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Hi, I was diagnosed with a plasmacytoma after fracturing a vertebral, a bone marrow biopsy showed plasma cells of 8-10 % and my paraprotein level was 13. So I think I am relatively early in finding out, I am now waiting for a treatment plan. This cane completely out of the blue , I only went to my GP with what I thought was a trapped nerve from coughing. I am 55 with my youngest children being 10 and 13. Really worried about treatments and how it will affect family life. Any replies will be greatly appreciated as feel really out of my depth at the moment.
Hi Myelomamum,
Yes, it does sound as though you have been diagnosed early.
I was also diagnosed at 55 (in 2022), although my ‘kids’ are grown up.
You can read plenty of posts here on Myeloma UK outlining what your treatment plan is likely to look like. Quick summary: a mix of 3 or 4 chemo drugs for a few months, probably a stem cell transplant, then back on the chemo for a couple of months.
It can be a traumatic diagnosis to get. Personally, it took me a couple of months to get myself together and get on with my life.
Do you have friends and family around you? If so, they can be invaluable, whether it’s the school run while you have a hospital appointment, the odd household chore (there may be times when you are fatigued and need a hand), and of course there is the support, such as a shoulder to cry on, that you may need.
On the last of these in particular, Macmillan has helplines and meeting groups that can really help. You could look at their website more generally for help that they can provide.
I can’t pretend that it will be easy, but you can do this. Many of us have had myeloma for decades. Treatments are far better than they used to be (don’t start panicking if you come across some pretty depressing old webpages – things have hugely improved) and we are getting on with our lives.
All the best and please feel free to ask us any questions.
Regards
Rabbit
In 2014,out of the blue, my husbands neck suddenly fractured at the C4 vertebrae, one of the most dangerous breaks you can have and he was extremely lucky it didn’t kill or paralyse him.He ended up in intensive care while they did tests to see what had caused the break.It turned out to be a plasmacytoma. His neck was fixed by a wonderful surgeon at Southmead hospital and then he had 5 weeks of targeted radiotherapy to destroy the myloma cells. As you will learn plasmacytoma is not the quite the same as multiple myeloma as it is isolated and therefore can be treated with radiotherapy. He did not have any chemotherapy. He then started on 3 monthly blood checks of his paraproteins which, after his treatment, were undetectable. Over the last 10 years paraproteins very gradually reappeared and he was diagnosed with MGUS. They would remain stable for 2 or 3 years then creep up again. He didn’t need any treatment and was under what they called a watchful waiting regime. After 10 years his paraproteins suddenly increased and in March he was eventually diagnosed with MM and immediately put on a 6 month induction regime of the latest combination of drugs, and is now on a maintenance regime with one hospital visit a month plus home medication. He has had very few mild side effects and we have even been on holiday.
Plasmacytoma can be dealt but you will then be monitored for life in case you do,as my husband has, eventually develop MM. however if that happens you will receive very early treatment and there are certainly much better and effective drug options now that 10 years ago.
thank you for your replies , i found out today i am to have a full body MRI scan and some more blood tests. This is to see if myeloma is active anywhere else , if it isn’t i believe i will be monitored regularly. For the plasmacytoma i am expecting an oncologist appointment and then a radiotherapy treatment plan. Do i need to do anything health or diet wise ? Just wondering if anything helps. Xx
The advice is to follow a normal healthy diet. Radiotherapy for a plasmacytoma is usually 20 or 25 sessions over 4 or 5 weeks. My husband had 25, Mon to Frid for 5 weeks. Any side effects will depend on where you have it. There is a very good leaflet on it on this site. Once it is over,
the monitoring will just be blood tests at regular intervals, with an occasional scan to check for any legions. You will get used to it after a while and forget about it between appointments. Just stay positive, it won’t be as bad as you imagine.
Wow everyday for 5 weeks sounds really gruelling. Once I have the full body mri I expect they will then decide a course of treatment , I just want it to start. Since my fracture in July I have no checks to see how it is healing , whether the plasmacytoma is growing and could cause nerve damage ? It has been a nightmare 3 months being passed from one department to another and still no real diagnosis. Let’s hope the next 2 weeks I finally start some treatment.
