Newly diagnosed


Hi everyone!  I was diagnosed 8/10/15 and as of today my treatment plan has been fianalized and set in motion.  I have stage 4A cancer of the right tonsil with spread to 1 neck node on the right side, but PET scan shows no where else.  So....T2N2aM0  I'm set to start 35 weekly treatments of radiation 5 days a week for 7 weeks on Monday 8/31/15.  In addition, I'll have Cisplatin chemo on days 1, 17, & 35 of radiation.  I'm a 53 year old male in great health and no outward symptoms of any kind except the neck bump.  I'm 5'10 and weigh in at 225.

I've been through the standard protocol with all of the doctor's about side effects and how everyone reacts differently to all the different treatment modalities.  The one thing I just can't seem to make a concrete decision on is the need/want for a PEG tube.  I'm really hoping to get a concensus from people here who have actually been through this journey so that I can make an informed decision on Thursday when I meet with the Gastro Doc.

Any words of wisdom form anyone who's come through it on any issues on the road that lies ahead woud be greatly appreciated.

Thanks.

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Feeding Tube

    You have asked a loaded question on this site when it comes to a feeding tube.  Many didn't and then again many did, many had no problems and then again many didn't.  The way our doctor explained to us was that if it wasn't needed it would be easy to remove but to put it in after radiation begins can cause problems.  We were glad that my husband decided to have the PEG tube inserted before treatment as the radiation closed off the back of his throat, something we didn't know until he had surgery.  He was able to eat again after surgery to remove his laryx but that didn't last long as he had to undergo a second round of radiation in basically the same place for a second primary.  At first the doctors weren't going to go with a feeding tube, but due to his weight (6'4" - 145 lbs) they decided it was best and once again they were right as soon he wasn't able to swallow.  Now with a PEG tube, my husband had no problems with the PEG tube, others do.  In fact, one of his lasted over 2 years before it had to be changed out and hospice did it while he sat in his recliner. 

    So you will get many different opinions on a PEG tube.  All I can is listen closely to what your doctors say and then decide.   Also be sure to drink plenty of water to stay hydrated.  My husband had Cisplatin the first time, and he didn't and ended up having to have IV fluids several times.

    Wishing you the best -- Sharon

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Keldog,

    Welcome to the H&N forum, sorry you are here, but you are.

    I had two PEG’s one very bad one very good.  Looking back I probably could have made it without one as I always drank at least one meal a day ( 2 were by PEG).  The procedure is pretty easy and straightforward so, it might not hurt to wait.  I had my second one put in during the middle of treatments and didn’t miss a day.  If I had to choose whether to have a third one or not I would probably wait.

    The one good thing about a good PEG is daily nourishment is easy.  If you don’t have one everything has to go in your mouth and down your throat and believe you me it is a challenge for 99% of us.  Because of recommendations from this site I started drinking lots of water before treatment started and 3+ years later I still do.  I think because I forced myself to swallow so much it made drinking my smoothies easier. 

    My recommendation to you is start drinking lots of water and swallowing, swallowing, swallowing! This may sound funny but it goes a long ways to your recovery.

    Good luck,

     Matt

     

     

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    PEG Tube here

    keldog,

    I had no choice in the matter really as I wanted the Tumor on the Base of my Tongue removed, so I had surgery and was not able to eat orally for sometime. I did not have any issues while having and using the PEG tube. Once my tongue healed up and the Trach was removed, I was told to start eating soft foods.

    I did so until I started my Radiation treatments. Around week 3-4 I leaned on the PEG Tube more because of the sores and swallowing issues. So, I maintained my weight the best I could with the combination of Shakes/ Soups orally and the Nutrition cans via the PEG tube.

    Once I completed the radiation and was able to maintain my weight eating orally, the PEG was removed, roughly 8 weeks afterwards from the final treatment. Even with the effort I put into eating, many days I just couldn't get myself to take in enough calories. So I did lose around 45 lbs over the whole experience.

    My Best to You and Everyone Here

  • ratface
    ratface Member Posts: 1,337 Member
    MarineE5 said:

    PEG Tube here

    keldog,

    I had no choice in the matter really as I wanted the Tumor on the Base of my Tongue removed, so I had surgery and was not able to eat orally for sometime. I did not have any issues while having and using the PEG tube. Once my tongue healed up and the Trach was removed, I was told to start eating soft foods.

