Radiation and chemotherapy. Mine started out as HPV 16 positive tumor lower tongue and right tonsil area. Could not get reduced radiation so I have been trying to get into a clinical trial or better yet you immuno therapy. However now I have a mass that has turned to t4 n3, this was after almost a year and a half of slow progression. I was trying to get into the Keytruda trial that was being offered , but my insurance is not accepted for the testing so I cannot even try to get in. I might just as well have taken the excessive radiation and chemo and dealt with the toxicity if this were to be the case. Obviously, I didn't understand how the system worked. Or should I say how it doesn't. I don't mean to sound bitter, but I am angry that I was not given either opportunity or any choices. It was, after all, my life.
Of the two patients at the immune therapy clinic that I attend, both with tonsillar SCC, The one who did the aggressive radiation with chemo has done better than the one who tried to avoid, tried low dose radiation, etc. My SCC was ear origin, not oral, but radical surgery plus radiation with targeted therapy has controlled the initial site. Unfortunately I have had metastases, but this is being managed well at Mayo Clinic Rochester MN. Medicare is paying for my current treatment on Libtayo, a drug that works similar to Keytruda. I will also mention a complementary immune therapy I have done in the Bahamas for 10 years, Quantumimmunotherapy.net is the website. Insurance will not usually pay for that either unfortunately. It sounds like you need a doctor who fights on your behalf with the insurance company. A second opinion might be valuable at this point and it is usually covered by insurance. Try a big cancer center. Good luck with this fight. Don't give up.
Newly diagnosed tongue cancer. Squamous tongue showed up in a lesion on back of tongue no evidence of any a palpable tumor or swollen lymph nodes any ideas or recommendations would be appreciated
I would certainly discuss the adverse events associated with that laser surgery, and depending on that discussion, choose to follow through with their recommendation. A second opinion is always valuable too. Other questions to ask include size of tumor? ....is it necessary to shrink tumor with chemo prior to surgery?....long term effects from laser surgery?...followup treatments recommended afterwards? Laser surgery is usually a very rapid healing compared to regular surgery. I would just want to know what to expect in terms of tongue function and swallowing afterward. Good luck with this.
Recently diagnosed with squamous tongue cancer. It showed up as a lesion on tongue. No evidence of palpable tumor or swollen lymph nodes they want to remove it with a laser any ideas ? Thanks
Newly diagnosed tongue cancer. Squamous tongue showed up in a lesion on back of tongue no evidence of any a palpable tumor or swollen lymph nodes any ideas or recommendations would be appreciated
I hope that you find a trial that will accept you. Keytruda, Opdivo and other PD-1 PD-L1 immuno-oncology are effective agents for gastro-esophageal cancers. I was diagnosed with metastatic ESCC on 1/2019 and was treated with aggressive chemo radiation. I had a good initial response as evidenced by scans but recurrence/mets after 9 months. Started FOLFOX + Keytruda. Tolerated 3 doses of Keytruda before I had to discontinue due to exacerbation of of my MS. That said, I had a remarkable response to therapy with marked shrinkage/attenuation of all lesions and no new mets. Currently on FOLFIRI. So far so good.
Radiation and chemotherapy. Mine started out as HPV 16 positive tumor lower tongue and right tonsil area. Could not get reduced radiation so I have been trying to get into a clinical trial or better yet you immuno therapy. However now I have a mass that has turned to t4 n3, this was after almost a year and a half of slow progression. I was trying to get into the Keytruda trial that was being offered , but my insurance is not accepted for the testing so I cannot even try to get in. I might just as well have taken the excessive radiation and chemo and dealt with the toxicity if this were to be the case. Obviously, I didn't understand how the system worked. Or should I say how it doesn't. I don't mean to sound bitter, but I am angry that I was not given either opportunity or any choices. It was, after all, my life.
It is so encouraging to hear of your results. I'm curious as to what insurance you had, as I have not been able to access these treatments despite similar diagnosis.
I was diagnosed with metastatic HNSCC and malignant neoplasm of the lymphoid in April 2020. I had a very small spot on my left interorbital check (caused by solar radiation) that turned out to be squamous cell carcinoma that metastasized to my left cervical and axilla lymph nodes. I had outpatient surgery to remove the spot (tumor) on my face and began chemo/immuno treatment with carboplatin/taxol and 200 mg of keytruda. After 4 infusions (1 every 3 weeks) the CT Scan showed the largest lymph node had shrank in size from 13 mm to 7 mm and all other nodes returned to normal size. My oncologist decided to continue treatment with just Keytruda (200 mg every 3 weeks). After 5 infusions I had another CT Scan which came back NED. All lymph nodes had resolved, no evidence of irregular node activity. Because of the pandemic, my oncologist switched me to Keytruda @ 400 mg once every 6 weeks. Over the past 2 years I have had 16 infusions, the last one on August 31, 2022. The 3 CT Scans w/ contrast and 2 Pet Scans I had during that period all came back NED. Because I have not experienced any side effects, my Dr wants me to have 2 more Keytruda infusions. With the advances in treatment a metastatic HNSCC diagnosis is not as dire as it once was.
