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PROBABLE STAGE 4 TONGUE CANCER

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I am entering the very early process after being told I have a Malignant Tumor on the base of my Tongue and a 9CM Mass along with 2 other small Masses on Lymph Node. My research tells me I am looking at Stage 4. I see an Oncologist this Thursday. I have googled myself into the grave. Hoping to hear something positive from someone.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi luv,

First, sorry about your diagnosis, and glad that you found your way here. I was a little different as I had stage 4 tonsil cancer with mets to lymph nodes. The good news is there are many people here that have or have had exactly what you have and they are doing fine surviving many years. So keep your chin up and keep posting here and the folks here will answer your questions. I am 3 months out of treatment and I am doing great. You can beat this!!!

Best,
Steve

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks for the positive comments. Looking at your photo, we appear to be of simillar age. (46?) The waiting time to see the Oncologist sucks. Very glad to hear you are doing so well so soon after treatment.

God Bless my friend.

Mike

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hello luv4lacrosse, I know exactly how you feel about googling. Keep googling and you can prepare to be assimilated because the mountain of information is too much to process. This place, and these people will help you distill the facts and options. I'm sorry to hear you have to face this, but everyone here has done the same, or has helped those who are facing it. Most were stage 4, me too, it's too often at that level when discovered. Take a big breath and let the chill leave your chest. You're headed for treatment, and on the road to recovery. It's starts with diagnosis and a treatment plan, and the oncologist on Thursday is your start point. Come here with specific questions, support, and to vent. For now I imagine apprehension is your biggest concern, but you're now moving forward and if you love lacrosse, you know the ball can move fast, so be ready for a busy schedule that can lead you back to health.

keep posting, best
Hal

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I am very sorry to hear that you have found yourself on this sight...but I have to tell you in gets your head in a better place than any of those other sites you have been on. And the only informtion/numbers you should pay attention to are yours. What you are reading on the internet is research that has nothing to do with your situation. It is a collection of hundreds of people's situations with the same diagnosis averaged together. Go through your diagnostic process, educate yourself (here is best, I think), and be an active part of planning your treatment. I highly recommend a cancer hospital if you are near one (and 100 miles is close). Make the effort to travel for the best care. Work with an ENT who specializes in head and neck cancers. A general ENT will say he/she can treat you, but remember he/she is also taking out kids' tonsils.
My partner, Mark, is the one diagnosed with SCC tonsil Stage IV. I beleive whole heartedly, where we picked for him to be treated makes all the difference in the world. His determination, attitude, and general good health are major factors too.
Best of luck to you. Use the knowledge that exists here. These folks know because they have been there.
Kim

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Kim, thanks for the reply back. I cannot wait for my Appt. on Thursday. I am being seen at the only facility in Missouri that is certified by the NCI. Siteman Cancer Center through Barnes Jewish Hospital in St. Louis. The Doctor specializes in Head and Neck Cancer.

I will continue to post info. on this site as I feel comfortable here.

All my best to Mark in his recovery.

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks a bunch Hal. I am definitely looking forward to Thursday's Appt. I will share my visit with others here.

Mike

greg from pa
Posts: 86
Joined: Jun 2010

Hi, I am glad you found this ite.I too have been diagnosed with base of tounge primary c with metastisis to 3 or more lymph nodes.It took 10 weeks from diagnosis to get into radiation and chemo.There were 2 biopsys,peg tube insert and port insert but now finally I am in treatment.I too spent to much time on those other sites and they did nothing but bring me down.base of tounge c can be very treatable ,particularly if you were a non smoker with a hpv + diagnosis on the biopsy.I am a newcomer on this site but I can tell you there are some terrific people on here. Draw from their experience and support.Best wishes. PA greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks Greg for the reply. I have never smoked but am, (was) a regular drinker. What is the deal with the HPV+ I keep reading about?