    I did so until I started my Radiation treatments. Around week 3-4 I leaned on the PEG Tube more because of the sores and swallowing issues. So, I maintained my weight the best I could with the combination of Shakes/ Soups orally and the Nutrition cans via the PEG tube.

    Once I completed the radiation and was able to maintain my weight eating orally, the PEG was removed, roughly 8 weeks afterwards from the final treatment. Even with the effort I put into eating, many days I just couldn't get myself to take in enough calories. So I did lose around 45 lbs over the whole experience.

    My Best to You and Everyone Here

    we are pretty much evenly divided here

    There are many threads about the pros and cons. Do a search and you will read for hours. You will come to the right decision for your individual circumstances. Welcome to the Board. All the best. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome K-Man~

    You sound pretty much like my twin.., other than I was STGIII, with the same side and single lump also.. My protocul was a little different as I had Nine weeks up front similar to you with Cisplatin, Taxotere and 5-FU via a pump through the old power port..

    Then the seven weeks of rads, with weekly Carboplatin or concurrent..

    They didn't really ask me one way or another of my opinion on the PEG.., it was discussed as an option if I needed it down the road.

    I never did...

    Some here will swear by it, others say it's not that big of a deal if needed once in the mix.., and others will tell you why wait, get it up front.., or you should do it when you're feeling good, versus later when you might be hurting for calories and down and out.

    That's a decision you'll need to decide..

    I weighted a few more pounds than you going in, but I only lost 42# overall during that sixteen week ordeal.

    Was it tough, hell yes.., it's a battle..

    But bottom line.., it's all calories and hydration.., nothing more, and certainly not for taste and enjoyment.., because more than likely, you won't have either about 2 -3 weeks into rads.

    Again, welcome aboard and hang on for the ride...

    BTW.., I was Dx January 2009..., I'm not considered in complete remission...

    Best,
    John

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome to the group, and sorry you need to be here. I only had a GI tube so the others will explain it better.  It seems 6 to 1 & 1/2 dozen to the other. Some yes and others no. I will sugest you try to put on some extra weight now and drink lots of water and stay hydrated.

  • Kapital
    Kapital Member Posts: 52 Member
    PEG

    Hi Keldog,

        My husband sounded very much like your same situation. He finished treatment in Feb 2015 for stage IV, right sided tonsil CA, T1N2bM0, hpv16+. He had 33 days of radiation and 3 rounds of chemo - Carboplatin. His doctors felt that a PEG tube wasn't necessary to start and would be considered on an as needed basis. He never wound up needing one, but it wasn't easy. The last week of treatment and the two weeks after were difficult. He did go in for IV hydration every other day during that time as he wasn't able to drink enough to keep well hydrated. It was his choice to go in for the IV's, but he felt better when he was well hydrated. He lost a lot of weight and has only recently stabalized. He is 6ft 2in and started at around 235 lb. and now weighs 180 lb. He feels great, but his taste buds haven't yet recovered and his saliva is still gone. He hasn't gained back any weight because he says food doesn't taste the same and the dryness is anoying. We are hoping that over time some of this will improve. He has no regrets about not having a PEG tube and would do it that way again as it's one less thing to deal with.  What worked for my husband may not work for you, but that was our experience. Good luck with your decision and hang in there, treatment is tough, but doable.  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Kapital said:

    PEG

    Hi Keldog,

        My husband sounded very much like your same situation. He finished treatment in Feb 2015 for stage IV, right sided tonsil CA, T1N2bM0, hpv16+. He had 33 days of radiation and 3 rounds of chemo - Carboplatin. His doctors felt that a PEG tube wasn't necessary to start and would be considered on an as needed basis. He never wound up needing one, but it wasn't easy. The last week of treatment and the two weeks after were difficult. He did go in for IV hydration every other day during that time as he wasn't able to drink enough to keep well hydrated. It was his choice to go in for the IV's, but he felt better when he was well hydrated. He lost a lot of weight and has only recently stabalized. He is 6ft 2in and started at around 235 lb. and now weighs 180 lb. He feels great, but his taste buds haven't yet recovered and his saliva is still gone. He hasn't gained back any weight because he says food doesn't taste the same and the dryness is anoying. We are hoping that over time some of this will improve. He has no regrets about not having a PEG tube and would do it that way again as it's one less thing to deal with.  What worked for my husband may not work for you, but that was our experience. Good luck with your decision and hang in there, treatment is tough, but doable.  

