Hi all
In 2019 I was diagnosed with Sinonasal SMARCB-1 Deficient Carcinoma. I was treated at the Churchill clinic in Oxford. I had TPF chemotherapy (that didn’t work), followed by an operation (I lost my eye) and 6 weeks of radiotherapy.
I’ve had regular scans on my head and all has been well, until this year; when a lump grew in my chest (thymus). It was removed and the margins were good, I was due to start radiotherapy, but have since found out it has spread to my lung. It is the same cancer as in 2019.
I have had a PDL-1 test which came back as negative, which I know rules out a lot of new immunotherapy treatment. I felt like all hope pinned on this test.
My Oncologist has spoken to some Oncologists in the US that I contacted and they have recommended a chemotherapy of Carboplatin/Etoposide.
I am seeing Professor Harrington next week at the Royal Marsden in London regarding clinical trials.
I have 2 children, age 4 and 11, my youngest is autistic I am desperately searching for options.
I am so frightened and just want to do all I can for myself, my children and my husband.
does anyone have any similar experiences? I have a very rare cancer xxx
Hi Sarah.
I faced a cancer diagnosis in my retirement and I can imagine it's so so much worse when you have a young family
I don't recall anybody else on here with that cancer but I'd like to extend a welcome to you any way
There are some of us here who have had carboplatin when they have been unable to have cisplatin but I can't recall a post on etoposide.
You might jog somebody here who might have never posted but nevertheless might be able to help
Macmillan have a group to discuss chemotherapy so you might find some help there
All the very best
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Sarah, so sorry that you have to go through all of this, i was 48 when i first had cancer but it returned twice more but all in the head and neck so i know how frightening it is for you when it returns, we are all hoping and praying that your meeting with Professor Harrington comes back with some options for you to try, i truly wish you good luck, take care, love and hugs to you and your family.
Chris xx
Its sometimes not easy but its worth it !
