just joined , treatment starting soon.

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Robyn64
Robyn64 Member Posts: 124
edited May 2014 in Head and Neck Cancer #1

Hello,

 

I have just joined this site. Im looking for advice on anything to do with the treatment I am starting in just over 3 weeks. I am getting very scared. I have met with a team of drs yesterday for 3 1/2 hrs. I have been told I will be starting radiation treatment 5 days a week and chemo 1 day a week for 7 weeks. I have been told the tempoary side effects can be very bad such as sunburn like symptoms down my throat and slight burns around my neck. They have said I will not be able to get food down by about the 4th o 5th week and have insisted I have a peg put in. Have people been able to get away with not using a peg ?

How severe is the throat and swallowing ? I am being sent to a dentist by the hospital to have any teeth removed that may have infections, Im hoping there isnt any, but they are concerned about 1 or 2 that have deep fillings, as radiation goes into infections and destoy bone.

Have people been able to cope with dry mouth after their treatment finished ?Soy for the ton of questions, this is all new to me and after yesterdays meeting with the team of drs, it is extemely overwhelming. 

One of my friends has scared me and wanted to know why surgery wasnt an option as chemo or radiation creates cancer, she has really scared me to the point of tears and I havent even started yet. The pimary cancer is at the back of tongue and has come through to a lymph node, Drs siad surgery would requie removal of part of back of tongue and would affect my speech. Im a non smoker, drs are confident of a full recovery.

What drinks do people suggest when my throat is painful ? Im wondering if aloe vera drink would help or not adviseable ? I have stage 1/2 squamous cell cancer of base of tongue. Could I down the track lose part or all of my tongue ?

Is it safe this method ? Or is my friend wrong ?

Very overwhelmed , Thank you ,

Robyn

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Comments

  • Goyca
    Goyca Member Posts: 220
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    hello Robyn

    Hello Robyn,

    I am so sorry you are going through this. But now that you are here, please know that this community/forum is very welcoming, there is a lot of information and good people who will give you a lot of advice, feel free to talk here whenever you want. We are here for you.

    I know it all sounds scary and you feel like you are lost. I have esthiseuneuroblastoma, Im having my second surgery very soon and will start radation after the surgery, so i know what you are feeling, i have the same fears.

    I am sure many good friends here will reply to your message and give you many advice since they already tried radiation and/or chemo.

    My opinion is that dont let your friend overwhelm, do research, take information from the people here and ask you doctors whatever you doubt about.

     

    Please try to think positive, take one thing at a time. On this forum you will meet a lot of survivors and you will learn that bad days end and good days are yet to come :)  Im sorry i cant give you advice about rad/chemo since i havent started yet, but ill hold you in my prayers :)

     

    Goyca.

  • Guzzle
    Guzzle Member Posts: 710
    Options
    Goyca said:

    hello Robyn

    Hello Robyn,

    I am so sorry you are going through this. But now that you are here, please know that this community/forum is very welcoming, there is a lot of information and good people who will give you a lot of advice, feel free to talk here whenever you want. We are here for you.

    I know it all sounds scary and you feel like you are lost. I have esthiseuneuroblastoma, Im having my second surgery very soon and will start radation after the surgery, so i know what you are feeling, i have the same fears.

    I am sure many good friends here will reply to your message and give you many advice since they already tried radiation and/or chemo.

    My opinion is that dont let your friend overwhelm, do research, take information from the people here and ask you doctors whatever you doubt about.

     

    Please try to think positive, take one thing at a time. On this forum you will meet a lot of survivors and you will learn that bad days end and good days are yet to come :)  Im sorry i cant give you advice about rad/chemo since i havent started yet, but ill hold you in my prayers :)

     

    Goyca.

