Recovery - Base of Tongue, Right Tonsil

Debbie H.

My husband is now in recovery for Base of Tongue, Right Tonsil cancer (HPV positive) not a smoker or drinker. He had his last treatment on August 29th (7 weeks external beam radiation, with 3 chemotherapy treatments of cisplatin). It has been 8 weeks out of treatment, and he is slowly improving. The treatments were not a walk in the park by no means. Thank goodness he was healthy and strong enough to be able to handle such aggressive treatments with success.

He is able to eat more as the weeks go by (fish, chicken, pork, some beef, potatoes, noodles, vegetables). Sweets are still something that do no taste good to him. Some foods seems to trigger the salty taste and mucus more than others.

Fatigue still comes and goes with no set schedule, but is improving. His facial hair has started to grow back, however the hair on the back of his head from radiation has not yet.

I know from reading all of your blogs that everyone is different, and recovery is very slow. I am my husbands biggest cheerleader and encourage him every day and let him know how great he is doing (even though some days he may not agree with me). I have seen first hand what cancer treatments do to a healthy person prior to the treatments and I know he will get better and better as the months go by.

Does anyone have any suggestions on controlling the salty taste or the mucas? How long does it take for the hair on the back of neck/head to grow back? How long before he is really feeling like himself?

Thanks for insight,
Debbie

Skiffin16

Debbie
Hi...I think I answered some of these in another post to you.

You might try using plastic utencils to help with the salty taste...not sure, some associate a metallic taste. I'm sure a lot of the salty taste is attributed to the mucous.

For that you can try peroxide and baking soda rinses, club soda water, ginger ale, etc...

Actually he's doing pretty well concerning his eating it sounds...you are doing good with him.

Sweet was one of the last tastes to return for me...I'd get a taste of sweet, but lose in in the nexr few bites, now it's pretty much completely returned.

As for the hair, he might get all back, some back, or none back from the radiation exposure.

Feeling like himself (his old self), may never come...it's a very, very slow process just to feel good again consistantly.

Best,
John

ratface

Skiffin16 said:

Debbie
Hi...I think I answered some of these in another post to you.

You might try using plastic utencils to help with the salty taste...not sure, some associate a metallic taste. I'm sure a lot of the salty taste is attributed to the mucous.

For that you can try peroxide and baking soda rinses, club soda water, ginger ale, etc...

Actually he's doing pretty well concerning his eating it sounds...you are doing good with him.

Sweet was one of the last tastes to return for me...I'd get a taste of sweet, but lose in in the nexr few bites, now it's pretty much completely returned.

As for the hair, he might get all back, some back, or none back from the radiation exposure.

Feeling like himself (his old self), may never come...it's a very, very slow process just to feel good again consistantly.

Best,
John

Exact treatment and DX
Hi Debbie

I had BOT with right side involvement. My treatment for comparison was 39 rads, 3 infusions of cisplatin on a 21 day cycle and a selective neck dissection. I was in otherwise good health prior to the start of treatment although overweight. I also had the salty taste experience. Literally everything I ate tasted like pure salt. Those taste buds will regenerate and that unpleasant salty taste will diminish. I also developed an insatiable urge for sweets since then which continues to today. Your husband will probably return to his previous level of energy between 6-12 months. John is right that it may not all come back to 100 percent but relatively close. There is a lot of rebuilding going on internally with his blood cells. It will be important for close monitoring of his thyroid in the months to come and he may need thyroid medicine. He is eating very well and I predict a quick recovery at this rate with you as his caretaker. Most importantly keep track of his bloodwork, nutrition, mental health, and make sure he gets a little exercise.

jim and i

He is doing great
Debbie,

Your husband is doing fantastic! My husband, Jim, is going backwards. He is 10 weeks out from Rads and the only improvement is he has to shave now and the hair on the back of his head is growing back. 3 weeks out he was starting to taste fresh fruit and beer, what combination. His energy was also returning. That lasted ablut 2-3 weeks and now he can't taste anything, is nauseous alot and sleeps all the time. Jim is also 77 years old and had lost 40lbs bvefore diagnosed so that probably is part of the slow recovery. I say all this to encourage you to Celebrate your husbands quick recovery.

Praying for a continued speedy recovery.

RogerRN43

Impressed
Your post is actually inspiring to me. I am undergoing the same treatment for L tonsil, I'm 1/3 in and to see your husband eat such a variety 8 weeks out sounds great. I've read others taking longer like in the MSNBC video she says she couldn't eat for 8 months, so it sounds like he is heading in the right direction at a great pace even if it seems slow at times.

From what I've read, part of battling the fatigue is keeping active like walking just a bit more week to week. This is tricky outside as winter approaches. I can think of the local mall and helping you at the grocery store as "walking" outings. I agree to keep thyroid levels in check to make sure out of range values are not causing extra fatigue or mood changes.

Best wishes,
Roger

Hondo

Hi Debbie H
Your Husband sounds like he is doing just great and will recover well from all the treatment. The hair on my head took about a year for it to grow back to normal, I was just glad it grew back. Salt taste and mucus it just all takes time, remember he went through a very hard treatment, but thanks God he created our bodies to heal themselves.

Take care
╠╣ONDO

Skiffin16

Hondo said:

Hi Debbie H
Your Husband sounds like he is doing just great and will recover well from all the treatment. The hair on my head took about a year for it to grow back to normal, I was just glad it grew back. Salt taste and mucus it just all takes time, remember he went through a very hard treatment, but thanks God he created our bodies to heal themselves.

Take care
╠╣ONDO

Back to Normal
"The hair on my head took about a year for it to grow back to normal..."

But if you didn't have any hair there before rads, back to normal means you still won't have any hair there....LOL.

JG