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Dale_G's picture
Dale_G
Posts: 18
Joined: Dec 2010

Hello everyone. This is a 'club' that I did not wish to join. This forum however, has been a great source of information so far and I thank all of you who have shared your experiences and information. It is good to know that I am not unique and that others have posted stories remarkably similar to mine.

In late October, my primary physician palpated a mass in my neck at my annual physical. I had noticed it only days before and thought it was a swollen gland. The PCP referred my to an ENT, and I was diagnosed on 1 Nov. with metastasized squamous-cell neck cancer. The primary is way down my throat at the base of my tongue, and it has invaded a lymph node in the left side of my neck creating the aforementioned mass; ~3cm in the largest dimension. After the initial dx at my initial ENT visit, it was 'off to the races' with CAT scan, PET scan, labs, etc etc. It seems that the drill is well known here. The pathology report from the thin-needle biopsy that my ENT performed confirmed the dx a few days after 1 Nov.

Nov. 23 I had a laryngoscopy/biopsy of the primary site, and PEG tube installed. Spent an uncomfortable night in the hospital. The biopsy confirmed the dx and also confirmed virus involvement, which I am told is a good thing.

Yesterday I had my radiation simulation appointment. Got my tattoo and my 'Hannibal Lechter' mask made. Today I went back to the ENT and had the PEG tube stitches removed. Much more comfortable now.

Monday I have some lab work done, the the treatment begins at 0900 Tuesday with my first Cisplatin infusion, to be followed up at 1400 with my first radiation tx. I'm to have 37 or 38 radiation treatments, and 3 Cisplatin infusions.

Some personal info: I'm a 57 y/o male, never smoked, light drinker, a veteran firefighter/EMT and former paramedic and emergency-room technician with 36 years in the fire service, 32 years as a career professional currently at the rank of battalion chief. I do I.T. work for the fire department, handle our records management system and work on IT related projects. I've lost 60 pounds over the last year-and-a-half by exercise and permanent change in dietary habits. I heat a very healthy diet of vegetables, fruits, beans, nuts, whole grains and a very moderate amount of meat, fish, poultry and dairy.

My spirits are good, I have a lot of support from friends and family. I'm in a good mental state directed toward getting well, and physically I'm more fit than I've been in years. I have enough accrued sick leave to remain off work until early March, and I'm in my third week off from work.

One challenge I have had so far is that my insurance (Aetna) will not cover the Caphosol mouthwash, and I don't know if I should bite the bullet and shell out the $650 - $900 to get it.

I have not exercised much in the past 2 weeks, and I wonder if I will be able to get back into some moderate exercise during my rad/chemo tx? I ask this because even though I've been told that treatment is going to be rough, I really don't know what the physical and mental side-effects are going to be like.

That's probably more than enough for now - I'll be around. Looks like I'm going to have a lot of time on my hands through the end of January.

Dale

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

Like many here say - welcome to the club - sorry you qualify for membership.

Sorry to hear about the cancer (I, too was diagnosed base of tongue with lymph node involvement - late last year). Glad to hear of your good attitude, support base, state of health and job situation - all in your favor.

As for exercising, we're all different. I was not in good shape at diagnosis, but started doing some light exercising. I had some days that I couldn't exercise, and some that I just didn't, but was able to do something more often than not (some days my activity was greatly reduced, but something's better than nothing). I wouldn't be surprised to hear later that you were able to maintain a respectable exercise regime during treatment.

Do well - keep us updated.

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

The good news is the virus involvement - HPV? If so, it will respond well to treatment. However, if you have a significant other, he/she should also be checked. For women, it means getting the PAP smear yearly regardless and checking for HPV every other year (her doctor should know this). For men, it means watching for signs of tonsil and other throat cancer.

Your PEG means that you will probably have few weight loss and dehydration issues. Will your insurance cover Jevity or similar tube feeding supplements? The bad news with the tube is that the only thing that will keep you swallowing is your own incentive - this is hard. If you get an appointment with a speech therapist, pay attention to the exercises and see how often you can go back for consultation.

