In late April I was diagnosed with cancer at the base of the tongue.
I decided on Erbitux over cysplatin and underwent radiation and Erbitux for 3 months.
Now, I'm pretty sure that the cancer is back even though I had a clean up-the-nose-down-the throat scope exam 10 days ago.
The docs are determining if they move the PET scan closer than the scheduled Nov 2.

I was told that there could be no more Radiation and surgery would be the only fall back. I am looking for suggestions and alternatives.

Charm, it sounds like carboplatin might be the thing for me at this point. Keep posting please.
Feeling a little hopeless and a little scared.

Welcome to OCF! So sorry to hear you are facing a recurrence. If you just finished treatments all kinds of things can be happening in your recovery. Scar tissue can cause pain and many times members are concerned about it which turns out to be nothing unusual. I hope this is the case in your situation! Ive had oral cancer 3 times and its not easy to face a recurrence. The only treatments for oral cancer are surgery, radiation with or without chemo. As far as alternatives go, there are a million false remedies on the internet so beware!

Is there a tumor for the doctors to biopsy? When did you finish radiation? Did you have surgery?

Please add a signature when you are able. Click on the "My Stuff" tab, then on the drop down menu select "Edit Profile". Write your info in the white box on the bottom and 'submit'

Radiation ended early August.

No, I didn't have surgery. The tumor hasn't been visible since early July/late June.

Even as recent as 2 weeks ago the nose scope exam looked normal.

Ear nose and throat doctor is contacting radiation doctor to see if the PET scan can be moved up. Now scheduled for October 29.

Walt

Two months after TX is still rough as Christine mentions.
Not sure what symptoms you have that make you think the cancer is back already and it could just be lingering side effects. Plus a Petscan that soon after base of tongue cancer has a high chance of a false positive which will worry you even more. Since your doctor seems accommodating, consider asking for an MRI instead. Petscans are terrific in spotting lymph node cancer and their increasing use is a major reason for the decrease in unnecessary neck dissections. But BOT cancer patients' mouths suck up as much sugar rebuilding themselves as any remaining cancer cells do and sometimes more, so remember that if you do go with the Petscan that a "bad" one may not be bad at all.
While I did have surgery when my cancer came back, I also did have radiation and chemo. The "no more radiation" doctors are generalizing about no more IMRT radiation, usually because they are not using CyberKnife or similar focused radiation. It's just a candid self assessment of their radiological ability instead of a medical fact . Actually a second dose of radiation is becoming almost standard at CCC, mine is just ahead of the curve with being able to do a third round of radiation.
Bottom line: get yourself evaluated at a CCC where if in fact your cancer has come back, you will have more options of treatment. It is not hopeless although I do agree that it is scary. Hang in there.
Keep the Faith
Charm

This soon after finishing treatments means your PET may light up like a Christmas tree. There is swelling and healing sores which will look like its back. My doc explained to me that a PET should not be done with less than a 3 month window after finishing treatments, he said 4 months post rads is even better.

To ensure accuracy, rest the day prior to and the day of the scan. The day before, drink plenty of water to help flush your body and avoid carbs and sugar. These little things all add up to making your scan more accurate.

One point everyone else didn't mention but I'll hit. Carbo, and or cisplatin is ONLY effective for oral cancer in conjunction with radiation. Likely they won't reradiate if it is back (what you're feeling in term of a recurrence may just be healing or residual fall out from radiation.) I'd push for an MRI, the only reason I say this is because of the Erbitux/cisplatin/carbo - HPV conundrum. I do believe in clinical trials but in conjunction with standard treatment not in replacement of - too much risk where your life is concerned. So if it is a recurrence so soon after I think surgery is you option, unless as charm says theyre willing to do cyber knife etc.. Good luck. I hope very much this is just a scare.

You just heard from 2 of the best. They have been thru this and know what can occur for awhile after treatnents. I have been there too with their help and advice. Get your mind on something else and enjoy your life.

Walt,

Last study I saw said PET scans read 40% false positives when taken under 12 weeks after radiation. having said that I just had one 10 weeks out and it was clear but my docs said the one they are more interested in is the one I have comming up that will be 6 months from completion of radiation. So keep that in mind if they OK the PET early.

