Good morning
Iam new to the forum and wanted to say Hi
iIam desperate need of some help & support please
I will give a little background & try my best not to overload this post with everything that has happened to me over the past 18 months to this now recent awful diagnosis of Adenocarcinoma
Age 61 recently retired from social care wanted to just live a peaceful quiet humble life .
Apart from this recent diagnosis .I also have Crohn’s disease which was well under control with immune suppressant biological infusions of inflixamab 8 weekly since 2015 but started having issues with it , full body coverage of psoriasis and in particular excruciating pain in shoulder and neck area . GP reffered me to orthopaedics , orthopaedics couldn’t find anything that “ he said “ would cause the pain Iam describing so I was just really attending my appointments for nearly two years for no results, I had all the usual scans injections into shoulder
I was so desperate the pain was unbearable hardly slept properly
One day I noticed a large swelling exactly In the place all the pain had been coming from , I was sent for scans, biopsy then on to ENT where then I was diagnosed, explained all the nerve pain I had been having because this lump is pressing on nerves bone etc , and that pain was/is awful !
Sent to oncologists and the plan now is radiotherapy-to the neck shoulder areas waiting on my appointments , apparently it’s not the primary source but the secondary and the primary cannot be found on PET scans , this is what is making me feel really upset to the point I can’t stop crying , and also that it might not be cured just managed , I am crying typing this like others I guess i love life so much, I have one daughter who has been amazing help and support.
inflixamab does carry warnings that these side effects can cause lymphoma ( i don’t have that ) but unfortunately never read that and even if I had I wound probably have thought it’s very very rare.
I came of that drug instantly just incase
Does anybody have any experience of this type of cancer who can maybe share with me what there story is ?
i have an appointment for a CT of my head next wk
Iam usually a very positive person but this has really blown me over
Thank you