    Hang in There~

    It took a good 6 - 12 months to regain most of my saliva.., around six months to regain a lot of taste.. But all of two years to completely regain all taste, and around 95% of my saliva back..

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    Ah....the PEG tube dilemma....

    Welcome keldog, to the club nobody wants to join. 

    As mentioned above, there have been many discussions regarding the PEG tube.....get one or not. 

    I got one before treatment started, and that could have been because I was skinny in the beginning, tho maybe my Oncologist just has everybody get one.  I didn't question, I just did what was suggested.  I did manage to get through radiation without using it, but I had adjuvant chemo (after rads), and I wouldn't have made it without my tube during that time.  I think it's ok to wait....as long as a person doesn't get a mind set that "they will not get one no matter what."  This treatment is a weight losing proposition, and it's vital to recovery to take in calories and hydration....as much of each as possible.  If it takes a tube to do that, then a tube should be put in....

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    first, welcome to the family

    first, welcome to the family but i'm sorry you neeeded to find us.  as for the tube, we've had it both ways here, with and without.  the need for that will depend on how well you handle treatments.  radiation will probably make your throat very sore and you therefore probably won't want to eat, in fact, it could get bad enough to where you can't eat.  we are all so different.  i had 35 rads the first time and no chemo.  i did not have a feeding tube.  some say its best to get it before rads start and others say its best to wait and see if you need it.  in the end, it all depends on how well your body does with tx.  it is a very rough treatment but we've made it and you will too.  put on your war gear and be prepared.  we will be on the sidelines cheering you on.  good luck and we'll see you at the finish line!!

    God bless you,

    dj

  • rcaulder
    rcaulder Member Posts: 70
    4 weeks out

    I'm 4 weeks out of radiation along with 5 treatments of Erbitux. I weighed 189lbs a few months before I got my DX. I was diagnosed with stage 4 right tonsil cancer the end of May. At the start of treatment I weighed 179lbs and the Dr recommended a peg. I just didn't want one. The Dr wasn't happy but rolled with my decision. His advice was pump up and eat as much as I could before treatment started in a few weeks. I did. He thought if I started to fail to thrive he was going to insist on me getting one mid treatment. They do not prefer this.  During treatment it did get rough. It's still  hard 4 weeks out but getting better daily. I drank 4 boost or ensure a day and what ever I could eat during the 35 treatments. I ate something every day. My weight only dropped to 170lbs at its lowest. But I'm what they call stubborn stupid. In my case I'm very glad about my decision to not get the peg. I'm very Blessed in life even in cancer.  God says He has power over all flesh. Cancer is flesh. I ran with that.  It was God who helped me make the peg decision. He gave me the strengh to force the food down and drink . This is what I had to do to maintain nutrition.  One key point also in my decison to not get a peg was I didn't want to become dependent on it or lose my ability to swallow. I hope the best for you. This board was of great value to me. This treatment is brutal, at times I didn't even feel human,  but life is good. This is what we have to do to get our health back.

  • avisemi
    avisemi Member Posts: 172
    Welcome! I hope everything

    Welcome! I hope everything goes well for you. It won't be easy but we are here to support you.  Let us know what you decided and keep us posted along the way.  Did you read the super threat? It has a lot of good info. 

    You can do this!

  • donfoo
    donfoo Member Posts: 1,771 Member
    welcome

    It is highly recommended to get a second opinion. You also want to have your case reviewed by Tumor Board to get a wide range of review and input. See if you can be treated at a CCC, these are specialized facilities recognized for their treatment of cancer.

    As to PEG, you did touch the third rail in this forum. Unless there is particular reason to get one early, try to do it without one. You can always get one if needed, it is not a big deal at all. Every day you can swallow and eat orally is that much better for less chance of encountering long term swallowing issues. 

    There are plenty of cases here where PEG causes various issues. Then again, there are plenty of reports where it provided life giving nutrients. I was 178 going in and 148 coming out, a free diet plan but not one I'd recommend to anyone.

    Read up as much as you can and ask questions as they come up.

     

    Good luck

  • SASH
    SASH Member Posts: 421 Member
    To Tube or not to Tube, That is the question

    I opted for no tube for during treatment, which was probably a mistake.  After week 3 or 4, swallowing was very painful even with the use of Magic Mix(Mouthwash).  Ask your doctor about this.  I lost 95 pounds through treatment and this was pre-surgery.  I had to have the tube for nutrition after surgery and found it very easy to deal with.