What makes you think the cancer is back?

I so appreciate the knowledgeable caring advice.

I'll message my ENT doc and request an MRI instead of a PET this soon.

I'll also enjoy my day with your recommendations and presence.

I'm experiencing peace. Thanks!

It's still early. PEzt's are usualy usually done no Zearliet than 12 weeks. I hadno one at 5 months, and still showed false postive. CT and MRI are not as reactive, sensitive like the PET, which relies on glucose activity, and often times are used instead of PET, for earlier diagnostics due to high false positives in PET, as mentined. None of my cancers were ever found during my scopes, and only after a direct biopsy was done during the largynoscope or FNAB. There are other radiation, surgical techniques like laser surgery, brachtherspy, and IORT..intraopertive radiation therapy, both of which are good in previously irridatec areas. They usually incorporates resection, EBRT, possibly a flap, and maybe more EBRT after, Reirridation, robotic surgery. Hopfully, it's all clear.

I agree. Kevin finished tx in late October and had a PET in March. It showed a spot and sent everyone into an uproar, but then an MRI determined it to only be inflammation. It is TOO soon for the PET. Glad you're going to ask for the MRI.
Best of luck, We are here for you!
Kathy
Oh and PS..they NEVER saw his tumor with the scope. Means nothing that they can't see it.

Appreciate the info. Some terms I will search for, but what is "a flap"?

Usually when they take skin from somewhere and use it to rebuild something. I had part of my tongue rebuilt with skin from my wrist.

Anytime you want to know the meaning of somewthing said re HNC's just scroll down to the bottom of any page and click on SEARCH. This site is FULL of info.

MRI 3 pm tomorrow/Wednesday!

I've thought of another explanation for the pain. I've had a tightness on both sides of my throat Radiation ended. It was clearly more noticeable during a yawn.
On September 7th I had an Endoscopy performed to biopsy esophagus.
They put me out to perform this.

I suspect that the use of the apparatus to jack my mouth open, likely ignored the tightness and ripped scarring tissue. It was within a 1-3 days that this pain started.

Good luck with your test tomorrow Walter! Scar tissue can be painful. I hope thats all it is or as you mentioned that by forcing your mouth open they pushed it just a little too far and now its hurting. You are still recovering as just finishing treatments fairly recently. Keep up your good nutrition and hydration plus add some high protein whey powder (found in most drug stores by the ensure) to help with your healing.

Best wishes!!!

Christine, I appreciate your encouragement and I do have some of the whey protein powder. Had a blender of milk fruit and whey powder yesterday.
I am not eating enough. It hurts. I can drink, but get so low on energy that I'm afraid I get apathetic.
Just drank a bottle of Boost.

How many calories in that Boost can?

Your thought sounds perfectly logical. Hope that's all it is!
Kathy

Walter, the only way to feel better is to focus more on your nutrition and hydration. If you already have the whey powder, please start using it to boost yourself back up. Every single day push yourself to take in a minimum of 2500 calories and 48 oz of water. if you can somehow take more in do it. I loved Davidcpa's idea about drinking a can of boost and water every hour. So when it turns 9am drink a boost at 10 am drink a bottle of water at 11 am have another boost, etc. Boost makes a very high calorie drink which has 560 calories in it which will help by making it less you have to drink to hit your calories for the day. I bet if you push yourself to take more in you will begin to feel better.

Hang in there, you already went thru the very worst of this awful illness.

It's very hard work Walter, we know that. Sometimes I know we would read these suggestions and say, "they have no idea how bad this is", but that is the beauty of this site...we DO know and we got through it by forcing ourselves (in my case forcing my husband!) to do it. We know you don't want to, neither did we, but this is your life and you gotta make the most of this chance. David's idea is great. The meds can help make it happen.
Kathy

2500 sounds like a pretty big/huge amount. The bottle of Boost was 360. It was Boost Plus Vanilla - pretty good taste. The other Boost (no Plus) was 240.
2500/360=7.
2500/560=4.5
I'll do a search to see where I can find the 560.
I appreciate the info and the *push*!

Walter, you can buy the Boost by the case righ thru the OCF Amazon link. This helps OCF by giving us back 6% of any purchases. By using this link for any Amazon shopping it will really make a difference! OCF is a very small non profit that works on a shoestring budget so every penny counts.

