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Base of Tongue Cancer/Head Neck Cancer

pennynl4
Posts: 49
Joined: Jun 2009

My 58 yr old husband was diagnosed with cancer of the head/neck and base of tongue just about 4 weeks ago on May 20, 2009 and had head and neck surgery 3 weeks ago to remove one cancerous lymph node and 5 other non-cancerous lymph nodes and a non cancerous saliva gland. We are told by the Oncologist that he will have chemo once a week and radiation 5 days of week for 6 weeks. As you all know, once being told this sends everyone in a state of shock. Since he will be having radiation on the tongue, we were told it will be very difficult to eat and will have lots of pain and he will have a feeding tube towards the end of treatment. We are both wondering how a person survives the treatment enough to get up an go again to the next treatment.

We are both fearful and wondering about the survival rate after treatment.

If anyone can share anything that would be helpful, please do.

Artray
Posts: 24
Joined: May 2009

pennyn14,
My husband went thru this from Dec 29 finishing 7 weeks of radiation/chemo on Feb 22nd. He did not start with surgery but we'll find out this week if that's needed for whatever remains.
They insisted on putting the feeding tube in at the beginning and I was really against it but had not choice. IT WAS A SAVOIR! He started using it after 3 weeks of treatment and I could make certain that his meds, liquids and foods were administered, sometimes with alot of resistance and not always in the amounts I wanted but it was so easy on him to not have to fight to swallow anything.
I won't kid you, there were times when he refused any more liquids and I had to force him to take the food (the VA supplied us with all the liquid nutrition and still does) but the tube made a huge difference!
Even now, he tries to eat at least 1-2 meals a day but takes his pills and other meals thru the tube and he is able to maintain his energy levels and work physically about 70% of his former levels so I think that's great! Although we know that the tube can be a crutch, when it gets too difficult to swallow or his throat starts to swell and bleed he can resort to the tube for 1/2 a day and give his throat a rest.
Not have to swallow all his nutrition and liquids I think really saved him from the pain we hear so much about...Best of luck to you!

pennynl4
Posts: 49
Joined: Jun 2009

Thank you Artray for your feedback. Thank the Lord that his is all behind you and someday it will be for my husband too.

We visited the radiation doctor today for the first time and this doctor said my husband probably wouldn't need the feeding tube because they are changing the kind of chemo he will be getting. He even explained that my husband would have a hard time swallowing and would have extreme pain in his mouth because of the radiation. So now I am confused. Confused because they are changing the chemo they had originally planned and confused because this doctor said he wouldn't need a feeding tube. We are still completely overwhelmed especially today with 3 appointments and 2 hours at the radiation doctor.

I have another question. When my husband takes chemo, will he be in a room with other patients receiving chemo? He was wondering that and that is a question we forgot to ask the doctor.

How did your husband and you get through this? I know everyone does, but it must have been so unbearable for your husband.

How long will he continue with the tube?

Thanks again for your reply and if you can think of anything else, please let me know.
Penny

Jason1111's picture
Jason1111
Posts: 64
Joined: Apr 2011

What did the VA supply you with? My father just completed the radical neck disection and we got home this past Sunday. i have bought 3 cases of Glucerna and a case of Juven to help with the recovery efforts. He has full VA disability benifits and was just curious as to what the VA will provide.

Thanks
Jason

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

As to how you survive the treatment, is you just do. I had 10 weekly chemos with 46 (10 weeks less weekends and 4 days for holidays) of radiation. I didn't have the tube during treatments and lost 95 pounds. It was very painful to swallow and toward the end I was having a single glass of gatorade a day. This was all I could get down. Radiation can cause fatigue so the easier it will be to get nutrition in the better.

There is also a rinse called Magic Mouthwash or Magic Mix that numbs you so if he is able to bare the pain to swallow, this might help a bit.

Treatment can be rough, but the alternative to no treatment is much worse.

Keep a positive attitude and a good sense of humor as this helps get through the tough times.

pennynl4
Posts: 49
Joined: Jun 2009

Thank you Sash for your reply. We saw the radiation doctor today for about 2 hours and he said that my husband now would probably not need a feeding tube. He also told us that they will be giving a different chemo than originally planned and won't be as hard on him. However, he stated as we all know that the radiation will make eating and swallowing very difficult as the weeks go by. My husband is small bone and on the slight side as it is. He lost weight after his neck dissection surgery. I will have to talk to the chemo doctor and ask him about the feeding tube.

How long ago was your chemo and radiation? I know I read your story a while ago, but right now I just can't seem to remember. And how are you doing now? Thank heavens this is all behind you.

The Magic Mouthwash must be a life savior. Is that the pink rinse I have read other people talking about.

We both try to be positive, but we both have our moments.

Thank you again for you comments and let me know if you think of anything else we might need to know.

Penny

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

Radiation ended Dec 31, 1999 and chemo ended the middle of March of 2000. They were supposed to end around the same time, but because of blood counts, there were weeks that I wasn't able to get my chemo. I had my PEG installed April 20, 2000 so it would be in place for surgery. Surgery was the end of my treatment and that was May 1, 2000. I had the tube removed July 2000 so I was only on it for a short period. I have been NED ever since.

