Hi To All!

I am john and have been here for a couple of weeks now, but did not have the energy or will to join.

i am a 47 old male nonsmoker with Stage III tonsil cancer

the story begins with an ear ache in Jan 08 

My local dr gave a week of antibodicts then sent me to the ENT after no responce

the ENT took a biopes that came cack nonconclusive but worrsome so he wanted to do a tonsilectomy and send it to Sloan for biosy!!!!!!!!!

 That threw me over the top My sister had died 22yrs earler at 21yr from breast cancer and I was crazy with fear. also I live in a beautiful place to vacation but not the greatest for medical.

thankfully i am three hrs from NYC so i did have options.

it has been one hell of a ride so far. I wnt in to Winthrope hospital in Mineola to another ENT dr Zelman and we where off:

He did a CT scan that day and we found a 3cm mass on the tonsil, then a fine needle biopsy of the lymph nodes on the right side, that was negative (great news!! i thought) so he says still not sure what it is he scheduals a surgical biopsy and maybe tonsilectomy to remove mass

well surgery goes well, the mass is cancer squamas cell caecenoma, can not be all removed because of location to cardic artery. he said that within 10 minutes of the start of suegery i was going to radiation treatments for my cancer.

 i meet with Dr Haas of winthrope radiation and he sends me for a PET  scan, the PET scan confirms the tonsil and puts a lymph node above suspitious, so I am sent to the medical oncoligist for chemo as well as radiation (so much for the negatvive needle biopsy)

I have had 35 radiation treatment 5x/wk and three sections of cysplatian, i have had a 2hr drive each way to get my radiation and on the chemo my wife and i have stayed over in Garden City. The chemo is very long 3hrs of hydration then 2hrs chemo and meds then 3 more hrs of hydration, with radiation on those days as well. the chemo is given 2days back to back.

i am in my last week of radiation and really running out of gas!!

starting to lose my voice, pain getting worse, but Perrcoct are helping a little there I have the Peg (what a life saver for me) so getting hydration and Jevity 1.5 for nutrition.

does your voice come back??

How long after last treatment till feel a little better?

sorry this is so fragmented

john 

 

 

 

 

Hi John, 

            After my Radiation treatments, my voice was just a whisper. My voice has come back to normal, it took awhile. I don't remember how long it was, people would tell me I sounded just like I did before.

           It was about a month after the treatment that I started to get some more energy daily. But I was told that the Radiation would effect me for roughly 1 year. I did have days that I felt good for 3 or 4 days and then bang, felt weak for about a day or so.

           Each person is different. Take Care.

John,

You have certainly come to the right place to get info from experience.

My husband has just started radiation and chemo this pass week. Same senerio as you as far as squamous cell involving right tonsil and two lymph nodes. Larry is geared for radiation 1-2 times daily and Cisplatin weekly for 6 weeks.

I hope you find comfort in knowing you are not alone. Involve your family in reading this web site and they can help you to answer and post questions if you are too tired. Ask them to search through previous messages posted too---knowing what to expect certainly helps. 

Take care and I will pray for you,

DeniseB

Hi, John.

You'll get your voice back, probably starting about a month out of treatment. I'm 7 months out right now and speak with a little blues singer rasp, but much better than I was. About the same time your voice comes back, you'll start to feel better and your mucousitis will be stopping.

Go back and read some of the posts here about how people cope with the various side effects of chemo/rad/surgery. There is a lot of knowledge here you wont get from the doctors.

Anything you want to know, just ask, the people on here should have all the answers you need.

Best Wishes, Mike

Hey John, I am friends with Pam and she told me you were on a "board" ...figured it was this one as I have been all over this since January myself. She sent me all your suggestions. Thanks! my only problem is that I can hardly swallow my own saliva without bringing tears to my eyes.. so yes, i also thank God I put that Peg tube and wasnt my normal stubborn self... It happened so quickly! Everyone wants know the same answers about how long after treatments this hell lasts. Well I told my doctor to pretend and take a stab at it knowing me.. he said (with fair warning and assuring me this is just a guess) that it would be 3-4 months till the tube came out and all that..... I want to make it happen sooner but we'll see. I am going to Stony Brook daily for my 34 treatments. Thats a 120 mile roundtrip from sag harbor each day. Some days i get a buddy to take me and a lot of times I go by myself. I watch out withthe percosets on driving days... As of today I am halfway through it all. Each week I have a session with Cisplatin and Taxol ... I cannot cut this cancer out. It is in a place at the base of my tongue that makes surgery out of the question. So they are zappin the h##$ out of it! I rarely want to talk and my mouth fills with what little salive I ahve left and constantly have to use a spit cup. My tonque is and hard palette showed signs of thrush / muscositis so Dr. gave me an antibiotic which I crush and take through the tube.I feel like the end is in sight and all but man this is tough stuff huh? My hair is starting to come out in back... sort of in line with the front of my face/neck where they are concentrating the IMRT treatments. The beard is falling off too. You are further ahead of this than I am and so would like to see how you fair after you are all done... Seems like we have a same physicals/age/situation.... I am using fresh cut aloe too with all the clavicle neck burns, side of throat etc.... i get it at King Kullen or Amagansett IGa has it too. I'll check back in later John, Good luck to you and to everyone else out there in this situation...

Hi paul,

great to hear from you

i start my last week tomorrow at Winthrope in Garden City 200 miles round trip from Montauk and boy am i over it! I hope that some of the info i gave Pam can help, the Juven is very helpful with my mouth sores and the Mucus the CoQ-10 has also been helpful.  

 I have tonsil cancer and and as with you sergery was not an option for it too close to the cardic artery so I am doing 40 radition treatments at GC and 6 cysplatin as well

i am glad the chemo is over not that it is great but it is a little less horible now that that is a week ago.

 I have bben totally fouused on when this will get better and so far have heard that it takes about three weeks to feel better and each day a little better. The peg tube will need to be in till you get a negative PET scan
 and are eating well enough to put the weight on you have lost. I have lost 22lbs to date but I still am getting down some real food everyday. From the three weeks it gets better but it will take a long time for things like saliva and taste buds if we even get them back?? that is my big concern but as I have tried to say the whole way "It Is What It Is"  some people say that it takes one month of recovery for every week of radiation so I am looking at 8 months to get back in too shape????

scrambled eggs in the morning and some paste and chicken broth in the evening and small can of pears have been easy to get down as well, even when it is tough i do the pergoct and then just push even if it takes over a hour.. 

nice to meet lets keep in touch and we will get threw this Hell

 

john