[exonianParticipant]

My husband has been under the care of the Myeloma specialists at the Bristol Royal Infirmary’s Haemotology and Oncology centre for last 10 years. First for treatment for an isolated plasmacytoma which broke the C2 bone in his neck ( brilliantly repaired by the neurosurgeon at Southmead Hospital where he was an inpatient for over 2 months with transport to the BRI for radiotherapy ) He was then diagnosed with MGUS and monitored at BRI centre at least 4 times a year including regular scans until it progressed to multiple myeloma in March. The Consultants are excellent and are supported by specialist myeloma nurses. We have got to know them really well. Being a large teaching hospital it also has access to MRI and PET scans. Cant recommend it highly enough.

[exonianParticipant]

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.

[exonianParticipant]

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.

[exonianParticipant]

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.

[exonianParticipant]

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.

[exonianParticipant]

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.

[exonianParticipant]

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.

[exonianParticipant]

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.

[Author]

Posts