The rinse is a pinkish color so it is probably the same stuff. Just make sure to shake it well as the numbing agent is the lightest ingredient in the mixture. The hospital forgot to put the sticker on my bottles and the first dosage I took I didn't know to shake it so I had straight numbing agent. My entire head was numb for 3 days.

mark10
Posts: 4
Joined: Jan 2006

Penny;

Sash is right, you just get through it. I am a four year survivor and I have to say things are just as hard on the care giver as they are the patient. There are many debates on to have on not have a peg. Radiation and Chemo effect people differently so there is no right answer, the key is to have you husband swallow somthing every day. The more he swallows the quicker his recovery will be. In my case I drak one boost a day and got the rest of my nutrition thru the tube. My Dr's gave me some type of morphine base drops that I would put on my tongue to dull the pain. Some days I was able to drink the whole bottle, other days maybe a swallow or two.

You really have to get on your husband to swallow, while he may hate you at the time, the functionality he will have after recovery will depend on it.

Dest of luck

Mar

pennynl4
Posts: 49
Joined: Jun 2009

Thank you Mark for your reply. Now the radiation doctor doesn't think my husband will need a tube because they are giving him a different chemo as first planned. But I thought the tube was because it is hard to eat and swallow when having radiation on the tongue. I have a hard time talking to my husband about the radiation side effects because his gives him more anxiety.

Also, I am wondering how much of the pain does the pain medication take care of?

Please let me know if you can think of anything else or if you can think of some encouragement for my husband.

Thank you and congratulations for being a survivor!!!

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

i tried the oxycotin and fentenal patches and ended up with a morphine ER (extended release) plus liquid Roxicet for break thru pain every 6 hours or so . That was the combo that worked for me i stayed on it till about a month after treatment then i just used the liquid Roxicet which is like a liquid vicodan or percocet and i just cut back gradually on that stuff for a month or so and i didnt have bad pain.
The liquid roxicet 10 ml dumped in my feeding tube worked great for me .
Why anyone would not get a feeding tube is beyond me. Why doctors dont insist on one i cant understand . Just because they are afraid you will stop swallowing? You can keep sipping water as best you can. And with a tube you can get more water and food in you.
And the more water and food you can get in you the better you will feel. When it got bad weeks 3 thru a month after radiation the feeding pump set up was fantastic. Then gravity feeding was easy after that. I made great mixes of stuff Supreme Foods powdered veggies and fruit with flax seed oil and Amplified Muscle Meal from GNC i still am taking a shake these things every day. I am 8 months past treatment and i feel great. I took the Jevity they gave me also during treatment. I thank god for EggNog i was luckey to go thru treatment during eggnog season it strangely was the one thing that tasted decent and it packs on the pounds.
I had a medi port as well for the chemo drugs and got a home nurse to hook up a thing in it so i could put IV fluids in myself during the worst times weeks 5 thru a couple weeks after radiation treatment stopped.
The more water and food i got in the better i felt PERIOD.

pennynl4
Posts: 49
Joined: Jun 2009

Thanks for all the info. I need to copy and paste everyone's suggestions and comments in a file so I can get it all together.

I will be talking to the doctors again before treatment starts. He just had a port put in a couple of days ago. I know tubes are put in the same time.

Was your pain mostly gone with your pain medication? That's want my husband is afraid of....not enough pain control. He is very nervous about the treatments. I am afraid too for him and trying to get through this.

I am happy for you that you are over your treatment. You must feel like a million bucks!!

How much care does a feeding tube take and does a nurse come in very often?

Thanks again and God Bless!
Penny

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

With the morphine and the Roxicet i had no pain. I think they over do the care needed on the tube. I just washed with Cetaphil soap.
Having the attachment IV thing in my port for the real bad weeks 5 thru a couple weeks after was delicate. I dont read about other people who have done there own IV fluids like I did but i wanted as much fluid as i could get. But the peg tube didnt bother me in the slightest. I actually kept putting of getting it out . Not i have to drink my protien supplement shakes. It was easy just to dump them down the tube. Cetaphil soap and neosporin on the tube and i never had a problem. I just shower as normal.
I did 2 months of induction chemo then 7 weeks of radiaton with chemo everyday on weeks 1,4,7 with double radiaton on fridays.
Used the feeding tube after 2 week of radiation. I have a 3 year old son so i was up an moving around all day.
I heavily medicated myself kicking the meds wasnt to bad . I read alot about people afraid of the pain meds.
I think it really comes down to getting as much food and water into you. The more food and water you can get in the better you feel.

Artray
Posts: 24
Joined: May 2009

Penny, Sorry for the delay, my husband was reading the boards and said' you have to reply to this lady!'
The feeding tube was insisted on by the drs and we still have it after 4 mos after radiation. Although he is now eating a couple of meals a day, we have tons of food that they gave us for tube feeding and when he's really tired or in a rush it's a sure way to get a really balanced meal (REALLY balanced) quickly.
Throughout the treatments, MY husband refused all pain meds as they really don't do well with his system. He took tylenol, thru the tube, daily but that was all. A couple of times I slipped him so morphine with the others meds but he just got headaches or really really groggy so it wasn't a good move.
I can't imagine, now that we're on the other side of it, how drs feel it's ok for you to just fight thru this with minimal sustenance knowing that the pain of swallowing stops the patient from getting any good nutrition OR liquids. At least, even when he was in the deepest symptoms of the treatments it was pretty easy to get the meds (crushed pills in liquid) and water into him at all hours of the day and night. I was waking up at every 4 hours to make sure he got his meds and if I had to force him to try to swallow we would've been out of luck!
Also, the type of chemo, I don't think, effects the swallowing like the radiation so I don't understand why that would make a difference. Even now, after 4 months, the outside skin of his neck still bothers him from time to time, can't imagine what the inside of the throat is like. So to not try to make it easier to consume liquids and nutrition makes no sense...tell the Dr's that your boardmates INSIST on a tube!!!
Otherwise, like it's been said before, we do the best we can and get thru it. I had no idea this board existed when we were going thru it and I just plodded along praying that there would be some light at the end of this really dark tunnel...and believe it there is! I know that what you're going thru is scary and incredibly unimaginable but for me, having gone thru it and knowing what we know now...the course was the best it could be...just stand your ground and DO NOT let them ride over you...you know what's best in your heart and gut so go with that!
You have our support...

pennynl4
Posts: 49
Joined: Jun 2009

Artray, thank you for getting back to me. All the information I can get will help my husband and me get through this. I know it makes no sense to do this without a feeding tube. I don't want some secondary problem because there was no tube. I will talk to both the chemo doctor (who originally recommended it) and the radiation docotr (who said he wouldn't neeed it) and plead his case.