The Amazon link is located on the main OCF forum pages. Its the green box towards the top right. Just click on that and OCF's info will be there for your Amazon Boost VHC purchase.

Yes the word is PUSH. You must push yourself. After what you have gone thru your body needs those calories to rebuild itself. Same with the protein, high protein will help with your recovery and healing. I know it sounds like way too much but its not. When I was recovering I would make huge chocolate peanut butter milkshakes which were around 2000 calories each. Some days I would drink 3 of them. I never gained an ounce. Thats how hard my body was fighting to bounce back, it was burning up calories at least 3 times my normal rate. Every single day you are one step closer to being well so help your body by pushing to drink as much as possible and gettign those calories in.

Best wishes!

Good luck walter. take care

6% is def worth-it.

P-U-S-H, I'll keep remembering.

Going to search for weight-gain smoothies.

You can always try my chocolate peanut butter milkshakes. They are loaded with calories as I use whole milk and regular ice cream.

All ingredients are approximate....

Chocolate Peanut Butter Milk Shake

3 - 4 cups of chocolate ice cream
1 - 2 cups of whole milk
2 tablespoons peanut butter
1/4 cup chocolate syrup
1 scoop of Carnation Dry Instant Breakfast Powder
1 scoop of whey protein powder

Blend on high for several minutes until everything is very smooth and creamy. Texture plays a big role in what a person can or cant handle so you want to blend this for a long time. I try to shoot for a consistency of what paint looks like when you pour it out of the gallon container. (Sorry for the weird comparison but thats all I could think of that was very smooth.) If its too thick add more milk, too thin add more ice cream. Drink one of these every single day and also do your 6 cans of boost and you will be ok. Dont forget to drink water too.

Give it a try, it cant hurt

Hi, Walt
my husband used a scoop of Now Sports Natural Vanilla Whey protein in each of his shakes - along with a packet or two of Carnation Breakfast Essentials. Mixing in full fat vanilla ice cream also worked for him.
Good luck and fingers crossed for you.
Maria

All those yummy shakes are fine when you have taste but most finishing Tx are pretty much tasteless so why bother mixing all those ingrediants when you can just pop a top and down 560 nutritionally balanced cals in 1 minute? Post Tx I mixed my VHC half n half with whole mike and drank one with each meal.

Well, they saw something in the MRI that was suspicious in the original tumor area, though be it smaller.
ENT Doctor said that he couldn't tell if it was dead cancer cells or the small possibility of the start of recurrence.

So, he is scheduling me for a biopsy.

Good luck!

Keep in touch. Are they doing it soon?

Hi Walter, very sorry to hear this. It must a very worrying time for you. Going back to your comment on yawning, I found yawning very painful for weeks during and after treatment. And I think it also started after the biopsy. I didn't tihnk pain was a typical symtom of a recurrence, if that is what is worrying you. But obviously it will be the biopsy that will give you the answer. I hope you don't have to wait too long. Sally

Well guys and gals, I'm back with not so good news.

My ENT Doctor called and said that the new biopsy pathology showed live cancer cells even after previous treatment 2 months ago.
He has discussed with my Onocology Doctor as well as my Radiation Doctor.
My Radiation Doctor's reflection was to use Brachytherapy.

I'm expecting a call from either my Radiation Doctor or my ENT Doctor to verify the use of Brachytherapy.

I'm wondering how I can qualify for Brachytherapy as a better option than surgery?
I do not want to loose my tongue!
Anybody have experience with Brachytherapy?

You can do a search by putting brachytherapy in the search box towards the upper right of the screen. There have been a few who have had that procedure but its not that common.

Are you being treated at a major cancer center?

I'm so sad to hear this Walter. Are you being treated at a CCC as Christine asked. This is just another example of Erbitux only with radiation maybe not being a great tx option. I pray they can get this figured out. If you aren't at a CCC then please get there.
Keep in touch, please!!
Kathy

Walt,

Sorry to hear this. Were your cells HPV+?

Walt, I too am sorry to read of all this. Where in California are you?

I'm in Los Altos (Silicon Valley) about 40 miles north of San Francisco.

