Stage 3 Tonsil Cancer- 16 Months Post Treatment-How are you??

Joanielo

Hi Friends,

I am 16 months out from treatment (35 radiation and 3 chemo).  I am wondering if there is anyone else here around the same time after treatment and if so, how are you doing?  What after treatment effects are you dealing with?  How are your taste buds and saliva glands?  How are you doing with eating and swallowing?  I just wanted to compare notes with someone in the same boat as myself.

Thank you

 

CivilMatt

16 monthts ahhh I remeber it well

Joanielo,

Too bad you did not want to compare with 2+ years post, I would have obliged you.  I would have told you the dry mouth saliva production and taste buds are still improving and that I can eat and drink most anything, but I will refrain so that your 16 month buds can chime in.

I hope all is well and at 16 months you should have lots of improvements.

Keep getting better,

Matt

Guzzle

CivilMatt said:

16 monthts ahhh I remeber it well

Joanielo,

Too bad you did not want to compare with 2+ years post, I would have obliged you.  I would have told you the dry mouth saliva production and taste buds are still improving and that I can eat and drink most anything, but I will refrain so that your 16 month buds can chime in.

I hope all is well and at 16 months you should have lots of improvements.

Keep getting better,

Matt

Treatment

Hi, I start exactly same treatment next week. How are you doing now? Cheers, G

debi4109

Guzzle said:

Treatment

Hi, I start exactly same treatment next week. How are you doing now? Cheers, G

Hi Guzzle, i only have 5 more

Hi Guzzle, i only have 5 more radiation treatments left !!!!    had 33 rads to the L tonsil area and 8 erbitux instead of chemo.  very painful mouth sores were my problem for about 6 days in there, finally dr gave me a stronger swish and swallow medication that worked, just woke up one day, sores gone!!!!!  Just do all they say as far as mouth/teeth care, and hang in there!!!!!!

lorig01

18 months out for me

HI. I am 18 months after final treatment for stage III tonsil cancer, (T1N1M0).   Glad to hear you are doing well. I am doing great.  In the last few months I got most of my energy back and I can eat almost anything.  I only like meat if it is in sauce or gravy. Too dry.   Most everything else tastes about 75 - 80%.  About 3 months ago I started having gallbladder attacks so I had to watch my fat intake. Had my gallbladder out 2 weeks ago and now feel really great.  Physically I feel really good.  I do have some depression though. I just had my thyroid checked and they said it was OK.  I will however go to an endocrinologist in a few months if I am still down.  I think my depression stems from fears of recurrence and future issues. I try not to think about it but it sometimes is hard to contain.  When I can resume Yoga and aeorobics then I know i will feel better.

How are you doing?  Hope you are doing well.

 

PJ47

lorig01 said:

18 months out for me

HI. I am 18 months after final treatment for stage III tonsil cancer, (T1N1M0).   Glad to hear you are doing well. I am doing great.  In the last few months I got most of my energy back and I can eat almost anything.  I only like meat if it is in sauce or gravy. Too dry.   Most everything else tastes about 75 - 80%.  About 3 months ago I started having gallbladder attacks so I had to watch my fat intake. Had my gallbladder out 2 weeks ago and now feel really great.  Physically I feel really good.  I do have some depression though. I just had my thyroid checked and they said it was OK.  I will however go to an endocrinologist in a few months if I am still down.  I think my depression stems from fears of recurrence and future issues. I try not to think about it but it sometimes is hard to contain.  When I can resume Yoga and aeorobics then I know i will feel better.

How are you doing?  Hope you are doing well.

 

Hello

I encourage you to start back with some light Yoga stretching and then when you feel better back to low impact aerobics.  I never stopped Yoga Zumba and aerobics during my radiation and 2 feeding tube surgeries, just adapted my movements (could not do a lot of moves) and I believe it lifted my spirits each time, plus the women in my classes were so supportive and encouraging.

 I used a Yoga DVD at home to help when I had SCC tongue base surgery and neck dissection called Hatha & Flow Yoga for beginners.  I am not a beginner but it was perfect to increase flexibility and dissolve stress.  I credit thie Yoga for giving me back my shoulder range of motion and strength and helping me get through much pain following surgery and treatment.

Also going to an endocrinologist is most definitely a good idea as depression can be caused by low thyroid levels.

Good luck to you in your recovery and 

Namaste and Aloha,

PJ

cureitall66

Treatment effects....

Joanielo-

My loved one that went through tx read your post and wanted to respond with the following:

"I'm out 17 months. 35 rads, 7 chemo. Throat still dry at times, always drank alot of water before so not a big deal. Salivia is pretty much back to normal. Swallowing is about 80-90 %. Taste buds are not back to where they were before, some things taste the same some don't, probably around 75% back. No real pain except some throat irritation with spicey and tart food and a little in the ears when I yawn. No big deal though. Have been dealing with arm pain and mobility so started taking a mild antidepressant to fool the brain and B Complex vitamins. Arms getting much better. Hope this helps." - K

`C

 

 

Guzzle

cureitall66 said:

Treatment effects....

Joanielo-

My loved one that went through tx read your post and wanted to respond with the following:

"I'm out 17 months. 35 rads, 7 chemo. Throat still dry at times, always drank alot of water before so not a big deal. Salivia is pretty much back to normal. Swallowing is about 80-90 %. Taste buds are not back to where they were before, some things taste the same some don't, probably around 75% back. No real pain except some throat irritation with spicey and tart food and a little in the ears when I yawn. No big deal though. Have been dealing with arm pain and mobility so started taking a mild antidepressant to fool the brain and B Complex vitamins. Arms getting much better. Hope this helps." - K

`C

 

 

mobility

Joanielo, I don't know if you had a neck dissection but if you did I am told ongoing physio is really important. The excercises are simple and can be done at home. I havnt been effected massively but have very slight stiffness. I would imagine yoga would be great and when my therapy excludes other excercise I will give it a go. Apparently you can get yoga, acupunture and various therapies on the NHS now! So I am certainly going to ask the question! Thanks and I hope I am as tough as you. G.

