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#197980 03-15-2019 03:46 PM
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jane k Offline OP
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My husband was diagnosed with stage 4 oral cancer at the end of September. He is a little over 2.5 months out from treatment (radiation and chemo). He didn't have surgery. His pain had started to decrease slowly, but over the past couple weeks, it has increased to where it is debilitating at times. This week he increased his oxy to around the clock (was only taking it at night before) and his doctor increased the Fentanyl patch from 75 to 100 mcg and added nortriptyline. He still gets very intense pain despite the increase in pain meds. In addition to the pain where radiation hit in his jaw and mouth, he now has pain around his right temple. So far, none of the docs has a good explanation for that or a strategy that has relieved pain.

We would be interested in hearing about pain relief that has worked for you - either non-narcotic medication or things that don't involve meds.

Jane


Spouse diagnosed with stage 4 HPV mediated SCC
in BOT & 2 lymph nodes in neck 10/18
Radiation & chemo completed 12/18
Metastasis to lung - radiation 6/20
Mediastinal mass 2/21
Joined: Aug 2018
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I'm wondering why the pain so much now. My husband ended his rad and chemo for stage 4 beginning of October. I will say it wasn't a picnic for him but now 6 months out, he's had some pain where a tooth was extracted but not really complained of anything else. I always like to look for the root cause or origin of symptoms and wonder what would be causing his pain at this point. Hoping some of the seasoned members have some thoughts for you. I will say mine barely took pain meds during or after treatment. The feeding tube was the most painful thing for him. I suppose everyone is different explains a lot.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Feb 2019
Posts: 8
jane k Offline OP
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Thanks for your response, Connie. The pain had subsided a month or two after treatment, but now has ramped up in intensity to a level of 7 out of 10. It isn't all the time, just when he gets up after a nap. He paces and does neck stretches for about 10 minutes to work through it. The docs don't seem to have an idea about the root cause, which in addition to pain that isn't under control, is an additional source of frustration.
Jane


Spouse diagnosed with stage 4 HPV mediated SCC
in BOT & 2 lymph nodes in neck 10/18
Radiation & chemo completed 12/18
Metastasis to lung - radiation 6/20
Mediastinal mass 2/21
Joined: May 2019
Posts: 17
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It has been awhile Jane, now is your husband now?


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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i have been seeing a return of pain when i try to eat after the 7 week radiation and chemo therapy. Stage IV orophalangeal cancer. just finished treatment 4 weeks ago. The pain is no fun. It's definately worse when I"m eating. I'm treating it with advil and magic mouthwash first, then tramdol and then liquid oxy if i have to.... i wonder a bit if it's not a return of the thrush I had at the end of the treatment. Anyone else have that experience? tom


Tom from VA Beach, VA Orophalangeal cancer treatment july/ aug 2019 chemo and radiation 7 weeks. Tumor under tongue spread to lymph nodes.
Joined: Jul 2012
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Tom,

You’re right, it could be thrush! It’s a pesky condition, that actually could become invasive candiasis that could go further into your esophagus, blood stream, which happened to me! Treatment usually consists of anti-fungal meds. The doctors office can look in your tongue/throat to see it and or do a culture swab.

Good luck


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
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12/13 25 Protons 50Gy 6 Wks Carbo
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03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
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02/19 Finally Cancer Free Took 10 yrs






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My husband was also bothered by thrush, made a bit more complicated because they needed a med that he could take via tube and wouldn’t interact with methadone to cause heart issues. The biggest issue now seems to be the constant thick mucous, for which he is swishing several times/day; taking guafenesine to thin it out and running a nightly vaporizer. His pain level has dropped to a level 2-3 but it’s still too painful to swallow.

We are wondering how far out the mucous issues will continue.


Spouse of patient 7 weeks post radiation as of 9/30/19
Joined: Jun 2013
Posts: 345
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I know this is different, but when my daughter was a baby and she was nursing, we treated her thrush with something we could swab in her mouth (and on mom, of course, so I wouldn't catch it and get infected too) ... I forget what the stuff was called, something violet, but is that an option? Something you can swab on the spots of thrush to keep them under control? If it works for babies and nursing mothers, it is definitely worth a try (because getting thrush as a nursing mom is no joke either).


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
Joined: Feb 2019
Posts: 8
jane k Offline OP
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Apologies! I’m new to forums and didn’t know that replies had come in.

It’s a long story, so I’ll try to summarize. Nothing much addressed the pain, so at an appointment with the oncologist I said firmly that they had to figure out what was going on and address the pain. It was debilitating. She called us and said she thought it might be temporal arteritis and sent him to a specialist. Specialist was doubtful but said the only way to know was with a biopsy.

The anesthesiologist couldn’t place a tube because of stenosis from radiation, so used an oxygen mask which led to an oxygen fire, second degree burns on his face and 3 days in icu. But no biopsy.

Eventually, he had a follow up bx of the tongue tumor and they found necrosis of the hyoid bone and lots of infection. Barometric oxygen treatments and antibiotics cleared it up. And the pain got better. He was also put on nortriptyline for what they called nerve pain, so perhaps that helped as well.

Jane


Spouse diagnosed with stage 4 HPV mediated SCC
in BOT & 2 lymph nodes in neck 10/18
Radiation & chemo completed 12/18
Metastasis to lung - radiation 6/20
Mediastinal mass 2/21

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