The bad news is that, as a light drinker, you may get significant nausea from the Cisplatin - heavy drinkers/smokers seem to be immune to the worst of it. Take every drug they recommend and take it as close to exactly on the schedule they give you - no matter how well you feel! (Seriously, if it's a 4x/day pill, and you sleep more than 6 hours a night, set your alarm for the morning dose and keep it by your bed - don't just take it when you get up 2 hours later.) Report any nausea as soon as you feel it, if the drugs don't handle it. There are a lot in the toolkit - some make you spacey and some cause constipation, but those can be dealt with.

Yes to exercise - Cisplatin can cause blood clots and so you want to both keep your circulation going and be enough in touch with your muscles that you recognize a pain in your leg is not just a stiff muscle. Many trainers now are cancer survivers - see if you can find one to work with; if you don't go that far, try to at least get daily walks in.

Be prepared for taking longer to recover than you think - this one really shocked us. It is different for everyone and a lot depends on what side effects you develop (we got hammered: blot clots, low WBC and then weeks of vomiting - if he hadn't been in spectacular shape beforehand, he would have spent weeks in the hospital). Shoot for the best possible outcome, but be ready with plan B, in case you are not ready in March.

Keeping accurate records is important - we found that our array of doctors did not always have the latest information on the drugs my husband was taking. Keep track of the drugs; keep track of what you eat; keep track of any symptoms or odd feelings you notice. I used an excel spreadsheet as his drugs changed often. This was how we identified which drugs helped my husband avoid radiation-induced nausea and also helped us plan our day, once we identified down times. It also helped us identify the drug that got us out of the weeks of vomiting, as we'd recorded the one day he was able to eat - they'd given him one dose of a drug that was then nixed by another doctor. We dug out the records and they allowed us to try that drug again - it worked.

About Caphosol - it really seemed to work wonders for the radiation sores in my husband's mouth - he had almost none and they claim his mouth looks very healthy. I don't think our insurance covered it either, but we were told it would be worth it and it seems to have been.

Lastly, we had a huge group of folks wanting to know how my husband was doing. We used caringbridge.org to keep people posted - it helped a lot (this was suggested by a school counselor, as I am a teacher, and we thought it would help my students cope - it turned out to also really help relatives cope). It cuts down on having to send out constant email updates.

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

I seem to be following my wife on each of these. But my problem and treatment sound much like yours (see other chemo options discussion as well). 42 planned RT and 3 planned chemos (ultimately only 2) for primary tonsil (removed) and then one lymph node.

One significant difference is that I resisted right to the end having a PEG. Perhaps if it had gone right in, we would have done it. but we somehow survived and, I am convinced that by insisting on chewing and swallowing all the way throughout, I am able to do it now. If I had left this to the tube, I think I would have just given up.

For exercise, I was still playing hockey three weeks into the treatment and, had I not run into blood clots, would have managed another week or so. Being in great shape saved me, I believe, though I have eaten away much of this muscle since. I am now 35 lbs down but beginning to exercise again even if only 20 mins on treadmills and light stretching-type weight lifting. I see a trainer tomorrow.

Fortunately, BC/BS does basically pay for Caphosol so I am only out about $30 per month. I don't know if it makes a difference having no counterfactual but things are improving. There are also other similar products, one of which we have a sample of. Once I try it I can report. I think it is worth having some kind of mouthwash/saliva promoter/ sore preventer.

I, unfortunately, have to pretend to work some and will be returning FT in a couple of weeks. Enjoy life, don't get down, and depend on your support people. They care.
Doug

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Do you know if they checked to see if it was HPV derived? Not that it matters. But I mention this only as you said you never smoked, same with me. HPV does tend to respond well to the Chemo also.

