Merkel Cell Carcinoma

Hi Jeff51 and a very warm welcome to the online community

I'm sorry to hear that you've just been diagnosed with Merkel cell carcinoma.

I was diagnosed with malignant melanoma 4 years ago so, although I don't have the same type of skin cancer as you, I do understand how devastating the news you'll have received is. 

I've had a look through the previous posts in this group and found that the most recent person to post about it was . I have tagged them into my reply to you in the hope that they are still in the group and that they might be able to pop in and tell you about their experiences.

If you don't get any responses from anyone in the group it might be worth your while to also join the neuroendocrine tumours group as MCC is also called a neuroendocrine tumour (NET) of the skin.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hello Jeff51. Sorry I've been a bit slow catching up with your post.  I hope the immunotherapy is going well for you.  I'm a Merkel Cell survivor (12+ years), and you can check out my story if you read my profile.  Any questions... I'll help if I can.  Good luck!

Hello and many thanks for your note.

Your experiences are really encouraging and your optimism is quite inspirational.

Although I've been quite well during immunotherapy treatment and scan results have been good it is  difficult to know how far forward to look and what the future holds for me and family members.

I think the latest treatments are all fairly new and the illness so rare that there is little case history out there. But you've given me a lift today while I'm having my latest round of treatment.

Thanks again, keep up the good work and very best if luck for your own condition 

Hi Jeff, wishing you well. I am newly diagnosed with Merkel that has spread into my lymph nodes in various places and salivary glands. The doctor is recommending immunotherapy (keytruda)so I'd appreciate an update from you on your experience with immunotherapy treatment. Which immunotherapy are you being treated with? Wishing you well

Hi Stop Plastic Pollution

Keytruda, or pembrolizumab as it's also known, is used extensively for melanoma patients whose skin cancer has spread to lymph nodes, etc, with a lot of success. I've provided a link here to the posts in that group discussing it. You can look through them to see what, if any, side effects people are experiencing.

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Hi Latchbrook, you are a true blessing to this community. Laser focused answers providing compassionate, excellent advice every time. Thank you for all you are doing for us. 

That's a lovely thing to say Stop Plastic Pollution. Thank you very much, it means a lot.

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Hello,

Sorry to hear about your diagnosis. There seem to be more of us as time goes by!

My immunotherapy was Avelumab (Bavencio) which I had from about April this year until October. i had been told that this offered long term relief in about 1/3 of cases. I was quite well during treatment but in October I was told that the drug had stopped being effective, the cancer had returned and had spread. So I am now in another (different) course of chemotherapy - disappointing but there's always hope while the treatment continues.

What I would say is that treatments are getting better all the time, as shown by the number of patients who contribute to this forum, and its important to stay positive. There are some inspirational people here who show that survival for years rather than months is very possible.

My latest diagnosis was a setback, but so many people have been supportive and encouraging and I'm determined to stay around and annoy everyone for a long time yet.