I keep coming up with more question. How soon after the chemo and radiation will my husband need paid meds. We had a long weekend trip planned before this all came up and he doesn't want to go. It is the the weekend of the first week when the treatments start. He would have only had one chemo treatment and maybe two or three radiation treatments. Will he even feel like going anywhere......it's a 5 hour drive and he was going to drive if he felt like it. He now just wants to stay home and not go. I have told him it might be good for him because for 7 weeks he will be doing radiation and won't be doing much of anything.

I just happend to stumbele on this site when I was looking up head and neck cancer. I think is is great to get first hand information form everyone.

Thanks for all your support Artray and everyone else who has commented and shared their story.

God Bless all of you.
Penny

Artray
Posts: 24
Joined: May 2009

Pennyn14,
GO, GO, GO! on your getaway as it will be awesome for the both of you!
We started treatment on 12/29 (feeding tube inserted, chemo and radiation began) and he got
7 weeks of daily radiation with 3 chemo session. Around the 3rd weekend in January we were able to leave town for the holiday weekend and go to our second home in Vegas. That was the weekend he stopped eating as it became just too hard for him to swallow but we did go see a show Sat nite and he was really feeling fine. The next week he had his second chemo session and from then on it was downhill but the first couple of weeks he did really great!
The one good thing about doing the daily radiation is it got him out of the house every day and I would push him to do errands with me as long as he was still feeling well enough. I believe that if you let them just lounge on the couch they'll wallow in sympathy and there's no time for that!
So, go on your trip and just make sure you can help with the driving. That was the biggest thing for us as my husband ALWAYS does all the driving (he loves it!) and from this trip on he started relinquishing the wheel to me when he started feeling drowsy...and that was no problem at all!
As for this site, I only wish I had found it when we were starting out as it would've given me alot of solace. I just talked to someone who's starting treatment (her husband is) for esopagheal cancer and I sent her to these boards.

Good luck, Penny
What's the next question?

Jeani (wife of ArtRay!)

pennynl4
Posts: 49
Joined: Jun 2009

Thank you Jeani for answering all my questions. It's the not knowing that is so frightful. My husband hasn't gotten on this site at all. It has helped me so much.....knowlege and information is power!! He is depressed as it is and I think he might get more depressed if he hears how really bad it can get.

We will try and go on this weekend trip to Seattle (we live in Spokane and taking our daughter and a friend to a concert and going to a graduation party). Hopefully he will fine and I think it will be good for him.

MY NEXT QUESTION......How did you know I had more? Ha Ha!!! How was the recovery when your husband had the feeding tube put in? My husband had the port put in last week....wish the feeding tube could have gone in at the same time.

Also, they say cancer patients shouldn't be around crowds. We have his sister's graduation party to go to and a little concerned.

I think that's all I can think of at this time. Thanks again and good luck to you both.
Penny

pennynl4
Posts: 49
Joined: Jun 2009

Victor, again thank you for answering my questions. So it sounds like you were able to eat the first couple of weeks but not after. Even tho the chemo doctor originally said my husband would have a feeding tube, he didn't schedule to have it put in at the same time as the port.

I will be talking to the doctors again before chemo and radiation. I hope I don't have a problem convincing them a feeding tube is needed. My husband is slight build as it is.

John oldtmr
Posts: 33
Joined: Jun 2009

Just got diagnosed Fri.06/19, and just found this site and joined. All of you have helped so much. It is very scary but I've got to do what I've got to do. I'll try to get on here as I and my wife,Ruth, need all the help and info we can get. Thanks To All.

ravenswing115
Posts: 3
Joined: Jun 2009

Thank God there is a site out there to encourage my evil step-Daddy-O who was just diagnosed (John oldtmr), and my Mom......and the rest of us who love him and worry about him.

As an RA patient with MANY doctors, I have found that if you don't click with a doctor, or disagree with something he is telling you, changing doctors may be the best course of action. Often doctors will have one course of treatment they like and that is that. As I learned recently through a pain management doctor who put me through multiple PAINFUL spinal-epidural injections NEEDLESSLY. I switched to a different doctor in her practice, and now I have control of my pain. Please remember that doctors are human. It sounds to me like a feeding tube is the way to go.

I also want to encourage anyone afraid of pain medication. All narcotics are addictive, however, if taken as prescribed, and weaned carefully, there is no need to worry. There are also several medications to combat nausea from meds, whether chemo or pain.

God bless you all, and especially you Grampy. We're here for you!

