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Radiation check-in at the end of each week #198363
05-20-2019 05:38 PM
05-20-2019 05:38 PM
Joined: May 2019
Posts: 17
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TongueCancerBeGone Offline OP
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TongueCancerBeGone  Offline OP
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Base of tongue cancer, also removed from one lymph node 4.8 cm. 30 radiation treatments. One every weekday for six straight weeks.

CHECKING IN AFTER COMPLETION OF WEEK 2 (10 radiation treatments)

I will call this this end-of-week-two report "Winter is Coming" - At end of week two this is what I am experiencing:

* A bit of pain on the base of my tongue - The 9 Gabapentin pills I take every day may be helping with the pain (no other pain killers being taken), but I wouldn't know how to know if it really is or not
* Very little pain in my throat
* Pain on my gum line, but most likely due to the dental mouth guard pushing into my gums (that does not stop radiation, so I am not even sure why I am using it)
* Despite what my doctors might think Lidocaine Viscous does not reach base of tongue and does not work for pain back there
* No issues chewing
* No issues swallowing
* Lost ability to taste most things sometime during week 2 - chicken and shrimp tastes like cardboard
* One tooth aches, not sure why
* Still kind of freak out inside my head every time the mask is lowered over my face (especially as I hear those 8 bolts click my head into place)
* Mask still feels too tight and leaves marks on my face (they are barely letting me catch a break there)
* Primary radiation therapist is still not very nice (think "Nurse Ratched")
* I feel a bit more fatigued but cannot tell if that is the Gabapentin or the radiation
* Headaches most every day, not sure why (Gabapentin or radiation?)
* Just starting to have to clear my throat
* Nauseous after the 9th treatment, but that was the only one, so not sure why
* I have this new "fascination" on how a person has died. Lately, EVERYTIME I here about a famous (or semi-famous) person dying early I find myself Googling "How did that person die?".

Bottom line: I KNOW that something is coming, something kind of big - how i know this is that is I can feel the pain getting worse, day by day, in my tongue. I have no doubt that there is a big sore brewing there, and if this is how it feels now (a 2 on the 1 to 10 pain scale), I cannot imagine how it feels after 4 more weeks. Why did I call this summary "Winter is coming"? Because that growing pain in my tongue is a hint that things will get darker before they get light again.

So, that is my experience two weeks post radiation...


Last edited by TongueCancerBeGone; 05-20-2019 05:53 PM.

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 check-in at the end of each week [Re: TongueCancerBeGone] #198364
05-20-2019 06:51 PM
05-20-2019 06:51 PM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 345
alabama
((hugs))

You're hurting, that's for sure. ((hugs)) Wish I could make it better.

Gonna ask a question, because this is something I didn't find out till nearly the end of my treatment, and it would have saved some pain and, well, pain ... Do you have fillings? Those will cause radiation scatter, depending where they are. When I hit the point where I was crying in pain putting on the mouth guard (last couple weeks of treatment), they finally told me about this, and turns out there's some dental wax they can use to help cover those teeth which helps prevent some of the scatter (and thus some of the sores) and also it eases the fit of the guard a bit where it ouches. So ... that's something to ask about, and see if it's an option for you, especially if you do have fillings that could be causing extra issues.

(My nurses were nice ones, but they just didn't tell me stuff unless I asked ... and I didn't know to ask, of course, since I'd never done any of this before. Maybe my pain can be your gain.)

Another thing ... if you're having bad anxiety with the mask (and yes, that can be terrifying!) ... see if there's a low-level anxiety medicine you can take. I know my psychiatrist and I upped my anxiety medication for the duration of my treatment ... no questions asked. (He's good like that ... we both knew it was going to hit on a LOT of my anxiety issues, so we just upped my prescription amount that I could take as needed.) No need to add suffering on top of misery, if you can do something about it and this is an option that's okay to you. (Not everyone is okay with anxiety medicine, and that's fine ... but if you're willing to look into it, go ahead and ask. Worth a try. Worst thing it does is make you a bit sleepy, and since you need to rest to heal up, that's not a bad thing.)

Not sure on ideas for the rest of it, but lots of sympathy. And ((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 check-in at the end of each week [Re: TongueCancerBeGone] #198415
05-27-2019 08:27 AM
05-27-2019 08:27 AM
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 for your supportive words KristenS! Yes, multiple metal fillings are causing radiation to bounce all over my mouth, it is terrible!!