    Good Luck

    Robyn, I am in similair treatment. I am half way through week six. All the side effects are possible but not everybody get all. I have a sore throat but take painkillers and can eat. I have no feeding tube. Not really dry mouth but a bit of mucus overnight. Slight redness to the neck area. You will get lots of good advice here and from your doctor. I understand you being scared and am sorry. It id daunting but doable. Eat lots pre treatment and get your weight up. During treatment drink lots of water and have pain meds on hand. I didn't need any until week 5 but have them them there. Anything you need Im here, G.

     

     

  • wmc
    wmc Member Posts: 1,804
    Options
    Yes it is overwhelming

    Welcome to H&N form. There is many thay have had the same cancer as you do on here and i'm sure they can and will answer so many of your questions. First let me say, please read the "Supertread" at the top of the form. It will give you so many answers now and later you will go back to it as well.

    To be blunt, your friend is worng. You went to a tumor board it sounds like and there you are seen by many and even more doctors you don't see. They ALL get together and decice what is the best way to attack this for you. Everyone is a little differant and has other medical conditions to consider.

    I did not have chemo or radition because my lungs are too bad to surive it. So I only has surgery, which was the best for me. If my lungs were better I would have had radation. I had Stage 3 [T3 N0, M0] SSC cancer of the larynx and had it removed, along with removing 86 lymph glands. Now I breath through my neck and have a protheses to talk with.  I will let the outhers explain the PEG and most say do it before the treatment starts. What I do know is it is a tought road you are about to go down, just like the doctors said, but you can do it just like so many before you have and survived it. You need to think positive, and get a huge attitude, you will beat this. You will beat this, you know. The odds are really in your favor. You will have some real bad days so just come and post about it. We do listen real well and even help at times. I sometimes just post and vent that I feel sad with a setback and it does make me feel better because the others really do understand. They have been there and know what you are really feeling. Unless someone has been through this they have no idea what you are feeling or going through.....They do here.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
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    PEG Tubes

    When my husband first started his treatment, the doctors wanted him to have a PEG tube.  We were told that it was better and easier to insert before treatment started and if not needed easy to remove but it would be there if needed.  And believe me, it was needed after 2 weeks for him.  There are many on here that were able to get thru treatment without one but many that needed one.  My suggestion would be go with your doctors suggestion.  PEG tubes are easy to remove but harder to get down the further you go into treatment -- we were told this up front by our doctors.  Also the main thing to remember is that everyone responds differently to treatment.  A lot of preferred treatment is radiation and chemo first and for many that takes care of the problem without surgery and then on the other hand, surgery is needed. 

    Also something we didn't do, but should have the first time around was to have a port put in.  So much easier for blood checks, chemo and fluids if needed.  He ended up having to have one before his second round of chemo, due to his veins collasping (?) from the chemo.  Second round he didn't need the port but had the PEG tube and today still has it.  Drink plenty of water to stay hydrated so you can flush the chemo out of your body.  My husband didn't and ended up having problems and getting fluid several times a week.  As far as teeth removed, my husband didn't have any removed.  Most of his bottom teeth were already gone and he didn't want to see a dentist before treatment started, although he was told too.

    As far as your friend, don't listen to them.  Do your own research and be sure and voice your concerns to your doctors.  If you aren't comfortable with your doctors, get a second or third opinion and find a doctor you are comfortable with and trust  because that is important.    Sometimes friends, may think they are being helpful, but in reality they aren't. 

    Wishing you the best -- Sharon

  • Sara1234
    Sara1234 Member Posts: 121
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    Ladylacy said:

    PEG Tubes

    When my husband first started his treatment, the doctors wanted him to have a PEG tube.  We were told that it was better and easier to insert before treatment started and if not needed easy to remove but it would be there if needed.  And believe me, it was needed after 2 weeks for him.  There are many on here that were able to get thru treatment without one but many that needed one.  My suggestion would be go with your doctors suggestion.  PEG tubes are easy to remove but harder to get down the further you go into treatment -- we were told this up front by our doctors.  Also the main thing to remember is that everyone responds differently to treatment.  A lot of preferred treatment is radiation and chemo first and for many that takes care of the problem without surgery and then on the other hand, surgery is needed. 