Don't quite remember, but pretty one of the doctors said that the original cancer cells were HPV+

My Radiation Doctor called be and said that "surgery was the way they did things 50 years ago" and he said that he would do everything in his power to help me solve this without surgery.

He recommends brachytherapy and he has talked with the foremost expert, Dr. Jeffrey Demanes who is now at the UCLA Medical Center. (DOES this qualify as a CCC?)
My Radiation Doctor is sending my records to Dr. Demanes.

Apparently they will insert catheters directly into the tumor through my neck to administer high-dose radiation directly into the tumor for several minutes each day for 6-10 days in the hospital at UCLA Medical Center.

Currently they are thinking of treating me with cisplatin before the brachytherapy starts, since the original treatment was with Erbitux and the tumor has not yet been exposed to cisplatin.

Not clear about other options especially to lessen the cisplatin impact/dose.
Likely to be getting a new PET-CT scan next week and *maybe* starting Chemo.

Walt,

I found myself in the same situation as you a few months out of treatment. My original tumor was fairly large 3cm X 1.8cm. Four months after treatment I did a PET that showed a pea sized remnant of cancer. They also saw some residual microscopic disease, which was like a sprinkling of cancer cells throughout the original tumor.

So this is different than a recurrence; this is a situation where the radiation treatment does not completely eradicate the cancer. In my case it was more troubling in that surgery was not an option. In your case it is still troubling because the radiation was not completely effective.

I got four opinions regarding my condition and I would recommend that you get as many opinions as you can before deciding on further treatment. I ended up choosing Cyberknife treatment which gives you higher concentrations of radiation over fewer treatments (50gy of radiation over 5 treatments for Cyberknife as opposed to 70gy of radiation over 33 treatments). My doctors felt this would get even the radiation resistant cells as they would be hit by a bigger blast each time. I did not get an opinion that included brachytherapy but I think they must be thinking along the same lines (radiation source close to the cells).

Either way I recommend you get as many opinions as you can before making a decision, keeping in mind that this is not a recurrence issue but a radiation resistance issue.

Best of luck,

Kelly,

Somehow, your reply and distinction between recurrence and radiation resistance is hartenting.

I do have a contact at Stanford Cancer Center that I got a second opinion back in april. He does nothing else bit this kind of cancer.

I don't want to delay treatment, but I should probably see him.

Walt,

The whole point here is to get it right. Getting those opinions will not take enough time to effect your treatment but may very well effect the rest of your life by giving you options that are best for you.

By the way, don't limit yourself to your state if your insurance gives you any latitude. If the best treatment is out of your area it is still the best treatment. You have a very narrow number of options here so you will not have that many places to go. Just try and make sure you cover all of them the best you can.

I'm not clear on how to identify the *best* treatment.

I'm pretty subjective about removing my tongue, but that *could* be the best treatment.

This is always a tough call. All we can do is search for the best options available out there and then go and see the folks who are presenting them. The "best" option is the one you feel is best for you.

I know that the options I chose were very clear to me after hearing what the various institutions had to say. Ater it is all said and done this almost always comes down to a gut call.

Get multiple opinions and see if that becomes clearer.

I have a friend that beat this a little over 10 years ago.
He was treated at MD Anderson in Huston and he has put me in-touch with them.
They now have my pathology report faxed and insurance cards and signed documents pdf'ed and emailed.
They acknowledged receipt saying I should be hearing from their Head and Neck Center soon.

PET/CT Scan tomorrow!

I'm locally scheduled to have a Med Port installed on Tuesday AM and they will admit me probable Tuesday or Wednesday to start TPF chemo:
Docetaxel(Taxotere) 75mg/m2 iv over 1 hour d1
Cisplatin (CDPP) 75 mg/m2 iv over 1 hour d1
5-FU 750 mg/m2/d civi d1-4
Repeating every 3-4 weeks.

