Squamous cell carcinoma of the throat

You are on the right Message Board
First of all, very sorry to hear that you have joined our ranks. But, the fantastic news for you is that this is indeed the place to seek support, helpful insight and a portent of things to come.

Please give us some specifics of your situation. For example, age, sex, nature of the diagnosis, what has taken place so far (surgery, biopsy, MRI, PET/CT?). Do you have Pathology info?

With some of this info you will be able to link up with some, if not many, of the folks that will fall very close to being in your same situation.

There is hope. Medical technology is miraculous. The human body is a finely tuned instrument. Please, and I know this is easier said than done, please don't panic just yet. Talk to us and we'll do our best to guide you through what may be the toughest fight you have ever fought. The goal is well worth it, is doable..............and the alternative, well that's not an option I don't think.

So, again, please give us some details to work with and we'll collectively do all we can to help you.

Have faith..............JK

Hondo said:

G’day markosheetso


Sorry to hear the news but there is life after cancer, like jkinobay said you are in the right place for help and friendship

Sorry that you had to find this place
Well the rollercoaster ride begins for you now. But strap yourself in tight and you will make it. Yes please provide more info, if you know it yet? where is your primary site, has it spread to the lymph nodes. What Side. Any sypmtoms and what led you to diagnosis. Most importantly where are you being treated? Is there a caregiver in your life? This is a good place to start and come back to.

doitforoj said:

sorry
I too am in your shoes. Found out 3 weeks ago that I had scc. Base on the tongue cancer. 4 cm lump. Spread to 4 lymph nodes on the right side of neck and 1 on the left. Pet scan showed cancer has not spread anywhere else. in 3 weeks I will begin treatment. chemo and radiation. That is as far as I can tell you about things. The best thing I ever did was make a simple post like u did on here. These people understand like no one else will in your life. A club nobody wants to join, but a membership that is more important then any in your life. Your family and friends (if like me...love and support me and have been wonderful) are so important to you on a daily basis. But these people will be so important for you on those quite moments you have with yourself. Trust them and use them. They and I are here for you.

Kurt (Soon to be survivor)

Squamous Cell Carcinoma
I have SCC of the larynx, stage 3 and just finished treatment (chemo and radiation) in August plus targeted radiation of my left lung for NSCLC. As everyone else has stated, if you give us more of the specifics we can help you with advice, encouragement and our experiences. Have you met with your cancer team and discussed your treatment plan? Once we have more info about your type of cancer you will be amazed at the number of people who will able to help you through this very difficult journey.

I do have a little pre-treatment advice, first, EAT, if you can gain a little weight now it may help you later on as most of us lose some weight during treatment. Second, drink plenty of water to keep yourself hydrated, this will become very important as you start your treatment. Last but not least, try to remain calm and optimistic, your emotional health plays a very big part in your recovery.

We are all here to help you!! Please post again soon so we can help alleve some of your fears and concerns. Cancer treatment is not a pleasant journey but it is doable, especially if you let others help you and that's what we are all here for.

I also wanted to let everyone know that I got to do the "happy dance" yesterday after they removed my feeding tube - YAHOO!! I've been back on solid foods for a month now and am holding my own with my weight. I am having the "scope" tomorrow to look at my larynx and am hoping for some good news - so wish me luck :-)

Best wishes to all of you,
Glenna

SCC Tonsils
I just finished my treatments a few months ago (Jun18th)....

I had been diagnosed with stage III SCC cancer (HPV derived) in my right tonsil, and a small tumor near my right ear. The tonsils were removed and the treatment was scheduled.

My treatments consisted of, Taxotere, Cisplaten and 5FU three sessions each three weeks long each session. The first Monday was the chemo (Taxotere, Cisplaten and the 5FU from a pump for four days). Then hydration and Neulasta for bone marrow the 2nd Monday, all else was rest.

After those sessions I had seven weeks with Carboplaten on Mondays, Amofostine injections in my stomach everyday followed with radiation M-F.....(35 exposures)

For me the radiation was the worst part of it all, especially the last two weeks and the following three weeks after. That was the hardest part cocnerning throat pain when swallowing. I dodn't have a PEG and didn't really need one. Though the period of radiation where I had the most problems I mainly survived off of water and Ensure Plus...needing pain solution just to drink those....