I was diagnosed in January 2009, STG III SCC Tonsil Cancer HPV+, I was diagnosed with primary tonsil cancer and secondary of one lymph node involved.

Tonsils were removed, biopsy, and later determined through additional biopsy, HPV+. Power port ws installed, all chemo was infused.

I started first with three 3 week cycles (9 weeks total) of Cisplatin, Taxotere, and 5-FU on Mondays. The 5-FU was administered via a pump 24/7 ending on Thursday night. The following two weeks were recover time.

After that nine weeks, I started seven weeks of Carboplatin (lesser version of Cisplatin) every Monday and 35 daily doses of Radiation. Each day before the radiation I was injected in my abdomen with Amifostine to help retain some salivary function (not sure how well that actually worked).

I am now 18 months post treatment, clean, clear and NED.

As for how you'll respond, I'll give you the standard answer..."Everyone is Different"...

More than likely around the 3 - 4 week of chemo/rads until about 4 weeks post. Your body will be taking such a beating, and on minimal calorie intake. It'll be hard to maintain much of any physical exercise. But it's possible, I road a bike a few miles most days and walked some. But there were days where I was just too fatigued.

Looking forward to your progress and communication.

You'll find tons of expereinced survivors and a great bunch of people here.

Best,
John

Dale_G's picture
Dale_G
Posts: 18
Joined: Dec 2010

Yes, HPV+.

My tonsils were removed 50 years ago.

Thanks all,
Dale

meinken's picture
meinken
Posts: 38
Joined: Jan 2010

I have Aetna insurance too, and they would not foot the bill for it. However, I did pay the 800 for it, and honestly, it was a worthwhile investment for me. I could not use the magic mouthwash because it made me gag, so I don't know if it was better or worse. But it helped me and I'd buy it again if I had to, and hoping I never have to.

rush1958's picture
rush1958
Posts: 201
Joined: Jul 2010

Dale,

Sorry to see you joined the club, but it's a great group of folks to be around.

I was suprised to see Aetna didn't cover your Caphosol. I have Aetna and they really didn't blink at anything.

I ended up donating my Caphosol. I didn't think it was any better than baking soda and water. In fact, I thought the baking soda was better in that it was easier for me to use. Moreover, I never had a mouth sore or any type of oral problem throughout treatment. Everybody is different, but I'm sold on baking soda.

Rush

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

But I am glad that you found this group of great people with invaluable information and neverending support.

I found a swollen lymph node on my left side in october of '08. Turned out I had SCC unknown primary stage iv. I had a modified neck dissection, my salivary gland and 23 lymph nodes were taken. Three were positive. I am also a Fanconi Anemia patient which is why I ended up with my cancer. Due to the toxicity of chemo for FA patients I refused that modality. I did have 30 rads and that was pretty much about my demise there for a while. The odds of survival for an FA Patient surviving rads are pretty bad.

The side effects for individuals seems to vary in intensity from person to person. One of my biggest problems was my mouth during rads. It was just destroyed. I tried to eat for as long as I could, but it became impossible. I am glad that I decided to have a peg in place. I had mouth sores and severe bleeding for months after rads. My RO said he had never seen any ones mouth so bad. Yes, you must try to keep swallowing, but there may come a time when you just cannot. Only you will know that. There is a chance of permanent damage and not being able to swallow again, or it being a really long haul to getting to eat food again. I have radiation damage and a stricture up very high. Been stretched out twice. So, yes. Keep trying to swallow. Praying that you will have manageable side effects. You can get through this. Best of luck to you.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

It's a pretty exclusive club you've joined, brother.
Me, I think about Groucho's famous remark that he wouldn't want to join a club that would have him as a member.
All that aside, my insurance paid for Caphosol -- and it didn't do diddly squat for me. I made out fine without it, and at the end of treatment I threw away several hundred dollars worth of the stuff.
As always, your mileage my vary ...