Susana47
Posts: 1
Joined: Sep 2009

Hello all,

I have undergone a tongue cancer intervention last week.
Just as John, I was, and am, quite scared.
I just want to say hello to you all, and to thank you for the advice you have shared. I'm from Buenos Aires, Argentina.
Susana

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

Hi Penny,
I can't imagine why his doctor said a feeding tube was unesscessary. If it wasn't for the tube, I wouldn't be here today. I could not get any food and not much liquid down. I was hardheaded at first and didn't have the tube installed. After about three weeks of chemo and radiation, I had to have one installed. The next day, I ended up with a one week hospital stay because of my weakened condition. By all means, encourage your husband to have the tube.

After my 11th radiation treatment, I was very close to calling it quits. You learn to persevere. It beats the alternative.

Radiation though, is the g i f t that keeps on giving. Toward the end of 2004, I was feeling great, eating and working. That is until the after effects of radiation reared their ugly head.

My neck started getting rock hard and swallowing became more difficult after about a year and a half after the treatments. For the past two years, I have had monthly esophageal dilations to keep my esophagus open. I recently completed 80 hyperbaric oxygen chamber treatments which has softened my neck tissue quite a bit. My gastroenterologist says it is much easier to dilate me now so, hopefully, I won't have to go as often.

Encourage your husband to hang in there. It will get worse before it gets better but he can beat it.

P.S. I had to put spaces in the word g i f t, otherwise it comes out like this - gift. I didn't want you to think I was cussing at you :)

Pat_451
Posts: 2
Joined: Jun 2009

My husband went in for what we thought was a routine surgery to have a cyst removed from his neck. This was on April 3rd 2009. When they opened him up his lymph node was full of squamish cell cancer. We have been through 7 weeks of radiation and 6 chemo treatments. We are not post treatment and will not know anything until the end of the 3 months when they are able to take a pet scan. Has anyone here had any experience with this?

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

My dental hygenist found a swollen lymph node when I had my 6 month dental exam. (May 2009) My family doctor couldn't figure it out and sent me to ENT. He assured me it was a cyst and that he could remove it easy. Took a needle biopsy pre surgery and found squamous cancer cells. Sent me to cancer ENT. (I was 48) Went through 33 rads and 3 weeks chemo last summer. Just had 6 month PET and was all clear. Treatment was not easy. PEG feeding tube and port installed beforehand. PEG gone, port goes the 24th of this month. I had option of surgery with chemo rads or just chemo/rads. Doc said in his opinion outcome would be identical whichever I chose. Opted for no cutting. One thing he said to me on very first visit to him was that 95% of patients he sees with what I had are still alive. (He gets 10 cases a year he told me) I just had my 6 month PET scan and it was clear. I saw the ENT a couple weeks ago and he said that he expects a very good outcome for me. I will continue to post this site and will answer all that I can. Good luck to your husband and I will be thinking of him as his PET nears.

Mike

BMC777
Posts: 1
Joined: May 2010

My husband age 60 was recently diagnosed with base of tongue neck cancer. Treatments start next week with radiation and chemo every day for 33 days, except weekends. He is very concerned about the drugs prescribed of side effects. It looks like they want him to start taking them even before the side effect occurs. Who has experience with this? Thanks, BMC

Lena Rose
Posts: 73
Joined: Apr 2010

My 53 year old husband was also recently diagnosed with base of the tongue cancer. He is now on his 3rd week of radiation (5 days a week) and chemo (1 day a week) for 7 weeks. Not sure what drugs you are talking about. The anti-nausea drugs (zofran and compazine) have been very constipating. Thankfully he also had a feeding tube put in before treatment-he started using it this week to supplement since it's very hard for him to eat and he's lost 8 pounds in only 2 weeks.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad is on his second week of rad and chemo. He does not have a feeding tube yet. Is still eating but starting to get difficult. He has lost 8 pound also. He also was given the same anti-nausea drugs. Have they helped with the nausea? The nurse told me to add some fiber powder to his water, while he is still able to drink. How much water did they tell your husband to drink after chemo?

Hedwig
Posts: 5
Joined: May 2011

My hubby has just been diagnosed with head and neck scc. Lymph node on left side and left tonsil.we will meet the radiologist next week. We are overwhelmed with fear.any suggestions for us. He is 66years old. Thank you.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Sorry that you find yourself in need of our group, but there is a wealth of info and there are some very caring people on this board that can help you with every step of this long journey. One good place to start may be to look at the HNC Superthread which can be found on the first page of this board. It says something like:

HNC Superthread. A COLLECTION OF HELPFUL LINKS ONLY. (please post only informative links here) Help for some FAQ.

It is filled with many links and helpful info from diagnosis through recovery and beyond. Maybe that can spark you to ask more focused questions that we can more easily answer for you. Just know that there are many survivors here and we are doing ok. I personally was SCC stage 4 and I am still here over two years later.

Wishing you and hubby well.

Blessings,

Sweet

Hedwig
Posts: 5
Joined: May 2011

Thank you for your reply added some info today with our treatment plan so far. I truly believe this site will help and would appreciate any help from all of you. You and the rest of those in this chat room will be in my prayers. I hope everyone can enjoy this weekend in some small way and thank all the veterans who sacrificed for all of us. God bless you.

astar
Posts: 1
Joined: May 2010

Get the Feeding tube and port put in before you start your treatments.
I had base tongue cancer and got 42 radiation treatments and a chemo
treatment every two weeks.I got my feeding tube in after I lost 25
pounds. My last radition treatment was july 18 2009 I am cancer free
Now and I am 57 years old and I feel great and back to work. My wife
was my rock I don't think I could have done this without her.
God bless you and your Husband take the pain meds morfine and
Fitanal paches were mine.You can get there from here.