    My personal recommendation is get the tube and only use it when you really need it.  Get in as much via the mouth for as long as possible, and even if painful, keep swallowing.  You don't want to have to re-train your muscles how to swallow, which may happen if you solely rely on the tube.

    Good luck on your journey.

  • hwt
    hwt Member Posts: 2,328 Member
    SASH said:

    To Tube or not to Tube, That is the question

    I opted for no tube for during treatment, which was probably a mistake.  After week 3 or 4, swallowing was very painful even with the use of Magic Mix(Mouthwash).  Ask your doctor about this.  I lost 95 pounds through treatment and this was pre-surgery.  I had to have the tube for nutrition after surgery and found it very easy to deal with.

    My personal recommendation is get the tube and only use it when you really need it.  Get in as much via the mouth for as long as possible, and even if painful, keep swallowing.  You don't want to have to re-train your muscles how to swallow, which may happen if you solely rely on the tube.

    Good luck on your journey.

    Happy I had g tube

    I had horrible sores on my lips with the Cisplatin. Before tx started, I was given a gtube. Only good for hydration, Ensure and the like and maybe a strained broth. I think it is different from the PEG in that it's very thin and nothing large implanted under skin. Smaller than size of pencil. You can not grind food and put it thru like some people discuss with a PEG. You might consdier. I was thankful I had mine midway thru. My opinion is better to have it and never use it than to need it and have to have inserted when you are down and out.  Even with mine, I was down 60+ pounds. 

    I also had a Hohn catheter instead of port that I had no difficulties with.

    Good luck with making the best decisions for yourself.

  • Catzv
    Catzv Member Posts: 1
    Feeding Tube

    I'm almost two weeks after my final radiation treatment.  I had a JPeg inserted before my radiation started.  I'm very glad I did.  It's still difficult to eat, and the tube makes it easy and convenient to get the nourishment I need.  It would've been very difficult to get this inserted mid treatment.  I still drink liquids and have applesause so I do not lose my ability to swallow. 

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

    Feeding Tube

    I'm almost two weeks after my final radiation treatment.  I had a JPeg inserted before my radiation started.  I'm very glad I did.  It's still difficult to eat, and the tube makes it easy and convenient to get the nourishment I need.  It would've been very difficult to get this inserted mid treatment.  I still drink liquids and have applesause so I do not lose my ability to swallow. 

    Welcome to the H&N Group

    Welcome to the H&N Group and sorry you need to be here. You have found the best group for support and help and answers. I do recomend reading the thread on top called the superthread as it has so many answers and information.

    http://csn.cancer.org/node/261072  

    You might also start a new thread just to interduce so everyone can respond to the nw thread and Welcome you.

    Bill  Oct 2013

  • Barbaraek
    Barbaraek Member Posts: 626
    Good Luck and welcome

    Hello Keldog and welcome.

    I am sorry you have to be here, but glad that you found this group. I am new here also and have already found the support to be invaluable. Your treatment sounds similar to what my husband received a few short weeks ago. He got a PEG tube the 2nd week of radiation and was glad he did. He was unable to swallow due to mouth sores, mucositis and pain. At 5'7" and 158 my husband didn't have any pounds to spare. He lost about 14 pounds but gained 6 back with the PEG. He continues to have it while he's getting adjuvant chemo. We'll try to wean off of it in the months ahead. I echo what everyone else here said...it's a very individual decision.

    I wish you fortitude on the journey ahead. Try to stay positive!

     

    barb

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Keldog

     

     

    Like everyone Welcome to CSN H&N, sounds like your game plan is all together and you are off to a good start. As you get a little farther down the road and it gets hard to eat normal the PEG tube is a very good option. I lost my ability to eat completely about 3 years ago and have lived on the PEG tube all that time. Believe me it is truly a life savior and a blessing to me rather having to live with a tube up my nose for the rest on my life. I do some traveling now and then on my own and the only problem I have is people always looking when I open my shirt and start feeding myself. I made it through both of my treatments with no PEG tube, but knowing now how easy it is now I wish I would have gotten one put in then.

     

    All the best my friend and get ready for Monday

    Tim

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    wmc said:

    Welcome to the H&N Group

    Welcome to the H&N Group and sorry you need to be here. You have found the best group for support and help and answers. I do recomend reading the thread on top called the superthread as it has so many answers and information.

    http://csn.cancer.org/node/261072  

    You might also start a new thread just to interduce so everyone can respond to the nw thread and Welcome you.

    Bill  Oct 2013