    Also something we didn't do, but should have the first time around was to have a port put in.  So much easier for blood checks, chemo and fluids if needed.  He ended up having to have one before his second round of chemo, due to his veins collasping (?) from the chemo.  Second round he didn't need the port but had the PEG tube and today still has it.  Drink plenty of water to stay hydrated so you can flush the chemo out of your body.  My husband didn't and ended up having problems and getting fluid several times a week.  As far as teeth removed, my husband didn't have any removed.  Most of his bottom teeth were already gone and he didn't want to see a dentist before treatment started, although he was told too.

    As far as your friend, don't listen to them.  Do your own research and be sure and voice your concerns to your doctors.  If you aren't comfortable with your doctors, get a second or third opinion and find a doctor you are comfortable with and trust  because that is important.    Sometimes friends, may think they are being helpful, but in reality they aren't. 

    Wishing you the best -- Sharon

    Hi Robyn

    Saw your post lastnight ...............but i was in bed sorry I am late in posting.....I am also new here and cant give you much info for I go to the doctors today.......................But When I stumbled on this site I new it was a great One the people are friendly and very caring ..............has for your  and  friend don't listnen everybody wants to be a cook In the Kitchen You are your best doctor or will be After reading and listning to everyones stories here.....Most people on here have been threw some kinda cancer .....So I think If you hang out here and listnen to your docs You will pull through all of this.........................Hang In.....Pm me if you feel like talking more people will be on later today................................I Will let you know what my doc says today

  • Robyn64
    Robyn64 Member Posts: 124
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    Sara1234 said:

    Hi Robyn

    Saw your post lastnight ...............but i was in bed sorry I am late in posting.....I am also new here and cant give you much info for I go to the doctors today.......................But When I stumbled on this site I new it was a great One the people are friendly and very caring ..............has for your  and  friend don't listnen everybody wants to be a cook In the Kitchen You are your best doctor or will be After reading and listning to everyones stories here.....Most people on here have been threw some kinda cancer .....So I think If you hang out here and listnen to your docs You will pull through all of this.........................Hang In.....Pm me if you feel like talking more people will be on later today................................I Will let you know what my doc says today

    Hi Sara1234

    Hello Sara,

     

    Thank you for your reply. I would love to know what your dr says. I hope it is good news. The time frame is a little different, I dont live in the States, I am in Sydney Australia.

    Please let me know how you go ,

    Thank you ,

    Robyn

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Options
    One question to ask

    I'll start with the usual "Sorry you are here, good to have  you with us" welcome--this is a great group to be a part of.

    I also had BOT, Stage 3-4, so my tumor was larger--and it had already invaded my jaw bone a little.  Be sure to ask if that's the case for you--it makes a huge difference on how they target the rads and your likelihood of developing certain side effects down the road.

    Hang in there--this is a very difficult, but survivable treatment.

    mike

     

  • Robyn64
    Robyn64 Member Posts: 124
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    Mikemetz said:

    One question to ask

    I'll start with the usual "Sorry you are here, good to have  you with us" welcome--this is a great group to be a part of.

    I also had BOT, Stage 3-4, so my tumor was larger--and it had already invaded my jaw bone a little.  Be sure to ask if that's the case for you--it makes a huge difference on how they target the rads and your likelihood of developing certain side effects down the road.

    Hang in there--this is a very difficult, but survivable treatment.

    mike

     

    Hello

    Thank you Mike for your post. Sorry to hear about your condition. It hasnt affected my jawbone, only base of tongue and has gone into lymph node. They seem confident that it was found early, that Im a non smoker and treatable, but I am quite worried about the long term. I read on here about recurrences etc and it has me very worried.

    Mine is a virus based one, not sure how much of a difference that makes ? I am just still trying to get it all to sink in. 

