SCC HPV+ on right tonsil and nodes treatment plan.

Posted by sandralea58 @sandralea58, Oct 28, 2022

Hi all. My 70 year young husband has been diagnosed with SCC HPV+ on right tonsil, only detected by lump on neck. RO says N1. He will undergo 35 rounds of 70g radiation and was offered 2 cycles of cisplatin 3 weeks apart (standard care treatment). We understand that HPV+ responds very well to radiation, and given his age the cisplatin is not highly recommended. Anyone in his situation have similar decisions to make regarding treatment.

Thank you for sharing.

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@sandralea58

Hi. There is another chemo drug they can offer if the risk from the cisplatin is too great. Our Cancer Centre here in BC did not offer it. Those with hearing loss before treatment should really be aware. My husband’s tonsil/base of tongue cancer was HPV+. He received only radiation as his treatment plan. He declined the chemo offered. His PET scan is early April. I will post the outcome. He managed fine with the radiation. Not a cake walk by any means, but he followed all the recommendations from his team. The SLP was very important and the exercises given were a blessing. His RD watched his weight, and he got through without a feeding tube. Magic Mouthwash helped significantly, and moisturizing the neck was very important. Mentally, I believe all cancer diagnosis are difficult for the patient and the caregiver/spouse and family. During this period in society, where a lot of visits are virtual and without human touch, it made things more difficult and were dearly missed. I wish you and your dad well!

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It is good to hear the optimism in your words. Thank you. We (my husband) will have tonsillar surgery and lymph node dissection surgery in April. I'm trying not to read too much, but just enough to be prepared for the recovery phase and what comes after your words were very important to me today. Thank you.

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I also had issues with thick mucus in my throat during and after radiation treatments. As well, I took medications through my Peg Tube for a time also. Gargling with salt water helped some. Also, make sure that you stay hydrated. I will say that in my case eventually the mucus subsided. Hang in there and don’t lose hope. It will get better!

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@colleenyoung

@anybody10, checking in. How are you doing?

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I am very happy with the peg tube. I don't think I could have lasted much longer without it. I have a new problem with very thick mucus. My doctor suggested I take Muesinex which I have done. It worked for awhile but the thick mucus is back. I am unable to take my medications. I will have to grind them up and put them through my peg tube. Has anyone else had any experience with this type of problem?

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@anybody10

I am just out of the hospital after having a peg tube put in. (feeding tube). It's still early but I think I am glad that it's been put in. I won't have a nutrition problem at least.

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@anybody10, checking in. How are you doing?

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@calenbd

Not to dispute your doctor, but in my case I was able to swallow fine after removal of the tube. The trick is to keep trying to swallow small portions of water, food, or even nothing, if possible, when the tube is in place. Honesty, I ended up going into the hospital for a week because I was malnourished before the feeding tube was installed. If you can keep enough food down, then maybe you don’t need it, but if you can’t, I’d definitely consider it.

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I am just out of the hospital after having a peg tube put in. (feeding tube). It's still early but I think I am glad that it's been put in. I won't have a nutrition problem at least.

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@anybody10

Thank you for your words of wisdom. I hope I have as good an outcome as you. My doctor shuns the feeding tube method because he says it will leave us with an inability to swallow.

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I believe your doctor should realize that getting nutrition and swallowing are 2 different things. If you can't get enough nutrition through your mouth, then a feeding tube might be a necessity. Nutrition is necessary to maintain your weight and your strength, and ability to heal. There are swallowing exercises that can be done to continue working the throat's muscles, and drinking water or nutrition drinks still requires you to swallow. In my opinion, you can't disregard the nutrition need on the basis of saving your swallowing muscles. Nutrition is the priority. Do you have a nutrition therapist or occupational therapist who is working with you in regard to getting proper nutrition and maintaining your ability to swallow? You should see someone who is trained in that regard. Your surgeon or radiology oncologist may not focus on that care as much as is necessary.

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Not to dispute your doctor, but in my case I was able to swallow fine after removal of the tube. The trick is to keep trying to swallow small portions of water, food, or even nothing, if possible, when the tube is in place. Honesty, I ended up going into the hospital for a week because I was malnourished before the feeding tube was installed. If you can keep enough food down, then maybe you don’t need it, but if you can’t, I’d definitely consider it.

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@calenbd

I can relate to your experience. The radiation treatments were by far the worst for me. Like you, I started getting thick mucus about midway through the treatment schedule. I ended up being unable to eat or drink without coughing or choking. I had to sleep sitting up to get any sleep at all. I lost 40 pounds and ended up getting a feeding tube (best decision I made by the way). My blood work was so bad I missed chemo and radiation treatments. I did not want to go on either. Sound familiar? Guess what, IT WILL GET BETTER. There is light at the end of the tunnel. Please, please, please hang in there!! Do it for yourself and your loved ones. The end result for me was that I am now cancer free! The pain was worth it to save my life. I believe your life is just as valuable. The severe side effects will subside in a month or so. I am six months out and I am back to almost normal. And most importantly, I am alive! I hope this note gives you some measure of hope and encouragement. Stay strong!!

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Thank you for your words of wisdom. I hope I have as good an outcome as you. My doctor shuns the feeding tube method because he says it will leave us with an inability to swallow.

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@anybody10

To anyone reading this please consider all of your options. I, because of my husband have elected to have chemo and 35 radiation treatments. I have had 13 radiation treatments and am so sick I don't want to go on. I decided that I wanted to discontinue all and leave it up to fate but my husband would not listen to any of it. I had to talk to the doc's again and of course they convinced me to carry on with treatment. The past 24 hours have been the worst. Mucus is so thick I can't swallow or eat. I've lost 20 lbs. and can't afford any more. Please I'm begging can anyone offer some light at the end. I had to cancel yesterdays radiation treatment because I was bleeding profusely from both nostrils. Don't know what today will bring.

Jump to this post

I can relate to your experience. The radiation treatments were by far the worst for me. Like you, I started getting thick mucus about midway through the treatment schedule. I ended up being unable to eat or drink without coughing or choking. I had to sleep sitting up to get any sleep at all. I lost 40 pounds and ended up getting a feeding tube (best decision I made by the way). My blood work was so bad I missed chemo and radiation treatments. I did not want to go on either. Sound familiar? Guess what, IT WILL GET BETTER. There is light at the end of the tunnel. Please, please, please hang in there!! Do it for yourself and your loved ones. The end result for me was that I am now cancer free! The pain was worth it to save my life. I believe your life is just as valuable. The severe side effects will subside in a month or so. I am six months out and I am back to almost normal. And most importantly, I am alive! I hope this note gives you some measure of hope and encouragement. Stay strong!!

REPLY

To anyone reading this please consider all of your options. I, because of my husband have elected to have chemo and 35 radiation treatments. I have had 13 radiation treatments and am so sick I don't want to go on. I decided that I wanted to discontinue all and leave it up to fate but my husband would not listen to any of it. I had to talk to the doc's again and of course they convinced me to carry on with treatment. The past 24 hours have been the worst. Mucus is so thick I can't swallow or eat. I've lost 20 lbs. and can't afford any more. Please I'm begging can anyone offer some light at the end. I had to cancel yesterdays radiation treatment because I was bleeding profusely from both nostrils. Don't know what today will bring.

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