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AJW1966
Posts: 69
Joined: Nov 2012

Hi, im Alan and i have been reading a lot of these messages over the past week and finally decided to join. Lots of wonderful advice and encouragement.
I need all i can get.
I'm stage 3 SCC base of tongue, only one tennis ball size node, none others affected but no primary was found. Tomorrow is #15 rad treatment with 15 more to go. No chemo.
Currently nauseous, fatigue, slight rad burns to both sides of neck, stiffening of the neck, saliva down to about half, dry throat, slight mucosa, few sores in mouth, tastes are about 50% gone. I know everyone reacts differently to rads but is this relatively normal at the half way mark? I'm afraid of what lies at ahead.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

sounds about right. you're halfway there, you'll make it!
rads are no picnic, but you'll have some great war stories to tell after you come out on the other side.
hope you've got your provisions lined up: magic mouthwash, baking soda/salt solution, silver sulfadiazine for the burns...

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

but I do have a question(s) if I may? I was stage III base of tongue SCC HPV+ with one lymph node invovled.

You said your node was the size of a "tennis ball" ...that's well over 4cm is it not? But you also said "base of tongue SCC" ...but no primary was found? Maybe I'm tired and just reading it wrong.

My base of tongue tumor was about 2cm across, that was my primary..and my lymph node was just under 3cm across. No chemo either?

Looks like you are half-way through...that's great ...and yes, again, you sound like you are right where most would be. Hang tough my friend ....

Best,

Tim

AJW1966
Posts: 69
Joined: Nov 2012

Hi Tim, thanks for the reply. I have the same diagnosis as you did "stage III base of tongue SCC HPV+ with one lymph node invovled."
The Dr's felt that it originated from base of tongue so that's what they're officially calling it even though no primary was found there after several biopsies, only the one node and yes HPV+ which came as a shock to me. Never knew i had HPV. The node was approx 5.5 x 3.5 x 2 which roles it into stage 3 category.
The tumor board met and decided against chemo because there was no evidence of further spread.
Hope it makes sense.

AJW1966
Posts: 69
Joined: Nov 2012

Thank you for the welcome.
I'm currently using MuGuard and seems to be keeping the sores at bay but i will try the baking soda/salt solution. Also what is silver sulfadiazine? Never heard of it.
I started using Calendula Cream from day one. Seems to work so far.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

silver sulfadiazine is a prescription anti-bacterial cream for burns.
if your burns aren't second-degree, you might not need it. knock on wood!
my burn was kinda big and ugly, and the SS helped a lot.
best,
douglas

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

You sound like you right on track to me. Rads didn't make me nauseous, but by half way thru I had the burned neck, dry throat, no taste buds...but no mouth sores either.

Congrats at being at the half way mark...that was a BIG deal to me.

p

AJW1966
Posts: 69
Joined: Nov 2012

Thank you, glad to be hear.
I've read so many wonderful replies to others that i felt this was the right place for me
: )

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

good luck with it during radiation. I also used the soda/salt mixture. It was only during the last 3 chemo's that Mugard couldn't keep up with the mouth sores...and I used L-Glutamine and the salt/soda mix exclusively, since they were the only things that didn't sting.

You sound like you're doing pretty darn good...so far!! Are they going to give you chemo after the rads??

p

AJW1966
Posts: 69
Joined: Nov 2012

Hi phrannie51. Dr's tell me chemo will be not be involved at all.
What is the best ratio for salt/baking soda and how often should it be done?

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Hi AJW1966,

Yep, you sound halfway normal to me. I loved the Magic Mouth Wash for throat and mouth pain, it also helped me fall asleep. For the neck burn, blackswampboy hit the ball out of the park with the recommendation of the Silver Sulfadiazine Cream, great, great stuff. The neck burn was the worst pain of treatments for me and the SS made it all go away.

So welcome aboard it sounds like you are doing fine.

Best,

Matt

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

our fun-filled cruise. My cancer was confined to the larynx so my radiation/chemo experience is a bit different. Nevertheless, you will get good advice from others on the board. Rick.

katenorwood
Posts: 1808
Joined: May 2012

Hello Allan !
We have different dx's....but wanted to welcome you aboard. There are alot of wonderful people with great info. for any questions you may have. Again welcome ! Katie (ACC H/N)

AJW1966
Posts: 69
Joined: Nov 2012

Thank you Katie!
My experiences here so far have been great! lots of great advice...warm welcomes.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Welcome to our little piece of the internet, its the club that
no one wants to be in but you will be sure glad you found it.
I finished 33 rads only ( no chemo or surgery ) for ..
High Stage II Tonsil . HPV+.
I'm almost 7 months post treatment and doing good, no meds
or pain management. I'm eating pretty much anything even though
the taste and saliva are not quite there yet but other than that I'm
doing what I did before the big C. I'm working, I go out for drinks
with the guys, travel, its the same as before ( almost ).
There is life after cancer all be it a "new normal " it gives hope to
the newbee's that they will get to the other side.

Ps, I never really got mouth sores or mucus or a burned neck
but I did use, mugard, and aloe, and salt/baking soda. (Magic mouthwash didn't
work for me )
I also took a natural product for my immune system all through
treatment and even to this day and will continue.