The actual daily radiotherapy appointment isn’t very long, and the treatmemt is only a few minutes but they have to set you up etc and it obviously depends how far from the hospital you live. You will have 5 treatments then 2 days off (usually the weekends). Hopefully your treatment will only be 4 weeks and then it’s all finished. When you go into the regular monitoring regime if anything does crop up it will be dealt with immediately. You didn’t say whereabouts you are in the country. We are in Bristol and the Haematology/ oncology department at the Bristol Royal Infirmary is brilliant.Hope you get some answers this week so you can get on with your treatment and your life.
I live in Wrexham , North Wales but i believe any radiotherapy treatment is done in Glan Clwyd Hospital which is a 40 minute each way drive for me. I am currently working full time but work have already said they will support all my appointments.On diagnosis of the plasmacytoma did your husband also have marrow bone biopsy and what was his paraprotein levels ? Mine were 13. Because my bonemarrow showed 8-10% plasma cells this is causing the Consultant to review me again as wants to be sure myeloma is active or not.
My husband neck suddenly fractured at C2 (he had had a bit of pain but thought it was just a stiff neck) when it did, he was taken into the BRI in terrible pain and then,because the fracture had caused his throat to swell, he had to be ventilated and then transferred to Southmead ICU to have a tracheostomy and be put under the neurosurgical dept so they could stabilised his neck so he didn’t have any immediate tests. He eventually had a bone marrow biopsy which was done at the same time as the operation to fit titanium rods in his neck. He had 6% plasma I don’t know what his paraproteins were.He had 45Gy of radiotherapy in 25 fractions.He was in hospital for all his radiotherapy although he had to be transferred from Southmead in north Bristol across to the BRI everyday by ambulance accompanied by a nurse as he still had a tracheostomy and a nasal gastric tube.At least he didn’t have the stress of all the travel. After his treatment his paraproteins were undetectable he was diagnosed with light chain MGUS. His paraproteins were undetectable for a couple of years. then hovered around the 3mark for about 4 years and the crept up to 12 for a while. All that time he had no treatment. He had a PET ct scan about every 2.5 years just to check for lyptic lesions. It wasn’t til over 10 years after his treatment his paraprotiens suddenly started to shoot up and he had a further biopsy in March was diagnosis with MM and started treatment in April. however just because you’ve had a plasmacytoma it does t mean you will get MM.
It seems your husband was very lucky. I have had a phone call today for an appointment tomorrow to meet my oncologist and to get a radiotherapy treatment plan which had brought great relief. My plasma cells are 8-10% so a little higher than your husband and my paraprotein was 13 so also higher. my haematologist thinks i am either smouldering MM or it is active. More bloods on Thursday and mri next week are planned.
At least things are moving on..the worst bit of all is the waiting for a treatment plan.Are you able to take someone with you to your appointment. I think this is really important as they can pick up on the things that you might miss or forget. There is always a lot to take in. Good luck for tomorrow. Do post how you get on.
My husband is coming with me , its seems as if its taken ages as it was July when I had my fracture. Does your husband still get pain in his fracture area.. I do.. even though they seem to think its healed.
No he doesn’t get any pain, that stopped as soon as they immobilised his neck. Hopefully your scan will show what’s happened to your vertebrae.Glad your husband is going with you.
Today I was told am will be have 1 A grade radiotherapy blast next Wednesday , he said 1 is enough. In the afternoon I am seeing the haematologist consultant to discuss blood results and the possibility of starting chemotherapy.Not the news I wanted as was hoping not to start chemo just yet and see how the MM progressed but I know whatever is suggested is for my best interests.
Yes you have to leave it to the experts. At least you don’t have to go back and forth to the hospital for radiotherapy. My husband started chemotherapy in March and it’s absolutely nothing like I imagined chemo… no being linked up to a drip. He isn’t having a stem cell transplant,so he is on the very latest 3 drug combination called DRD.It was only approved last Sept. One drug is given as a subcutaneous injection at the hospital,the actual injection only takes about 10mins ( He now has his monthly) and the other two drugs are taken at home along with some other medications. The only side effect he had was a rash and you certainly don’t loose your hair. They even paused the treatment so we could go on holiday with our children and grandchildren. As the consultant told us MM isn’t curable but it’s certainly treatable and there are new treatments coming on line all the time. M is a very personal disease so I’m sure your consultant will be able to find the treatment regime that will suit you.
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