Within the last few weeks I have been diagnosed with Myeloma. It has manifested itself in Pathological Fractures to the Humerus’so.
I have had every conceivable Scan Blood Test.
My Haemotologist is starting me on a course of Chemotherapy on Tuesday, so 4 weeks since initial diagnosis.
This best fix to get things moving is repair of the Fractures. Orthopaedics seem to be dragging their heels and are constantly in meetings without making a decision when the corrective surgery can take place.
Has anyone had anything similar or have knowledge of the Royal National Orthopaedic Hospital in Stanmore.
Any information no matter how small will be gratefully received.
Sorry to hear that you have been diagnosed with myeloma and are having bone problems which seems to be quite a common complication with myeloma.
I would certainly recommend speaking to one of the nurses on the Helpline. They are very knowledgeable and friendly and it is their job to help patients and carers affected by myeloma. I would also suggest contacting one of the local support groups if there is one in your area. It is always good to speak to someone else with first hand experience and who may be being treated at the same clinic as yourself.
Similar kind of issue with my other half, collapsed vertebrae – took a few weeks to be seen at the RNOH was put in a body cast brace for 3 months (as there was some bone growth which was just about pinning the vertebrae up) , after 3 months told that one third of the bone had healed but he would have a back as strong as that of a very elderly woman and it was left at that. The UCLH said that no surgery was done as there was a risk of the plastic cement going into his spinal canal – this was not mentioned at the RNOH they just said there is nothing more we can do. Still in constant pain and got very bad when harvesting the stem cells that he had to have an MRI to see if any damage was done. Someone from the RNOH is at the UCLH once every 2 weeks to assess patience scans, my other half’s scan was looked at and we have another appointment now next Monday 4 months after being told that there was nothing more that could be done. We don’t even know why the RNOH want to see him again.
Its not much help but for most people suffering from MM nothing is ever simple and its a lot of up’s and down’s just know that people do jump very quickly if they think something serious is about to happen , but until then its always a case of take your ticket and wait your turn. But there is a lot of support out there and people are very friendly here and happy help answer your questions.