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tongue cancer

Posts: 11
Joined: Oct 2008

My dad just went through tongue cancer treatment where he lost 75% of his tongue. After surgery, he was given a radiation, but no chemo theraphy. He is not gaining weight. Any suggestions?

soccerfreaks's picture
Posts: 2801
Joined: Sep 2006

There are some questions remaining here, answers to which would be helpful in helping your dad. Does he have a peg tube? Can he swallow? Is he eating or drinking anything orally at this point?

I will assume that he has a tube, since you say he 'just' had the surgery and the rads. I will assume that swallowing is difficult at this time.

In which case, I would hope that he is on a protein-heavy liquid diet via his peg tube, something like Jevity. This stuff comes in various calories, and his particular diet of it can be adjusted to increase his weight and his health.

There is something called ProSource that can be added to the mix that increases the protein getting to the body. If doctors approve, I might also suggest an iron enhancement like Centrum. If it sounds like I am a commercial spokesman, my bad...I get nothing from these companies :). I just know their names first hand.

If dad can swallow in any capacity, I would also strongly advise yogurt. It is not only a bit on the easy side as far as taking orally, but is also really good for digestion.

Personally, I advocate sports drinks, too. And me, I reached the point where V8 became an awesome and delicious part of my life (I probably should call these people and seek some sort of retainer, eh?).

The most important thing is that he stick to his plan. I am hopeful that he is in constant contact with a nutritionist and that he is staying with what he/she suggested. This is critical.

And here are the problems: as my Onco Man suggested recently, eating is not much fun when it is going into a tube. It becomes work. It is tedious and there is none of the pleasure that we associate with eating. But we must make ourselves do it if we are to survive. And, we, your dad and I, are like babies when we first start back to eating. We must take care, we must be patient, we must not let our frustrations (and there will be frustrations) overwhelm us. And, it sucks.

Other than that, it is a piece of cake (a piece of cake we can't eat).

Dad WILL see progress. Dad WILL get over his frustration. Dad WILL adapt. If he chooses to do so, if he has the will to survive.

I've been there. I'm not eating steak yet, for sure, but I am eating, I am surviving, and I am enjoying life.

Good luck to dad, and best wishes to him and his entire family.

Take care,


Posts: 11
Joined: Oct 2008

Thank you very much for your information. He had nine hour of operation. His tumor was 7cm by 9cm in his tongue. After they removed the tumor, he went through six weeks of radiation. Doctors suggested that there was no need for Chemo. Is it normal to avoid chemo after radiation ?

Posts: 11
Joined: Oct 2008

Joe: My dad is 72 yrs old. Before operation his weight was 72kg. Now he is at 55 kg. He is 5 feet 6 inch tall. Is it a ideal weight for him?

He had his operation two years ago in TATA memorial institue in India. Since he lost most of his tongue, he had to go through plastic surgery where they removed a flesh from his chest and attached it to his tongue. His voice came back but he has difficult speaking.

His doctor suggested him to do palatal denture to improve the voice, but it didnot help him much. I live in US and he lives in India.


Posts: 11
Joined: Oct 2008

Hi: Does anyone out there has success stories after tongue cancer treatment. It gives me a hope. My dad is emotionally down and worried. I love to hear success stories that I can share with my dad.
Thank you
Worried son.

soccerfreaks's picture
Posts: 2801
Joined: Sep 2006

You can go to the member search area, and select the specific cancer (tongue cancer or head/neck cancer, in this case) and should get a list of members who have survived this particular brand of cancer. I can personally suggest looking at the page of someone named SASH (all caps, I believe) whose own experiences over the last seven or eight or nine years were my initial inspiration, and also my own page, where I try to emphasize hope and humor regardless of the circumstances (I am a three year tongue and neck cancer survivor, and, more recently, a lung cancer survivor as well. Today, I am purportedly cancer-free).

Good luck to your dad and his family.

Take care,


Posts: 11
Joined: Oct 2008

Thank you Joe. I appreciate your feedback. I wish all the best to you and your family. Please feel free to share your stories with us. I spoke to my dad about your feedback. He suggested me to pass his regards to you as well.

Posts: 101
Joined: Jun 2008

My primary care doctor had advanced base of tongue cancer. He is two years post-treatment, is cancer free, has some saliva difficulty but other than that is doing very well. My best to you and your Dad. Rich

Posts: 11
Joined: Oct 2008

Thank you Rich. It is good to hear success stories.

