Hi everyone, long time no post lol.
As some of you know i had three infusions of Pembro last year that did shrink my Lung tumour and got rid of the cancer in my lymph nodes but caused havoc in the rest of my body so had to be stopped.
It gave me an over active then under active thyroid for which i will always be on medication for, it also gave me severe Imunnotherapy induced Colitis which had me in and out of hospital from last September to March this year with uncontrolable diareah. I had two infusions of Infliximab which the gastro team had been trying out on patient with Chrons disease and this has worked and stopped the runs. I cant have any more imunotherapy treatments as my body is too sensitive to it.
I recently had a scan that shows my tumour is growing again and after speaking with my Oncologist who said she has only Docetaxel to offer me at the moment which i don't want and won't be having, she then said she will send me for a PET scan and if the cancer is not visible in my Lymph nodes she will arrange some radiotherapy or Spot welding as she called it.
There was some confusion as to how much it has grown as she said the radiology report didn't make sense and contradicted itself so she would be asking for a re- report on my scan !!
She also said she would arrange for a biopsy for the Matrix trial as the last test didn't have a large enough sample.
Its my five year diagnosis anniversary this month and i have just been getting on with life and making lovely memories with family and friends. Now though all the doubts and fears are back, how long have i got left ? how quick is it likely to grow ? Will i be well enough for my holiday in Scotland and my 60th birthday later this year ?
I have also started with severe lower back pain that they can't find a reason for and they have put me on Oxycodone six times a day which really helps.
I have to go back in 3 months unless the Pet scan shows i can have the radio in which case she will send for me. I have asked her to see if i am eligable for any other trials as well.
I hate been in limbo with no treatment options apart from one i don't want and all the unanswered questions floating round in my head.
Most of you are in a similar position so i know you understand and i thank you all for listening. Lynn 2.
Hi Lynn
i completely understand the frustration I’m stage 4 Mantle Cell lymphoma was diagnosed in March still no clear treatment plan in place. Seeing a specialist in Toronto Canada July 15th hopefully get 
plan in place. I’m sorry you’re sitting in the unknown. Take care hopefully you will have a plan of action soon. ️
