Any Info will help

cid817 said:

Grandmax4

Can I ask where you are located?  My hubby was diagnosed with tumor on the epiglottis with 2 nodes affected.  ENT told him they may do surgery, depending what the PET scan shows.  He's about 9 weeks out of treatment, PET is scheduled for Feb 17.

Thanks

I am located in Ohio, about 45 miles north of Columbus, our capitol. My surgery was done at the Ohio State University Waxner Center, The James Cancer Clinic. You state your husband is about 9 weeks out of treatment, I assuming he had chemo and/or radiation.

I was given the choice of surgery, with the possible need for chemo/radiation, but the surgery took care of the cancerous tumor and the lymphnodes came back benign so I did not have to have either. My surgery was done using the di vinci robot, My surgeon is/was Dr Richardo Carrau..he is an amazing, educated man..I love him and my team.

At the time, I was told I had this cancer, I didn't even know what an epiglottis was/is. Believe me, I've learned.

The recovery from the surgery was rather quick and painless or very miminal..the side effects and relearning taken for granted body functions took longer. I had a feeding tube down my nose for about 4 months and throughout this time was seeing a speech therepist weekly. Without an epiglottis, swallowing has to be relearned..my vocal cords were also bowed, so I trained and exercise to regain my voice.This took about a year to happen

Today, 2years and 3 months out, I can speak loudly and clearly, and I eat everything ..I've never had problem of dry mouth, but the mucus has lingered, but not near what it was and I deal with it.

I pray your husbands cancer was removed with treatment and the PET is clear...if not, surgery tho not an easy road, is doeable ..just do everything your team tells you to, I was a real brat at times to my therepist and I've apologized to her many times.

Best of good wishes to you both

DM1 said:

Good Morning

GM all, I just received a call from my ENT. The PET scan shows that the cancer has not spread anywhere else . 1st appointment Thursday with cancer center about radiation, then Friday with the oncologist. Happy but still nervous.

 

 

 

Mike

Very happy to hear that the cancer has not spread. That is fantastic news. I know what you mean about your girl and family worrying. My 19 hour surgery and recovery was harder on my family than it was on me. (My cancer was of the jawbone).  Radiation was the most difficult for me but we are all different. I did lose 65 pounds and did have a g-tube where I took in Ensure. I had the weight to lose. The best thing you can do at the present time is to try to put on some weight. Throughout tx know that hydration and nutrition are key. I found the actual radiation txs were a piece of cake, each lasting only about 15 minutes. It was the side effects that were difficult. My suggestion is to be aware of side effects but also know that you likely won't get all of them so don't dwell on what may never happen. Take them as they come and deal with them. I did not have issues with mucus and while my neck turned dark it never broke open or hurt. I did have to deal with horrible sores on my lips but none inside of my mouth. I slept allot! 

Know that you are not alone on this journey and don't hesitate to ask any questions.

God bless,

Candi

DM1 said:

Good Morning

GM all, I just received a call from my ENT. The PET scan shows that the cancer has not spread anywhere else . 1st appointment Thursday with cancer center about radiation, then Friday with the oncologist. Happy but still nervous.

 

 

 

Mike

mike, super news that the cancer hasn't spread.  now you can concentrate on the tx and kick'n cancer's butt!! 

God bless,

dj

DM1 said:

Good Morning

GM all, I just received a call from my ENT. The PET scan shows that the cancer has not spread anywhere else . 1st appointment Thursday with cancer center about radiation, then Friday with the oncologist. Happy but still nervous.

 

 

 

Mike

Mike, great news that the cancer hasn't spread.  that is really good news and since it's isolated to the tonsil and lymph nodes only it is a very winnable battle.   the meeting with the radiation department to get fitted for your mask and getting shown around the facility is an anxiety filled event as you don't know what to expect but it's coming at you pretty fast.  Those feelings are normal and just remember that you can't finish your treatments until you start them, and the sooner you start the quicker you can get them all behind you.  

Are you having a tonsillectomy before you start treatments?  I had to wait 3 weeks after my tonsillectomy before I could start radiation.    Ask your doctor about Erbitux as your chemo drug because it's much easier on you than the others I've read about on this site and it is very effective against HPV type, or at least it was for me.  

One you start radiation you will deal with a lot of side effects from the radiation so don't hesitate to tell what you are experiencing and you'll receive many very useful suggestions to help deal with them.   

Good luck and stay positive.  you can and will make it but as Don says, treat the pain, get plenty of rest, stay hydrated and nourished.  

all the best,

keith

DM1 said:

Thank you

Thank you everyone who has replied Tomorrow will be my PET scan then 2 appointments with the DR.s next Thursday and Friday. I guess after that will be the plan on how to beat this. I am 50 years old and only weigh 145 lbs. I read that a lot of people loose lots of weight which is another concern for me. Thank you again everyone.

 

 

Mike

Hi Mike - I had the same, found in October 2013 - I started treatment at Thanksgiving and finished mid January just over 2 short weeks ago.  I had chemo once per week and radiation treatments daily - my H&N specialist recommended against surgery so I went with his recommendation - one of the key aspects my docs pointed out was the welfare of the patient - so limiting chemo where possible as far as dose and frequency as well as radiation/chemo versus surgery/radiation/chemo - I am waiting for mid April for the PET/CT to see if it is gone - as many have said the treatment is hard but doable - I had a PEG put and a port prior to treatments - the PEG has proven itself here at the end - the last week of treatment was toughest - and I lost my voice because my throat was too sore - and I had to stop drinking ENSURE and start in with PEG feeding and PEG hyrdration - important - hyrdration - really important - so now I am trying to ween off of the PEG feeding - but taste takes 1-6 months to come back - I am eating yogurt now and pudding  - will try soups this week again as well - one other thing I had done which was recommended by the H&N doc was having the salivary gland on the good side moved to try and preserve it from the radiation treatments - as saliva production is a problem.  You will no doubt need to see to your teeth as well before starting - ask if they have said nothing about it yet - I was fortunate, others have not been as fortunate - my teeth were in good shape - you will most likely need to get fluoride trays which I have to use for the rest of my life (God willing a long one).  Just a few things - this is a terrific site, with incredible people who define care and compassion and empathy as well as positive energy and help and drive and passion to live and conquer this - please avail yourself of them (us) and lean when you have to, anytime.

Steve

DM1 said:

Thank you

Thank you Keith, my Dr. does not want to remove the tonsil. I can't believe that I haven't even started treatments and am so drained I am a work aholic and not use to being tired all the time. Tomorrow will be my onocolagist appointment and hope we can get this rolling. Thank you again Keith .

 

 

 

 

 

 

Mike

mike, maybe it's better not to have the tonsillectomy if they think they can cure you without it.   I was 56 when I was diagnosed and when the tonsil was removed and it was rough (I lost 12 pounds before I started radiation) and I never fully recovered before starting treatments. 

Good luck tomorrow and please keep us posted after your meeting with the Doctors.  

Keith