Connect
HPV Tonsil cancer: I'm very nervous about chemo and radiation
In June of 2024 I was diagnosed with HPV+ tonsil cancer. I have been doing an alternative approach but believe it is not working and can not find a doctor in my area that will work with me and order a second pet scan as I am not following THEIR protocal. It is all Chemo / radiation or nothing! Basically my wife is no support if I go with the traditional routine, and insists that what I am doing will work.
I am very nervous about chemo and radiation. What else my be available?
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
@hrhwilliam My husband had the tonsil with tumor removed on Wed. Now we focus on treatment for tumor in lymph node. Meeting medical oncologist and radiology oncologist to I suppose plan treatment. A little less stress as 1 tumor is gone but he's apprehensive about the treatments and duration. I'm guessing we will know more after meeting with the 2 doctors.
-
Like -
Helpful -
Hug
1 Reaction@hrhwilliam Thank you for the great explanation. It helps very much to hear from people like yourself that have been there and now are much better. I'm still in shock of all that going on with my neck, nose, and tastes. I hope I don't start losing teeth. I'm using Fluoride trays everyday and I hope this helps. Thank you for everything again. Tim
-
Like -
Helpful -
Hug
1 Reaction@lizzyj58 I was in your same boat about 2 months ago. It's a rough journey for sure.
@harleytiger What was the worst thing for you? I'm trying to find out what he should expect so as not be surprised when issues come up.
I am passing along the single best advice that I received from my sister's oncologist.
Get the feeding tube sooner rather than later. For me that was the raditation halfway point. You as his loving caregiver will know when/if a feeding tube is necessary.
For me the tube was a lifesaver because I could get my nutrition without pain. I insisted that all of my meds could be taken by tube and I could get enough water to avoid dehydration. And, if you have a Vitamix you can inrake some awesomely nutritious smoothies that will aid the healing process.
I was on the tube for 6 months and have zero regrets. My treatment team was against it and I still dont understand why but I am glad that I insisted on it when I did. I firmly believe the feeding tube made the treatment and healing less traumatic.
Treatment is hard but doable.
@harleytiger I'm a few days past my 2 year an from tongue cancer surgery. It sounds like you are healing well! The best I can tell you is that healing, eating, taste, etc is slow...very slow...extremely slow! The neck stiffness come and goes. I also have times when swelling in my mouth and throat are an issue. Then I will go weeks,with no issues. I've learned that when problems come up they are not permanent. So don't be discouraged if you have times when your throat is tighter or mouth is drier....it will pass. I was told that by other patients and its true. Good times get longer and bad times are shorter.
I triggered my taste buds with salty, sweet, and sour to get them to relearn their job. Dill pickles, lemon slices, cheap candy suckers all helped trigger taste and saliva. I would drink water and touch them to my tongue. Sometimes it triggered nerve pain on my surgical side. But my saliva is pretty much normal now. Taste, too. Good luck to you. Sandy
-
Like -
Helpful -
Hug
2 ReactionsHi @m3rcury,
Not sure what kind of cancer you had but I had 35 rounds (7 weeks) of Photon radiation for a total of 70Gy and 3 rounds of Cisplatin chemo for tonsil cancer back in 2008 but no surgery. I went to a head & neck cancer clinic then and my treatment team was against the feeding tube also unless the treatment went sideways. The reason they told me at that time was that they were worried that your swallowing could be a lot more difficult to learn again or atrophy set in.
Hope this helps.
-
Like -
Helpful -
Hug
4 ReactionsThank you so much for the info I was not provided that explanation.
I received therapy for swallowing and trained in jaw exercises.
I had HPV 16 in base of tongue, tonsil and neck lymph nodes and underwent the same radiation + Cisplatin regiment as you.
-
Like -
Helpful -
Hug
2 Reactions@lizzyj58 My oncologist doesn't do feeding tubes and so I didn't get one. They use the Boost method and it works. I bought a Ninja smoothie maker and some large silicone straws to make my own. I guess it depends on who you're being treated by for the feeding tube? The surgery was bad, but I was able to push through it. The radiation treatments themselves are not tough. It's the end of Radiation when it hits you like a rock. The radiation is accumulative and so it builds up. You lose your appetite and have to force yourself to eat. Food is horrible and it tastes metallic. That lasted about a week? Boost made this doable. Then I started eating normal food again, but it always had to have a wet component. However, the food has no taste at first, then at about two weeks, I had a hint of the tastes on the first bite, then it goes away. I had two cheeseburgers about 1 ½ weeks out, I drank a lot of water with them. I lost about 15 pounds and now I'm about staying the same at 201, from 218/220.
Neck stiffness is another issue. It's called radiation fibrosis and I'm constantly stretching it. I gargled with 3 things. Salt and Baking Soda/ Water; Salt and Water; L-Glutamine Powder and Warm Water. The L-Glutamine was very throat soothing. I also had hot Green Tea in the morning which was also very throat soothing. I use Act mouth (kids apple) wash and Xylitabs at night. Water by the bed for the dry mouth. The mornings are usually good for me, and the evenings things start to go south. I'll be a month out on Wednesday (10-22) and I'm doing ok compared to a lot of others I've read their stories. I didn't miss a day at the gym accept when I had my drain tubes in ( a few days). So, the biggest surprise for me is how long the recovery is, I'm not a patient person. I'm getting better everyday though and that's a positive. If you have a Chinese Restaurant near order the egg flour soup in the beginning it helped.
-
Like -
Helpful -
Hug
3 Reactions@hrhwilliam Thank you Bill, I'm finding all this out and you are correct. My tastes are starting to come around and my neck doesn't bother too much. I can't wait to get back to normal eating habits. I love food and I'm a home Sourdough Bread baker. I can't imagine not being able to eat or taste my breads again.
-
Like -
Helpful -
Hug
6 Reactions