My neck took a good hit of pealing skin, but nothing much worse than a severe sunburn....nothing not tolerable. If it would itch or ache, warm showers always seemed to sooth it for me....

Just make sure you stay hydrated as much as possible, and then more.... Make sure to communicate with your doctors any symptoms you are having. My chemo doctor was awesome, she had a drug or solution for anything that I encountered....I had hiccups for awhile, she had a drug, I had heatburn and acid reflux, she had a drug....LOL....she took very good care of me.

I never physically got sick one time....there were plenty where I was neasuous though. I was very achy for a few days after the first Neulasta shot also, but not the next two shots (one shot for each session the week after the chemo).....

Like I said and very important is to stay hydrated, I didn't drink enough the second round of chemo and became very tired and sick feeling...all I wanted to do was sleep. The more I slept the worse I felt, the more I wanted to sleep (not drinking any water)....they gave me a few bags of hydration fluids and it was like a light flipped. I immediately felt better...never did that again.

Eat what you can and when you can, soft mashed potatoes, mac and cheese...if nothing else Ensure Plus. You'll be drinking a lot of that later anyways... It has the most calories, nutrients and vitamins than anything else I found...almost 350 per drink.

We are here for you and you can ask anything you want when you need the support.

God Bless and surround yourself with positive thinking people....

John

debbij said:

newly diagnosed too
my husband was just diagnosed with stage 2/3, base of tongue tumor as well as bilateral lymph nodes...already has had his first chemo..going for #2 nov 3 and #3 nov 30..then dec 27 in for 5 days for continous chemo and 2 radiation treatment a day..this will go on 1 week on and 1 week off for 10 weeks...from what we understand, we are in for one hell of a ride...fatten yourself up...he was told to gain at least 25 lbs before the radiation treatment starts


scary as hell but we all have to stick together to give each other support

you're in my thoughts and prayers

debbij
My husband was diagnosed with stage2/3,base of the tongue and a lymph node in late July. His treatment involved 35 radiation treatments along with a weekly infusion of Erbitux.

He is now 4 weeks post treatment. His onco has scheduled a PET for 3 month out - around the first of Jan. He also sees his ENT on a regular basis.

He is now drinking his Boost and eating some soft foods each day-no longer is relying on his feeding tube so that will hopefully come out in a few weeks.

You are in for a hell of a ride and it is tough and continues to be tough following treatment, but you will make it through. As a caregiver, you will need to remember to take time for yourself. Lean on your girlfriends. This website has been great for me. I have learned alot and everyone totally understands what you talking about.I know way more about this disease than my husband.
PK

pk said:

debbij
My husband was diagnosed with stage2/3,base of the tongue and a lymph node in late July. His treatment involved 35 radiation treatments along with a weekly infusion of Erbitux.

He is now 4 weeks post treatment. His onco has scheduled a PET for 3 month out - around the first of Jan. He also sees his ENT on a regular basis.

He is now drinking his Boost and eating some soft foods each day-no longer is relying on his feeding tube so that will hopefully come out in a few weeks.

You are in for a hell of a ride and it is tough and continues to be tough following treatment, but you will make it through. As a caregiver, you will need to remember to take time for yourself. Lean on your girlfriends. This website has been great for me. I have learned alot and everyone totally understands what you talking about.I know way more about this disease than my husband.
PK

thanx pk for the
thanx pk for the boost...

did your husband have a feeding tube put in? mine is facillating on this idea...i think he should do it now before he begins the radiation but he wants to wait until he needs it...i think it will be far more painful then...he's a stubborn guy...i think it will confirm to him that he has cancer as if the baldness and the chemo thru his veins isnt confirmation enough.

one day at time, i suppose

debbi

pk said:

debbij
Hi,
Protocol for Bob's oncologists was to have a feeding tube placed prior to radiation and Bob did. He did not use it during the first couple of weeks during his treatment, but after that it was his lifeline. Eating is just too painful. I would say he relied on in for the last 3 weeks of radiation and the 2 weeks post rad. It's not as bad as it sounds and it really is important not to lose too much weight (he's lost 30 lbs even with the tube)- his oncos and ENT are very firm on keeping weight on. I know what you mean about stubborn and you will become the vigilant NAZI!!!! ha ha!

