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MJsWorld's Message Board Messages

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I have been desperately browsing and searching to find useful information online, but only bumped into scary statistics. Then I found Inspire and Cancer Compass websites and decided to sign up on both in hope to get more information. Our story. In 2010 my hubby, the sweetest man, was diagnosed with SCC after removal of a lump on one side of his neck. Primary was never found and he was HPV positive. Never a smoker or drinker, couldn’t get him to even sip on beer. Did a regular brutal radiation, but no chemo and no tube. Over two years clean and in 2013 Pet scan showed 10 mm mass on the exact same spot, had Pet scan, neck dissection with lymph nodes removal, all came back negative. His doctors decided to give him IMRT plus Cisplatin. He handled both pretty well, still no tube. For five years he ate great, looked great, worked out every day, full time job. He did develop some esophageal scarring and shoulder/neck pain stiffness from the radiation around 7-8 months ago, but was/is taking painkillers to handle it, did dilations. But his scans were good until last July, 2018. We were so hoping that once we reached that five year mark we would be golden. Pet scan showed two suspicions spots by the supraclavicular area with SUV 5 and 6, that area is about 1” below his surgery site. The doctor said that while his SUV is not 21 or 25 that he sees often, it was still concerning enough to request a needle biopsy. So he did and sure enough it came back as the same SCC! He said that it’s possible that just one cell was left behind and it took it a long time to get big enough to raise concern. All that radiation and still one cell has gotten away? I asked if surgery was an option and he said he didn’t think so since it was irradiated area, although only an ENT surgeon can say for sure. My God. So much for better prognosis with HPV positive. We were floored. The doctor said that immunotherapy is our best option and that we would qualify even if he is PD-L1 negative since it’s another recurrence, so he is not even going to test for it. So it sounded like we would be just shooting in the dark. He said if that doesn’t work then we try Erbitux and if that doesn’t work then Carboplatin. He explained that those are the easiest to tolerate and because my husband is still active it would give him a better quality of life. Has anyone experienced something like this with H&N SCC? I searched, and searched, and searched, my head hurts. I cannot find any stories about #3 recurrences after 5+ years and that makes me sick from worry. I would so love to hear from anyone who was in a similar situation. Please share what you’ve been offered, what treatments you’ve done, how many, was it one or a combination of two treatments, how you tolerated it, were results good? Is there a hope for patients with two recurrences? The doctor said that we would get immunotherapy anyway, whether we are negative or positive...but doesn’t that really mean that they are grasping at straws and just throwing a treatment just to give us something, since there is nothing else? I’ve read many lung cancer success stories with immunotherapy, but I am yet to see success stories with head and neck cancer multiple recurrences and immunotherapy. I am thanking everyone who can share and help. I am so stressed I can’t sleep or eat, I roam around like a zombie during the day. All I am doing over and over like a robot is trying to find something to give us some peace of mind, something to believe in.
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About MJsWorld

Caregiver
Skin Cancer - Squamous Cell

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