--Jim in Delaware

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

Dale,

As everyone has said, welcome to our little group, sorry you needed to join. Great group of people here, whether we are supporting one another, giving each other information we've learned, celebrating NED (No Evidence of Disease) or venting about our issues.

I had the caphosol and didn't use it much. Ended up giving it away to someone here on the site. As for excercise, keep it up til you can't do it. And then do as much asyou can even if it's a short walk. Being in as good as shape as you can when treatment starts will do nothing but help.

Good luck and keep posting.

Positive thoughts!

Greg

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Welcome, but sorry you find yourself among us. I was also PEG and Power Port before any of the C&R fun times. Must always keep the importance of Nutrition as the high-priority, along with the large single fact- that you're gonna survive this thing, and life beyond the tunnel of treatment will be physically okay, as is the case with all of us. We all recognize the importance of being Positive thru it all, and trust you will try to find your own way to keep such a frame of mind going. Your med team will help you all they can, but you have to let them know how you're handling it for them to know what help to give you. H&N treatment is a time to be "real" with the Drs. and Nurses, Dale. Trust me. S0...

Yep, it's just about time to roll-up the shirtsleeves, and find a mean-kinda grin to wear for the memorable times down this road. You're gonna survive this C thing, Dale- so get used-to it!

Believe

kcass

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

What everyone else here said...

Had the same story as you, base of tongue, except my lymph nodes on both sides were affected. Cisplatin and 38 rads. Going great, six months out from treatment.

I found the water/salt/baking soda mix to be as effective or more so than the caphosol. My mix was 1 cup water/1 tsp salt/1 tsp baking soda.

Used a PEG for the last four weeks of treatment and for four weeks after. But, I continuously sipped water and drank green teas. Haven't lost any swallow function.

Deb

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

I had 35 radiation treatments and 3 rounds of citsplatin for a scc on my hypopharyax. Couldn't remove because of placement. Non-smoker, light drinker - it was pretty tough.
6 months out of treatment, today. Doing well. I learn new things daily on this site.

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

Hi Dale,

Many of us have benefited by taking the L Glutamine powder. It helps you preserve muscle tissue during weight loss stress and also helps the mucosa heal. It is also a good way to keep the mouth and swallowing mechanism working as you can sip water with the LG Powder with no pain so all around it is a winner (You need to keep swallowing all through treatment). The earlier you start the better.

I used a non-dairy supplement as feed for my PEG all the way through if you are interested in plant based nutrition - see my 'Expressions' page for details. Micktissue also used a vege supplement thru the PEG so he can chime in with details if you need.

Hang tough. roughish ride ahead maybe but doable. 14 months out and fighting fit.

Scam

rozaroo
Posts: 667
Joined: Apr 2010

Wellcome to the board. My diagnosis was pretty much the same as yours & I am 11 month's post treatment & doing fine. I had my tube put in straight away but did not use it untill ending radiation therapy. I made sure to eat everthing I could & did not loose any weight
at all. I actually gained 30 lbs & that rarely happens. Even while on the tube I drank water
& fruit juice or flat ginerale. Even tiny sips of water on the bad day's. Keep track of every feeding & all of your meds. We were dilligent with that.I was fortunate to have my
hubby who kept me on a schedule for feeding's & med's. We would bring that ledger to all appointment's.I find that we are all different & that some of us have a harder time than other's. I was lucky as my Oncologist mentioned that I was not the norm. I simply did what
I was told & followed the rules. Made it easier for me. I had put my gym membership on hold but still went berry picking in the summer & worked with hubby on a house we were finishing. I have now lost 8 lbs & am going back to the gym in the New Year.
I made the baking soda, salt water soloution for my mouth sores & that worked for me. I would rinse several times a day & that helped quite a bit. I still do it. & follow with a rinse of Biotene.I developed thrush once & then started brushing my tongue & still do.
I am sure you will do well. However, take each day as it comes & don't push yourself. If you find you are tired then rest. This is a long slow process but you will find your own way in which to deal with it. We are all here to help in any way we can. I wish you well
in your treatment & recovery.
God Bless
Roz