How many rads is your husband scheduled for and what about chemo? Bob had 35 radiation sessions along with an Erbitux infusion each week. The Erbitux caused a nasty rash, but no hair loss.

As I said he will have a PET scan in early Jan. and has met with his ENT once since treatment ended. He will meet with him monthly. His radiation onco was very pleased that by the second week of rads, his swollen lymph node had almost disappeared.

Keep asking us questions. I have found this to be great support. And yes it is one day at a time.

PK

Jim is scheduled for his 2nd
Jim is scheduled for his 2nd chemo on november 3 then a 3rd on november 30...he will then check into the hospital on dec 27 for continuous 24 hour chemo with 2 rad treatments a day for 5 days..this will go on one week on/one week off for 10 weeks. he is suppose to go back the tuesday after his treatments for hydration and blood work but i am going to to that at home... i work for the hospital he will be in so they are allowing me to do this...the hospital is in NYC...i work for one of their satellite offices on Long Island...we live on the eastern part of the island and it takes us almost 3 hours to get into NYC so the Nurse Practitioner i work with is going to show me how to do the IV and then i'll take it from there...i'm a phlebotomist so she will get it started and then i will take it from there

we talked some more about the feeding tube this morning and his sister is really giving it her all and i think he is caving...it just makes sense to do it now !!

Mt. Sinai is really being very helpful to me...letting me take time off...giving us the VIP treatment pretty much...which is a godsend !! they are even letting me stay in his room on New Years Eve, which is pretty awesome.

i just cant believe this is all happening...he just turned 60..our daughter is 22 and almost out of the house...we were planning so many things this summer...italy, france...we thought we had life by that balls..things were going so good and then BAM...its like, what the f&*k!!!

i do have to say he is one of the sexiest bald men i have ever seen..he really looks hot !!

i have good days and bad days...sometimes it just comes over me like a tsunami and i am overwhelmed with grief...its hard sometimes to put on a brave front but ya know what, sometimes i just cant...and i hate to lose it in front of him but sometimes i just cant help it.

i'll be back tomorrow night..its getting late and i put in a 10 hour day and i am shot!!

have a good night..give bob my best and i'll talk to you tomorrow

thank you PK for everything

scc of throat
Hi, in April I was diagnosed with laryngeal cancer, stage 3. After meeting with the doctors We all decided to go the radiation and chemo route. I had 35 rad sessions, ask if the machine is the latest trilogy machine, this is the one that circles your head and neck firing beams in 12 or 13 locations to get at the tumor. I had 3 infusions of high dose cistplatin. I finished my treatment on June 17th. I am feeling much better now and am back to a somewhat normal life. I had a pet scan last month wich showed clear. A videostrobe of my throat showed the tumor was gone. My voice has returned to 95% normal. I lost it completely before the treatment and did not know whether it would come back, it did. A lot of good cells and glands are going to be kicked in the teeth. The dry mouth, no taste or lousy taste, thyroid damage, saliva gland almost obliterated. eat and eat and eat. Drink drink and drink. Weight loss can be dramatic, I lost 16 lbs fro diagnosis to now, it is just beginnig to move upwards by a couple of pounds. My taste returned in August and is now almost all the way back except for chocolate, that always seems to feel slimy. Radiation will cause a flood of mucus, especially if you try to slepp laying down, I slept in a stting position for 3 months, but again by August I was sleeping prone again. It's gonna get rough but hang in there and it will be worthwile. Denis

pk said:

Hi Debbij
Shock is right when you hear this news. I was driving home when Bob called and his sore throat and earache had turned into cancer!!!! Unbelievable!!!

Hope your husband agrees to the feeding tube. He needs to have it put in prior to treatment as he does not need one other thing to deal with once the chemo and radiation starts. He will also need it. It is so important that his weight not go down too fast and without the tube, I can't imagine the weight you would lose, zapping the little energy that you have to fight, as well as the fact that minimal nourishment is being taken in.