    Thank you Mike,

     

    Robyn

     

  • Robyn64
    Robyn64 Member Posts: 124
    Options
    Ladylacy said:

    PEG Tubes

    When my husband first started his treatment, the doctors wanted him to have a PEG tube.  We were told that it was better and easier to insert before treatment started and if not needed easy to remove but it would be there if needed.  And believe me, it was needed after 2 weeks for him.  There are many on here that were able to get thru treatment without one but many that needed one.  My suggestion would be go with your doctors suggestion.  PEG tubes are easy to remove but harder to get down the further you go into treatment -- we were told this up front by our doctors.  Also the main thing to remember is that everyone responds differently to treatment.  A lot of preferred treatment is radiation and chemo first and for many that takes care of the problem without surgery and then on the other hand, surgery is needed. 

    Also something we didn't do, but should have the first time around was to have a port put in.  So much easier for blood checks, chemo and fluids if needed.  He ended up having to have one before his second round of chemo, due to his veins collasping (?) from the chemo.  Second round he didn't need the port but had the PEG tube and today still has it.  Drink plenty of water to stay hydrated so you can flush the chemo out of your body.  My husband didn't and ended up having problems and getting fluid several times a week.  As far as teeth removed, my husband didn't have any removed.  Most of his bottom teeth were already gone and he didn't want to see a dentist before treatment started, although he was told too.

    As far as your friend, don't listen to them.  Do your own research and be sure and voice your concerns to your doctors.  If you aren't comfortable with your doctors, get a second or third opinion and find a doctor you are comfortable with and trust  because that is important.    Sometimes friends, may think they are being helpful, but in reality they aren't. 

    Wishing you the best -- Sharon

    Hi Ladylacy

    Hello Sharon,

     

    Thank you so much for your reply. It is good to know that your hubby and myself are not alone in this, although still scarey. Thank you so much for your advice about fluids and the peg. It seems I may not be able to avoid getting this. The biopsies I had ecently really hurt my throat and Im assuming radiation treatment will be much worse. I am actually very comfortable with the team of ds I have been given, I am very thankful for that and the nurse assigned to me for my whole treatment. I still have just over 3 weeks to go before my treatment starts. I go for an MRI on friday and an appointment to see the chemo dr on monday, I just hope there isnt a ton of side effects with that, I dont know much about that side of it yet.

    Again, thank you for your post, it is very much appreciated ,

    Robyn

     

     

  • Robyn64
    Robyn64 Member Posts: 124
    Options
    wmc said:

    Yes it is overwhelming

    Welcome to H&N form. There is many thay have had the same cancer as you do on here and i'm sure they can and will answer so many of your questions. First let me say, please read the "Supertread" at the top of the form. It will give you so many answers now and later you will go back to it as well.

    To be blunt, your friend is worng. You went to a tumor board it sounds like and there you are seen by many and even more doctors you don't see. They ALL get together and decice what is the best way to attack this for you. Everyone is a little differant and has other medical conditions to consider.

    I did not have chemo or radition because my lungs are too bad to surive it. So I only has surgery, which was the best for me. If my lungs were better I would have had radation. I had Stage 3 [T3 N0, M0] SSC cancer of the larynx and had it removed, along with removing 86 lymph glands. Now I breath through my neck and have a protheses to talk with.  I will let the outhers explain the PEG and most say do it before the treatment starts. What I do know is it is a tought road you are about to go down, just like the doctors said, but you can do it just like so many before you have and survived it. You need to think positive, and get a huge attitude, you will beat this. You will beat this, you know. The odds are really in your favor. You will have some real bad days so just come and post about it. We do listen real well and even help at times. I sometimes just post and vent that I feel sad with a setback and it does make me feel better because the others really do understand. They have been there and know what you are really feeling. Unless someone has been through this they have no idea what you are feeling or going through.....They do here.

    thank you

    Thank you WMC for your reply. I am learning about a few things on here and getting some excellent advice. My treatment stats in just under 1 month. I hope I can get my head around all this by then. So much to take in and so much planning and appointments.

