1. < Head & Neck Cancer

HNSCC spread to lungs

Posted by kathyheidt @kathyheidt, Aug 19 4:20pm

Hi I have stage 4a maxillary sinus squamous cell cancer. I did three months chemo then surgery and now cemiplimab immunotherapy. I just had three month ct scan and found new nodules in lungs. How long do I have to live

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Mentor
Sue, Volunteer Mentor | @sepdvm | Aug 20 11:50am

Hello @kathyheidt. I’m so sorry to hear of your new Mets. I also have metastatic SCC from skin origin in my ear. My first met was to my lung. Via a VATS procedure that was removed as was the next one 2 years later. They don’t give a very long prognosis once lung metastasis but I am here 12 years later after additional mets to muscle and kidney. Cemiplimab cleared my kidney and lymphatic disease so far after two years on it. I understand that it has better results in skin origin SCC rather than mucous membrane. Perhaps Keytruda or a different immunotherapy could be a discussion with your oncologist? They are using some combo treatments in trials also. Have you considered a second opinion? Do you have a major cancer of referral center nearby? We drive 10 hours from Ohio to MN for cancer tx at Mayo Clinic and I believe that is why I am alive today. I also use immune supplements and an immune therapy daily. Send me a private message if you want more information. Stay positive and keep advocating for your best level of medical care.

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1 reply
kathyheidt | @kathyheidt | Aug 20 1:51pm
In reply to @sepdvm "Hello @kathyheidt. I’m so sorry to hear of your new Mets. I also have metastatic SCC..." + (show)
@sepdvm

Hello @kathyheidt. I’m so sorry to hear of your new Mets. I also have metastatic SCC from skin origin in my ear. My first met was to my lung. Via a VATS procedure that was removed as was the next one 2 years later. They don’t give a very long prognosis once lung metastasis but I am here 12 years later after additional mets to muscle and kidney. Cemiplimab cleared my kidney and lymphatic disease so far after two years on it. I understand that it has better results in skin origin SCC rather than mucous membrane. Perhaps Keytruda or a different immunotherapy could be a discussion with your oncologist? They are using some combo treatments in trials also. Have you considered a second opinion? Do you have a major cancer of referral center nearby? We drive 10 hours from Ohio to MN for cancer tx at Mayo Clinic and I believe that is why I am alive today. I also use immune supplements and an immune therapy daily. Send me a private message if you want more information. Stay positive and keep advocating for your best level of medical care.

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Thank uou! I am so happy it has worked for you! I am at Sloane Kettering in nyc. They are going to do a biopsy to doublecheck bc the immunotherapy has also caused pneumonititis in the lungs msg. Fingers crossed. They will then decide to ho back on cem or other types of treatment. I was on a clinical trial for neoadjuvant therapy with chemo and cem and it had worked great, clear margins in major maxillectomy. So may twists and turns with surgical complications and now this. If ok may reach out if u think extra immune boosters may help?

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Mentor
Sue, Volunteer Mentor | @sepdvm | Aug 20 5:48pm
In reply to @kathyheidt "Thank uou! I am so happy it has worked for you! I am at Sloane Kettering..." + (show)
@kathyheidt

Thank uou! I am so happy it has worked for you! I am at Sloane Kettering in nyc. They are going to do a biopsy to doublecheck bc the immunotherapy has also caused pneumonititis in the lungs msg. Fingers crossed. They will then decide to ho back on cem or other types of treatment. I was on a clinical trial for neoadjuvant therapy with chemo and cem and it had worked great, clear margins in major maxillectomy. So may twists and turns with surgical complications and now this. If ok may reach out if u think extra immune boosters may help?

Jump to this post

You’re lucky to be at a top notch medical center. If your cure is out there they will find it. My Mayo Clinic oncologist thinks my great response to Cemiplimab may be due in part to all the immune enhancements I have done for these years. Other doctors may not be so supportive of trying complementary treatments along with traditional. Since we get cancer because our immune system is not recognizing and destroying cancer cells when they develop, strengthening the immune system makes sense. But utilizing treatment that does not have adequate testing for the medical profession to support it is the realization. None of us know whether or not these things help, but if they don’t hurt, I’m willing to chance it.

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