***** CHECK-IN ON RADIATION AFTER WEEK 3 ******* 15 of 30 radiation treatments done!

WOW! What a HUGE difference a week makes. This is what I am experiencing at the end of week 3 of radiation to my base of tongue and neck:

"Sunburn" on my neck
Ulcers in my mouth
Have not eaten solid foods in 4 days, only smooth blended foods.
No feeding tube yet, just pushing through the pain
Extremely sore throat - very sore - mostly notice it when I am swallowing
Very hard to swallow - so painful it takes me 20 minutes to swallow a glass of anything
Pain killers, 10MG Oxycodone do nothing to help the swallowing (pain is there with every swallow, even at height of pain killer protection). Going to ask the doctor of something else - what should I ask for?
Very, very rough cough begins the moment I raise a glass to my mouth - as if my cough is trying to repel the entry of the liquids into my mouth
Thick mucous and saliva
Fever!!! I don't know why but I've had a fever, peaking at 102.2, for 4 days. This fever makes me think that the sore throat may actually be strep throat, or that the coughing may actually be the flu.
Naturally the fever confounds everything as I am not sure what pain and other troubles may actually be related to some non-radiation disease that I coincidentally contracted (if at all)
I don't think I have radiation fatigue yet, but sleeping longer and napping more due to pain killers
Still taking 9 Gabapentin pills a day (don't know if they do anything at all)

So that is it. Three weeks down and it is starting to be a big struggle. Sadly, reading other posts this morning I feel as though I am having more difficulties than a lot of people were having at the end of week three. Week four radiation begins tomorrow...



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 check-in at the end of each week [Re: TongueCancerBeGone] #198416
05-27-2019 10:20 AM
05-27-2019 10:20 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Gabapentin is for nerve pain, when it's prescribed for pain. It might not be covering all you need, while still doing some. (I react badly to it, but I know others for whom it was a big help.) Near the end of my treatment I discovered I could have Fentanyl in patch form ... THAT was a big help. (I was already at the point of having other people drive me to treatments, so no worries about driving while on too many meds ...not sure if you are driving yourself or not, but this is a good time to call in favors if you haven't yet.)

Also, can't recall ... do you have any variation of the 'magic mouthwash' yet? Usually has lidocaine and other stuff, varies from place to place, but sometimes it's the only thing that makes swallowing bearable. If you don't have that, ask for it ASAP. We all get it and we all need it. It numbs the mouth and throat a bit. Wears off quickly if you're eating and swallowing at the same time (since its purpose is to coat and numb), but there's usually not a limit on how much you can use to get you through a meal. It's not perfect, but it does help.

Keep on keeping on! You're ahead of where I was, if it makes you feel better ... I was already having to rely on my PEG at that point, and the only reason I wasn't on more painkillers was because nobody told me I could have them ... I definitely would have been asking if I'd known there were options. We've had some real power warriors come through lately ... but all our journeys are different, so don't play the comparison game ... you do the best YOU that you can do, and the point is to get through it. Survival is the win, and that's your goal. It's nice if we get the easier path, but so long as we get there, the rest will pass eventually. ((hugs))

ETA: I see now where you say you do have the lidocaine ... hmm ... are you doing swish and spit, or are you swallowing? Can't recall if it's okay to try to swallow (been too long for me), but in your case, it might be worth a little bit just to see if it helps. This is a good one to call and ask a pharmacist ... they are good at knowing what different meds can and shouldn't do.

Last edited by KristenS; 05-27-2019 10:22 AM.

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 check-in at the end of each week [Re: TongueCancerBeGone] #198417
05-27-2019 12:40 PM
05-27-2019 12:40 PM
Joined: Jul 2012
Posts: 3,253
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,253
NYC
You’re doing good so far, especially without a tube!

The effects of radiation usually start occurring the 2nd week or 10 days after radiation started, so in some ways you’re already ahead of the game. It also depends on the radiation dosage, where radiated, one or both sides of the head, and how long Radiation is. The effects are worse at the end, and up to several weeks after radiation ended,,which could be the worse part.

You could have Thrush too in the mouth, which is very common, which can go down the esphogus, and further causing disseminated candiasis if not treated properly, which I had, and can be deadly. This you would need an antifungal medication to treat or antifungal IV if it becomes worse.

Gabapentin, for my neuropathy in legs and hand, dosage starts at 100mg, and more. I was taking 300mg pills 3x a day, but it makes me too tired, and now take only 100mg at night, which i’m better off according to my nephrologist for my kidneys, who wasn’t the prescriber. I believe you can get it or many prescriptions in liquid form.

“Gabapentin comes in many sizes including 100, 300, 400, 600, and 800 mg. The usual dose is 1800-5400 mg a day but the dose can vary depending on how well it works for you and your tolerance of the medication. If you find a dosage level that is satisfactory, there is no reason to increase the medication”

That comes to say to not drive under the influence of a narcotic or some other medications. I don’t know the legal limit, but their busting people all over here who are under the influence of a narcotic or other drugs, especially oxycodone and Fetynal. All one has to do is get into an accident, hate to say, or pulled over, and they may drug test you or make decision if denying that. Here, then you’re going away for the night at the precinct and then to central booking and then court to post bail the next day, and get future court date where you need a lawyer for maybe a few thousand. Central booking is not fun, and will be with all types of criminals!

Good luck with everything moving forward!


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 check-in at the end of each week [Re: TongueCancerBeGone] #198418
05-27-2019 01:30 PM
05-27-2019 01:30 PM
Joined: Oct 2012
Posts: 1,155
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,155
Toronto, Canada
Some magic mouthwash can be swallowed, some cannot. Do check with your doctor or pharmacist if you can swallow yours.