Major chemo Walt. This is what Kevin had too. It was very rough and he was 54 and in perfect health other than the obvious.
I'm not saying I wouldn't do it, but just know it will be harsh. STAY HYDRATED!! Cannot stress this enough. Go in for fluids daily if you need to. Even if it's to the ER. That's what some of our friends have done lately.
Kevin and I had a bp kit at home. If his bp went below 108/60, we went for fluids. It's an easy way to tell if you're getting dehydrated.
You have someone going with you to your appts, right?
WIll be praying Walt. Please continue to reach out to us as we will be watching for updates.
Blessings,
Kathy

Congrats on your negative PET scan. I just finished treatments not too long ago Sept 26th. Do they usually wait 3 months or 6 months to do the PET scan after treatments. I do have a follow up appointment on the 6th of Nov but I think they are just going to scope me again.

Thanks Kathy.

This morning they did a PET/CT scan and the tumor is there, but has not spread.

My ENT Doctor wants to remove my tongue.
My Radiology Doctor has performed Brachytherapy and since he has not performed one in several years, he highly recommends Dr. Demanes at the UCLA Medical Center. He has FedX'd (Overnight)the PET-CT scan to Dr. Demanes and he previously sent the other records and Pathology reports.

They will each be at a Radiology conference in Boston next week. So, it possible Dr. Demanes might not have time to review until the later part of next week. My Radiology Doctor will try to see Dr. Demanes at the conference.

The description that my Doctor provided on Brachytherapy sounds impressive:
X-Ray image to guide insertion of catheters to the edge of the tumor and software controlled treatments with machine inserted radiation wire inserted into each catheter for a given amount of time.

Won't know if I'm approved for the treatment until Dr. Demanes review and contacts me.

Good news that it hasn't spread.
Hate the stinking waiting game!! They want to remove your whole tongue?
Kathy

Yes, the ENT doc especially!

Wow....

There are some of us here who have had the entire tongue removed.
Life goes on pretty well, all things considering and is preferential to the alternative .
Tammy

Hi Tammy,
Your post is somewhat heartening.

The unknown: it's hard to think of how life could be without a tongue.
* suppose no talk
* breathing?
* eating via GTube?
* cleanliness of mouth?
* teeth?
* mouth at-rest
* seems suction is a "natural" at-rest; no suction?
The mind considering / *pulling* towards suicide is in itself frightening and astoundingly painfully saddening.

Finished 1st new chemo round early yesterday and doc said appointment in 2 weeks; Yikes, I'm not eating and confused with various mouth sorenesses and pain.
How do I survive the 2 weeks and if there is still pain, how much does that point to surgery or just stopping all this.
Clearly, I'm frightened - anxious - trying to predict.

Thanks everyone, sorry for the negativity.

Walt, you are among friends here. Its ok to be afraid, to vent, rant and blow off steam. We will listen and do our best to come up with tips and ideas to encourage you.

So sorry you are going thru so much!!!!

Wondering if you are able to check out working with a therapist. That may help you to find a way to consider having a promising future even if you do face some limitations.

I know all too well how difficult it is living with a handicap. Mine is very visible. I have become severely disfigured due to going thru oral cancer 3 times, the last one was what did me in. Life is much different for me than from how I lived prior to getting cancer. To be honest with you, in alot of ways my life is much more meaningful now. I spend a couple hours a day helping others which also helps me by taking my mind off my own problems. Ive learned to adapt to my issues and live with them. Eventually you will adapt also. I know its not easy but you can adjust to your new life and still make a decent life for yourself.

Hang in there Walt!!!!

Thanks Christine!

Currently hardly eating or drinking.

Mouth sore. Burns, hard to swallow.

Did Cream of Wheat in hospital.

Hi- I don't have a tongue and life is till very good. You can live without it and it will be OK. You will adapt. Feel free to ask me anything...

Miss kate's awesome as are any of the survivors here who've had extensive eps surgery.

Miss Kate, thanks for the encouragement.

Found a very complete *Tongue* web site that is dental based:

Search this link:
http://www.rdhmag.com/articles/print/volume-24/issue-8/feature/the-tongue.html
for: "Life without a tongue".

Quit descriptive and it sounds like very current description of the State of the Art.

Is it possible that the world of Dental Work has a functional edge on addressing this problem?
Also, I have a link to a University doctor who sounds to have developed a significant grafting/fabrication technique. I'll add a link to that later.

[quote=misskate]Hi- I don't have a tongue and life is till very good. You can live without it and it will be OK. You will adapt. Feel free to ask me anything... [/quote]
Not sure what to ask.
Sounds like no meals, no talk, no social.
What's left? Typing, I guess.
What about breathing?
What about resting?
What about transplant?
Anyone doing Stem cell research?