Mike

greg from pa
Posts: 86
Joined: Jun 2010

I was schedulded to have a modified radical neck dissection in april. The surgeon that was to perform the procedure also wanted a tonsilectomy as he thought the primary was in my tonsils.The surgeon wanted an ENT to assist in the tonsilectomy.My wife works at a large hospital and had an ENT speialist in mind.We went to see him and he informed me that base of tounge primary c that tests positive for HPV respond very well to chemo and radiation. In my case he suggested a very good prognosis.after doing the biopsy and finding high risk HPV present.I was a pretty heavy drinker for alot of years,but I almost always just drank beer. I hope this helps Mike

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hey Luv

We have just about the same diagnosis, BOT cancer with some lymph node involvement. I am at the mid point in my treatment, I get my 2nd of 3 chemo injections today and am at 17 of 35 rads. I haven't had too much difficulty so far, everything has been manageable. You've surely come to the right place for some excellent support. Question, you're 'luv' is for LaCrosse Wis or Lacrosse the sport? Cheers.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

And sorry you are here, of course, but you are most welcome to be here.

My C differs from yours, as a 20-month NPC survivor, so my help may be more limited than most others. You are in Missouri, and speak like your treatment options are minimal. A co-worker's step-dad had tongue C years ago, and was only treated with rads. Came to regret it- ended-up in Iowa City at the U of Iowa hospital, where he shoulda gone in the first place. Might be a long drive for you, but they do claim to be right there with the others at the top of H&N in America. My med team has direct ties to them, and (so far) they've done right by me. For your consideration.

Being where you are in the process, Mike, is not an easy place to be- but we have all been there. Googling sites like the ACS and NCI, and others of repute, is not a bad thing, but realize that they can only speak in terms of generality. It is good to be informed, but that which will not apply to you could be a bad kinda worthless info, if you let it get to you. You got H&N C, Mike, as do we all, past and present. This is 2010, and treatments are far advanced, compared to 10 or 15 years ago, as are the new meds used to help with issues. We've all battled, or are battling, C, and we're all still here, Mike. We are survivors, and you will be, too.

You start, Mike, with a little thought that you don't let go of- you NEVER let go of: I'M GONNA SURVIVE THIS BATTLE WITH C. Get used to it, Mike. We all have, and we all bear testimony to that battle having been worthwhile. All you gotta do is fight the best fight you can- your med team and support group, and the good Lord, will take care of the rest. I do ask you to stay involved with us- we are all here to help, but we need updates, and questions and concerns you have when they arise. And we are global- Jimbo's in Thailand, and Scam's in China, Tricia and Janymac in England, numerous in Canada, and Hawvet's in Hawaii. I'm in the Quad Cities, and GREG'S IN ST.LOUIS. And I reckon more than one of us has taken a road adjacent to the one you are about to take, and will give you some advice you need.

Believe

kcass

As for the man in paragraph #2: he's long been back to work as a contract plumber

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Love for the sport. My 2 sons play and I am the president of our HS Team.

Glad to hear you are tolerating the treatment so well.

Mike

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

Mike,

Like the others, sorry you had reason to be Googling "cancer", glad you found this site. The people here have made a huge difference for me - so much useful info and support.

I was diagnosed late Oct. 2009 with Stage IV base of tongue cancer. It had spread to two lymph nodes, one very large, one slightly enlarged. I finished treatment March 16, 2010. Last Friday, my doctor said he would consider me to be in remission. Of the three "hot spots", only one now shows any metabolic activity (the smaller lymph node), and even that activity is considered to be in the "normal" range.

Like you, I nearly Googled myself into a state of despair, becoming obsessed with some "doom and gloom" findings. This site exposed me to real people (not statistics). It raised my hopes, and gave me extra tools for my cancer-fighting arsenal.

Many things treatment-wise weren't as bad as I'd imagined they would be. Of course, we also have that "continuing to live" incentive . . .

Good luck Thursday. Take notes, take a friend, ask questions, have the friend ask questions. Write down a list of questions before you go - refer to the list, don't assume you'll remember on your own. When you have a game plan, let us know. Whatever your protocol will be, chances are there are multiple people here who did the same treatment, and are here to talk about it, and willing to help light your way.

Do well,

- Pam

CajunEagle
Posts: 353
Joined: Oct 2009

My wife set up a bi-weekly e-mail notice of my progress to all friends and relatives. This kept the phone calls and the redundant messages down to a minimum. Most helpful when I could not talk.