    I am sorry for your condition, I wish for you life was much better. 

    Thank you very much for the welcome,

     

    Robyn

  • Robyn64
    Robyn64 Member Posts: 124
    Options
    Goyca said:

    hello Robyn

    Hello Robyn,

    I am so sorry you are going through this. But now that you are here, please know that this community/forum is very welcoming, there is a lot of information and good people who will give you a lot of advice, feel free to talk here whenever you want. We are here for you.

    I know it all sounds scary and you feel like you are lost. I have esthiseuneuroblastoma, Im having my second surgery very soon and will start radation after the surgery, so i know what you are feeling, i have the same fears.

    I am sure many good friends here will reply to your message and give you many advice since they already tried radiation and/or chemo.

    My opinion is that dont let your friend overwhelm, do research, take information from the people here and ask you doctors whatever you doubt about.

     

    Please try to think positive, take one thing at a time. On this forum you will meet a lot of survivors and you will learn that bad days end and good days are yet to come :)  Im sorry i cant give you advice about rad/chemo since i havent started yet, but ill hold you in my prayers :)

     

    Goyca.

    Hi Goyca

    Hi Goyca,

     

    Thank you so much for your post. You are right about this being a site of lovely people. The advice I have recieved will be a great help. Start my treatment in just under 1 month. 

    Thank you for your advice. I wish life was much easier for you , take care.

     

    Robyn

  • Robyn64
    Robyn64 Member Posts: 124
    Options
    Guzzle said:

    Good Luck

    Robyn, I am in similair treatment. I am half way through week six. All the side effects are possible but not everybody get all. I have a sore throat but take painkillers and can eat. I have no feeding tube. Not really dry mouth but a bit of mucus overnight. Slight redness to the neck area. You will get lots of good advice here and from your doctor. I understand you being scared and am sorry. It id daunting but doable. Eat lots pre treatment and get your weight up. During treatment drink lots of water and have pain meds on hand. I didn't need any until week 5 but have them them there. Anything you need Im here, G.

     

     

    thank you

    Thank you Guzzle for your post, it had me very interested, for somebody doing similar treatment to what I will be doing. Thank you very much for your advice , it is so much appreciated. I hope your pain and suffering is coming to an end. 

    Take care of yourself Guzzle,

     

    Robyn

  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    Welcome Robyn!!

    You're SO lucky!  You have stumbled upon the best forum on the internet for throat cancer....the folks here are warm, supportive, and oh so knowledgeable! 

    It sounds to me like you're being very well taken care of.....the treatment your Drs. are suggesting is the same as the vast majority of us here are going through now, or went through in the past.  I didn't have BOT (base of tongue), but had NPC (nasal pharyngeal....behind the nose...carcinoma).  35 radiation treatments over the course of 7 weeks along with 3 high dose Cisplatin chemo treatments every 3 weeks (you're probably getting Cisplatin at the lower dose method, and getting it every week instead).....both methods are common....it all depends on the Dr.'s preferance. 

    There are a few folks who get through treatment without a feeding tube.....most end up getting one somewhere along the line.....I had mine put in before treatment ever started....however I never needed it until after rads were over, and I was getting another 3 chemo treatments (adjuvent chemo).  So yes, not having one can be done, it's just not something to get hung up on....Nutrition, any way you can get it, will help you stay healthier and make healing faster.....I drank Boost VHC (very high calorie) when I had to use my tube....but there are many other drinks on the market, and your Dr. may have a favorite of his own.  There's smoothies made with icecream, avacodos, protein powder, berries.....whatever you might like in a smoothie that will deliver lots of calories.  I ate lots of scrabbled eggs and soup.....and put down a gallon of milk every other day.  No matter how your body reacts to the radiation, you're going to want to swallow something every single day.  The last thing you want is for your swallower to forget how to swallow.

