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Hi,
I’ve been diagnosed with Plasmacytoma in my spine and want to connect with anyone who has this, or similar, and can offer advise and share information.
My history:
It started last August 2017, I had back pain after working on our new house, clearing heavy rubble sacks left by a plasterer, and was initially wrongly diagnosed as having muscular pain. After a few weeks of GP appointments, physio and an ER visit with acute pain and further pain down my thigh, and using crutches to walk, I was eventually sent for an MRI, which highlighted a fractured vertebrae.
I was given a referral to the Spinal unit clinic at hospital (amazing staff). At my first clinic appointment I was given an Xray and shown on screen what the fracture looked like. It was a shock at first, I was expecting a few cracks, but my L3 vertebrae was crushed to a quarter of it’s original size.
They told me, given the circumstances of how the break happened, this shouldn’t happen to someone of my age (51 at that time) with no history of any bone problems. In November I was taken into hospital as an inpatient, had bloods taken and a CT scan. They then told me I had a protein marker in my blood that could indicate potential cancer called Plasmacytoma/Myloma, and the CT scan showed in more detail that my crushed vertebrae was hollow and bone fragments had broken off, effecting a nearby nerve (which was giving me the leg pain).
They needed to do more tests and scans to confirm their findings. This involved; further bloods taken, a full body Xray, CT PET scan, bone density scan and a CT guided biopsy procedure on the L3 vertebrae of my spine to take a sample of both bone and bone marrow. I met the Spinal consultant, who showed me on screen how they could stabilise the spinal fracture with titanium screws and rods, or possibly the addition of a cage, depending on my test results. During this time the hospital also sorted out regulated medication pain relief for me and I was then discharged from hospital to wait for the test results.
In December I got a letter to go for a pre-op appointment and another letter for a follow-up appointment at the Spinal clinic a couple of days later. I had the pre-ops and then went to the clinic appointment and they told me it was confirmed that I was diagnosed with Plasmacytoma/Myloma in my spine and I was to be admitted as an inpatient and would have the stabilisation operation on 15th December.
I was admitted and told that the operation I was having would involve the stabilisation of my vertebrae to prevent any further collapse. This was to have screws into the three vertebrae above and two below the L3 with rods between, and fusing the vertebrae together. They would also perform a bone graft into the crushed vertebrae to hopefully strengthen it further when the bone calsified and grew around the inserted bone. I also would have a further marrow and bone biopsy, this time on my pelvis, to check if there was any spread of the Myloma cells. They could then confirm if it was multiple Myloma or a Solitary Bone Plasmacytoma.
I had the pelvis biopsy under local anethetic the day before my spinal surgery, had the surgery and spent the next few days on patient controlled morphine to help with the pain, and worked with the Physio therapists to get me up and walking on crutches again in the hope of getting home in time for Christmas.
There was a lot of post-up pain and discomfort, but I worked through it and was able to go home by ambulance on the 21st December. I had follow-up home visits from district nurses to check on the dressings over Christmas period and later had the staples removed from the incision wound. I‘ll also be starting outpatient Physio soon to get more movement in my back.
During January, so far, I’ve had follow-up appointments at the Spinal clinic (3rd Jan) to check on my operation recovery, it is healing well and they are happy with my progress so far. I’ve also seen the Haematology consultant (10th Jan) who confirmed that results for my pelvic biopsy showed no definite spread of Myloma and that I have a Solitary Bone Plasmacytoma that will be treated with Radiotherapy.
Yesterday (19th Jan) I had an appointment with the Radiotherapy consultant and was told I will start a 4-week course of Radiotherapy on 30th January.
From reading current info I know there is a 70% chance of Plasmacytoma developing into Multiple Myloma at a later stage, but I’m trying to stay positive by the 30% chance that it doesn’t! and new developments are happening all the time in cancer research.
I’ve tried to put any info about my experiences as clearly as possible. If anybody would like to ask me any questions about the procedures I’ve had so far, I’ll be happy to share any info on how it was for me, and what was involved.