Posts: 44
Joined: Jun 2008

Hi there.I am a 5 year tongue cancer survivor and one that was given no hope at all.Tell your Dad to hang tough.He will make it.There is a life after tongue cancer.A little different,but a life just the same.God Bless....Sassyque

SASH's picture
Posts: 401
Joined: Apr 2006

I licked my stage 4 tongue cancer 8 1/2 years ago. Because my tumor was so large, the entire tongue, that they had to do simultaneous chemo and radiation. The radiation lasted the months of November and December with only 4 days off for holidays plus weekends. Chemo was weekly for a total of 10 chemos. Some weeks had to be skipped because my blood counts were low, but all is well. After the last chemo in March I was told I was going to need surgery to remove 85-90% of my tongue. Surgery was supposed to be 18 hours and one of the surgeons even brought his power bar into the operating room so he would have the stamina to go trough the entire surgery. But, at 3 in the afternoon I was awake in the recovery room waiting on a bed. The chemo and radiation killed the cancer cells and all they found during the now much shorter surgery was dead cancer cells. What they thought was still tumor turned out to be scar tissue.

Eating came slowly and I still have limited saliva so eating always entails taking small bites followed by swigs of water to moisten the food. They took the base of my tongue but were able to leave the rest. But they did have to fasten my tongue to the floor of my mouth so it doesn't move, so this also affects my eating and speaking.

With all that said, I plan on living a long and productive life even with the slight inconvenience but I am alive and I will deal with these issues for a long time.

Hope all goes well with you and your family.

Craig_Griffin's picture
Posts: 52
Joined: Feb 2009

aditya, I was told that my latest CT scan results are "cancer free" about 2 weeks ago. I was diagnosed with stage 4 mass squamus carcinoma. I went through the following right after being diagnosed in March, 2008. 1) I would follow the prescribed doctors treatments, even if it was not pleasant. 2) Jesus is with me in my time of need 3) Believe in youself also 4) I am now putting it together to go in to permanent recovery. I underwent a series of 3 chemo treatments, followed by 40 radiation treatments. I started with a tumor at the tongue base, right side. Also had a 2.5" x 1" tumor behind my right ear, and cancer all throughout my right side lymph node. Every day I said that I would do my best to make it through 1 more day! At this point I am eating healthier food and beginning to study on how to keep myself cancer free. I wish the best for your dad. Please let me know how he is doing. -Craig.

Posts: 44
Joined: Jun 2008

I am a 5 1/2 year survivor of cancer of the tongue
I did not have surgery becaue the tumor had taken over my entire tongue.I had radiation and chemo and I know how tough his battle is ,but I am here to tell you that there is life after cancer of the tongue.I still have problems eating and swallowing a lot of different foods,but I try to stick with soups yogurt,mashed potatoes with a lot of gravy and things like that that I know will be easy to swallow.The only thing that helped me to gain weight was ensure plus and of course everyone is different,but I had good luck with that.I still drink it when I see my weight slipping.Tell him to hang in there.It will get better and please don't get discouraged.Hope this helps a little bit and please keep in touch.I will be praying for your dad......Betsy

ygfilart's picture
Posts: 11
Joined: Feb 2010

Hello everyone. I was diagnosed mid last year with squamous tongue cancer. I had 1/4 of my tongue cut off but the cancer recurred after a few months. Doctors wanted to cut off my entire tongue but after a lot of research, found my way to a cancer hospital in China. I had chemo, photodynamic therapy and iodine seedling implantation. I am now on my second week of recuperating from the procedures. I am glad to say that not a single part of my remaining tongue has been cut-off. And I am feeling better by the day, i talk and eat normally (although soft foods for now). I still need to do follow-up tests and treatments, though.

Posts: 1
Joined: Dec 2010

My cousin Mr Lalit (Age 37, in India) is going through the similar situation. He went through surgery in Dec 2009 and lost one forth of tounge (Front right side) and 69 lymph nodes (4 had cancerous cells) followed by radiation therapy and Chemo therapy from Jan 2010 to Oct 2010). Cancer has recurred at the back side of tongue, and doctors are suggesting another surgery (probably cutoff whole tongue + break jaw + ??). Can you please share your experience so that we can decide on surgery or no surgery. We are inclined towards not getting surgery but want to make sure Lalit leads a reasonbly good life.

Posts: 1
Joined: Dec 2012

It is such a personal feeling I can't describe reading from people going thru the same ordeal. I had surgery Nov 20, 2012 it is now 12/16/2012 (almost a month). Needless to say I am confused, upset, grateful and angry. It sounds like they removed approximately the same amount of tongue. How long did it take until you could talk a lot better? and there is the over abundanse of saliva, better that none but good grief!! I live in Las Vegas, NV and went to Mayo Clinic in Phoenix, AZ if you have any questions I could answer. Thank you for your time,

George_Baltimore's picture
Posts: 303
Joined: Jun 2009

You are responding to posts that are two years old. To my knowledge, only Soccerfreaks is still around posting anymore. I just bring it up so that you don't think people are ignoring you.

