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Joined: Dec 2019
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Joined: Dec 2019
Posts: 39
I have terminal cancer of the tongue (SCC, spread in nerves throughout jaw). I started my treatment at UCSF with a Head/Neck Oncologist with no communication skills whatsoever. It was also a long way from home to get treatment there, so I made an arrangement where the UCSF doctor would still be involved (I assumed that because he worked at UCSF he was better) and got a local oncologist to do treatments with closer to home.

The UCSF oncologist says you can only do cisplatin/taxol 8 times and then you have to switch. His next choice -I forgot the name, but it is an anti-epithelial cell drug that, in my research, doesn't work well on it's own. The local oncologist says he's never heard of a ceiling for cisplatin/taxol as long as bloodwork and side effects are not an issue and it seems to be working (my tumor is growing very slowly).

The local oncologist is an older guy, and not head/neck specific, so I'm just wondering how to make sure I'm getting the best care I can so I can live an active life for as long as possible. I'm about to be 46. I'm not ready to surrender to this stupid disease. Will bringing in a 3rd opinion just muddy the waters more? Once you get the opinion do you continue with that doctor or can that guide your current doctor? (Family wants me to go to University of Chicago, but I don't want to move back to IL.)

Any help is appreciated, TIA.

Joined: Dec 2020
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Hi there muddyb00ts -- I've been following your story and would like to share my family's experience, if it helps.

My dad is battling Stage 3 HPV-related throat/tonsil cancer, so I'm coming from the perspective of a family member who's not involved in his daily care (I'm in NC). He lives in Stuart, Florida. He was on a series of chemo and radiation. Primarily radiation. Tried some Erbitux (a type of chemo using monoclonal antibodies) but he had a severe allergic reaction and had to discontinue.

His local resources have been hit or miss and he's had to travel to bigger cities (U of Miami) when he's run into issues. A few months ago, he experienced major throat hemorrhaging, as the radiation had destroyed a lot of tissue in his throat and it had turned necrotic and was bleeding profusely. He was rushed to the ER, and his local ENT -- who had never dealt with his type of throat cancer (HPV), nor had dealt with necrosis of the throat -- suggested that he move into hospice, as he night be out of options. We were all frustrated with this doctor's mindset and his recommendation to just give up.

However, after traveling to U of Miami to see a highly experienced ENT who's very familiar with his type of cancer, he was directed to start hyperbaric oxygen therapy to help heal the necrotic tissues (and also help his ability to eat and talk -- both compromised). It is starting to help, although slowly.

I say all this to recommend that you find a head/neck-specific oncologist (or even an experienced ENT who's dealt with your type of cancer and can direct you to preferred oncologists). You need someone to believe that you can move forward and have a good quality of life for as long as possible -- and can develop a plan to help you do that.

I don't think it would hurt to meet with someone who's seen a ton of tongue cancers -- maybe at a larger city -- and they can consult with your local resources. Cancer still kills tons of people. There are no established ways to cure it - it's still a moving target. So, you have to work with people who have seen/done more in the cancer field.

Just my opinion as a family member, so take it with all the grains of salt. But I'm rooting for you - and I want you to find good information and a plan that makes you feel hopeful/strong.

Take care -- and please let us know how you're doing. Wishing you all the best!

Joined: Aug 2018
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my husband was given the news that not much could be done. He went to Mayo clinic and they had said they lost only 1 person with his cancer. He is 1.5 yrs out with his second bout and just got another clean bill of health. you never know. best wishes to you


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
1 member likes this: Jabberwocky

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