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Base of tongue squamous cell carcinoma

bcullen474's picture
bcullen474
Posts: 2
Joined: May 2013

I’m new to this, recently April 3 2013 PET scan said base of tongue squamous cell carcinoma. I get my feeding tube next Tuesday and start treatment 5/30/13. I’ m scared. I supposed to have 7 weeks of radiation and 3 chemotherapy’s. Everything I read says chemo kills more then it cures. Is there an alternative to chemo? Vitamin C, honey& cinnamon, pineapple roots? I had someone tell me yesterday their mother has survived on naturopath medicine for 2 yrs and with the same diagnose. I can do the radiation, but fear the chemo. .    

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

Sorry you had to join our club, but welcome.

My brother died of a brain tumor in 2011 and my dad died of acute Leukemia that same year.....my cancer was the same as yours, base of tongue (BOT) ...stage III w/ one lymph node involved, diagnosed October 2011.

I can tell you well meaning people sent me, my dad and brother TONS of information on the latest "cures".  I don't subscribe to the theory that government and big pharmacies want to keep us using drugs and chemo.  Good lord cancer must cost the government and the private sector billions if not more a year.

I had Erbitux (a form of chemo I was told but with MUCH less side affects than the platinum chemo drugs) and radiation and I am to date NED (no evidence of disease). My last tx (treatment) was January 2012.

I guess my point in this is that what most of us have done is tried and proven to be the best against this terrible beast, and there are plenty of surviors here who will share.  That does not mean you can't do or use something else, but now may not be the time to research that in my humble opinion. 

No matter how much time I have left on this earth, I know were it not for the treatments I did receive I would not be here today, and everyday I have with my wife and kids is a true blessing.  I subscribe to prayer and had a lot of that as well as a good team of doctors so I consider myself all around blessed.

You have a lot on your plate right now, but you will do fine.  Being scared is about as normal as you can get (I was too) ...keep breathing slowly, pace yourself, take good notes, write down your questions and be sure and attend the chemo / radiation class if they offer one that tells you what to expect.  Good info to have.

Keep us posted.....you too will soon meet Mr. NED (no evidence of disease) as we like to call him around here..but I won't pretend meeting him does not require a bit of a tough short term road.

Best,

Tim

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

had the same cancer in 2004. Tim, pretty much, summed everything up. It's a scary situation but you will make it through. A lot of us have run into problems down the road due to the radiation but, that too, varies with the individual. The chemo may harm healthy cells but, in all likelihood, the body will fix the problems chemo created.  It's another story with the radiation damage.

phrannie51's picture
phrannie51
Posts: 3637
Joined: Mar 2012

wants to join.....I can tell you this, tho.....you have stumbled onto THE BEST forum in the world if you're looking for knowledgable, supportive people to help get you thru treatments and beyond.

It's funny how we all differ in which of the two aspects of HNC treatments scare us.....some of us it's the chemo....others, like myself...were terrified of the radiation and it's possible side effects.  I'm afraid tho, that the side effect of Vit C, herbal meds, honey and cinnamon etc etc etc is probably death.  So far, in the year I've been on here, nobody has died of the chemo or radiation.  Your friends mother might have lived for two years after diagnosis if she'd done nothing at all.....on here tho, you're going to run into people who have lived years and years.....with no cancer in sight for the near future.  All having done both the chemo and rads....Trust your Dr.'s.....it sounds to me like they are planning the same treatment for you, as many here are getting right now, or got in the past. 

I'm going to tell you what one of the senior members told me when I first got here.....scared as hell, just like you.....He said..."you're hitting some gravel in the hiway of life....it's temporary, and you will hit pavement again.  You're going to survive this, so get used to the idea".....I can tell you that this period you've just come thru....the LONG wait from diagnosis to actually starting treatment is the worst emotionally.....and you're almost done with that part.  You will lose your fear once you're in the active part of battling the disease.  It's not a cake walk, but it certainly is very doable.....Hell, I started out as a 97 lb weakling (don't kick the sand please Smile), and I'm still here to tell my story....You're going to be OK.

Keep coming back.....the people here will give you sage and practical knowledge on how to get thru this....they saved my bacon too many times to count.

p

PS....I'm glad you're getting your feeding tube early.....saves you from getting it down the road when already feel like schmidt.

CivilMatt's picture
CivilMatt
Posts: 2873
Joined: May 2012

bcullen474,

Welcome to the H&N forum, where questions generate more questions.

I will accept that miracles do happen and people with similar H&N cancers appear to be cured, but I’ll put my money on known traditional treatments.  Sure you are scared; most of us were at different times. You are shooting for the big prize (life) and you want to take careful aim.

All aspects of fighting cancer are manageable to a degree.  Some parts of treatment kick your butt harder than others, but depending on the severity of your diagnosis you will most likely recover and go on to live a happy and healthy life.

In my opinion you need to fight fire with fire and kill the invader before it kills you.  If you have concerns then talk to your doctor or get a second or third opinion (from reliable sources).

It is not a bad idea to live and eat healthy, but the cat is out of the bag, it is time to be honest and get in-your-face serious.  Virtually everyone at the H&N forum has had some combination of chemo, rads and surgery and many have been successful.