Ingrid K's picture
Ingrid K
Posts: 813
Joined: Mar 2011

Like George and John mention, start a new thread just on your tongue cancer and there will be many of us on here that can respond. I had 75% of my tongue removed and replaced with a graft from my forearm. I am doing fairly well at almost 2 years post-op and would be happy to answer any questions you may have.

Or feel free to send me a Private Message (go to CSN Mail)or click on my name

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Skiffin16's picture
Posts: 8292
Joined: Sep 2009

Like mentioned, if you can start a new thread, I'm sure you'll find the support you are seeking....

Unfortunately even SoccerFreaks (Joe)isn't on here any longer, but there are several people that can relate and offer communication.


jameseroche's picture
Posts: 1
Joined: Jan 2018

What do you folks think about doing JUST Radiation Therapy and NOT doing the Chemo-Therapy, Cysplatin and Radiation Therapy treatment for my tongue cancer.  Thge cancer is at the base of my tongue, and I was told stage 4 because of it's location, but there are NO palpable lymph nodes.  Any suggestions???  I work in the medical profession, and even though I am about to fight tongue cancer, I am not a believer of chemo-therapy.  I think the addition of chemo-therapy with radiation therapy only increases effectiveness by perhaps 3% in addition to the radiation therapy.  Is this chemo-therapy really worth 3% more favorable outlook? I think the two MAIN winners of chemo-therapy are:  1.  Big Pharmacology 2.  The physician ordering the chemo, who gets a monetary reward for doing so.  Your input is much appreciated.  Thank you.  It's my life, and I have to make this dissicion in 12 hours.  Thank you all.

CivilMatt's picture
Posts: 4373
Joined: May 2012


Welcome to what is your life worth.  Is it the money they will make or the benefit you may receive from chemo.  Profit motive can be good for business.

There are number of drugs included in the chemo group with some much less toxic to take.

Some do go with rads only.  Remember, the rads do permanent damage too.

Well, your 12 hours is almost up.  Good luck and knock the cancer right out of  them. (so to speak).


Posts: 413
Joined: Oct 2015

 My husband had tongue cancer and was told that the chemo made the rads more effective. His cancer also had not spread to the nodes. If it increased his chances of survival, he went for it. My husband is young, 40 when diagnosed, and we have 3 kids to think about. Honestly it didn’t matter who benefitted monetarily. It was my husband’s life that mattered. He is now 2 years cancer free and doing great.

Posts: 45
Joined: Aug 2017

They put me thru the chemo (3 sessions) and didn't say it was only 3% more effective than radiation alone or I might have refused it myself. The radiation doctor highly recommened the cisplatin saying it would make the treatment way more effective so I believed him.

Yes, they are in it for the money as I couldn't believe all the different people I had to see thru my journey with this cancer and some of it was totally unnecessary so it's definitely your call whether you go thru the chemo or not. If it's really only 3%, I wouldn't.

patricke's picture
Posts: 518
Joined: Aug 2006

Hi James,

I didn't have chemo, because it was not part of my recommended treatment regimen.  My routine was slice, dice, and rad ho.  If I was in your shoes, and confident that the source(s) of information, regarding the benefit of chemo with radiation being 3%, is from reliable, unbiased, replicated, solid, evidence based scientific research studies (preferably multiple), I would pass.  


Posts: 65
Joined: Oct 2017

Where did this 3% number come from? If it’s from the Internet, anyone can say anything about something. Its an oddly specific number, so I wonder if it came from a credible study or just someone spouting off a “feeling” about what chemo might or might not do. All I know is cisplatin is one of the oldest and most reliable (albeit toughest) chemo agents. We know quite a bit about how it works, what it does, and what it’s good for. While you wouldn’t treat H&N with cisplatin alone, I find it very hard to believe it‘s a 3% survivability.

If that number did come from a reputable source, a statistically significant (p < .05) 3% increase in overall survivability IS A BIG DEAL. In my opinion, it’d be crazy to take anything like that off the table when you get one single chance to cure this wretched illness. Cisplatin sucks, side effects suck, but in my treatment I didn’t hesitate to add it to my arsenal.

Regarding the cancer “money making machine” I find that perspective to be cynical at best. Do cancer oncologists, who are paid quite handsomely, really care about kickbacks from Merk etc.? Would a reputable onc really force chemo on someone if it didnt have an appropriate place in treatment? You might be able to find some outliers, but my experience at MSK has been far from it. Doctors agonizing over balancing under and over treating, being very careful and explaining very thoroughly why a certain chemo is being given. Lots of focus on reducing side effects of everything. Call that a money making machine if you want, but this cancer has curative intent in the treatment.

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