Don't be afraid to eat as much as you can.

Keep a daily log during your treatment. It will come in handy for meds you take, good days/bad days, various changes in yor vital signs, great for developing questions for various physicians, and a great read a year from when treatment started.

Be sure and let neighbors, friends, and relatives help you out. They a willing to help, but not sure how. Tell them directly. Go to pharmacy for me.... take garbage can out....drive me to treatment....set morning paper by the door....come visit for an hour or so...etc..etc. I thought in the beginning that this was pretty presumptious of me, but found out much later that it was the best thing to do.

I'm sure others have tid bits of advice.

Larry

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks so much for sharing your story with me. I am lucky my wife is Director of Trauma at a hospital affiliated with the medical center. She has the ability to make things happen if she or I do not like what is taking place.

You are right about this site,I feel so much better today mentally, and can probably stay focused enough on work to actually get something done today.

I will post the results of tomorrows Oncology visit soon.

Best!!

Mike

aemnoca's picture
aemnoca
Posts: 12
Joined: Mar 2014

Hi,

I was just told that I have stage IV tongue cancer, to say the least I feel that a boulder has been dropped on me. I want to thank you for this article it has been helpful. 

Can an you tell me about how long it was for you to return to travel and what will become the new norm?

Mike N.

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Mike,

Welcome to the H&N forum, sorry that you find yourself here.

You are responding to an older posting, which often generate less response.  If you start a new thread, you will hear from more people.

Mike is an active participant and will pick up on your question soon.

By the way I am also (was) stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads and Erbitux)

Matt

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

Go here:

http://csn.cancer.org/forum/164

Under Head and Neck Cancer you'll see "Post New Forum Topic", and start a new thread all of your own....like Matt said this one is old...like 4 years old....you'll get a lot of response with your own thread.

p

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi LL, Sorry to see you here but there a re some great people to help you through.

To recap some previous comments, as you are overloading with information, slow down and take a Pad and Pen' - and write down the critivcal information and or bits of information that are relevant - as you coem across it OR Print off pages off the net. Also keep a special page for QUESTIONS. This will help when you see you Doctor(s) as there is lot going on now and it's hard to remember it all.

You will soon have a good grip on all this. Normally we have 3 options of attack being 1. Surgery 2. Ratiotherapy and 3. Chemo of some type. I like another one which is 4. Nutrition. You can check my expressions page for more information on diet etc. The first 3 steps here can be started in any order depending on your case. Sometimes they suggest to have the RT and Chemo first to shrink the tumor, other times, surgery first, then chemo and RT to clean up what's left.

On the RT, if your clinic has it, IMRT (Intensity modulated Radio-Therapy) is said to a little better and more targeted with less collateral damage to surrounding tissue. The are bunch of Chemo dru in use. The Doctors will advise.

Let us know how things go at the Docs and again, take your note pad along to take a few notes.

Scambuster

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Thanks for the reply. One of the first things that crossed my mind was nutrition. I am a Power Lifter and do try to take good care of myself. I am assuming that the Whey Protien I already take is a good thing. I will probably lay off of some of the Pre Workout supps. until a professional tells me it's ok to take. I weight 235 lbs, not fat, bu stocky and muscular so I have some weight I can actually afford to lose if things get bad.

I will review your "expressions" page for more info.

Best!!

Mike

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mike,

Sorry you found yourself here, but welcome to our group. A better bunch of people would be very hard to find. As it was pointed by my friend the Cubbie Fan (Kent), I'm from St. Louis also. I would have sent you a note earlier, but just got back from out of town for the Holiday and just started looking at all the threads at lunch today.

I'm a little different in that I have stage 4, right tonsil SCC, mets to numerous nodes, diagnosed in January '10. I had tonsillectomy and rad neck dissection in Jan. followed by 7 weeks of concurrent rad/chemo. Treatments ended mid-April so I'm 3 months out and doing fairly well. You've already gotten a lot of good advice I see. My only advice for your visit is the same as others have pointed out: bring someone along if you can (2 heads better than one), write your questions down ahead of time and the only dumb question is the one you don't ask. Good luck tomorrow.

I'll be on the site later tonight and will pm you.

