Any Info will help

2

Comments

  • DM1
    DM1 Member Posts: 13
    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 live in Weare, New

    I live in Weare, New Hampshire. Had my PET scan today with disc in hand and ready for Thursday and Friday . My girl friend and I meet with the oncologist and the cancer center at the Elliot Hospital in Manchester. I hope thongs go well for your husband.

  • cid817
    cid817 Member Posts: 58
    DM1 said:

    I live in Weare, New

    I live in Weare, New Hampshire. Had my PET scan today with disc in hand and ready for Thursday and Friday . My girl friend and I meet with the oncologist and the cancer center at the Elliot Hospital in Manchester. I hope thongs go well for your husband.

    I'm in Fredericksburg, Virginia

    Good luck and positive thoughts on the results of your PET!!

    Thanks!

     

  • DM1
    DM1 Member Posts: 13
    KB56 said:

    Feeding tube

    Mike, I did have a feeding tube but you will see lots of "fors" and "against" on this site.  I lost 30 pounds with the tube and can't imagine what I would have done without it as I could take food, meds, and really important stay hydrated through it.    It really helped me when I needed it and couldn't swallow food but I was ready to get it out but if I had it to do all over again I would definitely go for the tube again.  If you get a tube make sure you are always sipping on water as you can "forget" how to swallow and that can be a big problem.

    Before you start treatment go to the denist and get a good checkup and a flouride tray.  The radiation can/will play hell on your teeth due to the saliva impact (saliva is key for dental health) and i still use it every night.  so far my teeth have help up OK but my dentist scared the crap out of me (he told my wife that was his intention as he's seen it go both ways) so I brush multiple times per day, floss frequently and really watch the sweets - couldn't taste the sweets for awhile anyway:)

    The fact that the cancer is HPV+ is actually great news as the long term survival rate is really positive and it typically responds well to chemo/radiation.  Avoiding a neck dissection is a really good thing.   If you get Erbitux as your chemo drug (much less toxic and damaging as some of the other drugs) it was pretty easy for me to handle after the first one.  Radiation was really tough but you will get through it and it's a means to an end with the end being cancer free.  Not trying to scare you but it is key to be mentally prepared as you start the treatments.  The first couple of weeks are not bad at all but week three it will most like start getting tougher.   Everyone handles it different so you may breeze through.

    Stay in touch as you go through the battle.  Stay positive, lean on friends and family as well as the great folks on this site, and before you know it you will have all of this behind you and get back to living life and I promise you that you will no longer take the little things for granted.   We're all changed by the experience and as I've told my wife, if everyone went through a little of what we all went through the world would be a friendlier, more tolerant place.

     

    Good Luck and stay in touch and let us know if you need anything!

    Keith

    Thank you

    Thank you Keith sooooo much evryone here is great . You have been very helpful for me and you are not scaring me at all , I am an up front type of person and want to be told how it is . Thanks :)

     

     

     

    Mike

  • phrannie51
    phrannie51 Member Posts: 4,716
    Are you really only

    70 miles from Boston?  Dana Farber is there....a GREAT place for a second opinion.  They see Head and Neck Cancer of every sort, every single day....

    p

  • DM1
    DM1 Member Posts: 13

    Are you really only

    70 miles from Boston?  Dana Farber is there....a GREAT place for a second opinion.  They see Head and Neck Cancer of every sort, every single day....

    p

    Dana Farber

    Thank you Phrannie the Elliot hospital is associated with the Dana Farber I wiil find out more this Thursday and Friday. 

     

     

     

     

    Mike

  • DM1
    DM1 Member Posts: 13
    KB56 said:

    Feeding tube

    Mike, I did have a feeding tube but you will see lots of "fors" and "against" on this site.  I lost 30 pounds with the tube and can't imagine what I would have done without it as I could take food, meds, and really important stay hydrated through it.    It really helped me when I needed it and couldn't swallow food but I was ready to get it out but if I had it to do all over again I would definitely go for the tube again.  If you get a tube make sure you are always sipping on water as you can "forget" how to swallow and that can be a big problem.