Guzzle

debi4109 said:

Hi Guzzle, i only have 5 more

Hi Guzzle, i only have 5 more radiation treatments left !!!!    had 33 rads to the L tonsil area and 8 erbitux instead of chemo.  very painful mouth sores were my problem for about 6 days in there, finally dr gave me a stronger swish and swallow medication that worked, just woke up one day, sores gone!!!!!  Just do all they say as far as mouth/teeth care, and hang in there!!!!!!

deb

thanks deb. What was the mouthwash product? And happy Easter,G.

KB56

debi4109 said:

Hi Guzzle, i only have 5 more

Hi Guzzle, i only have 5 more radiation treatments left !!!!    had 33 rads to the L tonsil area and 8 erbitux instead of chemo.  very painful mouth sores were my problem for about 6 days in there, finally dr gave me a stronger swish and swallow medication that worked, just woke up one day, sores gone!!!!!  Just do all they say as far as mouth/teeth care, and hang in there!!!!!!

5 more treatments.

Debi, I had almost exactly the same treatment as you but  I had 7 Erbitux and 34 radiation treatments.   I tried to talk the Doctor to stop at 32 which was a Friday but he would have no part of it:). 

You are almost finished and probably feeling really crappy about now:-(.   hang in there as I'm about 10 months ahead of you and really feeling great theses days!   People take "normal" for granted and maybe our " normal" has a couple of extra things to deal with but it's nothing you can't live with.  if you follow the "typical" course you'll start to feel better about 2 weeks after your last radiation treatment and the improvement will be gradual but your body's busy fixing all the things the chemo and radiation created.  .  My throat was pretty sore for a few months and it took a little while to get all your tastes back but one day your throat will stop hurting and you'll start tasting things again.  Something we all took for granted before but never again.  

 

Good of luck as you wrap this up.   Congratulations on making it this far and next week you will be finished!

 

Keith

Hard12Find

pretty close in time...

Joan,

I am 16 months post treatment for stage 4A tonsillar SCC, I am doing better little by little, and definately adjusting to some things that will probably never be the same. I have most of my salty savory and sweet taste back to some degree or another, however my throat is still very constricted, so my diet consists of soup, scrambled eggs, oreo's and whole milk, and ice cream. I can not stand the thought of sour tastes..or vanilla thanks to supplements during treatment.  I had lost 70 lbs during treatment, and now at a healthy weight, however my stamina is nowhere where it used to be....I have to mow the lawn in spurts, as with most other physical activities, I also had hearing loss from the cisplaitin, and now have tinnitus in both ears, and I think I have lost somewhere around 40% of my normal hearing, my ears pop real easily now, like when I blow my nose....

My saliva production is low, and especially noticable at night, I wake up with leather tounge pretty regularly, My PTSD has calmed down, but I still don't sleep real well...night sweats are gone, but just not sleeping soundly even with ambien, or over the counter sleep aids...

All in all I am getting more like my old self, my sense of humor has returned, as has my interest in hobbies....

Hope you are doing this well or better....

Jim

 

pilotbob3

Hi Joanielo,
Just chiming in

Hi Joanielo,

Just chiming in to let everyone know I'm at the same position, about 16 months post treatment for Stage 3 SCC tonsil cancer, T3N1M0. Totally clean bill of health thanks to great team of Onc., RO and ENT so that's the wonderful gift I've been given (and earned).

8 rounds of Erbitux, 35 rounds of radation. Lost about 40 pounds, but have recently gained 20 back. Pain was manageable throughout, no port, but the thoat sores and thrush made it difficult to eat anything more than chicken noodle soup for months. I remember having to take the little chicken pieces out because they hurt too much to eat...

Anyhow, it took me about a year before I was really able to eat most foods again. It was slow to progress, as most foods I could swallow just tasted bad. I lost my taste buds, and suffered badly from dry mouth.

Anyhow, as my RO mentioned to me, progress was not day by day improvement, but month by month. As I've learned from the great people on this board, improvement did not go in a straight line either. I would say that my main problems after the short term effects (pain, nausea, thrush infection) were the feeling of my mouth being "coated" and food tasting bad. I am only now starting to lose the "coated" feeling in my mouth. Figure that maybe my saliva glands are working a bit better. I tend to think the chemistry of the saliva changed, and is slowly returning back because foods that were very hard to disgest in mouth, are slowly coming back to me. Example might be chocolate, that has the feeling of melting in the mouth. For me, chocolate would be grainy, sandy like, when in the mouth. Now, it's becoming more like normal.

One effect I have not seen mentioned here is the dry mouth causing gagging. It took me a long time to realize that a lot of the nausea I felt was actually caused by the dry mouth drying the back of my throat. Even now, I have to have water by me constantly, esepecially when going outside because if my throat dries I will gag almost uncontrollably. A sip of water and the feeling's gone.

Also, felt like my "new" cells that replaced those removed from radation, was almost like creating a new mouth/tongue/throat for me. At first, anything with any spice to it would burn intensley. Now, I'm finally able to eat a bit more spicy foods and enjoy the flavors.

So, I'm encouraged not only by the clean bill of health, but on the slow progress of the enjoyment of food. I never really understood the importance of food from a comfort and quality of life aspect. Now I'm enjoying enough again to have my old problem of gaining too much weight back!

I don't get the opportunity to comment much here, but wanted to voice a word of general thanks to all members who are able to contribute. Your experiences of going through things were invaluable to me in getting through this challenging disease.