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