Good thoughts going to you and eveyone here!
Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I am curious, did you receive your treatment through the Sitemena Cancer Center (BJC)?

That is the facility I am using. Have been told it is the only NCI certified facility in the state.

Look forward to hearing more form you. I live in Eureka.

Best!!

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I just completed what I thought was going to be the reconfirmation of BOT cancer and my ONC says my primary site is my right tonsil. Looks like the radiologist who read my PET scan was wrong. I had two spots on my tongue and one spot on my tonil tested. The surgeon now says the invasiveness of my surgery will be less than if I had the BOT cancer.

I meet with the team of Doc's again Thursday for the results of the biopsy and to set the date for the surgery.

With the tonsillectomy and neck dissection done at the same time, how bad should I expect to feel? To date I have felt fine with the exception of a sore throat from the biopsy. I think I will be in for a very rude awakening when I come home from the hospital.

Mike

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

Mike,

I had my right tonsil removed at the end of October. No neck dissection, so I can't tell you what your recover will be like. It took me longer than I had expected to recover (maybe my expectations were way off - I assumed I'd be a-OK in a few days). Please do not search online for tonsillectomy support sites - I did, and got more than I'd bargained for - it seemed that the people on the site were in general folks who'd had the absolute worst time of it - horrible suffering and complications abounded. I spent a good deal of time worrying about things that were certainly not likely to happen to the average patient.

I MUST warn you, however about your uvula (sp?). It swells afterward. It was horrible - I thought I'd choke or suffocate - many people feel that way. I've never heard of anyone who did choke or suffocate. My doc impressed upon me the importance of keeping up with both pain meds and water intake. I think that being well-behaved on my meds and water schedules really helped my recovery. Hope yours goes well.

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Pam, thanks for the reply. Part of my problem is I have felt really good to date and this may be causing me to not recognize how bad I will feel when the surgery is complete. The biopsy of my tonsil is still very painfull 6 days later.

I am so ready to just get the treatment started. Waiting for it to happen is draining my good spirits.

Best!!

Mike

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

Yeah, Mike - waiting was irritating for me, too - same story for many. Soonest begun, soonest done. I also did no suffering before the cancer "popped up". I felt no pain - just a sore throat (that I attributed to post nasal drip, so that tells you how mild it was) - it was discovered thanks to one of my two infected nodes becoming HUGE (thank goodness it got huge - there's no telling how long I'd have gone without having my throat checked). First pain was getting scoped (not bad, but did hurt) - next was open biopsies with tonsillectomy. For me, that pain was considerable, and I have a pretty high threshold.

Another tip - ice is nice - during parts of my tonsillectomy/biopsy recovery, it really helped to have a cool pack on my neck - docs gave me one for the neck. Do well.

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I was stage 4 tongue cancer. Did the simultaneous radiation and chemo to shrink the tumor then surgery. The chemo and rads killed the tumor and what was thought would be required for surgery was just scar tissue not tumor. Treatments work. That was over 10 years ago and I've been NED ever since.

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

So glad to hear your long term health is good. Did you have Mets to the Lymph Nodes?

Mike

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

No mets to the nodes. Tumor was classified stage 4 because of the size. Tumor was in entire tongue except maybe .5 inches at the time. Tongue was about .75 inches thick because of the tumor, was wider than my teeth, and at one point was in front of my teeth all because of the tumor.

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

Hi LL
Just want to update you that I was diagnosed with stage 2.5 base of tongue cancer with 2 lymph nodes where the cancer spread. I was given the IMRT radiation for 33 visits and took chemo at the same time. I am 3 months post treatment now and doing well. I still have some healing to do, but all in all the tongue is not swollen and my first PET scan showed all areas reduced significantly but they need to wait 90 days for the next one as I still have a lot of radiation in my system. Let us all know what your treatment plan is and we will give you the good/bad of the treatments and what to do to feel better. There is a light at the end of the tunnel, but get you mind around that this is a long term fix, 6-12 months really. you need a great deal of patience and a lot of prayers from friends and relatives. It all helps.
Best of luck
Steve

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Hawk, thanks much for the advice. I had my first visit with my ENT Oncologist yesterday. It went very well and with their team approach, I feel very comfortable. My Doc. sits on the advisory board and all new diagnoses are reviewed by a group of professionals and discussed to insure the diagnosois is agreed upon and the plan going forward. I had my Lymph Node re biopsied and it was confirmed for Squamous Cell. My Doc is keeping me as an unknown primary until he sends me to the OR for a look and actual tissue sample.

