Hi, my husband was diagnosed 3 years ago and up until now I have coped pretty well but totally came unglued last week when his latest bloods showed paraprotein level back up to 10. so decided I needed some support from those going through the same roller coaster ride
Apologies in advance if this turns into a long post.
4 and a half years ago having had neck and shoulder pain for several weeks he was sent for an xray that revealed a broken neck. Obviously very shocked as although in pain he had been functioning normally. This was fixed using bone from hip and tested for bone cancer – negative. 5 months off work but then back to normal. No further follow up.
9 months later more pains so referred back to hospital. Transfered to different hospital as MRI showed extensive bone damage in neck involving 3 vertebrae and a large tumour pressing on spinal cord. Diagnosis finally made.
2 major ops followed to remove tumour and stabilise neck. Then 6 months CTD followed by SCT in July 2011 Made a superb recovery from this and back in work in January 2012. just taking time off for monthly zometa.
November 2012 osteonecrosis of the jaw diagnosed caused by the zometa. Zometa stopped and surgery on 1 side of jaw in Feb, but due to multiple mouth infections and delayed healing the other side was only done last week following a month of hyperbaric treatment.
In June he started having neck and shoulder pain again and was referred back to surgeon. Xray and MRI results 2 weeks ago have shown no evidence of further tumour/bone damage and diagnosed as wear & tear to soft tissues. Before deciding to start any treatment surgeon wanted to liaise with haematology.
Also 2 weeks ago he had his 2 year post transplant review where we found out that his May bloods showed paraprotein level at 6 (it was 2 in Feb-stable at 2 since transplant) Then last week found out it is now 10. Will find out this week what treatment is proposed. Options will be more limited due to the OCJ
We are both very positive people but this was 1 thing too much for me. Other numerous family issues over the course of the last few years as well.
My husband is a very determined man who despite all that has happened has held down a senior management highly stressful job throughout it all. No one expected him back after the transplant, although he has finally decided to call it a day. He has kept work informed throughout and his boss already knows he wants out but at the moment just staying on the sick since June.
If you have got this far then thank you for taking the time to read. Not looking for sympathy but to help me cope with caring for someone with this horrible disease.