Walt you are getting ahead of yourself. Seems like you are worrying about a procedure that may not even have to be done. But , should you need a total glossectomy plus or minus whatever ( depends on where the tumour extends too, or not ), you will be ok.
If you only have a total glossectomy you will breathe in the normal way same as everybody else.
Kris eats, well swallows liquids.
He has major dental issues post rads and trismus, but that is improving.
There are good apps you can download onto an IPad that will speak what you type. ( Speakit app ).This is a tad slow but is ok. You should be able to talk with the help of a speech therapist . Try holding your tongue still and talking. It is quite intelligible..
Honestly try not to worry about things that may not happen.
If they do, I can honestly say life is still great and well worth living.
Thinking of you,
Tammy

Hi there actually from what misskate has mentioned of her experience, she can eat and taste (there are taste buds all over the mouth. ) she can speak intelligibly - and eat an swallow. It may take time to get to that point but he is doing well. Hugs!

Tammy, Thank you so very much for your sharing of logic reality wrapped in such warm gentleness.

Your message is taken to heart.
You of course are right and I will stop "getting ahead of myself"!

After my first round of chemo in the hospital for 5 days, I went home for 2 an back in the hospital for 7 to cure mouth sores and gain weight. Back home and better AND tumor seems 87+% less painful, maybe even just somewhat sore. - First Round WORKING!

Cheryld, Appreciate the encouragement and warm thoughts!

Hi Walt,

My husband has just been diagnosed with SCC at BOT stage III. He is seeing 2 surgeons at UCSF Mt. Zion. I'm sure you are familiar since you from the area. The one surgeon is a reconstructive surgeon. He told us that he will use a free flap from the thigh to create a new tongue and esophagous for the part that they must remove. They are only taking part of his tongue. The doctor says he will bew able to eat, drink, and talk once recovery is complete. No Chemo or rad this time. The doctors are part of the Helen Diller CCC. It's a lot closer to home than Houston. And they are in the top 15 Hospitals in the nation along with their cancer center.

Hi Bette,

I did a second opinion at Stanford Cancer Center. The doctor was Harlin Pinto. He is an Assistant Professor and he is 100% SCC of the tongue. I was really impressed.

Sounds like your husband has been through more than his share.

Surgery sounds tough. My ENT doctor prefers this and he is from UCSF. My Radiologist points to Brachytheropy. Friday I enter El Camino Hospital for 5 days to receive my second round of chemo.

I wish you and your husband well and a Happy Thanksgiving!

Many options to do - unfortunately surgery for most tongue cancers is the best chance for a cure. This kind of cancer can be very aggressive and spreads like wildfire. It certainly is a tough choice to make ! .....but it may be different with your pathology and because it is base of tongue. Good that you are getting lots of opinions- just with what you feel is the best option for you

You will have people to work with on speaking and eating. It will be compromised but you will be able to gain things back- how much or how little depends upon how the surgery goes and how your rehabilitation goes an dhow much effort you personally want to put into it. Some people have all the desire there but for whatever reason the recovery from the surgery and treatments didn't go as well- and other could have had more success if they had just tried more and not gotten discouraged. Most glossectomy patients are at least able to eat a soft diet and become fairly intelligible with thier speech... and that is sure much better than the alternative.

Thinking of you Walt and hoping you have the very best outcome possible whatever path you choose!

Water and other liquids consumed daily should be half your body weight in liquid ounces. I'm 180, so my intake should be 90 ounces a day! Everyone's intake and requirement is different. 48 ounces would be for a 100 pound person, and would be under hydrating in most cases..FYI.

Paul,

That's interesting. We have never had that presented on this site, at least in the 6 years I've been here. My docs at Moffitt told me 2500 cals a day which in liquid form equaled appx 48 ozs and they said to drink 48 ozs of water so when I went to a strickly liquid diet I was consuming (on a good day) 96 ozs. Now I was only 150 at the beginning of Tx and they never mentioned my weight as part of their recommendation but of course that doesn't mean it didn't figure in.

So my interest is where did you hear that formula?