I get my PET Scan today at 12:30 and will have those results later today.

All in all, I fell pretty good today.

Will keep the site posted.

Mike

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

Hope you bring us good news later, Mike.

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

My Doc called me last night with the results of my PET Scan. BOT is confirmed as the primary and is about 2 CM. Mets to the Right Lymph and some Superclavicular nodes also. NO OTHER SPREAD ANYWHERE!!
I am to have some pre testing next week and on the 21st I will have the BOT biopsied and he will see if he can use the robot for surgery VS going in by hand. The Robot he says is not invasive and will speed up my healing process. Worst case he goes in by hand and it takes allot longer to heal. Radiation and chemo to start about 6 weeks after a hopefully successfull surgery.

I want to PERSONALLY THANK everyone who so kindly communicated with me as you have made this situation a hell of allot easier to deal with. God Bless you all!!

An extra shout out goes to my "homie" Greg 53.

Best!!

Mike

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

Mike,

Glad to hear you've got the primary pinpointed. Now to the fight!

I WAS BOT with 2 nodes. Induction Chemo, then chemo rads. Doc considers me in remission now (got the word one week ago). With your attitude, and the extra surgery weapon in your arsenal, you've surely got what you need to win this war. Do it. Keep us updated.

Be well,

Pam

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Nice to hear from you and so good you are in remission. Makes my day, you must feel great about that.

I am fortunate that there are 2 very good Cancer Centers in St. Louis, Siteman where I am going and Spratt Cancer center too.

I am going forward with the surgery first.

TO ALL NEWCOMERS TO THIS SITE, USE IT AND COMMUNICATE WITH EACH OTHER. I HAVE BEEN HERE ONLY ABOUT A WEEK AND WHAT IT HAS DONE FOR MY SANITY IS AWESOME.

Best

Mike

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Mike, sorry to hear about your troubles but as a newbie I can tell you that you have come to the right place. I was diagnosed with BOT and Tonsil C on April of 09 and I live in rural So. Missouri. Unfortunately my ENT decided the only that could be done for me was surgery. So after he performed 4 surgeries with no result but the tumor growing back more rapidly than before he sent me to Barnes Jewish in St. Louis where they did the same thing. So I found this site where everyone was so helpful and ended up in Tulsa where I just finished 20 rads, had a feeding tube placed, a port put in and am now home until Aug. 2. If it wasn't for the people here I would still just be going thru the motions with surgery after surgery. Siteman wasn't covered under my insurance so couldn't go there but hear they are great. You will beat this. You PET showed it was still confined. That is good news. Unfortunately I have some spots in my stomach that showed on my PET that I will be dealing with also. This site is awesome and so are the people. Best of luck and keep everyone posted.

Debbie

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

Be Well

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

No you aren't. LOL

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

I'm NOT sorry

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Mike that is truly awesome. I wish you the best an I'll keep you in my prayers.
God bless you friend.
deb

finz2lft
Posts: 43
Joined: Jun 2010

I found that we are not cancer specialists. My Radiation Nurse said that things are changing so rapidly that what you read from last week has changed today. Stop diagnosing yourself and stay on this site and get an idea of what people experienced and how to handle the side effects of the treatment. We are all emphathetic towards you, are and have experienced what you are going to experience. We are here to help you and share with you. I played Doctor for a while, and found that this site is much better for me in handling the cancer. I find so much more comfort here, rather than trying to calculate if I am going to pass away or not. Live for today for your, your loved ones and us.

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I agree with you 100%. Since I have found this site with all of these wonderfull genuine folks, I have not googled anything else since. I just posted to Hawk where I am currently. Once I get the results of my PET Scan later today, I will post all of the latest info. I have.

My best to all!!