It is so encouraging to hear of your results. I'm curious as to what insurance you had, as I have not been able to access these treatments despite similar diagnosis.
I had a biopsy 2 months ago and just got the diagnosis of SC carcinoma. Doc said it will be approx 4 months to get the rest of the tumour removed. Is this concerning? What should I be looking out for? Does it spread regionally (tumour gets bigger) or can it jump to other areas? My lesion is on my leg. I’ve had other spots appear on my leg and one in chest but they don’t look like the lesion on my leg.
@missy22, how are you doing? Four months to get a cancerous tumor removed seems like a very long time to wait. Do you know if it is slow growing? Did they biopsy the other spots on your leg or chest?
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Of the two patients at the immune therapy clinic that I attend, both with tonsillar SCC, The one who did the aggressive radiation with chemo has done better than the one who tried to avoid, tried low dose radiation, etc. My SCC was ear origin, not oral, but radical surgery plus radiation with targeted therapy has controlled the initial site. Unfortunately I have had metastases, but this is being managed well at Mayo Clinic Rochester MN. Medicare is paying for my current treatment on Libtayo, a drug that works similar to Keytruda. I will also mention a complementary immune therapy I have done in the Bahamas for 10 years, Quantumimmunotherapy.net is the website. Insurance will not usually pay for that either unfortunately. It sounds like you need a doctor who fights on your behalf with the insurance company. A second opinion might be valuable at this point and it is usually covered by insurance. Try a big cancer center. Good luck with this fight. Don't give up.
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Helpful -
Hug
3 ReactionsI would certainly discuss the adverse events associated with that laser surgery, and depending on that discussion, choose to follow through with their recommendation. A second opinion is always valuable too. Other questions to ask include size of tumor? ....is it necessary to shrink tumor with chemo prior to surgery?....long term effects from laser surgery?...followup treatments recommended afterwards? Laser surgery is usually a very rapid healing compared to regular surgery. I would just want to know what to expect in terms of tongue function and swallowing afterward. Good luck with this.
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Like -
Helpful -
Hug
1 ReactionRecently diagnosed with squamous tongue cancer. It showed up as a lesion on tongue. No evidence of palpable tumor or swollen lymph nodes they want to remove it with a laser any ideas ? Thanks
Newly diagnosed tongue cancer. Squamous tongue showed up in a lesion on back of tongue no evidence of any a palpable tumor or swollen lymph nodes any ideas or recommendations would be appreciated
I was diagnosed to squamous tongue cancer what do you recommend ? They want to cut it out with a lazer?
I hope that you find a trial that will accept you. Keytruda, Opdivo and other PD-1 PD-L1 immuno-oncology are effective agents for gastro-esophageal cancers. I was diagnosed with metastatic ESCC on 1/2019 and was treated with aggressive chemo radiation. I had a good initial response as evidenced by scans but recurrence/mets after 9 months. Started FOLFOX + Keytruda. Tolerated 3 doses of Keytruda before I had to discontinue due to exacerbation of of my MS. That said, I had a remarkable response to therapy with marked shrinkage/attenuation of all lesions and no new mets. Currently on FOLFIRI. So far so good.
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Like -
Helpful -
Hug
2 ReactionsRadiation and chemotherapy. Mine started out as HPV 16 positive tumor lower tongue and right tonsil area. Could not get reduced radiation so I have been trying to get into a clinical trial or better yet you immuno therapy. However now I have a mass that has turned to t4 n3, this was after almost a year and a half of slow progression. I was trying to get into the Keytruda trial that was being offered , but my insurance is not accepted for the testing so I cannot even try to get in. I might just as well have taken the excessive radiation and chemo and dealt with the toxicity if this were to be the case. Obviously, I didn't understand how the system worked. Or should I say how it doesn't. I don't mean to sound bitter, but I am angry that I was not given either opportunity or any choices. It was, after all, my life.
Welcome @youngpepper. You also have Metastatic Squamous Cell Carcinoma? In the head and neck region? What treatments options have been offered to you?
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1 ReactionIt is so encouraging to hear of your results. I'm curious as to what insurance you had, as I have not been able to access these treatments despite similar diagnosis.
@missy22, how are you doing? Four months to get a cancerous tumor removed seems like a very long time to wait. Do you know if it is slow growing? Did they biopsy the other spots on your leg or chest?
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Hug
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