For those of us who don't have much faith in formulae about how much liquid or water to drink, there is an all natural test that any doctor will admit (okay, you may have to push them a little bit before they fess up) is the best indicator of hydration:
the color of your urine. The darker it gets, and the more yellow or orange the urine is, is an indication of dehydration.
The lighter the urine is, the more hydrated.
This assumes a normal kidney, not having jaundice, etc or having just eaten beets.
If your urine is pale yellow, you are most likely fine.
Charm

Hi David,

I exercised since I was 15, up until cancer put and end to that, and had read that often. There is a nutritional formula for cancer nutrition similar to BMI, and for adequate hydration, which basically comes to half your weight, that I also read in a medical oncology book I have ( $$$). I'll try to find which book it is, but I probably have 25 or so. Maybe Principles and Practices of Head and Neck Surgery and Oncology or Head and Neck Cancer..not sure. These books have several hundred pages, and wish I recall 1 percent what I read.

A nutritional assessment is in "Complications in Head and Neck Surgery", pages 42, basically based on Harris-Benedict formula for basal energy expenditure (BEE). Trying to find the hydration formula aspect, if it's in here, but it's 794 pages.

You can also check for dehydration by pulling the skin on the back of your hand and see how quickly it retracts. Some people may just have loose skin, so its not failsafe, as well as taking meds, vitamins that darken the urine, vitamin C, but both can give a quick assessment, in addition to other findings.

Even knowing this, I was dehydrated during treatment, needed several IV infusions. I wasn't talking in half I should have, even with the feeding tube. Guess there is a difference in reading and practicing it.

There are many hydrstion calculators on-line...search Daily Water Intake, that are based on weight or caloric intake. I just did one, and came out to 90 ounces. Of course, there are other factors..climate, activity....

One point to make about urine color (and believe me I drink a LOT daily) is that vitamins and supplements and medication you take can affect it. I take circumen and it turns my urine a lovely shade of deep gold! But yes under normal circumstances the specific gravity of your urine is often determined by color. Sorry for over sharing.

Cheryl

Ewww!. Grammatically, when you used the parenthetical, your post says you drink a lot of urine on a daily basis.
As one newbie posted : Personally I don't believe it.

Sorry but I just had to have some fun with the theme of misreading posts to come to nonsensical conclusions.

Charm

I noticed that too, Charm! We can always count on you to remove any confusion from anything posted here and to give us accurate information. . . . . otherwise, we might all be drinking it too. Thanks for always watching out for us. You are one cool Dude.

Now we are really gonna lose some people...lol. I remember that survivor guy that urinated on his head scarf to keep cool in the desert. Guess when you are hot, you will do anything to cool off.

Deb

I have to agree with Deb, and add that sometimes, you just gotta do what you gotta do, and whatever works, as long as it's ok with your doctor.

Actually, and maybe unfortionetly, drinking it is a very alternative cancer treatment that some do.

I use Glucerna 1.5 cal for diabetics...8oz, 356 calories, 19.6 grams protein, 31.5 carbs. I revived 8 cases from my treatment center, but I think was done through my insurance...Medicare, but thats ok. Some OTC Glucerna, boost and such are becoming to have less calories... less than 100, and deigned or advertised to reduce weight. Even the bottleis are shaped like a figure with a small waist. I have a jack LaLanne juicer, a vitamix, but it's easier for me to pop the lid too. Good luck with the biopsy.

Giggle... Let me rephrase that - I drink a lot of fluid daily... NOT urine... Promise.

You wicket, wicket people:-)

Well, I've been back home after my second round of chemo (the 5 FU reduced from 5 to 3 days)for about 5 days now. Starting to feel a little better. Tumor pain gone. Still dry mouth and down to 160 lbs. Did 3 days in a row of IVs after they released me.

Looks like I'm going to get a total of 4 rounds. So, the third round will likely be right after Christmas.

They likely won't do a scan until possibly after round 4 around February. Notice all the "likely"s!

I'm torn between wanting to ignore this whole thing (believing that chemo recovery is the end-all) and attempting to prepare myself for the unknown likely-hoods of Brachytheropy and/or surgery.