scottied's picture
scottied
Posts: 37
Joined: Nov 2010

The only other things i would add would be my doctors told me the baking soda salt mixture was just as good so thats what i used. I was told by an owner of a GNC store after my treatment that had I taken Glutamine through treatment i probably wouldnt have lost any muscle mass. I also used a high carbohydrate protein powder to gain weight back (i lost 35lbs). Drs and nurses both told me that the people who fair best generally seem to be the people who take in their fluids ( If i remember right 3 liters a day). I put links to where i got the Glutamine and the High carb powder under another post ( Post-treatment Feeding ) If your interested.
ps: I tried to stay away from using the feeding tube as long as possible (being to proud or hard headed, I dont know which - probably both) But If I had started using it early on to take in my calories, my weight loss probably wouldnt have been as severe. You can still swallow all you want to while also using the feeding tube - dont think once you start using it that you will never use your throat muscles again! I used the feeding tube exclusively for 4 weeks yet still sipped and swallowed things.

I hope this helps, good luck with your treatment and no matter how bad it gets, It does get better!

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Dale. Sorry you're here, glad you found us. Not much to add to what's already been said. Exercise is key as is nutrition. I have also used a vegan meal replacement in smoothie form and will use it in my PEG if needed, but not needed so far after 5 weeks of rads. If you're a reader, I recommend a couple good ones: China Study, Beating Cancer with Nutrition, Anti-cancer and a nice local hiking guide. Time in nature works wonders. I use the Caphosol and have a nice healthy mouth so far. I've had a couple sores but they go away fast. I do recommend it if you can afford it. Now is not the time to be thrifty with yourself. Be as good to yourself as you can. Praying for peace and strength for you on this new journey.

Bob

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

(I was one of the ones filtered for spam by mistake - they asked me to try a post and see if it gets through now - if anyone else is having this issue, contact the site administrator):

One issue with the baking soda is that it raises the pH of your mouth, whereas Caphosol is close to neutral and buffered to help maintain a good pH balance of your mouth. Thrush loves a high pH, so this is an important consideration. The calcium and phosphate ions are also thought to be used by the cells for repair work.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

That's the mixture they had me use... I never had thrush, but like you all know, we are all different...

John

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Now that you have to be in the club, let me say this is a wonderful club. There is support and knowledge here that would take a novel to write about. Welcome!

I would try with other options mentioned before this post. If all else fails you can always purchase later on in treatment. I used Bioteen Mouth Wash, but then back 14 plus years ago they did not have many options. It helped me somewhat.

I suggest you do as much as your body allows you to do. I believe your best to try and keep going. If your tired listen to your body and rest. No matter how bad it gets the two most important things are to maintain a positive mental attitude which I feel you already have and the other would be to force yourself to swallow many times a day. Since you have the tube many depend on it so much they loose the auto mussels for swallowing, do yourself a huge favor and keep swallowing.

Good luck!

John

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Dale, welcome to the group.

I am 8 weeks post from Tonsill (R) w/ Mets to the nodes in neck. (Very agressive)

I opted for Surgery, 30 Rad doses and 3 Cisplatins. Man did this regimen kick my $#ss.
As most have posted here, just about everyone reacts differently to treatment. I have had mouth sores, thrush, staph infection around G tube site, nausea, vomiting ETC. The biggest thing I am fighting now is severe fatigue and I am always cold, and seem to sweat profusely from the top of my head, although I never spike a temp. I initially figured since I was in great physical shape, I was a regular powerlifter, played some ice hockey and even some lacrosse with my boys that I would coast through all of this. I started at 240 lbs. and currently weight in at 180 +/- lbs.

Plan for the worst case, and just fight the good fight oone day at a time. You will come out the other side just fine.