    As for your friend....well, we've all had well meaning, but ignorant "help" during our journey's......I told my well meaning friend to "cork it", and if she every ends up with throat cancer she can experiment with her own life.....myself, I'm following the medical protocol Smile.  I'm here to tell you.....yes, this treatment is tough.....but it's been done by millions.  Don't Google anything, and don't listen to "advice" from friends, unless it's of the practical nature.....like how to make a good smoothie. 

    You're going to be ok....YOU ARE!!  You'll get on a new rotation of life for a while....get up, go to rads, come home, sleep.....get up do the things you feel like you can do....the tomorrow start it all over again.  It will go faster than you can imagine at this end of the tunnel......

    p

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    welcome

    Robyn,

    Welcome to the H&N forum, where most of us were scared at first.

    I had stage IVa, scc, bot, 1 lymph node & hpv+ (surgery, rads & Erbitux). 

    I did get neck burn, not everyone does and there is great creams for it. 

    I started with 28 teeth and I have all of them still (2 years, 2 months). 

    I did have a PEG, but managed to drink one meal a day, I probably could have done without one, but it does make feeding a no sweat ordeal.  

    I did start swallowing and drinking lots off water early on and haven’t stopped.

    I used magic mouth wash for throat, mouth and tongue discomfort and may I say with great success.

    Friends, you find out that many do not handle cancer very well and others do.

    I did have s chunk remove from my tongue, but don’t seem to miss it

    There, that is part of my experience.

    Good luck,

    Matt

  • KB56
    KB56 Member Posts: 318 Member
    Options
    New treatment

    Robyn, sorry you find yourself here but this site will definitely help you as you go through your treatment.   You should probably look over the Superthread (at the top of the site) as the information there will answer a lot of the questions you have.   My one year anniversary of finishing treatment is June 11th so I'm not quite a year out yet to give you an idea of where I am along the recovery road.

    To answer some of your questions:

    1) PEG Tube - many "fors" and "againsts" on this site.  Personally I had one and I'm really glad I did as I needed it.  I had a tonsillectomy (my primary was my right tonsil) before starting radiation and chemo so I had already lost 12 pounds before starting treatment, and lost 30 total.  I don't think I could have done without it but everyone reacts differently to the chemo/radiation and you may be fine.  If you Australians are as tough as the Brits (like Guzzle) you may not need one.  Towards the end I could only sip on water and couldn' really swallow anything so I took all my meds, most of my hydration and food through the PEG.  I couldn't wait to get it out and had it removed 3 weeks after my last treatment but really glad I had it when I needed it.

    2) I would think that if you could get by without the tongue surgery and still eradicate the cancer with just chemo/radiation, that would have to be better.  There are many on this site that will chime in on the tongue surgery but it sounds tough and something to avoid if possible.  I didn't have it but for those that did and what they've shared, not fun at all....

    3) Dry mouth - you will most likely get really dry mouth during treatment, lose all you taste buds but they will slowly but surely come back.  My taste is back to close to 100% and my saliva has recovered some but still not where it was before.   I take a saliva stimulating pill 3 times a day and chewing sugarless gum helps a lot as well.  I don't need to have a bottle of water with me every waking moment and getting better every day.

    4) Chemo/Radiation - unfortunately there are side effects but at this point it's something you have to have in order to get rid of the cancer you already have.   You caught yours early at stage 1/2, mine was stage 4 when diagnosed, so your long term outlook has to be very positive and that's all you need to focus on right now.   Everything else is just part of the journey to be cancer free.   Unfortunately, they usually involves chemo/radiation but most/all of here have had it and doing well and living life. 

    5) Dentist/teeth - your wise in going to the dentist and getting checked out.  Most of us get a flouride tray that we use nightly to help keep the teeth strong.   Radiation is tough on them, many have lost multiple teeth through the process but it's not a given that you will lose teeth.   The fouride tray takes about 10 minutes each night (so really easy), I brush 5 or six times a day ( i use a Soniccare toothbrush which is easier on your gums), floss a couple of times a day as well and so far so good.   I avoid all coke like products, even the sugar free, due to the acid content.    i really want to save my teeth and do whatever I have to do to keep them.  I also go to the dentist quarterly now for a cleaning and check up.