Mike

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hi, Sorry to hear about your new diagnosis. As you have realized this is a great place for support and information. Though it sucks it helps realize that u are not alone and that u will get through this. I am about 8 days post treatment for stage 4 tonsil. U just have to take one day at a time and be prepared for the hardest marathon of your life! u/we will get through this!! :) P.S. There is also the Oral cancer Foundation blog; but I like this one better it allows us to post pics of ourselves; I think it adds a more friendly touch! :)

Charles

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mike,

Sounds like your attitude is great. Good for you. My opinion that's half the battle. Glad to hear it hasn't spread. Had similar diagnosis on robot versus hand surgery. I had 11 nodes, 10 on right and 1 on left. Due to how close they were to jugular, ENT did surgery by hand. Turned out good and no issues from that.

Keep the faith, man. And nothin' can beat a couple of tough North County boyz, even this c-stuff.

Hang tough!
Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Is it common for my enlarged Lymph Nodes in my neck to almost double in size in less than a week? I did have a second needle biopsy last Thursday. I wonder if this is more swelling VS growth.

My Doc. is out of the country this week and I have a call into the Doc. that is covering for him.

My worry is that it is spreading

brendamurphy
Posts: 1
Joined: Jul 2010

My husband has been diagnosed with BOT cancer and when the lymph nodes began to swell (our first indication something was amiss) the second group of lymph nodes at the base of his neck swelled to about ping-pong size almost overnight. Don't know why.
His treatment regimen does not include surgery. He has a tumor (3 cm x 4cm) that was isolated except for the lymph nodes. He has had 2 big doses of chemo- 3 weeks apart- + 5FU given 24-7 by a pump at home. The port-a-cath has been great for this. After the chemo and he has regained some strength he will get radiation/chemo combo for 7 weeks, with radiation every day and chemo weekly. He ended up hospitalized because of diarrhea from C-Dif infection which was probably contracted when his white count dropped so low. He's still quite weak and anemic. They put in a PEG so he'll start getting nourishment- his appetite just isn't there any more. The good news is that after the first 2 treatments and the pump (4 weeks) the ENT scoped his throat and the tumor is gone! At least, not visible. The radiation/chemo is to prevent recurrence.

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Brenda,that is great news for you and your husband. I have elected to have surgery first then Rad / Chemo. I still have to ave the primary site (BOT) biopsied and the surgeion is going to see if there is room to use the Robotic Surgical Equipment. Doc says this is way less invasive.

Best!!

Mike

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

That happened to me. My Lymph Node doubled in size in a week. It started when they did the initial diagnosis. It is a scary thing. They decided not to do surgery (the location of the tumor). Radiation and chemo worked. I'm clean.

susan smiles
Posts: 12
Joined: Jul 2010

Dear LaCrosse, Are you from LaCrosse, WI. or do you like the game? I'm from LaCrosse WI.
Hi, I'm hoping I can share some things to help you feel better. Do you believe in alternative therapy at all? Stop eating sugar right away, as cancer feeds on sugar. You discover this the first time they give you a PET scan. The injected glucose goes to the cancer cells first. What helped me was going on a greens only diet, I have a Vita-mixer, but you can also buy green drinks dehydrated online, look for ones with organic spirulina.
Are you a Bible reader? I needed answers to my questions like "Why does a loving God allow people to suffer?" and "If I should die, what would I experience?" "What is the hope for people who have died?" Have you ever asked any of these questions?
Can I leave you with my favorite verse in the Bible? It's at Revelation 21:4&5 "And he will wipe out every tear from their eyes and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away." "And the one seated on the throne said "Look!, I am making all things new, also he said write because these words are faithful and true."
If you are interested in alternative treatments, I have some web sites you may want to look at. Hope to hear from you, sincerely Susan

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Susan, thanks for the reply. My kids play Lacrosse. I live in STL.

As far as Alternative Therapy goes, I am not at all familiar with it, so at this time I have no opinion.

I feel very well about my medical plan going forward as I am being seen through one of the better facilities in the country.

As far as diet goes, I do pretty well and have most of my life. I have never smoked, but have decided to either stop all alchohol consumption or limit it to only weekend family activities. Before I was diagnosed I would have a few cocktails every evening after work. Those days are over.

Best to you and your Husband.

Mike

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