1. < Head & Neck Cancer

New cancer 2 months after TORS Surgery chemo+radiation

Posted by phyllisg @phyllisg, Apr 16 5:57am

My husband had extensive TORS surgery Jan 25 for HPV + SSC. While hospitalized for aspiration pneumonia catscan showed cancer is back and biopsy revealed it's deeply embedded behind where tonsil was. He has to go to rehab for PT to regain strength before starting concurrent chemo + radiation. How hard is this on a 76 year old who was in good physical health 6 months ago? Looking g for suggestions or advice from experience of others. Thank you.

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mjsweeney205 | @mjsweeney205 | Apr 29 1:33pm
In reply to @phyllisg "My husband has not started chemo and radiation since the cancer was not all gotten with..." + (show)
@phyllisg

My husband has not started chemo and radiation since the cancer was not all gotten with TORS. We have not seen the results of the Petscan and will meet with oncologists in next 2 weeks. How bad will the chemo and radiation get? He is in constant pain now from nerve damage to right side of head and neck and jaw. I'm so confused. I have an arsenal of pain meds but from many doctors and don't know what to give and what I can give together so just try different things. Hoping one of his doctors, maybe ENT surgeon, will help. He has a pain management doctor but he was his doctor during back surgery. Don't know if he will help now. May refer us back to oncologist. Hoping they will be able to give him a pain management plan that will keep the pain tolerable. What is the med of choice now for nausea during chemo or does it differ for all. Guess I'm premature here and will get the answers in the coming weeks. I find these blogs very helpful and hopeful. Thank you to all~

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Your Doctors should have already provided the pain med scripts as well as the anti nausea med
I was told to use the anti nausea med as a last resort because it can really bind you up

REPLY
roblem | @roblem | Apr 28 10:53am
In reply to @phyllisg "I love the med log sheet and will definitely use it!! But I thought you could..." + (show)
@phyllisg

I love the med log sheet and will definitely use it!! But I thought you could not record in a doctor's office??

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Never had any of my doctors or others and I have seen many over the years not allow it and some actually were glad so important information is not missed. I have done this in 2008 with my first tonsil cancer and more recently this year for my tongue cancer.

Best of luck with the journey.

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phyllisg | @phyllisg | Apr 27 1:09pm
In reply to @roblem "Two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options..." + (show)
@roblem

Two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds was one I recorded every appointment with every person I was in contact with.

One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record providers so I could always go back and play so nothing is missed.

Second, for meds I used this attached pdf to keep track.

Hope this helps ease some of the frustration.

Jump to this post

I love the med log sheet and will definitely use it!! But I thought you could not record in a doctor's office??

REPLY
1 reply
roblem | @roblem | Apr 27 12:21pm
In reply to @phyllisg "My husband has not started chemo and radiation since the cancer was not all gotten with..." + (show)
@phyllisg

My husband has not started chemo and radiation since the cancer was not all gotten with TORS. We have not seen the results of the Petscan and will meet with oncologists in next 2 weeks. How bad will the chemo and radiation get? He is in constant pain now from nerve damage to right side of head and neck and jaw. I'm so confused. I have an arsenal of pain meds but from many doctors and don't know what to give and what I can give together so just try different things. Hoping one of his doctors, maybe ENT surgeon, will help. He has a pain management doctor but he was his doctor during back surgery. Don't know if he will help now. May refer us back to oncologist. Hoping they will be able to give him a pain management plan that will keep the pain tolerable. What is the med of choice now for nausea during chemo or does it differ for all. Guess I'm premature here and will get the answers in the coming weeks. I find these blogs very helpful and hopeful. Thank you to all~

Jump to this post

Two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds was one I recorded every appointment with every person I was in contact with.

One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record providers so I could always go back and play so nothing is missed.

Second, for meds I used this attached pdf to keep track.

Hope this helps ease some of the frustration.

Shared files

Medication_Log sheet (Medication_Log-sheet.pdf)

REPLY
1 reply
phyllisg | @phyllisg | Apr 27 8:48am

My husband has not started chemo and radiation since the cancer was not all gotten with TORS. We have not seen the results of the Petscan and will meet with oncologists in next 2 weeks. How bad will the chemo and radiation get? He is in constant pain now from nerve damage to right side of head and neck and jaw. I'm so confused. I have an arsenal of pain meds but from many doctors and don't know what to give and what I can give together so just try different things. Hoping one of his doctors, maybe ENT surgeon, will help. He has a pain management doctor but he was his doctor during back surgery. Don't know if he will help now. May refer us back to oncologist. Hoping they will be able to give him a pain management plan that will keep the pain tolerable. What is the med of choice now for nausea during chemo or does it differ for all. Guess I'm premature here and will get the answers in the coming weeks. I find these blogs very helpful and hopeful. Thank you to all~

REPLY
2 replies
mjsweeney205 | @mjsweeney205 | Apr 26 1:51pm
In reply to @hrhwilliam "Hello @mjsweeney205 and welcome to the Head and Neck group. I am sorry for not getting..." + (show)
@hrhwilliam