    Stay positive... this will be tough but you can do it! .    You start in 3 weeks so you'll be FINISHED in early August and then the body can start to heal itself.    The people on this site can help you through whatever side effects you develop and before you know it this will be behind you.

    All the best,

    Keith

     

  • Guzzle
    Guzzle Member Posts: 710
    Options
    CivilMatt said:

    welcome

    Robyn,

    Welcome to the H&N forum, where most of us were scared at first.

    I had stage IVa, scc, bot, 1 lymph node & hpv+ (surgery, rads & Erbitux). 

    I did get neck burn, not everyone does and there is great creams for it. 

    I started with 28 teeth and I have all of them still (2 years, 2 months). 

    I did have a PEG, but managed to drink one meal a day, I probably could have done without one, but it does make feeding a no sweat ordeal.  

    I did start swallowing and drinking lots off water early on and haven’t stopped.

    I used magic mouth wash for throat, mouth and tongue discomfort and may I say with great success.

    Friends, you find out that many do not handle cancer very well and others do.

    I did have s chunk remove from my tongue, but don’t seem to miss it

    There, that is part of my experience.

    Good luck,

    Matt

    Oz

    Robyn, most of the good people here are from the US. There are a few of us from further afield. Im Liverpool UK. Ive just seen my nurse. She is very pleased that my weight has remained static. Phrannie makes a really good point about nutrition. Thus conversation should be had with your med team to work out what strategy you should use. Some people literally say s PEG tube saved them. It was not offered to me and an NG tube is my plan b. In my hospital this means being admitted and staying in (not the same everywhere).You have s great oppurtunity to make a list of everything which you like to....and eat it. All the good advice I had was to go into treatment carrying a bit of timber if you can. I have personally found staying active helps a lot. I sm told this helps recovery as does continuing to swallow. As you can see by Phrannies response there are some very knowledgable people here who have been there. They were invaluable in my preparation. All the Best, G.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    Robyn, welcome to our family

    Robyn, welcome to our family but sorry you need to join.  but, you are not alone.  we will be here for you thru your entire journey and then some.  i had cancer of the larynx, like wmc, in 09 and had 35 rad tx.  no feeding tube and did ok.  neck was pretty burned but i used aquafor and it got better right away.  in 2012 had recurrence and had laryngectomy (which means like wmc, I breth thru a hole in my neck and talk with a prosthese) and neck dissection.  then i had a feeding tube for about 8 months.  i've been cancer free since 2/28/12.  the road you are on is a rough and bumpy one but many have traveled that road and survived.  you will too.  i never had chemo so can't help there.  the superthread has lots of great info that will give you ideas/suggestions to help make your trip a lot easier.  and we will be your "cheering" team.  we will be on the sidelines cheering you on, picking you up when you get down, laughing with you when you laugh and crying with you when you want to cry.  you can ask any question and as many questions as you have and we will do our best to answer them.  feel free to post whatever you are feeling, we will understand.  tx will go fast once it gets started and we will be counting down with you and waiting to do the happy dance with you when you ring the bell to indicate you've completed tx.  stay postive and believe.  you'll be doing the happy dance before you know it.

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
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    Robyn, welcome to our family

    Robyn, welcome to our family but sorry you need to join.  but, you are not alone.  we will be here for you thru your entire journey and then some.  i had cancer of the larynx, like wmc, in 09 and had 35 rad tx.  no feeding tube and did ok.  neck was pretty burned but i used aquafor and it got better right away.  in 2012 had recurrence and had laryngectomy (which means like wmc, I breth thru a hole in my neck and talk with a prosthese) and neck dissection.  then i had a feeding tube for about 8 months.  i've been cancer free since 2/28/12.  the road you are on is a rough and bumpy one but many have traveled that road and survived.  you will too.  i never had chemo so can't help there.  the superthread has lots of great info that will give you ideas/suggestions to help make your trip a lot easier.  and we will be your "cheering" team.  we will be on the sidelines cheering you on, picking you up when you get down, laughing with you when you laugh and crying with you when you want to cry.  you can ask any question and as many questions as you have and we will do our best to answer them.  feel free to post whatever you are feeling, we will understand.  tx will go fast once it gets started and we will be counting down with you and waiting to do the happy dance with you when you ring the bell to indicate you've completed tx.  stay postive and believe.  you'll be doing the happy dance before you know it.

