Hello,
My diagnosis is Merkyl cell carcinoma but doctors can't find the primary tumor. It showed up invading lymph nodes in my neck. It has moved into my salivary glands and both armpits. There is another lump on my right carotid artery. Other than the psychological mind spin of having an incurable, deadly cancer, I feel fine.
The doctor wants to throw some keytruda at it, but reading the clinical trial, their definition if success seems to be 20% of the participants had their cancer stop or tumors shrink over the 2 year study. No cures, 80% failure with 100% adverse side effects with the 20% pretty much right back where they started before the study.... I decided I feel great and live each day with love and purpose until I can't.
Hi Stop Plastic Pollution and welcome to the Online Community although so sorry to hear about your diagnosis, being told you have live with an incurable cancer is a mindset.... I have been on my incurable journey for over 22 years so I do understand...... but I do hope you will find lots of comfort and support here on the Online Community.
The New to Community area is like our reception where we can signpost our many dedicated support groups and services and see you have joined our Lymph nodes, secondary cancer group and you may find our Living with incurable cancer - incurable patients only group helpful as these are safe places to talk to other people who may have a similar diagnosis or experiences.
If you'd like to connect in with a group, you need to join the group. First click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Start a Discussion in New here, say hello’ and you are ready to go.
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via web chat. This service provides cancer information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area.
Always around if you need further help in navigating the community.
All the very best.
Hi Stop Plastic Pollution and a second welcome to the online community
In addition to the groups that my friend Mike Thehiglander has recommended could I also suggest that you join us over in the skin cancer group where you'll find a few people who have this type of skin cancer. That's assuming that the Merkyl cell carcinoma you mention is also known as merkel cell carcinoma.
If you'd like to join the skin cancer group clicking on the link I've created will take you straight there where you can then follow Mike's instructions on how to join, post and reply.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
