Checking in again after starting treatment

Posted by robolobo @robolobo, Sep 17 10:00am

Hi everybody. Just started my treatment for HPV-negative Base of Tongue Cancer. 6 of 35 radiation sessions done, 2 of 7 Chemos with Cisplatin done. Some fatigue, some pain, but probably minor to what's lurking around the corner. Still eating OK but have been using my feeding tube too. Going to have a port installed on October 1st unless I can get in sooner, I am already tired of getting jabbed and losing a lot of body hair from all the bandages too, I should have done the port as soon as I could have :-\. But for now have a positive attitude, which I did not have when I was initially diagnosed. Thanks for all your support!

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@roblem

In addition to what I stated previously, part of my treatment plan was to take the 3 different anti-nausea meds at the start of cisplatin no matter what. I went to Froedtert Hospital in Wisconsin which is a true cancer center that specializes in more head or neck cancers than anyone else in the state by far. Anyways, my two cents. I know this can be overwhelming, but you will get through this.

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I'm in Wisconsin, too. But I went to Mayo Rochester. I had no nausea or really any stomach issues during
Cisplatin or radiation. I never took any of the nausea drugs. What little sense of taste I lost all came back by two weeks post treatment. I was lucky all the way around.

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@sandy8043

I'm in Wisconsin, too. But I went to Mayo Rochester. I had no nausea or really any stomach issues during
Cisplatin or radiation. I never took any of the nausea drugs. What little sense of taste I lost all came back by two weeks post treatment. I was lucky all the way around.

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You are the first person I ever heard of having that much success post treatment. That is awesome. How far out are you from treatment?

I am guessing your radiation treatment was Proton and not Photon?

Let me know as I am curious. Thanks

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Actually I had the traditional radiation. I finished in early February of this year. My docs were surprised that I did so well. Only one mouth sore that healed in 1 week. I did the baking soda rinses a lot. Had/have mouth dryness which is pretty mild now but persistent. During my tongue surgery and reconstruction they discovered thyroid cancer in one of the removed lymph nodes. So I had my thyroid removed in May. I count my cancer free days from that second surgery. Today is day 141 cancer free. I do still struggle with lymphedema and use a lymphatic pump machine. And fibrosis is a persistent issue as well. And my speech could be better. But all in all I healed well and I am thankful for that. I know not every one does.

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@robolobo This treatment does knock you down both physically and mentally. Listen to your body when you need to rest, but don't listen when it says no more food! Keep challenging yourself and try new things, cream of wheat with protein powder, various flavors of smoothies, cottage cheese or greek yogurt added for protein. Keep your blender busy with different mixtures because a new flavor may taste better than what you tried yesterday. It is easier to drink your nutrition than eat it. Just hold your nose and swallow. Do address the nausea with plenty of drugs. Oral lidocaine gel right before eating or drinking really helps. I lived on Panera frozen mocha frappes for much of my radiation. Lots of calories, unfortunately lots of sugar, but it tasted good and was a treat on the way home from radiation. I didn't develop nausea with my Cetuximab infusions until after halfway but that sure complicated issues. My husband had Cisplatin and tolerated bland foods much better than regular diet. He had bladder cancer though, not oral. Mashed potatoes were a staple for him. I hope you can find something that you can tolerate. We all look like we've been run over by a truck by the end of treatment, and pretty much feel like it too. Stay strong and keep the faith.

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Thank you for the suggestions! I picked up the "Magic Mouthwash" the other day, and combined with the Norco that got me through the night. Trying not to abuse the latter, but sometimes you do what you gotta do 🙂 Offsetting with Miralax and Senna, the recent constipation was no fun, which led to me not wanting anything going in the gut, had an eight pound weight loss in about 10 days 🙁 Going to find me a little blender today and lots of frozen fruit, protein powder, Greek yogurt that's a great idea. I've got the tools and the support, sometimes it's just powering through the overall fatigue. But I am more optimistic than I was the other day.

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Try Ativan It was prescribed to me for the same nausea not for anxiety it worked better than the zofran

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@robolobo You could also get Boost Very High Calorie 530 on Amazon for about $50 for 24 bottles and it has 13g of sugar to it.

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Any ideas on how long the radiation continues to impact the tumor after treatment is finished? I have heard 3 mos and 6 mos…

Thanks in advance for any thinking!

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