Moms son
Posts: 5
Joined: May 2011

My son was diagnosed Feb 9,2011. His feeding tube was put in March 14, after 2nd chemo treatment. He had 8 chemo treatments on Tuesdays, and 33 radiation everyday Mon thru Friday. He finished last treatment April 22, 2011. He was not happy about putting the feeding tube in at first, but now finds that it has saved him so much. He has not been able to eat anything by mouth since about 3rd week of treatment. He informs me that the foods have no texture or taste. But he does try to swallow water as much as possible everyday. Plus when they rinse out his feeding tube they put an extra water down it. The more water they get in their system the more it helps them. At least that is what his doctor told him. My son went into the doctors with a swollen right lymph node. He went to several doctor, several tests. He went from Hodkins, Lymphoma, to tonsil cancer. They took out his tonsils, No cancer in the tonsils, but they found a place at the base of the tongue. The treatments were done first to see how much they could shrink, or get rid of. He did get quite a burn on his neck that is healing quite well. His doctors seem to be happy where he is at this point. He has lost 33lbs. I am not happy about that. The doctors wanted him to get 7 cans of food down, but he seems to get only 4 - 5 cans. The weight loss is bothering me. He is very very positive as is the rest of our whole family. But, he pushes himself to keep going to a certain extent. I feel that if he listens to his body he will have to rest when it is needed. He is on morphine every four hours. He is 43, has a wonderful wife, and a 9 year old & 10 year old. He is so protective of his children, he didn't want them to know. He finally had to inform them, as I knew he would but he assured them their life and lifestyle would not be changed much except seeing Daddy laying around and sometimes not feeling well. He now awaits the doctors checkups. How long it will be, before he will be able to taste, and eat and get rid of the feeding tube. How soon life will get back to normal. Of course he is not working. And the first big thing, is the 90 day pet scan. You pray it comes back with everything gone and no surgery needed. As far as I can tell, You take each day at a time. You pray each day, not just for your family, but all the people & their families with cancer. And God willing you just keep going.

Anyone reading this may think, "Mom" is writing this? Trust me, if I could have taken his place I would have, but that was not an option. A mother never stops loving her children no matter how old they are. God Bless You all. I have been reading this site for quite a while. My son & his wife wouldn't get on the computer for fear it would just upset them more. But this has helped me be prepared for a lot of the things that do come up. Thank you all!!
Moms son

NW DINO
Posts: 29
Joined: Oct 2010

Just found this site with your post from last year. Hope you and your husband are doing well! I too am a 58 year old male that was just diagnosed with SCC with primary at the base of the tongue. Have had one chemo treatment (Cisplatin) with 4 radiation treatments. Noticed a lump on the right side of my neck last January. My primary care doctor ordered a CAT scan that showed inconclusive results - he told me the lump was benign & due to a sinus infection. Gave me a nasal spray. Unfortunately he never referred me to an ENT or had a biopsy performed. I saw my dermatologist in September & she told me to see an ENT & get 2nd opinion asap! My ENT took a biopsy & the lump was suspicious for SCC. After removal of the lump the biopsy confirmed I had SCC. Did not know the primary site until a PET scan showed the base of tongue as the primary. Feel fortunate about knowing the primary source! Try not to get upset about losing nine months in the battle due to a misdiagnosis. Have a port & that seems the way to go without a doubt. Will have the PEG feeding tube put in on Tuesday. I too initially was not going to get the tube until reading everyone's replies. Meeting with my chemo doctor Monday morning as I am concerned about hearing loss. I have a slight hearing loss with ringing in the ears already - which intensified after only one treatment of Cisplatin. I definitely want to change to a different chemo treatment. From my research it seems like Cisplatin is not the right chemo if you are concerned with hearing loss(which my doctor knew about beforehand) Hope all is well & thanks to everyone on the site.

Moms son
Posts: 5
Joined: May 2011

Hi To you all,
I have really positive news. My 43year old son started out going to Doctor's appointments Jan 14,2011.What brought his attention to the whole thing was his right lymph node was swollen. He had all the testing, several doctors appointments with Oncologist & Head & Neck doctors. He had his tonsils taken out Feb 4,2011 and found out he was positive for base of the tongue cancer on Feb. 9,2011. They started Chemo March 1st, 2011,once a week on Tuesdays, then Monday thru Friday radiation, also. He completed 8 chemo and 33 radiation by April 22, 2011. He did have a feeding tube put in March 14,2011. Thank God he did, he couldn't eat, taste anything and as the rest of you believe, it saved his life. He did swallow water everyday. He did have a lot of burns on his neck that scabbed over. His wife was very good about putting lotion on him constantly to try to keep down the scaring. He could only get down 4 cans of food in his feeding tube so he did loose 33 pounds. The doctors were unhappy about that but he said they just couldn't get anymore down it. It is strange, he lost a little hair in the base of the back of his hair. My son was born a blond. His hair after treatments has come in almost black. But, the doctors informed him that his hair would come back to the normal blond and would probably fill in the place where the hair is missing. It is May 25,2011. He is going back to work two days a week June 1st 2011. He has started eating all his food, although he said he doesn't quite have his taste back yet, he can at least eat it. Before he said it wasn't just the taste, it was that it hurt, the texture and no flavor or taste. I feel my son & his wife have just wanted their life back to normal so bad, I fear he is pushing himself getting back to his normal life. Our whole family, friends, everyone have prayed, been totally positive that he was going to beat this and be just fine. I have a fear he is going along almost to quickly. He was diagnosed stage 4. His doctors are totally pleased almost dancing around and say they feel nothing in his neck. Of course this is after his 4 week check up after last treatment. He does have the pet scan coming 90 days after the last treatment and he does have to go to his oncologist every two months,and the doctor will look with a scope in his mouth for two years. Then another outline until the 5 years come around. But, doesn't this sound like a dream and answer from God of the unreal outcome. I wanted my son to get his life back to normal, THANK GOD, But, I reserve a little fear of a setback. I choose to be positive and just happy at this moment and share it with you all. Hopefully this will give
some of you a really positive view of this horrid base of the tongue cancer!

