tonsil cancer

motorcycleguy said:

Wildman,

I dropped 45 pounds at one point. I had a feeding tube, but never really used it (although I probably should have, at the end).

I've gained back about 20-25, and food still tastes a little "faded", but good enough. I find it easier to maintain a lower weight, though - which is good!

I also did concurrent Cisplatin, and my hearing was already a little compromised. I am currently still functioning without hearing aids - but I should be looking into them in the near future. (I also had 5 FU (Flourocil?), follow up - which seemed to be the most challenging of all...)

It's a strange experience, for sure - and one that will change your outlook on life. I'm glad you have a wife of 28 years, to help you through!

I personally have a girlfriend. I told her she didn't sign up for Cancer treatment - but she said "I'm here". To be honest, I don't think it would have been very "pretty", if I'd have done it on my own; she kept me eating nutritious food, and made sure my spirits stayed up! (In fact, she's shared information on nutrition with people on here, and I'd be glad to get you (and your wife) in touch with her - if you'd like. It really did help ... a LOT!!) (Just PM me, if you think that would help..)

I get a sense that you're a pretty positive guy, and with all the support you have - I think you'll do much better than most!

mg

Please inbox me the nutrition info as well. And any other helpful tips Would be greatly appreciated!

Eileencj said:

My husband will start Radiation for HPV 16 next week

Hello, 

I'm hoping to learn more with what my husband will go through by joining this chat. I want to be prepared and know how I can help him as the treatments move on. He will be treated with radiation with no chemo. I read that cool mist humidifiers help. Has anyone tried that? Did it help? Were you able to drive to appointments? Are the treatments manageable in the late stages of treatment?  I hope you all are coping well in your treatment! 2021 can't come faster!  All the best to you, Eileen

of cancer does your husband have I guess I missed it. Is it tonsil cancer? Please give us some details as to how many rads etc. Thanks. Also, check out the super thread at the top of the page on the head and neck section lot of info in there. Take Care-God Bless-Russ

motorcycleguy said:

Eileencj,

I'm glad to hear he's getting radiation only (no chemo). That probably means you caught it early.

My guess is that cool mist humidifiers would tend to help.

In my opinion, the best advice is for him to get a ride to the first couple sessions, and see how he feels. Your husband looks pretty hardy, though - so I suspect he will be fine.

Radiation is kind of like an accumulative sunburn. Get lotion (or at least recommendations) from your Oncologist. They may give you free tubes of it. Use a lot of it, and often!

I'm glad your husband has you in his life, to help him eat right, and keep his spirits up!

I wish you both the best possible result,

mg

 

My sessions were about 20 to 25 minutes daily Mon-Fri for 6+weeks for a total of 33. You will go in for a mask fitting before starting. Use a baking soda/salt mixed with water to rinse mouth out to help with mouth sores and tenderness. There are several types of cream you can use I used aquaphor daily after radiation it is a little greasy but it works great. There are other options it a personal preference. You will do fine. good luck!

Wildman said:

Thank you guys

my radiation and chemo start tomorrow morning 6 chemo and 30 radiation treatments I bought 2 big jars of aquafor from amazon for 10 bucks a jar and ready to get this over with I wish you all the best.

Wishing you the best of luck on your treatments. Keep a positive attitude. You can do this! Keep us posted on how you are doing. Dave

Eileencj said:

My husband will start Radiation for HPV 16 next week

Hello, 

I'm hoping to learn more with what my husband will go through by joining this chat. I want to be prepared and know how I can help him as the treatments move on. He will be treated with radiation with no chemo. I read that cool mist humidifiers help. Has anyone tried that? Did it help? Were you able to drive to appointments? Are the treatments manageable in the late stages of treatment?  I hope you all are coping well in your treatment! 2021 can't come faster!  All the best to you, Eileen

He also is starting a radiation only (post surgical) treatment.  A lot of the info you are requesting I've commented on in his threads.

Best of luck!

I just finished treatment in August it was hard.one thing i would recommend try to eat threw  the whole treatmant i got a feeeding tube and by the time i was done lost the abilty to swallow

so if you can work with a good swallow doctor from the beginning. even though this is hard you can get threw it just take it one day at a time .good luck to you

motorcycleguy said:

Eileencj,

I'm glad to hear he's getting radiation only (no chemo). That probably means you caught it early.

My guess is that cool mist humidifiers would tend to help.

