tonsil cancer

OhNoItsMe

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

Nutrition

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

Eileencj

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

wbcgaruss

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

Eileencj What Kind

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

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

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

 

big G

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

big G said:

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!

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.

Dave705

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.

Good Luck

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

motorcycleguy

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.

Wildman,

Your Oncologist may also give you free lotion.

I do recall my Dr. telling me to AVOID silver (or metallic) based lotions, as they can "scatter" the beam, when getting radiation.

So - it's best to stick to what they recommend!

I'm guessing at pressent you are 2 down, 28 to go on the Radiation.

It seems like forever, when you're going through it ... but you'll be ringing the bell, before you know it - and starting the recovery!

By the way, if food still tastes good - eat a LOT OF IT!!

I wish you the best of luck - hang in there, you'll get through this.

mg

johnsonbl

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

@Eileencj Look for Beagledads recent strings...

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!

 

Logan51

Aquaphor

I never had to buy any of it during my Rads because they had a basket full of the little tubes for Patients to take as many as they wanted/needed. I got blasted in 20 places, so they must have figured Aquaphor is safe to use. For me, it was the back of the neck where the Rads exited the body and maybe deflected off the table back onto my neck while clamped to with the good old skull mask.

Hoping the best for you, Wildman.

 

paintmatt

I just finished treatment in

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

 

Eileencj

wbcgaruss said:

Eileencj What Kind

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

My husband has Tonsil Cancer

Hi,

My husband has tonsil cancer. He is fortunate that they could pinpoint the area and will only do radiation on one side of throat. He begins this coming Thursday. Every Friday he gets radiation twice.  Thanks Russ!

Eileencj

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 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!

Eileencj

johnsonbl said:

@Eileencj Look for Beagledads recent strings...

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!

 

Awesome, thanks very much!

Awesome, thanks very much!

Eileencj

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 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 

BeagleDad

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!

Rads only or surgery too?

Best of luck to you and your husband.  My tonsil cancer was "found early" and isolated to small lymph node.  (HOwever, it seems to have expanded my left lymph to where the swelling is obvious and now pressing agsinst my ear).  I go in for TORS 11-24.  One very well known specialist in this area told me that with TORS I shoul dbe able to keep rads "in my back pocket", but the surgeon acted and spoke as if low dose rads were standard operating procedure after TORS.  So at this point I am expecting low dose rads (LDR) to begin some time shortly after healing from the neck dissectrion/TORS surgeries.  Looks like chemo will be out for me, but still hoping that the pathology of the lymph will prevent the rads...but seems like just wishful thinking.  We will see and we will all stay in touch here.  I had to chuckle...I leave hospital after TORS on Thnksgiving, and your hubby ends rads Christmas Eve .... 'tis the season, eh?    Please stay in touch ..and with Wildman .. he is going through chemo/rads RIGHT NOW so we three are all sort of going through this together.  
Don (aka Beagledad)

motorcycleguy

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!

Eileen,

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

Dave705

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!

Double treatments

Had the same thing, a double dose on Fridays. He may feel wiped out on Saturday. It made for a long weekend. Wishing him the best of luck with his treatments. He can do it. Stay strong and keep the faith. Dave

Eileencj

Xylitol mints or gum

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

OhNoItsMe

Eileencj said:

Xylitol mints or gum

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

Chemo

Will he be doing chemo too? I start my treatments tomorrow so we will be on the same pace it looks like. I am set to get 7 weeks rads and 6-7 weeks chemo weekly. I have already bought the xylitol mints but obviously can't give an experience yet.