On your side,

Matt

connieprice1's picture
connieprice1
Posts: 294
Joined: Oct 2010

bcullen,   My wife contracted cancer Oct. 2010. Squamous cell carcinoma, Base of Tongue with 2 Lymph Nodes involved. We were disappointed that she could not have surgery. She did same treatment as you will do. Chemo was scary but she did very well with it for the most part. The swollen lymph modes were the size of walnuts and after her first Chemotherapy treatment, they went down to normal size. She had a dramatic response within a week. This really gave us a lot of hope, hey this chemo might just work. She did have a problem and did not do the last treatment and started her radiation. After 7 weeks of Radiation she was NED. So far 2 yrs. later all scans have been clean. The Radiation treatments were worse for her. Eat while you can, try to gain as much weight as possible. The radiation will get rough the last 3-4 weeks but you want to throw the works at your cancer and hopefully after 4-6 months of treatment you will start getting better and within a year, your tube will be out and things will be looking up. Getting a peg tube was a very smart move as nutrition is medicine and you want regret getting one. A lot of people never get a tube but I am glad Connie did  and it comes out easy. With Chemo just do the medicines they give you on time everytime and do the anti- nauseas drugs before you get nausea. A nurse told my wife on her first day of chemo to just take treatment "one day at a time" and that was the best advice Connie got. Good Luck, You can do it, Homer Price 

Noellesmom
Posts: 1279
Joined: Aug 2010

bcullen, you are getting good advice here.

Alternative to chemo?  Yes, but I believe it is probably death.

My husband had advanced BOT and hypopharyngeal cancer with one lymph node involved.  His diagnosis was three years ago and he received chemo (platinum based Cisplatin) and 37 radiation treatments.  He had a PEG we never used (other than with water simply to keep it working if needed), continued eating anything and everything (and still does to this day) and did fairly well with the chemo (took Emend before every treatment to help with nausea and it worked well).

Radiation keeps on keeping on for a quite awhile after it is completed - Jim's body continued to react to it and he did not start losing weight until about 6 weeks after completion, which his radiologist said was completely normal, and he lost significant weight so I agree with the posting that said to get your weight up/keep your weight up.  Don't think of this as an excellent way to shed a few pounds because it is not necessarily body fat you lose but muscle mass. 

Jim has been free of cancer on his scans for the past two years.  Follow up head and neck and chest CT scheduled for this Friday.  Praying for good results and will say a prayer for you as you begin an experience that will surely change you and likely save your life.

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

In recent years the cure rate for the treatment plan you are on has increased to over 80%.  I suspect it's a lot lower for any alternative plans, but there's probably no data on that.  The price you pay for the high rate of success with chemo+rads is the Hell your body will go through in the short term, and the unknown lingering side effects in the long run.  As Phrannie said, this will not be easy, but it's doable if you follow your doctor's advice, have a good support team in place, and stay upbeat.

You don't know yet how fortunate you are to have found this group of people so early in your battle, but trust me--more than one person on this site has gone through every possible thing you will face and can guide you through it.  Just don't be shy about telling your story to us as things unfold.

Mike

 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hello and welcome....

Do yourself a HUGE favor and do not read anything more about your cancer on the Internet.  Most of that stuff is very outdated and can scare the crap out of you.  Being scared at this point in your journey is normal....we were all scared in the beginning.  It would be strange if you weren't.

But, you can do this !!  Actually the chemo is a piece of cake...the radiation is where the biggest challenges may come from, but finding this group will help immensely with that.

Go to the first page of this discussion board and find the SUPERTHREAD.....read up on everything, especially all the things you can do to help you get thru your radiation treatments.  Being prepared and knowing what to expect before your treatment begins will be a big relief.

Please ask any and all questions you may have --- we have all been down the same path and will be here to cheer you on.

wishing you the best....

Ingrid

cureitall66's picture
cureitall66
Posts: 846
Joined: Aug 2012

Sorry you've had to find yourself here under these circumstances. Being scared is perfectly normal....as anyone who gets a diagnosis of cancer. 

My loved one is 52r old Male, Stage IV, SCC BOT (Base of Tongue), 2 lymph nodes involved (all on left side), HPV16+. Dx Aug 2012. His Tx was Chemo(Carboplatin & Paclitaxel) and Radiation for 7 weeks. He finished tx late Novemember. Had a PET scan done end of February and was NED (No Evidence of Disease). It certainly was no picnic, but was completely doable!

Believe you will survive this! There are many long term survivors(10, 15, 20 yr) still on this forum that you will come across along with some of us more recent newbies that are all wonderful in offering advice from their experience. I think you will be happy you came across this forum and will most likely stick around all of us for support during your journey. Don't be afraid to ask questions and tell of your fears. You will realize quickly that you will get them answered by many.