In my opinion, the best advice is for him to get a ride to the first couple sessions, and see how he feels. Your husband looks pretty hardy, though - so I suspect he will be fine.

Radiation is kind of like an accumulative sunburn. Get lotion (or at least recommendations) from your Oncologist. They may give you free tubes of it. Use a lot of it, and often!

I'm glad your husband has you in his life, to help him eat right, and keep his spirits up!

I wish you both the best possible result,

mg

 

Hi MG, thank you for your kind reply. My husband goes for a total of 35 treatments, he doubles up on Fridays. Last treatment is on or near Xmas Eve. Hope Christmas goes by super fast!I got him a good Protein powder to mix in his smoothies. Praying it will be manageable for him. Thank you!

BeagleDad said:

We are entering this storm together

Wildman ... I was just diagnosed last week, and have PET scan scheduled this coming Monday.  Looks like you and me might be going through all of this on a similar timeline.  Mine is HPV16 positive and in left tonsil with swelling in nearby lymph node.  Will have more info Monday.  My Dr. wiill be making all treatment recomendations Monday as well.  Is yours hpv+ as well?

I am sure you are about as excited to have this as I am, but I gotta tell you, I am pleased (is that a bad word here?) to have someone to go through it with me like yourself.  I hope you find sharing this experience with another helpful.  

I have been all over the superthread, and found several folks here that have gone through all this and are living good lives.  Overall, it sounds pretty icky, painful, and tiring .. but as compared to some folks with the cancer diagnosis, quite promising.  

I wonder how my skin will react, how I will deal with the dry throat, new oral hygiene regimines, eating or consuming calories of any sort.  At this point, I do not *feel* as though I will have some of the issues I have read about regarding the mask as I have no claustorohobic tendencies..in fact, I kinda prefer operating out of small "cockpit" like offices.  Of course, this is only conjecture; no telling what will or will not bother me as I ride out this storm.  

For me, my biggest concern (at least now) is my ability to continue to work.  Some have said they worked throughout their treatment..others have said it would have been impossible.  I am hoping and praying that I will be able to work as that not only helps me finaincially, but also with the joy of being around my coworkers and contributing to the success of the operation  I get moral boosts.  Ya know, something to look forward to besides the ICK.    

Sorry for typos as both my little fingers are arthritic (years of being a computer tech) so please bear with me.  

I am a tad older than you ...58 here...I'll be "celebrating" my 59th birthday on treatment.  One for the books, eh?  But I do not want to complain ..many others have so much more to complain about legitimately.  But that is just me ...if complaining helps you, by all means, I'll be glad to hear it.  

I hope that we can be moral and other support for each other as we board this train headed for the unknown.  I have not yet figured out how to PM around here and I think they remvoe email addresses if I leave them.  But if you are on FB, feel free to look up "Hugh Akston" ... my profile pic is me standing in a black shirt with the letter Q on it.  From Bella Vista,Arkansas.   

Good luck, sir.  Let's do this and lets NOT let the turkeys get us down!

Don - Beagledad  

 

Hi - I hope you are doing well with your treatment! My husband starts next Thursday for 35 rounds.  He doubles up with radiation on Fridays. He, like you has tonsil cancer leftside. My husband won't be getting chemo. I got him a cool mist humidifier, and a good juicer and a good protein powder for smoothies. If you have any more tips for me to make it more comfortable for him I would highly appreciate it.  Pls advise how its been like for you.  Wishing you the very best, Eileen 

Eileencj said:

My husband starts radiation on Thursday an

Hi MG, thank you for your kind reply. My husband goes for a total of 35 treatments, he doubles up on Fridays. Last treatment is on or near Xmas Eve. Hope Christmas goes by super fast!I got him a good Protein powder to mix in his smoothies. Praying it will be manageable for him. Thank you!

I am glad to help as much as I can. Did your husband start treatment, this week?

I hope the smoothies work out for him - they certainly did for me. If you PM me on here, I'd be glad to plug you into my GF. She was the one that worked the magic with the nutrition, for me!

The good news about treatment, is that although it seems to take forever when you're going through it - you'll soon be looking back on ringing that bell and starting on the path to recovery!

Hang in there. It will be challenging at times - but you will both get through it!

mg

Hi, Did anyone use this product for dry mouth or did you use something different?

My husband starts radiation on Thursday. Other than the special toothpaste and flossing did you do anything more to keep your teeth healthy?

Thanks kindly, Eileen