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Radiation begins next week (scary times!) #198250
05-03-2019 06:22 PM
05-03-2019 06:22 PM
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Posts: 17
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TongueCancerBeGone Offline OP
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TongueCancerBeGone  Offline OP
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(Squamous cell carcinoma HPV+ Base of Tongue and 1 lymph-node, surgery 6 weeks ago)

Here we go... My radiation starts next week: 6 weeks, 30 sessions under the mask. I am the only person I've ever personally known to have gone through this - so I am thankful this community is here. And, I have lots of questions.

I am told that, because my tongue and neck surgeries went well, I will be given a "low dose" radiation treatment - However, dosing numbers like "60 to 65 Gy" don't sound low to me. Does anybody reading this have a comment on "Gy's" for oral cancer?

My doc has me titrating up the gabapentin in advance (on my way up to NINE pills a day!). Dear readers, have any of you had experience with gabapentin? Did it help?

What I've learned in advance of my treatment: Fight with all my might to stay hydrated, don't hesitate to take the pain meds (and the laxatives), use the magic mouthwash, expect that healing will be slow. Which pain meds work best? What else should I do? What else should I ask the docs for?

That's what I've got so far. I appreciate any additional words of advice from any of you that has been through this before.

I am scared my teeth going to fall out.

Thank you in advance for your words of wisdom!

-Mark






Mark
Non-Smoker, HPV+ Squamous cell carcinoma tongue and in 1 lymph node neck, 4.8 centimeters. Surgically removed March 2019. 30 radiation treatments starting May 2019
Re: Radiation begins next week (scary times!) [Re: TongueCancerBeGone] #198251
05-03-2019 07:12 PM
05-03-2019 07:12 PM
Joined: Mar 2018
Posts: 57
Maine
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Vicky1 Offline
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Vicky1  Offline
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Joined: Mar 2018
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Maine
Hi Mark! My dad, whose name happens to be Mark, has SSC in his mouth. He had radiation last year, following a mandiblectomy and fibular free flap reconstruction and neck dissection. He had 30 treatments, with a total dose of 30 Gy. I think the dose is pretty specific to the type, stage and location of the cancer as well as other treatments you're having. Dad was also to receive chemo, which the doctors said would sensitize his cancer cells to the radiation, but he only did 1 cycle because he couldn't tolerate the side effects. He took gabapentin, and reported that it worked well for his pain, but pain is pretty unique to the individual and some things work for some people which don't work for others. He also had oxycodone and was offered a fentyl patch toward the end of his treatment. His first 9 treatments were not a problem, but number 10 was where he started to feel the effects. He did it without a feeding tube, and was able to eat sardines in oil and glucerna shakes the whole time. He got IV fluids for the first and second weeks.

If you have any problems with your teeth now, get them fixed before you start radiation. Dad had a tooth fall out after radiation and got a really nasty infection (which might have been a blessing because they discovered his recurrence before it was visible on scans while they were cleaning out the infection surgically). We were told that he could have had the bone in his jaw die from the infection, and that should he need dental work in the future, they would recommend he does HBO treatments first to lessen the odds of that happening. My dad did not have his dental work done, and his radiation oncologist advised us to get started on radiation without dental clearance since the time between surgery and treatment was longer than she would prefer, and did not explain this to us. Dad chewed tobacco for more than 50 years, so he had awful oral health to begin with, which is why I think he's had such trouble with his teeth. Other folks on here got flouride trays made and used them to keep their teeth strong. I'll let them tell you about that.

You got this, Mark. Stay strong. Have someone drive you to treatments so you can rest.


Last edited by Vicky1; 05-03-2019 07:15 PM.

My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Radiation begins next week (scary times!) [Re: TongueCancerBeGone] #198261
05-04-2019 11:49 AM
05-04-2019 11:49 AM
Joined: Jun 2007
Posts: 10,364
PA
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ChristineB Offline
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ChristineB  Offline
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Joined: Jun 2007
Posts: 10,364
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Welcome to OCF, Mark! Im so glad you found our site to help you get thru your upcoming treatments and recovery. It can be a long, difficult road for some while others sail right thru with barely noticing any side effects.