Radiation Doctor spoke with Brachytheropy Doctor who said he would look at my records 3 days ago.
Was supposed to hear back and getting anxious.
I really want to ignore all this and go sailing and drive my loudly modified RX-7 convertable. Mixed emotions of wanting to enjoy eating and preparing myself for not.

My two sons and my daughter will arrive on the 18th.

Walt - Glad to hear you are feeling a little better. The "likely's" and the unknowns that you mention can be unnerving. Try not to give them too much time, maybe set a time limit of a few seconds and then think more about all the positives like your "loudly modified RX-7 convertible" and that your two sons and daughter will be with you soon! Re waiting to hear back from the Brachytherapy Doctor - of course the Waiting is the Worst!! Maybe you could call and if you are really sweet with the person answering the phone, they might be able to tell you something re how long you need to wait. Or you could send them a FAX with how anxious it is making you to have to wait? Do you have a wife or Significant Other that could call and cry a little on the phone so that they hurry up with the results? Let us know what happens and best wishes for some good news coming soon!

I had HDR-IORT..High Dose Rate Intraoperative Radiation Treatment in August, due to a recurrence, and having prior surgeries and radiation, which is a form of Brachytherapy, but instead of several, you get one high dose of radiation during surgery (10Gy-30Gy), which is more effective in some ways, and microscopic cancer. In mine, they resected the tumor, did HD-IORT 15Gy directly on the tumor bed while the neck is open during surgery, then performed a pec flap to the neck, so the neck could heal better, and bring new tissue to an area to get additional EBRT several weeks later to make it more effective. I then had 50Gy IMRT for 5 weeks, with Erbitux and Taxotere as radiosensitizers. Brachtherapy can be used with additional EBRT or not as a boost.

I had the same chemo regimine you are getting, and is called TPF Induction Chemo with Taxotere, Cisplatin, and 5-FU. 5 days of that chemo killed all my cancer..Tonsil, BOT, Vallecula, three bilateral nodes, but this is not permament, and if no other treatments are given, other than induction, the cancer will return in less than a year, so radiation and or surgery is needed in addition.

Good luck.

Receive a call from Dr. Demanes the Brachtheropy doctor from UCLA.

He confirmed that ai am a candidate, but scheduling is dependent on
his conversations with the PAMF doctors and a question as to if I should do chemo round three or chemo round 4 or do Brachytheropy imediately.
PaulB, you sound very knowledgeable and your experience sounds complicated.

I had a shotgun education lol. I didn't even know what an Oncologist was three years ago lol. I had my procedure with one of the top doctors in the country for Brachytherapy, and IORT, which latter is only done in a few places. I went to him with Brachytherapy in mind, but said IORT was my only chance, so that's what I did. It's done in coordination with the Radiation Oncologist, who is there during surgery, and the ENT, and Brachytherapy is too, I believe. You may get more EBRT after, mine works better with it. Good luck.

Is that similar to a shotgun marriage?

You crack me up Walt!! So glad to see you smiling!!!
Kathy

Yes, but worse lol! These docs have all kinds of lethal weapons, and ammunition. Then when they are finished with you, they make you see all their friends..MO, RO, ENT, and the rest of the gang.

Tuesday AM at 4:45 I check-in to UCLA Medical Center to receive Brachytherapy starting Wednesday.

Tuesday they will put-in the cathaters and trach and nose feeding tube. All of which will stay in for maybe 10 days to support 2 treatments a day for about 8 days.

On discharge, I will spend a few days with my son Ted in Irvine where we are currently and have been watching Breaking Bad!!

As mentioned, I had a different form of Brachytherapy, both which are good for treatment of recurrences in BOT, others places. Good luck with the treatment, and are they planning on doing additional RT afterwards, they usually do, maybe chemo too? Anyway, you are at a good place at UCLA.

wishing you all the best with your treatment Walter.
Love Breaking Bad.
Tammy

Best of luck! Saying a prayer for you... Or ten! Hugs!

Well guys, I finally found my way back here.

COmpleted the Brachytherapy over two months ago and getting a PET scan a week from today May 3rd.

I survived, but I've developed a couple of lesions that are really sore and negatively impacting my drinking of Boost.

I'm getting a prescription filled for pain as well as antibiotics.

Wish me luck!

Walt

Good to hear from you. Hoping the pain meds give you some relief!!
Kathy