I've always been a person to do as much naturally as possible in life. From recycling everything I can get my hands on to keep a healthier enviroment, to cooking healthy, always looking at more natural approaches. But, as a caregiver, I knew cancer was much bigger of a job then I thought I could handle in my "natural" world. I would leave it to the doctors and experts and not folks off the street that mean well, but are not in our shoes. I do believe that God gave us many earthly, natural things to utilize, but I also believe HE gave Doctors the gift of education to help man. I found my job was to care for my loved one both emotionally and physically the best I could during this journey. I believe that was the gift God gave me.

Please be sure to read the Superthread at the top of the forum page for H & N there are many, many subjects that you can read about that will help to prepare you for this journey. The rest you don't get answered, be sure to come here and someone is bound to get your question answered. 

I hope you plan to stick around with all of us. God Bless you on your decisions and journey.

~C

JohnG1961's picture
JohnG1961
Posts: 6
Joined: May 2013

Hi BC I'M new to this also,I'm doing 6 weeks radiation. I also have Squamous cancer had it removed from my cheek,I also had my lymph glans removed,tonsels,some jaw bone,flap from my arm to put in my mouth,skin graf from my leg to put on my arm and teeth pulled.Do yourself a big favor trust your doctors we are all scared and this is no time to gamble on your health.If I wasn't scared I would be woried why I wasn't LOL

I wish you all the best my e-mail is jpgavin3377@live.com

if you just need to vent I'm all ears we all need to sometimes, cant hold it in or do this alone

John

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

You joined a great supportive group with great knowledge as current patients/survivors.  I too had BOT with Mets to one side of my neck, treated same as you 3 years ago.  PEG tube was a great idea also, I used mine for months and only lost 15% of body weight.  Others lost way more with out the tube.

Trust your doctors, the Rads and chemo are the best combination for curing your problem.  Don't believe all the "eat grass" and get cured people.  It is BS and the internet spreads it to easily for scared cancer patients to see and have hope in.  don't go there.  Get focused, stay positive and commit yourself to the hard work ahead.  It works....

Good luck to you,

Steve

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Sorry for double post.  But I meant it twice!

Steve

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Look for Hawvet post and sign up on his "roll call".  You'll see many of us from accross the world.  All had something like you have .....good luck

corleone's picture
corleone
Posts: 147
Joined: Jul 2012

Welcome to this forum, albeit under this circumstance. I had a different type of cancer (nasopharyngeal carcinoma), but same concurrent radiation and chemo as you’ll get, plus other 3 months (post radiation) chemo. I am now 6 months post treatment, doing great (some persistent side effects - you’ll read about these from other posts - but very manageable).

You’ve already got useful advices, I can only second them. Rest assured that I was scared as hell, until the treatment started. At that time you’ll be too focused on fighting the side effects (tough, but doable) to care of anything else. You’ll also get more info on that strategy, later, as you go.

A few more comments:

“Everything I read says chemo kills more then it cures” – not true, it’s the other way around, with this type of cancer that is highly curable.

“Is there an alternative to chemo?” While there are some anecdotal cases of spontaneous cure, or effective life style changes (diet, exercise, and calming strategies) that showed benefit, now it’s not the time to try these. You simply don’t have time for that. The alternatives (naturopath and such) might worth be trying if there was nothing else to do, or after several relapses when nothing seems to be working, and also on the long run - after you went through the standard of care treatment.

bcullen474's picture
bcullen474
Posts: 2
Joined: May 2013

I am overwhelmed with the responses to my cancer post. I keep thinking I have never felt better in my life, even after having all my teeth removed. I’m going under sedation for the 3rd time this coming Tuesday for the PEG. I’m lucky my wife works in health care and manages folks with feeding tubes, which also has a down side because she sees the toll cancer takes and she’s scared too. I have read all of your replies and have gotten a great list of questions for my care givers thanks to you all. Thank you.   

HelenBack
Posts: 62
Joined: Jan 2013

that you are more afraid of chemo than the radiation. Both are terrible and I hope one day they find another way, but for now, it's the protocol that works pretty darned well. My husband had two of the three prescribed chemo treatments and he had a pretty hard time with it but I have read about many more here who didn't have much trouble. Take the anti-nausea drugs, get iv fluids if you need them, expect to be tired and then get back to eating as much as you can, while you can.

I know it is scary, but you will likely be fine, especially if you are feeling on top of your game, healthwise. My husband JUST finished the exact same treatment as you will have and he's done quite well. He needed no pain meds until just a week ago and has a lot of energy. Eating is tough and he doesn't have a PEG tube so I'm especially concerned about his eating but that will be less of a problem for you with a PEG.

I would like to add to all the wonderful advice that you have received here to try to stay busy for the first few weeks if you are feeling well. My husband stopped working a little earlier than he probably needed to and rather than enjoying his good health, we kind of sat around waiting for things to get tough and being generally bummed. In spite of that, the time did pass and we were sort of surprised when it was over that it went so quickly. I don't know how that is possible, but it has been said by many here and so it will be for you too.

Good Luck,

Helen

Chris and Marianne
Posts: 16
Joined: May 2013

Welcome BC,

I recently found this discussion board. These people are so helpful. They are great. Last week my Husband finished what sounds like the same treatment you are about to have. Listen to all the advice these good people give you . You will get through this and this group will be here to help you.

C&M

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