After 3 years of going back and forth to my Gp then finally going on dermatology waiting list 7 months then another 6 months of biopsies and living in limbo.
i was diagnosed with the extremely rare Cutaneous B cell Lymphoma .
i had 6 steroid injections Wednesday into my scalp and face and in failing the sucess of that will go for radiotherapy.
I feel relieved to finally know what all these lumps are but also worried as this is a life long condition which although is not curable they can do a lot it seems to manage it and monitor it .
I have a new tumour which I’ll need to have another biopsie on next week . But other than feeling fatigued incredibly itchy and fiery hot skin feel well .
How do others cope with this . I understand my type is uber rare something like 3or 4 people in a million .
But hoping someone else I can relate to.
Hi again Pjpumpkin and it's good to see you have finally had your diagnosis. Cutaneous B cell Lymphoma is one of the many different types of Skin Lymphomas........ and is much the same as my 8 in a Million Cutaneous T-Cell Lymphoma that I was first diagnosed with back in May 1999...... but my Dermatologist said that I most likely had been living with it for a number of years.
i had 6 steroid injections Wednesday into my scalp and face and in failing the sucess of that will go for radiotherapy
I had Interferon alfa (a) (Immunotherapy) weekly injections subcutaneously under all my tumorous areas for a number of years with some success but eventually had some Radiotherapy and that was very effective on my tennis ball sized tumour above my right eye.
I feel relieved to finally know what all these lumps are but also worried as this is a life long condition which although is not curable they can do a lot it seems to manage it and monitor it .
In way of some encouragement…… diagnosed in 1999 age 44 with one my Cutaneous T-Cell Lymphoma when our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years....... then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell -NOS (Not Otherwise Specified) NHL came along taking me to stage 4...
But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family we celebrated 9+ years since my last treatment. I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Like my Cutaneous T-Cell Lymphoma..... there are a number of different types of Cutaneous B-Cell Lymphoma......... have you been told this - if not you need to try and find out this information.
Always around to help out.
Hi Pjpumpkin so if you look through my story we live in Inverness but I did have my two Allo (donour) Stem Cell Transplants at the Beatson (June 2014 then Oct 2015) so you are in safe hands.
The main reason I had to have Stem Cell Transplants was due to me having 2 types of rare Lymphomas at the same time..... my CTCL and my very aggressive PTCL.
At the Beatson I was being seen by the Dermatology team as well as the Radiotherapy teams and my Stem Cell Transplant Team
All this links I have put up are links taken from the Lymphoma Action website.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment...... and there is a good chance you may see some information, articles, podcast with me on them.
Yes my story is rather complicated See my story ....... but all these years later I am still living a great life and even today we have been doing the finishing touches for our 2 week holiday in Malta and few weeks.
Always around to help out.
