just joined , treatment starting soon.

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 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

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 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.

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 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

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

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 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

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.

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