A couple very important things you need to be aware of when just starting. If you are given chemo, specifically cisplatin make sure you pay attention to your hearing. If you do not know what kind of chemo you are being given, ask the nurse for its name before she gives it to you. If you notice even a slight hearing change report it to your doc immediately. Do NOT get another dose of cisplatin if you notice any (even minor) change in your hearing. Cisplatin is known to cause high frequency permanent hearing loss. Also if you can, if you are getting chemo hopefully its given weekly instead of the 3 "big bag" method.

Your intake is one of the biggest controllable items that plays a major role in how easy you go thru everything. Every single day from now thru when you hit your first year after finishing rads you need to take in at the very least 2500 calories and 48-64 oz of water. On chemo days drink extra to help flush chemo out of your system to try avoiding having kidney issues. It sounds like ALOT of calories but its not! Your body is burning up calories at a greatly increased rate trying to fight the cancer and rebuild the damage cancer (and soon treatments) have done. Even days where you think to yourself... I cant hit 2500, getting 1500 today will be ok.... NOPE!!! The playing catch up turns into a never ending downward spiral where every single day patients think they will do better "tomorrow". Their "tomorrow" never comes! Its just not possible when you are feeling progressively worse as treatments continue to pull yourself out of that downward spiral. I went thru it and ended up being hospitalized twice for malnutrition and dehydration. I felt soooo bad I actually thought I was in the first stages of dying which of course I wasnt, I was just dehydrated and in a severely weakened state. I cant stress enough how vitally important your intake is!!! Calories 2500 daily or more are more important at this point than a perfectly balanced diet.

If your throat becomes sore and you have trouble swallowing make sure you speak up and tell your doc. Any ideas about trying different things ask your doc first. Some patients need a feeding tube, some do not and theres some who get a temporary nasal tube as they're close to their "crawling out of the tunnel" point where they finally begin to feel better. Roughly 10% of oral cancer (OC) patients going thru rads will sail right thru with only barely noticing any side effects. The patients who do so well are those who pay the most attention and do the best with their daily intake. If you can take in 3000 or even 3500 calories its perfectly ok, that will only help make everything a little easier for you. When the going gets tough, try drinking your calories with shakes and smoothies.

As far as greys go (thats what we call radiation doses around here), I was given 72 which I was told is my lifetime max. Over the years, Ive heard this echoed many times from many others here. But, in certain cases OC patients can go thru additional rounds of rads. Its done on a case by case basis, not every patient can have additional rads.

As far as losing teeth, have you been to your dentist? You should have gotten a mold made for fluoride trays of your teeth you can use to protect your teeth while going thru rads. Any questionable teeth that arent in the best shape need to be removed prior to starting rads. You do NOT want to push it off until after rads!!! Rads are very hard on the teeth. If you havent already started, you will need to begin brushing and flossing after every meal and pay careful attention to your teeth, seeing the dentist more often as in 2x a year. I really hope you already have your fluoride trays and gel to use as not using it will probably mean you may lose teeth down the road. Also using a waterpik on its lowest setting with warm water and some mouthwash at least daily will reach places a toothbrush and floss can not.

Im sure there are a million more things I can pass along but I probably overwhelmed you with so much info. Sorry about that!!!

Best wishes next week!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Radiation begins next week (scary times!) [Re: TongueCancerBeGone] #198263
05-04-2019 03:14 PM
05-04-2019 03:14 PM
Joined: May 2019
Posts: 17
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TongueCancerBeGone Offline OP
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TongueCancerBeGone  Offline OP
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Joined: May 2019
Posts: 17
Thank you Vicky and Christine -

You words of advice and encouragement mean a lot to me. Fortunately I am not being recommended for chemo, just the radiation. I believe this decision was made because the margins on my tongue were good, and the cancer was only found in the initial presenting lymph node (25 were removed from the area). My doctor's say that while chemo may help the radiation it does not cure oral cancer. They are not recommending the chemo and I am not volunteering for it wink. I hope that I am making the right choice.

I've been told to gain as much weight as possible before the radiation starts. I want to drink milkshakes all day long to fatten up, but I am so concerned about the sugar - and I haven't figure out which is better for me yet: Take a short cut to weight gain by taking in tons of ice cream, or eat less sugar but not gain the weigh as fast. I guess I'll need to find less interesting substitutes for ice cream, such as whole fat yogurt - but nothing will get me there faster than milkshakes!