The fever may be an indication of an infection. When my husband was in treatment, we were told never to take a Tylenol for pain. It was explained to me that the Tylenol can reduce the fever and mask the infection. So, do tell your doctors about this. A radiation patient may have a slightly elevation body temperature, but it shouldn’t be significant.

Is there an after hours help line you can call at your hospital? I found that very helpful, especially when things happen late in the day or over the weekend. On the occasion that my husband developed deep vein thrombosis, she told me to get him to Emergency ASAP and not to wait for the morning.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Radiation check-in at the end of each week [Re: TongueCancerBeGone] #198488
06-10-2019 08:00 AM
06-10-2019 08:00 AM
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
**** END OF WEEK 4 OF RADIATION (20 out of 30 done) ****

Week 4 ended better than week 3. I think the reason my situation improved is due to the introduction of the 15MG of "long acting" morphine - which I am taking at 8am and 8pm every day. It is working great to help stabilize the pain. "The pain" is an extremely sore throat and sores on my tongue. The combination of the morphine (for a long lasting base) and oxycodone (for pain flair ups) seem to be holding off the pain.

I am only drinking my meals now. No more solid food for me until my mouth starts to heal. I find that I can take in liquids like a champ in the morning but, as the day goes on, it is harder and harder to drink without pain. So I consume the vast majority of my calories in the morning.

I have driven myself to all of my radiation appointments without an issue.

At the radiation treatments I use a q-tip to spread Lidocaine Viscous on my gums and tongue prior to putting in the mouth guard, this helps a lot with wearing the mouth guard when the mask is clamped into place.

Some radiation fatigue at the end of week 4 but not a lot. Only nauseous once the entire week, and that is when I had to double up on radiation doses on Friday (due to Monday having been a holiday).

So, bottom line, 2/3 of the way through radiation and I am feeling pretty good. No crazy, unmanageable, situations yet.


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 check-in at the end of each week [Re: TongueCancerBeGone] #198491
06-10-2019 11:55 AM
06-10-2019 11:55 AM
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
**** END OF WEEK 5 OF RADIATION (25 out of 30 done) ****

The most dramatic change in week 5 of oral radiation was that radiation fatigue finally hit me. I have been going to bed by 8pm, napping in the afternoon, and waking up feeling tired even after 12 hours of sleep. There has been a huge drop in my energy level between week 4 and week 5. Having said that, I am still able to drive myself to radiation treatment every afternoon, and I sit in my home office working most of the work day.

The other big change is that the redness on my neck (where they are shooting the radiation into me) has gone from a mild, sore, redness to the full on equivalent of a very bad sunburn. I mean ouch! It hurts like I've been sunburnt badly.

Other than that not too much has changed between weeks 4 and 5. I am still only drinking my meals (have not had a solid meal in a few weeks), but I have not lost a lot of weight (under 10 pounds since this entire thing started). I essentially hit a wall every afternoon and just want to sleep, so, I take in the vast majority of my calories in the morning (smoothies packed with greens, fruit, flax seed oil, almond milk, and protein powder) and by 4pm I've lost my appetite and mostly am just thinking about sleeping. Despite a very sore throat, I am still swallowing (liquids only) pretty well - which I am so lucky that I can, because I do not have a feeding tube. I try to guzzle my smoothie in the morning before the afternoon pain and fatigue set in.

It is worth noting that I've had a low-grade fever going on for almost 3 weeks now that none of my doctors can explain, but does not seem to be causing me any issues that I am aware of.

Over all, once I started taking the morphine (see "end of week 4" report), the entire experience has not been that bad - at least not as bad as I thought it would be.

-Mark

Last edited by TongueCancerBeGone; 06-10-2019 11:59 AM.

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 check-in at the end of each week [Re: TongueCancerBeGone] #198498
06-11-2019 05:09 AM
06-11-2019 05:09 AM
Joined: Oct 2012
Posts: 1,155
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Posts: 1,155
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On the whole you sound like you’re managing well. My husband couldn’t even swallow a si- of coffee after three and a half weeks. Do you put anything on your neck? We were advised to use Lubriderm after every radiation session (NEVER before as it will fry the skin during radiation). The nurses also taught me to do saline soaks where you put a j-cloth soaked in regular saline on the red patches and leave it on for five, ten minutes, then you remove the j-cloth, put cream on the neck and cover the area with a non-stick dressing. I haven’t seen anyone else mention saline soaks on this forum, but I found it to be very effective. You do have to do it three or four times a day.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Radiation check-in at the end of each week [Re: gmcraft] #198499
06-11-2019 06:15 AM
06-11-2019 06:15 AM
Joined: Jul 2012
Posts: 3,253
NYC
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PaulB Offline
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PaulB  Offline
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Posts: 3,253
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You may be speaking about domeboro wraps? I haven’t seen anyone recently speaking of such, but it was a few years ago if you check under search, domeboro, which has about 18 responses. It’s for moist desquamification. I never needed or believe I needed it, so I never used it. Others that did, said it had helped.

Speak with your medical staff if you want. I believe it’s OTC.

Last edited by PaulB; 06-11-2019 07:03 AM. Reason: Spell

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






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