God Bless you all, I pray for you all to be recovered soon.

Moms Son

NW DINO
Posts: 29
Joined: Oct 2010

Great news your son completed his treatments! I have a very similar history of dx and treatment for BOT SCC. I am about four months ahead of your sons schedule - had my last radiation Dec 15th. Feeding tube was a lifesaver - I also had four cans daily (Ensure) & lost 30 lbs. Tube removed Jaunuary 15th. Lost some hair on my beard & lower back neck - starting to come back now. Had the all clear PET on March 24th!!! I am back to work full time & feeling better every week. Taste buds have returned about 90%. Understand your son's motivation to get back to work & have a normal routine. Just let him know it takes time to regain strength & stamina after the treatments. He is now a survivor! Prayers for a speedy recovery

Moms son
Posts: 5
Joined: May 2011

Hi NW DINO
I was glad to hear some response to my questions. I feel 6 weeks after his last treatment and he is going back to work full time June 1, 2011. His petscan is not for another 8 weeks(90 days) from his last treatment which was April 22, 2011. He doesn't have all his taste back, and said his doctor said it could be up to a year before that totally happens. He does still have the feeding tube, I am so happy for him, but I just don't want him to push himself to much and have any setbacks. Funny, my blond blue eyed boy has almost black hair. Some hair did come out in the back of his head but the doctors expect that to come back to the blond hair as he had eventually. He had a close friend that had a malinant brain tumor at the age of 16. He my son's age and has be very helpful to me as a mother. I know you cannot tell you 43 year old son what to do, but it is hard. All I can do is go with him for treatments and keep him company. He has a wife and children, and a very successful job. I believe he has been so positive as to not change to much of his family life, and his job was so busy, it was driving him crazy trying to stay at home. When he was on pain medicine, it pretty well made him get his rest. His friend just kept saying "Listen to your body" When you need rest. Just take it. It is your life. It sounds like you are doing quite well also, Thank God. Maybe this very up status will help some people just getting started. I have been reading this blog since the beginning and I expected my son to be down or off work from 9 months to a year. No such thing for him, at least now. He is always smiling. I will keep you and all I read or hear about on my prayer list. God be with you and I hope everything keeps going well.

Thanks
Moms Son

ows my fears are those of a mother. Believe me, your Mom always thinks of you no matter what the age is as her son, Her little boy, even when you have grown up. This friend's best advice has been, Listen to your body. I keep saying that also. It was so nice to hear someone else doing so well. Thank you for responding. I pray all the time and I pray for anyone stricken with the nasty word, CANCER. God Bless and Take care,
Moms son

Moms son
Posts: 5
Joined: May 2011

Hi NW DINO
I was glad to hear some response to my questions. I feel 6 weeks after his last treatment and he is going back to work full time June 1, 2011. His petscan is not for another 8 weeks(90 days) from his last treatment which was April 22, 2011. He doesn't have all his taste back, and said his doctor said it could be up to a year before that totally happens. He does still have the feeding tube, I am so happy for him, but I just don't want him to push himself to much and have any setbacks. Funny, my blond blue eyed boy has almost black hair. Some hair did come out in the back of his head but the doctors expect that to come back to the blond hair as he had eventually. He had a close friend that had a malinant brain tumor at the age of 16. He my son's age and has be very helpful to me as a mother. I know you cannot tell you 43 year old son what to do, but it is hard. All I can do is go with him for treatments and keep him company. He has a wife and children, and a very successful job. I believe he has been so positive as to not change to much of his family life, and his job was so busy, it was driving him crazy trying to stay at home. When he was on pain medicine, it pretty well made him get his rest. His friend just kept saying "Listen to your body" When you need rest. Just take it. It is your life. It sounds like you are doing quite well also, Thank God. Maybe this very up status will help some people just getting started. I have been reading this blog since the beginning and I expected my son to be down or off work from 9 months to a year. No such thing for him, at least now. He is always smiling. I will keep you and all I read or hear about on my prayer list. God be with you and I hope everything keeps going well.

Thanks
Moms Son

ows my fears are those of a mother. Believe me, your Mom always thinks of you no matter what the age is as her son, Her little boy, even when you have grown up. This friend's best advice has been, Listen to your body. I keep saying that also. It was so nice to hear someone else doing so well. Thank you for responding. I pray all the time and I pray for anyone stricken with the nasty word, CANCER. God Bless and Take care,
Moms son

Hedwig
Posts: 5
Joined: May 2011

My hubby age 66 noticed a lump on the left side of his neck,biopsy proved positive,cy scan, another area noted at tonsil area,
Then surgery to remove tonsil and did some biopsies,now scheduled for chemo and radiation. We has a dental checkup and dep cleaning,and flouride trays made to use every day. We met the chemo doc, very scary to hear about the drug and side effects (cisplatin). We mee the radiation doc this week and have a swallowing study. It sounds like 5 days of radiation and one day of chemo.I am researching every thing I can to help him. I have stopped all outside activities and it is strictly focusing on him. We did buy a juicer and trying to get used to that. He is just starting to eat after the tonsillectomy. The docs seemed all so casual about or maybe it is just my anxiety getting the best of me. We are both retired and have lived such a simple life and that was just fine with us. I am praying and have a few friends praying for us. We have only shared this with a few people cause we want to stay positive. Thanks for listening and hope to share our story to help others and pick up some hints from all of you. Gob bless.

