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DiscussionMerkel Cell Carcinoma: I'd like to hear from others
Neuroendocrine Tumors (NETs) | Last Active: Oct 20 7:30pm | Replies (133)Comment receiving replies
Replies to "I am a caretaker for my partner that has been diagnosed with MCC last month. Currently..."
Hi there! I certainly understand how frightening and daunting this can be for you both. I was diagnosed with MCC in April, 2022. Squamous and MCC on my neck; started as what looked like a mole. Never did go to my lymph nodes, but after surgery and 6 weeks of radiation, I had metas to my liver, right illiac (upper pelvic bone), and vertebrae. I had extensive genetic blood work that suggested immunotherapy would work for me. I highly recommend Keytruda!! My bloodwork has been great, I've progressed to getting infusions every 6 weeks instead of every 3 weeks, my last two PET scans have been negative (NED), and my next one will just be a CT scan since I have had such great results. I wish you and your partner all the best, and hope my experience gives you both encouragement as well!! I'm still here and we are MCC warriors!!
I was diagnosed with MCC 2+ years ago in my R forearm. Tumor removed, all was good. Petscan was clear. January of this year BANG ! TUMOR via lymphnodes R Axillary. 36 rounds of radiation, again all was right with testing. No signs of the cancer. 2 weeks ago MMCC has advanced to my pancreas and some weird lymphnodes in the core of my body that they say can't be checked as they can't get to them via needle biopsy. My tumor DNA bloodwork has gone crazy high.
Has anyone ever been treated with Keytruda and how did it effect you. I start treatments on Monday, every 3 weeks. A bit nervous but hopeful. Would love to here any other experiences with this treatment. Best wishes for all.
@ablanton123, welcome. I'm tagging several members who have had immunotherapy as a treatment for merkel cell carcinoma, like @mkhighpoint @lenny48ca @kate777 @lynn99 @rogermcintire who can share their experiences.
Does your partner have a treatment plan now? What are the next steps?