps he should try them himself, I have had all three and it was bloody awful at times and has left me with some horrible permanent side effects.
Can't type no more the wife is pestering me to go out LOL
Peter
Hi Adrienne
My symptoms were quite varied. I have severe bone pain associated with the sternum (except I didn't know that was bone pain). It was often excruciating but I felt it very difficult to describe. It was painful just to touch my chest area let alone apply light pressure. I also had muscular pain in my back, neck and shoulders. I found I have reduced ability to use my arms such as pushing and lifting. This was probably associated with the pain and the tumour position/size.
I'm 18months post treatment, my mobility had almost returned to normal and my pain has reduced significantly. Cold weather makes it worse.
How are you feeling? Have you got a diagnosis?
Meera
Hi Andrew I have read your story and my son aged 33 has Plasma Cytoma as well his is in his Sinuses and Throat ..Last year he had 25 sessions of Radio as the Specialists said that would kill the Tumour or at least Shrink It but It didnt shrink so they are taking blood tests every 3 monthswhich have always come back clear and also he sees a Professor to have the Camera down his nose to check that area and his Throat…They said his throat looks good but he still has the Growth and they said they didnt know if i was just swollen tissue for his Treatment remaining His Tumour grew quite deep into his tissues more so in his Sinuses They have been keeping an eye on him for the past year since treatment and they always say the same no change…They want to make sure it doesnt spread, I am so confused as hes not been told that hes terminal but he hasnt been told hes in remission so im wondering if his Tumour is Cancerous still or stable have you any ideas on why a Growth is still there but not changing in appearence…With your treatment did yours shrink Thank You
Hi Maxine,
Some notes about Plasmacytoma in the sinus cavity as promised.
Firstly, I was saved because my tumour was a solitary and before starting treatment the NHS spent 3-4 weeks scanning elsewhere.
"Specialists said that would kill the Tumour or at least shrink it"
I was treated with 6 weeks of chemotherapy (aka Thalidomide) to sucessfully shrink the tumour before 5 weeks of radiography. After 11 weeks of treatment they removed what was left, plus a "safety apron" around it, with surgery. Why did they not do chemotherapy for your son? Suggest thst you ask for a referral to an oncologist.
"They are taking blood tests every 3 months"
They do that for everyone including the healthy and after 2 years they now test every 6 months. The haematologist looks at the paraprotein profile and decides to alert the other specialists, or not. As they know what they are looking for 2nd time around it can be diagnosed early. IF it comes back there are apparently some known redial drugs.
"He sees a professor to have the camera down his nose to check that area and his throat."
Inspection is an effective tool and we are lucky that our tumours are accessible from the outside without surgery. My own tumour has been removed and they check that the scars are still healing. I still use a sinus rinse kit (Boots, £10) twice a day religiously to keep it all clean. Use plain cooking salt at 50p/Kg not their individual sachets at 9p each.
"He's not been told that he's terminal but he hasn't been told he's in remission."
They cannot tell any patient they are 100% fixed because they cannot guarantee success.
"If his tumour is cancerous still or stable have you any ideas on why a growth is still there but not changing in appearance."
I'm not a medical professional and thus not qualified to comment it but sounds to me that "cancerous & growing" is the bad news condition and "stable and unchanging" is the other. I know which one I'd rather pick and, as I could get run over by a bus tomorrow just like everybody else, I try not to worry about it.
I suggest that you ask the professor why no chemotherapy and try to stop worrying – no news is good news.
Kind Regards,
– Andrew
Andrew Walker
Hi i'm a newcomer here, my other half has recently been diagnosed with Plasmacytoma, sadly we know nothing other than the basics and that radiotherapy will need to be done. Why is it difficult finding information on Plasmacytoma? so many amazing people supporting one another here. Stay positive and keep smiling x
Sallyann
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