BEST

Mike

scottied's picture
scottied
Posts: 37
Joined: Nov 2010

Mike,
just wanted to let you know when i finished treatments I would sweat like crazy, had to change T-shirt I was sleeping in 3 times a night (they were soaked). Come to find out it was the painkillers I was on causing the sweating, after I came off of them everything was fine. As for the cold thing, I was cold natured before and now its twice as bad, that part doesnt seem to be getting much better and Im close to a year out of treatment.

Scott

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Like everyone else has said, I hate to welcome you to this club but you have come to the right place for information and advise.

If you have read many of the posts you have probably read a hundred times that everyone responds differently to treatment and their side effects vary. We can all tell you what happened to us but we can not predict what your side effects will be. Hopefully you will be one of the lucky ones with minimal side effects.

I can't advise you on the Caphosol as I did not need it as I never had any problem with mouth sores or thrush. I used the baking soda, salt and water solution throughout my entire treatment and still use it daily with no problems. My suggestion would be not to buy it until you find out you need it. It's just my opinion but that's a lot of money if you end up not needing it.

I received Cisplatin two days per week in a three week cycle and daily radiation for 35 treatments. The Cisplatin is hard on your body but definitely worth it, I was fighting two different cancers at the same time and am now 15 months post treatment and still in remission.

My doctors advised me to try to go for a short walk each day not only for the exercise but for the fresh air and sunshine. Unfortunately I was so fatigued that this was not possible.

Hope all goes well for you.
Glenna

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Welcome to out home and family my friend

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

My insurance would only cover part of the Caphosol, but the maker of it had a card that would take up to $50 off per month. It worked wonders for me. I could increase the amount when I had more sores and it felt like they healed up faster than I expected. I would even wake up in the middle of the night and use it, then go back to bed. when I used it correctly it worked great...when I felt like I was doing better and trying to save money so I wouldn't have to buy more...well more sores would form. If you do get it, use the amount you need...you don't have to wait for your doctor to up the amount to up to 10 x/ day...I thought I had to wait and I developed sores that I feel wouldn't have been there if I had upped the amount.

I was advised by my doctors to do as much as I felt I could each day but to plan on needing naps to help heal. I would get up, get my kids ready for school, go to the doctor for my rad treatment, then come home and nap until they got home from school. they would play with me for an hour, then I would go back to bed until dinner time. then I would stay awake another three hours until I had them in bed. some days were rougher than others, where I would sleep all day and night (except for the dr appointments), but on the weekends I would have about half a day on sunday where I would feel almost normal.

I was also told to exercise as much as possible before treatments in order to help me heal faster (gets more blood flowing). It has seemed to work. I am 3 weeks post radiation (on my hard and soft palate, sinuses, and they couldn't block out a section of my tongue), at 75% normal activity level, 50% normal food consumption, and almost no pain (most days).

mentally...well it depends on how you look at it. I didn't get very depressed...i just told myself I couldn't afford to have my kids see me that way. I wanted to set a great example for them, so I wrote in personal journals how I was feeling. everyone is different, but I wish you the best

sorry you had to join this group, but I am happy that you have found us. best of luck with your treatments

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

Dale, My diagnosis was the same as yours, BOT stage 4. I just wanted to chime in on a couple of points.

I went with the baking soda/salt solution to gargle numerous times each day. Also, per Scam's recommendation, I used the L-Glutamine as a swish and swallow. It worked for me.

I say get into the moderate exercise as soon as you can. I found research on the internet that showed cancer patients who had daily moderate exercise responded better to treatment and experienced fewer and less severe side effects when compared to control groups that followed a bed rest/no exercise program. Moderate exercise in this study was a 20-30 minute walk. I started out with 45 minute walks and by the end of treatment I was down to 20, maybe 25 minutes. I was one of the more fortunate ones here in that I came through treatment pretty well and recovery was gone well also. I believe the daily exercise certainly helped in this regard. And just getting out of the house and into the sunshine for a bit certainly helps mentally. Cheers

Jimbo

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