Ruprecht
Posts: 1
Joined: Jun 2011

I'm 66 also and only 5 mos. out from treatment for the same cancer in the same area. The Docs may seem casual, but they are really focused and concerned that your husband gets the right combination of treatments. I was treated with concurrent Chemo-(Cisplatin) and radiation over a period of 7 weeks. It was tough, but I'm sure he'll be fine. It worked for me (and a whole bunch of other patients) and it should work for him too. I had my Pet Scan last week and I am clear (without surgery). Rather than isolating myself, I went the other way and freely discussed my predicament with family, friends and co-workers. You really should be open about your situation and let others express their understanding and heartfelt support for you and your husband. It's really awkward for people who have heard about your situation from others but are afraid to express their support because you haven't opened up. As you begin your treatment you'll meet other families that are going through the same routine over the next several weeks. You'll be surprised at the cheerfulness and openness, especially in the Chemo infusion room. I'm happy to continue sharing my thoughts with you as you go through your treatments.

Hughman
Posts: 1
Joined: Nov 2011

Hedwig, welcome to the thread and my heart goes out to you and your husband. It's good he has you to go through this with him. I dint know how I would have made it without my amazing wife. To witness the challenges ofhis e xperience on the spouse almost seemed worse than what ii was going through. I also felt the doctors weren't all that concerned but in fact they rely on studies of cancer treatments for exactly the kind of diagnosis your husband has and in my case (left tonsil, left lymph nodes) I double checked their prescribed treatment with a doctor friend and he confirmed the exact same treatment. Sometimes it seemed hard to believe but they want to save my life. I've just finished the treatment a week ago so I'm so still in the recovery stage. I'm so glad I found this thread and if theres anything I can offer for support, let me know.

Hughman

Lynlls
Posts: 3
Joined: May 2011

I so sorry you have to go through this. My husband had the same time of base of tongue and lymph node cancer. His treatment was finished about five months ago. He had chemo once a week and radiation six times a week twice on friday for six weeks. The cancer center insisted he have the feeding tube placed before the treatment began also he had a dietitian and a speech therapist right from the start. The speech therapist is the swallowing person to help with keeping the swallowing muscles active.
My husband only lost 20 pounds and the feeding tube saved his life, it is easier (explained to us) to have he tube put in before radiation starts because the tube is placed down your throat. I am sorry to say that every cancer patient is different how they heal and the stage of the cancer effects the recovery.

I am happy to report that the cancer on the tongue is gone and he had a neck disection of lymph nodes removeing 42 of them there was no cancer in the nodes but it showed where it was at. But he still can't eat like befoe he gets 6 cans of liquid food through the tube still, but he can eat a little yogurt or ice cream bar, liquid soup. This takes a lot of time to heal his esophagus is still swollen. He will be going to the ENT doctor they may stretch his throat to help him better I just don't know. He also will have a PT scan next month. He had a PT scan before treatment began and it showed the only area the cancer was in was the the two places.

He is driving the car and talks well. he has constant dry mouth but the pain in is tongue is gone. He still has a problem with mucus but not as much. This really is a one day at a time situation. You will see a lot of brave people going through a lot of different cancers old and young. It makes you brave enough to go through the treatment to see the bravery of others. You talk to them, we had a man going through the same type of cancer we talked to him when we were getting treatments. We saw the docs everyday while treatment was going on or their nurses to ask any questions we needed. Blessings to you keep up the fight.

Lynlls
Posts: 3
Joined: May 2011

I so sorry you have to go through this. My husband had the same time of base of tongue and lymph node cancer. His treatment was finished about five months ago. He had chemo once a week and radiation six times a week twice on friday for six weeks. The cancer center insisted he have the feeding tube placed before the treatment began also he had a dietitian and a speech therapist right from the start. The speech therapist is the swallowing person to help with keeping the swallowing muscles active.
My husband only lost 20 pounds and the feeding tube saved his life, it is easier (explained to us) to have he tube put in before radiation starts because the tube is placed down your throat. I am sorry to say that every cancer patient is different how they heal and the stage of the cancer effects the recovery.

I am happy to report that the cancer on the tongue is gone and he had a neck disection of lymph nodes removeing 42 of them there was no cancer in the nodes but it showed where it was at. But he still can't eat like befoe he gets 6 cans of liquid food through the tube still, but he can eat a little yogurt or ice cream bar, liquid soup. This takes a lot of time to heal his esophagus is still swollen. He will be going to the ENT doctor they may stretch his throat to help him better I just don't know. He also will have a PT scan next month. He had a PT scan before treatment began and it showed the only area the cancer was in was the the two places.

He is driving the car and talks well. he has constant dry mouth but the pain in is tongue is gone. He still has a problem with mucus but not as much. This really is a one day at a time situation. You will see a lot of brave people going through a lot of different cancers old and young. It makes you brave enough to go through the treatment to see the bravery of others. You talk to them, we had a man going through the same type of cancer we talked to him when we were getting treatments. We saw the docs everyday while treatment was going on or their nurses to ask any questions we needed. Blessings to you keep up the fight.

yangkwei
Posts: 1
Joined: Feb 2010

completed radiation and chemo for bot squamous cell 1 1/2 years ago. going through extreme dry mouth now. cannot talk at times. any suggestions?

