just joined , treatment starting soon.

Grandmax4

Listen to your

team of Drs and know they have years of experience and have treated many..their advice is what's best for you, although your friend, no doubt, wants to help you, it's hard for anyone that's not walked this path, to even begin to know what it's like. I had cancer that settled on my epiglottis, my team recommended robotic surgery which I had in 2011. Going in I knew there was a chance I'd also need radiation and chemo. By God's grace, my cancer had not entered my lymph system and I escaped both.

Many on here have walked the walk and now will talk the talk, to help you get to the end of your journey, and to get back to yourself asap.

Trust, was my key , I trusted my surgical team and they didn't let me down...we'll all be pulling for you

Guzzle

Grandmax4 said:

Listen to your

team of Drs and know they have years of experience and have treated many..their advice is what's best for you, although your friend, no doubt, wants to help you, it's hard for anyone that's not walked this path, to even begin to know what it's like. I had cancer that settled on my epiglottis, my team recommended robotic surgery which I had in 2011. Going in I knew there was a chance I'd also need radiation and chemo. By God's grace, my cancer had not entered my lymph system and I escaped both.

Many on here have walked the walk and now will talk the talk, to help you get to the end of your journey, and to get back to yourself asap.

Trust, was my key , I trusted my surgical team and they didn't let me down...we'll all be pulling for you

Aussies

Keith, I have played rugby and cricket against the Aussies and trust me they are tough so Im putting my cash on an Aussie sailing through this. Perth is full of scousers ! Lots of Liverpool fans there. Good luck from Liverpool Robyn.

Sara1234

Guzzle said:

Aussies

Keith, I have played rugby and cricket against the Aussies and trust me they are tough so Im putting my cash on an Aussie sailing through this. Perth is full of scousers ! Lots of Liverpool fans there. Good luck from Liverpool Robyn.

robyn

How are you doing it must be morning there........................

yensid683

I was stage IVa...

the primary tumor on the base of my tongue was 3 cm and the largest of the left cervical lymph nodes was 6cm.  Surgery was not an option, my medical oncologist proposed a three phase treatment plan, first would be induction chemo, 5 days in the hospital on high dose, continuous chemo, followed by 2 weeks to recover.  Induction was to have had 3 sessions but after the 1st I developed kidney issues so the plan moved to phase 2, a concurrent chemo (once a week, different agent) and daily radiation.  I did have a PEG tube and it was critical for me.  the sore throat was spectacular and despite the prescription pain meds, swallowing was more than a challenge.  I had 7 weekly doses of Erbitux and 35 rads.  Treatments ended July 5 2012 and my ENT scoped my throat two weeks later and pronounced the tumor gone.  It was another 4 months before I had the first post treatement PET scan that showed just a couple of minor hot spots so my radiation oncologist was very happy.  The tumor board met though to discuss my case and recommended surgery to remove the remaining issues.  The lymph nodes that they took out showed minor, inactive disease which meant that there was just a few, weak, inactive cells and I got to celebrate NED.

So my advice, don't be afraid of the PEG tube, one of the leading causes of death with this type of cancer in the past was that patients starved to death as they couldn't take in sufficient nutrition.

Trust your doctors, after all they spent how many years to become practicing physicians?  How long did your friend attend medical school?  I appreciate her concern for you but the simple fact of the matter is that it is readily treatable, doing nothing can guarantee a dismal outcome.

Yes, you will have a very sore thoat, yes, you will have a dry mouth, yes it will be tough to do, but I look at it from what a good friend of mine said, "it is better to be looking at the leaves on the trees than their roots". 

Oh, BTW, we'll be here to help you, when you have questions, need to share fears, want to see how we handled our battle with C, we'll be happy to respond.

 

Peter

 

PS, coming up on 2 years since the end of treatment, taste came back 100%, saliva is around 80%, I can do everything that I did pre-C.  I approached this entire experience with utter faith that I'd be fine, and so far I am!

Robyn64

phrannie51 said:

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 .  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

Thank you

Thank you so much Phrannie51, eading all these posts is making me feel sooo much better. I have had 2 calls this morning from the hospital to organise certain things, they have been very thorough.  I have 3 appointments coming up starting tomorrow and 2 early next week, one being the dentist to check my teeth. 

Your advice is very much appreciated xxx

Robyn64

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

Thank you

Thank you soo much Matt for your advice, you have helped putting my mind at ease. This is all soo new to me. I never thought I would see the day that I would be entering a whole new different world.

Thank you so much xx

Robyn64

Guzzle said:

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.

Thank you

Thank you Guzzle, I am getting so much info from peoples experience. It is amazing what people have been through on here. Thank you so much xx.