    God bless you,

    dj

    Robyn

    My cancer was of the lower jaw bone in 2012. I had surgery but also had the radiation and Cisplatin at that time. The rads and chemo are tough but we all make it through the tx. You'll hear and read of all the side effects but won't get them all and the ones that you do get come in varying degrees. For ex. Matt & others had a bad neck burn that broke open. When I finished tx my neck and lower cheek turned a darker shade but never hurt and never broke open.  Midstream, I was extremely fatigued. Some deal with mucus issues but I was lucky to avoid that. I had some pretty bad sores on my lips, that was my worst memory. I think the one thing most of us have in common is the dry mouth. It does get better with time. Initially, I did not feel like I could leave the house without a water bottle strapped to each hip. I went for a long time where I could only do room temp foods/water but that has passed. 

    I had a "g-tube" instead of a PEG. You might inquire about the differences. I did not find the g-tube to be too uncomfortable. It was simply used for Ensure and liquid or crushed meds. Even with it, it is important to keep swallowing. I lost 65 pounds so plump up in the next month, if you can. 

    Prayers for an easy journey

    Candi

  • donfoo
    donfoo Member Posts: 1,773 Member
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    Welcome to CSN

    Welcome Robyn,

    Lots of good comments here already. Only main one I have is your friend is not your friend in this instance. She has no idea what she is talking about. Cancer is killed two ways: surgery and/or radiation. Chemo is used to slow or stop growth of cancers and kill microscopic cancer cells that are too small or distant for surgery or radiation.

    Fortunately , you have time on your side to get as informed as you desire. Do stick to only know and credible sites on the Internet. Coming here is a very wise choice and for oral cancer folks OCF is a great place too.

    The treatment is harsh but you will make it; we all do, just maybe a bit banged up but we all heal up. If you could state your full diagnosis it helps us offer more specific responses.

    Welcome, Don

     

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
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    Allot of information already

    Robyn,

    As you can see there is a wealth of knowledge here with many different situations as to why we are here. Tonsil or Base of Tongue, etc. My cancer was similar in nature as yours, base of tongue. I had  part of my tongue removed, but I was Stage 3/4 at the time with 2 lymphnodes involves.

    I did have surgery to remove the tumor on the base of my tongue along with a radical neck disection. I had no choice in the matter of the PEG Tube as it was my only source of nutrition intake for weeks. It sounds worse then it really is, I felt comfortable using it when I needed to. As it has already been mentioned, it may be better to get prior to your treatments then during treatments as your throat will become a bit sore.

    I did not have Chemo as my Doctors wanted to keep it as a back-up in the event I might have a reaccurance which did not happen with my Base of Tongue cancer. I did have the Radiation and as mentioned in earlier posts, I do the Flouride treatments daily for my teeth. I had borderline teeth at the start and decided to keep them, I still have all the teeth that I started with.

    As stated also earlier, Hydration is very important in all of this. Stay ahead of any discomfort with pain med's when they are given to you. The creams for your neck are very helpful. As things come to mind, ask us here, that is why we are here. Many have walked the road you are about to take.

    Lastly, welcome to the club no one volunteers to join. You Can Do This and WILL..

    One last point, if at all possible, take someone along with you to the Doctors appointments to write down what is said and have a list of questions for the Doctors as well. Your head is spinning with all of this and traveling at warp speed, you may not remember everything that is said.

    My Best to You and Everyone Here