Thank you both again, very much, for replying here.

-Mark


Mark
Non-Smoker, HPV+ Squamous cell carcinoma tongue and in 1 lymph node neck, 4.8 centimeters. Surgically removed March 2019. 30 radiation treatments starting May 2019
Re: Radiation begins next week (scary times!) [Re: TongueCancerBeGone] #198272
05-06-2019 05:01 AM
05-06-2019 05:01 AM
Joined: May 2019
Posts: 3
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Timothy L Parks Offline
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Timothy L Parks  Offline
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Joined: May 2019
Posts: 3
Mark,

How long did you neck remain swollen after your surgery? I am on week today since surgery. And yes looking at radiation.

Thanks Timothy


Timothy L Parks
Re: Radiation begins next week (scary times!) [Re: TongueCancerBeGone] #198274
05-06-2019 07:25 AM
05-06-2019 07:25 AM
Joined: Jul 2012
Posts: 3,224
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,224
NYC
Hi Mark,

Yes, i’ve heard, and had, lower radiation dosage at times, usually after surgery or multiple rounds of radiation. The usual is around 72Gy’s, but yours is being lowered to 60-65Gy. It’s not lowered that much, but it’s lower than what’s usually given. Plus, in order to kill squamous cell carcinoma it’s said the Gy’s have to be higher than 50Gy, but it’s really more on the 60’s as I read and was told.

I’ve had 5 different radiation treatments through the years with about 210gy’s

I take gabapentin daily for neurapathy. I dont take anywhere near what i’m Prescribed because the way it makes me feel....tired, unbalanced, so I just take it at night. Some doctors understand, but my prescribing doctor, a neurologist, always wants me to increase my dosage, so I don’t see her anymore cause i would be a zombie. That’s me, but others it may be ok.

For pain during treatment I took oxycodond, and radiation oncologist added Fetynal, and increased dosage as pain persisted.

Be careful of your nutrition, but don’t starve. Excess nutrition can feed cancer. Maybe see the hospital dietician or nutritionist to help.

Good luck with everything


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Radiation begins next week (scary times!) [Re: TongueCancerBeGone] #198275
05-06-2019 09:32 AM
05-06-2019 09:32 AM
Joined: Jun 2013
Posts: 337
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
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Joined: Jun 2013
Posts: 337
alabama
Wow, I'm impressed gabapentin works for so many folks here! And glad. I'm one it doesn't work for (nasty side effects) ... but if you can get that in your system, and other meds as needed, you will be ahead of the game. And ASK if you are in pain. I was stupid and toughed it out, not even realizing that's what I was doing ... I wasn't informed that I had more options for pain relief. (I actually got a comment, "We wondered how long you were going to go ... most patients don't get this far!" Felt like they had a betting pool, LOL. If I'd known THAT, I'd have put money in too!)

As for the milkshakes ... if you LIKE milkshakes, drink them. If you don't, find a different source. Your taste is going to change, at least for the short term (which could be as much as two years for some parts of taste, and some might be permanent), so right now -- with official orders to Gain Weight -- you have license to eat whatever you like, and you should do it. Well, not burning stuff that aggravates the surgical areas ... so hot peppers are probably off the list, alas. But if you're a Golden Girls fan, cue up the re-runs and the cheesecake. (We did!) If you like Dairy Queen Blizzards, get them. (With peanut butter ... that's protein, right?) If you happen to adore salads with special dressings, then go that route in case your favorite dressing changes taste on you for a time after. Seriously. Get that big juicy steak if that's your thing, or eat the whole pound of bacon and let your kids stare at you looking pathetic. (Oh, wait, that was me...) Yes, you want vitamins and nutritional booster drinks for the calories and the balance, too ... but please please please enjoy your favorites as much as your stomach and budget can handle. You'll be glad of this.

You mentioned teeth, and someone told you about the mouthguard, if I'm not mixing up my threads here. USE IT. I didn't, not properly, and I paid for that. It might have happened anyway, but it wouldn't have happened as soon. It was more a depression (who cares, everything is miserable anyway) kind of thing with me. If you get to THAT point, there's help for that too. Starting here, where we will always cheer you on.