God bless
Tonsil dad,

Dan.

luvofmylif
Posts: 344
Joined: Sep 2012

My husband is presently going thru treatment for Stage IV tonsil/BOT cancer. He just finished his 17 th radiation out of thirty and 2nd of three Cisplatin. Honestly it has not been too bad until this week.

Everyone on this site is so knowledgeable and helpful. They also care about their fellow warriors. I am hoping and praying for you and all on this site for success as you battle this disease. It's hard but like everyone tells me one day at a time. Fear is my biggest enemy and my mind wanders to bad places sometimes. But, everyone on here gives me courage, inspiration and hope and that is priceless.

Stay focused on the prize which is beating this and continuing to live your life one day at a time.

Joan

AJW1966
Posts: 69
Joined: Nov 2012

I too do believe in life after cancer but it's getting to the end of treatment that i am already struggling with. Today marks the halfway point. I know that how i feel now is a mere preview of what's coming and i'm afraid.
Thank you for your statement, it is encouraging.
And God Bless you too....all of you.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Alan,
When I was originally diagnosed, they thought it was a benign papilloma. Imagine my surprise when they came back and told me that what I really had was a very aggressive Squamous Cell Carcinoma in the BOT. I would imagine they have some good basis for thinking that your
primary is BOT. That being said, all the things you said are quite natural. My treatment was in 2004 but I vividly remember thinking after my 11th rad treatment that I can't take any more. I came very, very close to telling them to stop and just let me die. I was doing chemo at the time also. Just hang in there and you will get through the treatments. I'm going on my 9th year of remission now. I'm not going to lie to you and tell you it's been a bed of roses. If you've read some of my other posts you'll know that radiation might cause problems later. You can overcome them. Good luck to you and, once again, hang in there.

AJW1966
Posts: 69
Joined: Nov 2012

I too was originally misdiagnosed. Tests came back negative from needle aspiration and it was ruled "cystic mass". Thank God i decided to have it removed. Found it was cancer from the frozen biopsy while i was in surgery.
Today is half way point. 15 more to go and i already feel like saying "stop..i'm done!".
But with the advice given on this site about how to manage certain effects is helping me a lot.
Thank you again!

Alan

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Teasing, Dan. In my case, it was called Miles Mixture, and it didn't work for me. I got pretty frustrated during treatment hearing EVERYONE sing the praises of Magic Mouthwash. I was happy for them, but jealous.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Like you mentioned, everyone is different...

For me somewhere around where you are, I plateaued out...didn't really get any worse, nor better until a few weeks after finishing rads.

Welcome...

Here is a link to the SuperThread, excellent infomation and contributions.

SuperThread

Best,
John

AJW1966
Posts: 69
Joined: Nov 2012

Wow! I can only pray that i have peaked with the effects of rads.
What's your secret? : )
Thanks for the welcome!

Alan

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

1 teaspoon salt and one teaspoon soda to a quart...tho I made mine with less water...I used a 20 oz water bottle to mix it in.

Do check out the link that John gave you for the Super Thread, there is SO MUCH information in there...practical things to make this a less miserable journey.

p

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Actually my mixture for rinse and spit was a few tablespoons of hydrogen peroxide and a scoop of baking soda in a 1/3 glass of water...several times a day.

AJW, I was lucky I guess..though sore inside the throat, it was doable. External never really got much worse than a bad sunburn, and dark peeling skin.

I took a lot of warm - hot showers to slough off the dead skin....

For whatever reason, it worked for me.

JG

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

When I felt I was truly miserable, I kept reminding myself of how far I'd made it so far, and that I only had "x" days left, and I needed to compare the "x" to the YEARS I'd be gaining. You sound like you're right on target to me, too. I had really good nausea meds that I took on schedule, so I didn't have serious nausea issues.

I, too, was diagonosed with BOT. For me, it was Stage IV, two lymph nodes involved.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

As others have said: here is great info about everything you need to know. People here are sooooo knowledgeble, smart, positive and there is always somebody who will answer your questions and try to help you! It's an amazing place to be!
My Dad finished his tx in September for Oropharyngeal cancer (primary on the base of his tongue with multiple lymph nodes involved, Stage IV, HPV negative. It was tough for him in the end anf especially for two weeks after tx. He didn't have PEG but was admitted to hospital twice for IV fluids. He still has problems with (probably) thrush and pain where the tumour was. But overall he is doing ok... Feeling tired, sleeping a lot... Actually pretty much the same experience as many people here.
So, you just stay here on this board and you will get through it!!!

Sam999
Posts: 305
Joined: Mar 2012

Hello Alan,

Welcome to this wonderful world of cyber friends. I am sad that you had a reason to look for this but happy that you found it. I finished my tx 4 months back and could not have done it without help from helpful folks on this site.

I also used mugard and found it to be very useful. I also added caphasol towards end of tx.

Journey is slow and not easy but you will get thru it.

I am 4 months post tx, started working..can eat most food...life is feeling almost normal.

Sam

KJCorri
Posts: 14
Joined: Aug 2012

Hi Alan, I'm pretty new here too, diferent Dx (sarcoma- right maxilary sinus- stage 3) so I don't have much useful advice for you- except to say- hang in there. Try to stay positive, and make plans for "after" so you have something to look forward to. I felt like you do when I was half way (i am about 2/3 way through rads now) through- but all you can do is take it one day at a time, you can do it!
Kjcorri (kylie)

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