Hello to you all.
Has anyone been diagnosed with a lower skull base Plasmacytoma ?
I’m 53 and was diagnosed with one in May last year after coincidentally hurting my neck very badly (which still isn’t right). I had 25 round of Radiotheraphy which finished October last year. Unfortunately the treatment didn’t work as well as they’d hoped and the tumour is still there and active. I’m now on watch and wait scans/bloods every 3mths.
A year on from treatment and I still feel awful most days. I haven’t been able to return to work and now they’re putting the pressure on (I have a meeting with them next week). I have terrible side effects so I’m seeing a Neurologist next week. Also having lower back pain, so I’ve recently had MRI which do show some changes which they think may be associated to Osteoporosis so I had a Dexa scan to check my bone density. My bloods look good, but to be fair they’ve always been good, even upon diagnosis. I’m just at a loss with it all now. I get head/neck pain every day as well as other side effects and am so fed up.
Can anyone relate ?
Many thanks for reading this x
Hi Kat88 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey you are on.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (Stage 4) so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well but not the specific treatment you are on.
I had 45 sessions of radiotherapy mostly to other areas of the body but I had 10 zaps to all my lymph nodes in my neck..... but I had no real problems with this. My main mass was in my neck (See my story) and i am left with long term nerve damage but on the whole I can deal with this. I have lived with Spinal Osteoarthritis for 12 years but bizarly this has improved following my two Stem Cell Transplants!!!!
Let's look for some of the group members to pick up on your post. There actually have been a few new members join recently so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts.
Have a look at them and as always you can hit reply to any post and see if the member is still using the community.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332
Always around to help more or just to chat ((hugs))
Thank you very much 