You got this! ((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Radiation begins next week (scary times!) [Re: KristenS] #198288
05-07-2019 10:21 AM
05-07-2019 10:21 AM
Joined: Sep 2018
Posts: 69
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VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
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Joined: Sep 2018
Posts: 69
Hi Mark!

I also had tongue cancer. Lost a fourth of my tongue due to my squamous cell carcinoma and also had a left neck dissection. No nodes found positive and clean margins (after second surgery) but since they found three stray cells outside of the tumor I also was recommended for radiation.

It's weird but with tongue cancer like yours and mine, they don't recommend chemo. My doctors have said there hasn't been added benefit found so I also just had to due radiation only.

It's so hard early on to tell you what to do to prepare, since we all handle it differently. Myself, I got through very easily. I drove myself every day, never had too much trouble throughout. I did have the inside of my mouth 'slough' off at some point, I also had a few sores on the inside of my cheeks but it all healed quick. Fatigue sets in but I was off work so I napped when I wanted. Losing taste is probably the worst part, and the change in saliva. You will need to eat whatever you can get down to maintain your weight because they FREAK OUT if you lose weight. I kept ensures and boost and those things around but really I got by on scrambled eggs, soups and hot cereal for the most part. I also drank a lot of those refrigerated latte and frappe drinks from like Starbucks haha! They weren't the healthiest or anything but I figured if I enjoyed them then I'm going to drink them!

Myself, I don't like gabapentin. They used oxycodone for me and when pain increased we added morphine. As pain decreased, I slowed down on morphine until off completely then was left just on oxycodone. I am still on it because radiation damaged a nerve in my throat so until it is completely healed, I have to have something to manage the pain. My Rad Onc. put me on gabapentin to see about switching it out for the oxycodone, but really oxy doesn't have any ill side effects for me so I don't care to switch. My Rad Onc. was fine with this. So now I'm stuck trying to wean off of gabapentin. Not fun. Stomachaches galore when I try to step down too fast. I regret starting it at all to be honest. In fairness, when I eventually wean all the way off oxycodone it will be a process like this also. I would of just rather gone through one and not two weaning experiences.

Good Luck!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Radiation begins next week (scary times!) [Re: Timothy L Parks] #198299
05-07-2019 11:09 PM
05-07-2019 11:09 PM
Joined: May 2019
Posts: 17
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TongueCancerBeGone Offline OP
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TongueCancerBeGone  Offline OP
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Joined: May 2019
Posts: 17
Hi Timothy -
In answer to your question "How long did you neck remain swollen after your surgery?" - much longer than I thought it would! The healing takes time. I have experienced this and heard from several people. Myneck was swollen in some form or another for over a month. And some part of neck, right near the middle, still feels a bit numb today. But all and all I am feeling A LOT better than I was a month ago - and you will be too. For me they delayed the radiation until about 6 weeks after the surgery, to give my head and tongue time to heal. And I am happy that I have chosen to do the radiation, I want to put everything I can on my side. I wish you the very best of luck Timothy. You've got this! - Mark


Mark
Non-Smoker, HPV+ Squamous cell carcinoma tongue and in 1 lymph node neck, 4.8 centimeters. Surgically removed March 2019. 30 radiation treatments starting May 2019
Re: Radiation begins next week (scary times!) [Re: VirgoMomof3Boys] #198300
05-07-2019 11:18 PM
05-07-2019 11:18 PM
Joined: May 2019
Posts: 17
T
TongueCancerBeGone Offline OP
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TongueCancerBeGone  Offline OP
Member
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Joined: May 2019
Posts: 17
Thank you so much Laura and Kristen for your encouraging words! I really appreciate your interest in, and responses to, my posts.

I had my first radiation treatment today and, wow, is that mask weird! I had to close my eyes and talk myself down for the claustrophobia that set in. For me, not panicking and ripping that mask off was definitely a mind over irrational fear situation.

Can anybody suggest a good cream to put over the skin that was irradiated today? Should it be a moisturizer or something else?

Thank you,
Mark


Mark
Non-Smoker, HPV+ Squamous cell carcinoma tongue and in 1 lymph node neck, 4.8 centimeters. Surgically removed March 2019. 30 radiation treatments starting May 2019
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