Robyn64

KB56 said:

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

 

Thank you

gee keith, thank you soooo much for all this info. It is very much appreciated ! I will have a better idea of what to expect. My drs that I met have so far been really great. One of them said I had better get used to their faces as I will be seeing a fair bit of them. So far I feel very comfortable with them, still a few more I have yet to meet over the next week. Thank you so much xx

Robyn64

debbiejeanne said:

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

Thank you

Thank you so much Debbie for your reply. It is very much appreciated. This site is so full of info and absolutely amazing people. Thank you so much xx

Robyn64

donfoo said:

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

 

thank you

Hi Don, My diagnosis from what I understand is the primary tumour is the base of tongue about 2 cms and has gone into one lymph node, right side. They said it was caused by a virus , think its called HPV, they said its a squamous cell cancer , they said its from the skin cancer family ?  It is stage 1 /2 . They said my outcome is pretty high arround 90 % because Im a non smoker and found it early, I hope so. This is an amazing site. Im so glad to have stumbled across it.

Your message about radiation and chemo has made me feel better. Thank you xx

Robyn64

MarineE5 said:

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

 

Thank you marine

Thank you so much Marine for your encouraging post, it is making me feel at ease. And will definitely remember hydration. Thank you so much xx

Robyn64

Grandmax4 said:

Listen to your

team of Drs and know they have years of experience and have treated many..their advice is what's best for you, although your friend, no doubt, wants to help you, it's hard for anyone that's not walked this path, to even begin to know what it's like. I had cancer that settled on my epiglottis, my team recommended robotic surgery which I had in 2011. Going in I knew there was a chance I'd also need radiation and chemo. By God's grace, my cancer had not entered my lymph system and I escaped both.

Many on here have walked the walk and now will talk the talk, to help you get to the end of your journey, and to get back to yourself asap.

Trust, was my key , I trusted my surgical team and they didn't let me down...we'll all be pulling for you

Thank you

Thank you so much. Yes I so far love the team assigned for my care. I have yet to meet a couple more over the next week or so. I had one of the drs ring me today and say robotic surgery was another option but for me he wouldnt recommend it. I will go with what he says I think. he seems pretty adamant about rad/chemo. I will trust him.

Thank you Grandmax4 for you post xxx

Robyn64

yensid683 said:

I was stage IVa...

the primary tumor on the base of my tongue was 3 cm and the largest of the left cervical lymph nodes was 6cm.  Surgery was not an option, my medical oncologist proposed a three phase treatment plan, first would be induction chemo, 5 days in the hospital on high dose, continuous chemo, followed by 2 weeks to recover.  Induction was to have had 3 sessions but after the 1st I developed kidney issues so the plan moved to phase 2, a concurrent chemo (once a week, different agent) and daily radiation.  I did have a PEG tube and it was critical for me.  the sore throat was spectacular and despite the prescription pain meds, swallowing was more than a challenge.  I had 7 weekly doses of Erbitux and 35 rads.  Treatments ended July 5 2012 and my ENT scoped my throat two weeks later and pronounced the tumor gone.  It was another 4 months before I had the first post treatement PET scan that showed just a couple of minor hot spots so my radiation oncologist was very happy.  The tumor board met though to discuss my case and recommended surgery to remove the remaining issues.  The lymph nodes that they took out showed minor, inactive disease which meant that there was just a few, weak, inactive cells and I got to celebrate NED.

So my advice, don't be afraid of the PEG tube, one of the leading causes of death with this type of cancer in the past was that patients starved to death as they couldn't take in sufficient nutrition.

Trust your doctors, after all they spent how many years to become practicing physicians?  How long did your friend attend medical school?  I appreciate her concern for you but the simple fact of the matter is that it is readily treatable, doing nothing can guarantee a dismal outcome.

Yes, you will have a very sore thoat, yes, you will have a dry mouth, yes it will be tough to do, but I look at it from what a good friend of mine said, "it is better to be looking at the leaves on the trees than their roots". 

Oh, BTW, we'll be here to help you, when you have questions, need to share fears, want to see how we handled our battle with C, we'll be happy to respond.

 

Peter

 

PS, coming up on 2 years since the end of treatment, taste came back 100%, saliva is around 80%, I can do everything that I did pre-C.  I approached this entire experience with utter faith that I'd be fine, and so far I am!

Thank you

Thank you Peter for your message about nutrition. I will certainly keep an eye on this. I do not know what extent my side effects will be, but I hope that I can cope. Thank you for your advice xxxx

Robyn64

Sara1234 said:

robyn

How are you doing it must be morning there........................

hello

Hi Sara, it has just become lunch time. I am fine so far. I have recieved 2 calls from my hospital today making more appoints and making sure I am up to date with organising and preparing for my upcoming treatment. How about you , have you seen your dr ?

Robyn64

Guzzle said:

Aussies

Keith, I have played rugby and cricket against the Aussies and trust me they are tough so Im putting my cash on an Aussie sailing through this. Perth is full of scousers ! Lots of Liverpool fans there. Good luck from Liverpool Robyn.

Hello

I am soooo hoping that this aussie is as tough as those you played rugby and cricket with, minus the muscles lol. I really hope so xx