Radiation. Therapy and Merkel Cell Carcinoma

Hi Tuneturkey and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

That's great to read that your tumours are shrinking. I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier for other group members to see.

I've done a group search to see if there are any members who have posted about MCC and found that  and  posted a couple of years ago. Tagging them into my reply means that they'll get a notification and will hopefully pop on and share their experiences with you.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.

Please note that I have updated my profile per your tecommendstions.

Hi Tuneturkey 

Thanks for updating your profile and I hope everything continues in the right direction for you.

Hi My husband has been diagnosed with MCC he is 81 years old and generally in goid health Alto he has had bladder cancer successfully treated and currently has a treatable but not curable patch of cancer in his ureter He has his pet scan last Thursday and we are seeing the consultant to discuss the results on Monday Your post and profile are extremely interesting Thank you for sharing I will post again after we have seen the consultant 

Best wishes 

Wilbert 

ps seems crazy to say husband is in generally good health To clarify he is asymptotic enjoys life we both keep ourselves fit love to eat out and holiday He has recently changed a bedroom light fitting planted 75 sweetpeas and made the frame for them to climb up and replaced the faulty washing machine door x

Had meeting with consultant no spread to major organs but slight something in lymph nodes showing Because my husband has a blocked artery in his heart (some 20 years standing and doesn't affect him in anyway)he is going to.do a needle biopsy to confirm if it is or isn't cancer He is arranging an appointment with a consultant anaesthetist for my husband to get his opinion on a general anaesthetic for lym0 removal If it isn't cancer in the nodes he will remove tumour under a local anaesthetic If it is and anaesthetist says OK He will remove nodes and tumour at the same time.under a general anaesthetic If anesthetist says no tumour removal under a local followed by a course of radiotherapywhich he says is extremely effective treatment So we live to fight another day I  must admit I was terrified consultant was going to.say my husband was "riddled " with cancer A stupid term that seems prevalent when cancer is discussed in the press Thst dealt with at Christie Manchester on to the Alexandra at Cheadle to sort out removal of temp stent and cystoscopy on Monday Then a very late lunch with a nice bottle of red wine xx

That sounds good news overall Wilbert and celebrating with a good bottle of red wine with lunch sounds perfect

I was diagnosed with MCC in July of 2023. It was developed on my left lower back. I had surgery to remove it and chose radiation treatment instead of chemotherapy. I had 27 treatments to my left front and 30 treatments to my left lower back. I mostly didn't experience fatigue until after the completion of radiation therapy. I have been taking immunotherapy since March of 2024. I have been getting pembrolizumab (KEYTRUDA) 200 mg every 3 weeks. The first CT scan after 3 treatments showed improvements. After the next 3 treatments, showed digressing results. 

Now, for the important part, I learned about Metabolic Therapy from watching YouTube videos with Thomas Seyfried. He is a biochemist and biology professor at Boston College. I didn't begin learning this information until I was over halfway through my radiation treatments or I would have chosen a different path. I am not a physician and cannot offer you medical advice. What I have learned is too much to put into this posting. I recommend searching for his name on Google and YouTube and watching his most recent videos. The first part of the therapy involves the ketogenic diet and possibly longer term fasting. It is difficult to explain to oncologist the importance of nutritional fasting, since they have not had any training with it. So, I took their advice and didn't eat like I did during the first treatments to prove the dietary changes made the positive results. I was expecting the increased sizes of the lymph nodes, after my second CT scan. Now, I am back on the ketogenic diet and fasting for days at a time. My next CT scan is on september 16th. I am looking forward to the positive results, so they can look into adding Metabolic Therapy to a part of their plan for treatment of MCC. Please search for Thomas Seyfried and learn all you can.

good luck on your Sept 16th scans!  all the best