    Before you start treatment go to the denist and get a good checkup and a flouride tray.  The radiation can/will play hell on your teeth due to the saliva impact (saliva is key for dental health) and i still use it every night.  so far my teeth have help up OK but my dentist scared the crap out of me (he told my wife that was his intention as he's seen it go both ways) so I brush multiple times per day, floss frequently and really watch the sweets - couldn't taste the sweets for awhile anyway:)

    The fact that the cancer is HPV+ is actually great news as the long term survival rate is really positive and it typically responds well to chemo/radiation.  Avoiding a neck dissection is a really good thing.   If you get Erbitux as your chemo drug (much less toxic and damaging as some of the other drugs) it was pretty easy for me to handle after the first one.  Radiation was really tough but you will get through it and it's a means to an end with the end being cancer free.  Not trying to scare you but it is key to be mentally prepared as you start the treatments.  The first couple of weeks are not bad at all but week three it will most like start getting tougher.   Everyone handles it different so you may breeze through.

    Stay in touch as you go through the battle.  Stay positive, lean on friends and family as well as the great folks on this site, and before you know it you will have all of this behind you and get back to living life and I promise you that you will no longer take the little things for granted.   We're all changed by the experience and as I've told my wife, if everyone went through a little of what we all went through the world would be a friendlier, more tolerant place.

     

    Good Luck and stay in touch and let us know if you need anything!

    Keith

    more questions

    GM Keith, do you know how long after the 1st treatment the whole jouney takes to start feeling better ? I worry about my Girl friend and family as I know that they all worry. 

     

     

    Mike

  • Grandmax4
    Grandmax4 Member Posts: 723
    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

    Just came across this question

    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
    DM1 Member Posts: 13
    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

  • hwt
    hwt Member Posts: 2,328 Member
    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

    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

  • donfoo
    donfoo Member Posts: 1,771 Member
    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

    Hope you are eating like a pig!

    You will lose weight through treatment. It is rare the loss is not a concern. So, eat every fatty food you avoid and then eat more, then some more. No joke. You should do as much as possible to pack on some extra weight, especially as you are so light. I am a PEG hater but only if one can slide through with the expected loss. If you are thin now, I suspect you will need to PEG up at some point. Some debate about doing it upfront, others may wait until you really need it.

    As you have time, do check with your insurance and look for options to get a second opinion. Also, make sure your current process includes a tumor board review. If it does not, you then really have to get a second opinion from a facility that utilizes a team approach.

    Good luck,

    Don

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    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

    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

  • wmc
    wmc Member Posts: 1,804
    DM1 said:

    I live in Weare, New

    I live in Weare, New Hampshire. Had my PET scan today with disc in hand and ready for Thursday and Friday . My girl friend and I meet with the oncologist and the cancer center at the Elliot Hospital in Manchester. I hope thongs go well for your husband.

    Sorry you have to be here.

    Sorry you have to be here because of what you have. But I will agree with everyone and get a second oppion. Also go to the beat place you can. Boston Mass is rated as one of the best in the nation. depending on insurance go to a cancer center that has a tumor board to get the best corse of treatment you can. Do research,and try to stay strong. 

    Bill

  • KB56
    KB56 Member Posts: 318 Member
    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

    Some positive news

    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

  • wmc
    wmc Member Posts: 1,804
    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

    That's good news Mike

    Great news that it has not spread. Think positive and just know you're not a lone, and can beat this. Attitude helps, to beat cancer.

    Bill

  • DM1
    DM1 Member Posts: 13
    KB56 said:

    Some positive news

    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

    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

  • DM1
    DM1 Member Posts: 13
    Thank you

    Thank you everyone for all the information and support from everyone this truly comes from the bottom of my heart.

     

     

     

    Mike

  • Steve5
    Steve5 Member Posts: 147
    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,

    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

  • Steve5
    Steve5 Member Posts: 147
    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- mine was the same, no

    Mike- mine was the same, no spread indicated by the initial PET/CT which was good news - as Matt alway says, you will get a plan and things will begin to move forward - I waited about 5 weeks for the treatment to start - this is sort of noraml according to my H&N doc as they do not find any significant change in those weeks - so don't get too nervous if you don't start right away with treatment out of the box - some places have teams that meet with you - nutritionist, nurse, social worker, voice - etc..  take advantage of them and ask questions - also the radiation oncologist nurses are great  - so ask for help from them with anything you need - keep us posted -

     

    Steve

  • KB56
    KB56 Member Posts: 318 Member
    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

    Tonsils

    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

  • DM1
    DM1 Member Posts: 13
    checking in

    Had my mask made yesterday and a schedule for treatments. Monday the 17th is my loading shot of erbitux then radiation starts on the 24th with the second shot of erbitux. Time to fight. Thank you everyone for all the support and information.

     

     

    Mike