John Watton
Posts: 5
Joined: Nov 2011

I kept a blog as well in the hope of keeping friends,family and my church community informed as to how things were going. It was widely read .I hope it might help you as well.every blessing on your journey. Here is the address http://notalwayssomeoneelse.blogspot.com/

DennisK7BV
Posts: 1
Joined: Aug 2011

I kept a blog through my entire base of the tongue throat cancer experience. I hope it might offer some help for you with your many many questions.

http://k7bvcancer.blogspot.com/

My best wishes,
Dennis

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Welcome to the forum Dennis.....

A lot of great people here and tons of history and experience....

Good job on the blog....I haven't read it all, but plan to.

This might be something worthy of the SuperThread that Sweetblood (Dawn) has put together.

Best,
John

oceancaydream
Posts: 5
Joined: Jul 2011

I'm not even sure where to begin in this story of my husbands Stage IV high grade 4 Undifferentiated Large Cell Neuroendocrine throat cancer of the back of the throat. MANY Lymph nodes were involved on both sides with extensive necrosis. Neuroendocrine histology is very rare in the throat so i am told. Not much data to support methodology.
He went the 8 weeks 5 times a week of radiation which was hell and 4 out of the 6 weeks of chemo. (His blood values were so bad he couldn't do 2 of the 6 scheduled rounds of chemo)
It's been 3 months since the treatment ended.
He has not had one bite of food in over 5 months and not even a SIP of water in the last 4 months!
I can't even imagine that.
My question is this:
Can not using your esophagus for that long be damaging? I worry he will never be able to eat or drink again.
He spits up this awful mucus and lately, this nasty smelling green chunks of something vile.
We went last week for a doctor's appointment but the oncologist seems to think we need to wait until after Christmas to do a PET scan or anything else.
My husband looks good so everyone seems to assume he is cured. My gut says differently but I am certainly no doctor!
Anyone with any help would be so appreciated.
I feel we are in limbo here.
Kay

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I guess I'm not clear on why he cannot swallow. Is it mouth sores? A stricture? Nerve damage? Do you guys know why he cannot swallow? I didn't drink anything at all for about 5 months, and I couldn't eat anything by mouth for 9 months. I had severe mouth sores and I had a stricture. For mouth sores I would recommend taking a look at L-Glutamine. Many of have had success with it. I would take a heaping tsp in a cup of water and swish and swallow. You can read about it in the superthread, I will post the link here for you. If it's a stricture, they can go in and stretch the esophagus. I've had a total of three. If you don't know why swallowing is an issue, then they can do a swallowing study, where they take pix of you swallowing different stuff or just the liquid to swallow and they can assess what the issue may be. There are speech therapists and pathologists, that can also help with exercises. Guess that is all the imput I have since I'm not clear why.

It did take me a very long time to be able to eat normally. I had my peg tube for 18 months. I finished treatment on 5/15/09. I didn't really even start eating what I would consider normal food, until a year later, like in June of last year. You can 'lose your swallow' if you do not keep swallowing during treatment and recovery. Mine was radiation damage.

Here is the superthread link. There are three or for links for Glutamine under the section, that says something like, Products and tips that help with side effects:

HNC  SUPERTHREAD

Best of luck

oceancaydream
Posts: 5
Joined: Jul 2011

Thank you so much for the reply and link.
He can't swallow b/c he says when he tries he feels something still there and it gags him. He feels it's better not to do anything than to upchuck so we wait...
I'm not sure if it's stricture or an obstruction still there. He says it feels like a finger in his throat and now his ear hurts and jaw.
He was initially diagnosed with many large tumors but the biggest one was a tumor measuring over 4 inches across and was less than 3 weeks from being suffocated by it when he went for his biopsy and the surgeon "debulked" it.
His first CT Scan since treatment showed the tumors have shrunk by half but are still there. Hopefully they are "dead" but we won't know that until the PET Scan in 2-3 months.
No one seems to be worried about this but me.
The things he coughs up are nasty and smelly dark green chunks which i suppose could be dead tissue killed by the radiation.
My husbands approach to this is to do nothing and say nothing but I think that's foolish. I am biting my lip trying to allow this up to him but it's hard!
Thanks for your help. It's nice to have someone that's been there- done that
Best Regards
Kay

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Doing nothing, does not sound like a plan to me. As Karen said, and I covered above, he needs to have a swallowing study done. In this case, if he waits, it could just get worse. He could totally lose his ability to swallow permanently. Not to mention he is probably feeling miserable, and this may help. I wouldn't wait, but that's just me. I know I was extremely depressed and dispondent when I couldn't eat. Not good.

John Watton
Posts: 5
Joined: Nov 2011

Hi. I am just over a year out from treatments for a stage three cancer of my tongue and throat. I spent many long nights sitting up because the effects of the radiation and chemotherapy were devastating to me. The side effects grew worse and worse, but now I can say they have subsided. Those chunks happened to me as well,along with extreme amounts of mucus . My doctors encouraged me to keep eating and drinking as much as possible because after treatment recovery would be much harder if my Throat "forgot" how to swallow. Easier said than done! my local physician arranged for me to have a feeding tube. It saved my life! For a while I simply was unable to swallow at all...or talk for that matter.
Now things are much better...and the fight continues . I blogged the whole experience .
I do need to update my writing .I was waiting for some definitive answer before doing do. Now the time has come.I wrote to keep my friends and Church family in the loop while I was having treatments,and was quite surprised at how many people followed it. If you are interested let me know and I will send you the link. Wishing you both the very best for the future.
John

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