just joined , treatment starting soon.

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.

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 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

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

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

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 .  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

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

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

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