Thanks for reading
Hi Karl
I was like you in 2011 had bad back and it showed spinal collapse at L5 and had kyphoplasty and spinal fusion L4-S1 followed by 5 weeks radiotherapy. Then watch and wait 3/12 till Dec 2014 when it tested its ugly head. My PP had started at 8 and grad went up over time. I then had 4 months chemo followed by SCT June 2015 I have since been in remission. Long may it last. If you have any questions just ask. I had hoped it wouldn’t progress but alas it did.
I hope you are getting on alright.
Liz
Hi Karl
Like you I have a solitary plasma cytoma although mine is in my humerus resulting in limited movement in my right arm.
It started with an achy arm/shoulder in Dec 2016 and on suspecting a frozen shoulder, my gp referred me for Physio.
Physio started in April by which time the movement and strength was getting worse. I managed a couple of sessions and then a day after the last one, ended up in A&E after shrugging my shoulders left me in agony, feeling like something had torn in my arm – bone disintegrating.
This was May 7th 2017 and like you, I had many scans to find the cause. I went to Birmingham orthopaedic hospital in July for a bone biopsy which confirmed the plasma cytoma ( originally they thought it was osteosarcoma).
More scans including PET (mine is in the 5% that doesn’t show up on this scan). Bone marrow biopsy in August and then much discussion about whether to fix the bone or commence radiotherapy first. There was talk of a pin in my arm or worst case shoulder replacement.
Birmingham decided on radiotherapy and then review the need for surgery after 6 months to give the bone chance to regenerate.
I had 25 radiotherapy sessions in Leeds in November. I started feeling tired after 2 weeks but I was using patient transport to get to the hospital and some days the whole thing could take 4 hours, even though the treatment took 10 minutes so I think this added to the fatigue. The only other side effect was that the skin under my arm became sore and broken about a week before the treatment finished. This reached its peak about 2 weeks after treatment and then took another couple of weeks to get better.
I was told that treatment continued working for 6-8 weeks after you finish so my follow up scan would be 3 months after. It is booked for 28 Feb.
Like you, I am at high risk of developing myeloma and because of this I was given information about the IDRIS trial – you can find this on the cancer research web site. It is a randomised trial where you have a bone marrow biopsy following your radiotherapy and then start the meds (if selected) no more than 8 weeks after your radiotherapy ends. The results of the bone marrow biopsy determine whether you are put forward for the medication (this is the random selection part). The aim of the medication is to stop or delay progression to myeloma. The medication, dexamethsone and lenalidomide is already used to treat myeloma.
I was selected for medication and started on 10 Jan – I’ve just started the second cycle. The meds last for 9 months and then there is ongoing monitoring as part of the trial. I am having a few side effects, tiredness, loss of taste but it’s manageable. For me, I would rather take the meds rather than watch and wait. My trial team is based at St. James in Leeds but there are several sites. It might be worth discussing with your doctor if you are interested as things have to happen fairly quickly after the end of your radiotherapy.
Hope you are coping well with the radiotherapy. Best wishes.
Sam
Hi Sam,
Thanks for contacting me. Your experience sounds very similar to mine. I appreciate the information about the IDRIS trial, I’m definitely going to look into it and also speak to my doctor about whether I would be eligible.
The Radiotherapy is going ok thanks, I get some fatigue, as I’m also doing physiotherapy to get strength and movement to return in my back after the surgery, but apart from that I’m ok.
Hope all goes well with your follow-up on Feb 28th.
Kind regards
Karl
Hi Karl,
I’m glad that you are going to look into the trial, I’m number 6 so there aren’t many people on it so far but I think we are quite rare.
I’ve been reading the posts on this site for a few months but hadn’t even registered my details before I read your message. I felt I had to reply as you are the only person I have come across who has been through such a similar journey to me, at the same time and we are not far apart in age.
Its early days for both of us and I know that you must have been in shock at the diagnosis like me but your positivity shone through in your message and made me feel hopeful on a day when I was feeling a bit overwhelmed. I don’t feel like that all the time but sometimes I find it difficult to get my head around the ‘unknowns’ and my mind runs away with me.
It would be good to hear how you get on and if you decide to go ahead/ are eligible for the trial.
Regards
Sam
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