It is tought to absorb this when it happens and the treatment is really tough, but a few things I know for sure: not one of us is exempt from crisis in our lives, life does go on, it is really important to embrace this once the shock is over and just plow forward, don't give up on plans you've made (maybe they have to be put off for awhile or altered but don't give up on them), cancer is treatable and curable,the recovery for this treatment is far longer than most, take care of yourself, as a caregiver, too, lean on your friends and family, have cocktails when it gets tough!!!!!

Your husband's treatment sounds quite different than Bob's. He had radiation everyday for 7 weeks and chemo once each of those 7 weeks. We live in a small community just outside of Minneapolis and have a wonderful medical facility here so Bob's radiation oncologis, chemo oncologist and ENT specialist are all right here. What a blessing to not have to travel for treatment or appts.

As I said before, Bob is out of treatment now for 4 weeks and is not using his feeding tube although he still has it in place. Eating is tough - nothing tastes good and sometimes causes pain, he hates drinking Boost, and is anxious for the few things that he does eat to taste like something. He is also very tired of being fatigued. All of this should pass with time - it's just that it takes soooooo much time.

I know how you feel about plans for those fun times together. You never know - maybe France and Italy will still be in the cards for this summer - don't give up on it just yet. We are both retired from teaching and are planning to spend our usual 2 months this winter on St. Simons Island, GA. I am leaving on a cruise Nov. 28th with a girlfriend (planned prior to this **** happening) so I'm going. Feel a little guilty about it, but.....

Hope you had a good day today. Hang in and hang on!! You will get stronger and stronger as time passes. I'll check in with you again later tonight or tomorrow.
PK

got some information from
got some information from cancer care and antioxidants...the nutritionist at Mt. Sinai said not to ingest any antioxidants as they may interfere with chemo

everything we are reading says quite to the contrary...all the articles say to take as much in as you can.

any thoughts on that?

he is having a good day today...the moustache is gone...he looks odd, i've never seen him without it in 36 years...feel like i'm having an affair !! lol

we have a put together a list of questions for the oncologist we will see on Tuesday for jim's second treatment. its a good thing they never tire of our questions because we a truck load !!

jim still isnt sleeping well..he sleeps for about 4 hours night...they said he could take benedryl but that wires him and the xanax isnt really helping so i am going to ask for klonipin. Does Bob have trouble sleeping?

went out for dinner with friends last night...we all had a wonderful time...jim wanted to keep on going but i had to put the brakes on...i think it was the tequila in him that was doing the talking. he's not a big drinker and had 2 shots last night after dinner and had some wine with dinner...it was good to see him relaxed and having such a good time

beautiful weekend here...hope you are having one too

talk soon
debbi

debbij said:

got some information from
got some information from cancer care and antioxidants...the nutritionist at Mt. Sinai said not to ingest any antioxidants as they may interfere with chemo

everything we are reading says quite to the contrary...all the articles say to take as much in as you can.

any thoughts on that?

he is having a good day today...the moustache is gone...he looks odd, i've never seen him without it in 36 years...feel like i'm having an affair !! lol

we have a put together a list of questions for the oncologist we will see on Tuesday for jim's second treatment. its a good thing they never tire of our questions because we a truck load !!

jim still isnt sleeping well..he sleeps for about 4 hours night...they said he could take benedryl but that wires him and the xanax isnt really helping so i am going to ask for klonipin. Does Bob have trouble sleeping?

went out for dinner with friends last night...we all had a wonderful time...jim wanted to keep on going but i had to put the brakes on...i think it was the tequila in him that was doing the talking. he's not a big drinker and had 2 shots last night after dinner and had some wine with dinner...it was good to see him relaxed and having such a good time

beautiful weekend here...hope you are having one too

talk soon
debbi

Hi debbi
I have not read or heard anything about antioxidants and chemo. But once Bob got going with his treatment I don't think he injested too many antioxidants. Unless Boost has a ton.

So glad you were able to enjoy a night out. Friends and a couple of cocktails can do wonders for any of us.

We are going to watch the Vikings / Greenbay game tomorrow with friends and will munch on Bloody Mary's and Quesadillas. Bob said he is going to take a case of Boost to share!!!

Having a beautiful weekend here too - watching college football tonight - not my favorite, but it's fun to be in the same room doing something together as he slept and napped so much during the last weeks of rads and the 2 weeks post.

Later
Phyllis