Hello @mjsweeney205 and welcome to the Head and Neck group. I am sorry for not getting a welcome out to you sooner, been under the doctor's knife myself. Anyway you are going through the wonderful one-hundred year old idea of zapping the body with radiation in hopes the cancer dies before you do. It usually does. And because you are not feeling bad enough, lets' give you some Chemo to wipe that smile off your face.
The radiation will continue to bring you down for several days after you are done with the treatments. Taste and smell usually takes from a few days to a few weeks before it begins to return, and it seems to never return exactly like it was before. Who knows? Maybe you will finally like the taste of rutabaga.
Try to eat what you can and drink everything you can. I tell people to eat a whole pie if that what you want. Calories are what you need over anything else.
I went through this in my late forties. I can only imagine what you are going through now as you are just a few years older than I am currently. Not sure I would want to do it a second time. It's a heck of a fight you are in. Know this: a year from now you will be back to the links and driving the scooter everywhere. Two years from now you will feel a whole lot better.
If you have questions, I or someone here has answers. In the meantime, just get through each day as it comes. Don't let the Old Man in! You are not done yet. We got this.

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Thank you for the encouragement. Everything you said is true.
3 more rad treatments to go.
Feel like total crap.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 26 11:25am
In reply to @mjsweeney205 "I was diagnosed with tonsil cancer back in February. SCC HPV16 pos. Tors was not recommended..." + (show)
@mjsweeney205

I was diagnosed with tonsil cancer back in February. SCC HPV16 pos. Tors was not recommended because of deep tumor behind tonsil and very hard to get to.
I’m on my 27th radiation treatment and third chemo ( cisplatin was not an option as I have severe hearing loss)
So I have 8 more Rad and 1 more Chemo left. I’m a 75 year old healthy male and nevertheless I’m getting the crap kicked out of me. The pain meds do help. Dr is telling me 6 weeks after last treatment I’ll be at 50%
Right now no sense of taste at all and very little smell. Hurts like hell to swallow and am going to speech - swallow therapist that seems to help.
To think 3 months ago I was golfing 3 times a week, riding my motorcycle all over the country and just enjoying retirement!

Jump to this post

Hello @mjsweeney205 and welcome to the Head and Neck group. I am sorry for not getting a welcome out to you sooner, been under the doctor's knife myself. Anyway you are going through the wonderful one-hundred year old idea of zapping the body with radiation in hopes the cancer dies before you do. It usually does. And because you are not feeling bad enough, lets' give you some Chemo to wipe that smile off your face.
The radiation will continue to bring you down for several days after you are done with the treatments. Taste and smell usually takes from a few days to a few weeks before it begins to return, and it seems to never return exactly like it was before. Who knows? Maybe you will finally like the taste of rutabaga.
Try to eat what you can and drink everything you can. I tell people to eat a whole pie if that what you want. Calories are what you need over anything else.
I went through this in my late forties. I can only imagine what you are going through now as you are just a few years older than I am currently. Not sure I would want to do it a second time. It's a heck of a fight you are in. Know this: a year from now you will be back to the links and driving the scooter everywhere. Two years from now you will feel a whole lot better.
If you have questions, I or someone here has answers. In the meantime, just get through each day as it comes. Don't let the Old Man in! You are not done yet. We got this.

REPLY
1 reply
goffrey | @goffrey | Apr 23 1:52pm

I had HPV+ SCC base of tongue cancer and underwent chemoradiation for it after induction chemotherapy at Mayo Clinic. Since your husband is in good healthy he can get through this. I would see if Proton radiation is a possibility since it isn't quite as hard on the body. Did your husband have any chemotherapy or radiation after his TORS surgery? Yes chemoradiation is hard but there are several things they can do to help lessen side effects.

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phyllisg | @phyllisg | Apr 21 7:59pm
In reply to @mjsweeney205 "Please don’t give up on the swallowing excersizes even though I imagine it’s very painful. Hopefully..." + (show)
@mjsweeney205

Please don’t give up on the swallowing excersizes even though I imagine it’s very painful. Hopefully someday he’ll be able to smell, taste and swallow a nice steak, even though it might be in tiny bites washed down with water.
That’s what I’m hoping for.
Please don’t beat yourself up over the Tors operation as it was probably the best option at that time. I have about 9 lymph nodes that are also cancerous along with the primary tonsil.
According to my Dr the prognosis is still very good 90%
So we will see.

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Thank you so much for your comments and encouragement. That helps more than you know. I know the swallowing excercises will be more painful during radiation but I'm still learning. My hubby is pretty stubborn and I'm hoping that will be to his advantage.

Hugs and best wishes to you!

REPLY
mjsweeney205 | @mjsweeney205 | Apr 21 3:19pm

Please don’t give up on the swallowing excersizes even though I imagine it’s very painful. Hopefully someday he’ll be able to smell, taste and swallow a nice steak, even though it might be in tiny bites washed down with water.
That’s what I’m hoping for.
Please don’t beat yourself up over the Tors operation as it was probably the best option at that time. I have about 9 lymph nodes that are also cancerous along with the primary tonsil.
According to my Dr the prognosis is still very good 90%
So we will see.

REPLY
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