| Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Dec 2011 Posts: 126 | Hello everyone,
I have recently hit my 2 year mark from finishing treatment, and so far so good! However, I have recently began having a couple of new radiation side effects that I was hoping someone could help me with - my doctors don't seem too concerned. The first issue, which started about 6 months ago, is constant fever blisters/cracking in the corners of my mouth. It's painful, drives me crazy, and makes it very difficult to stretch my jaw or open my mouth wide. Second, I have recently been getting bad muscle spasms in my jaw that causes my jaw to feel like it is wired shut. The spasms started out pretty mild and infrequent; however, recently they have been lasting much longer (around 1 minute) and becoming more severe. They are painless and don't cause me too much discomfort; however, I worry I am going to get one at work or when I am talking to people one day, and not be able to talk to explain what is going on (during the spasms I can't open my mouth at all).
Does anyone else experience these side effects, and if so, does anyone have any advice on how I can help them?
Thank you all! Emily
Emily - 24 years old at diagnosis HPV-, no risk factors T2N2b Squamous Cell Carcinoma Left oral tongue, poorly differentiated Hemiglossectamy, reconstruction, partial neck dissection 30 Radiation treatments, weekly chemo (cisplatin) 1/13/12 last day of treatment Diagnosed October 2011
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | The blistering, cracking on the lips, side of mouth can be an indication of an infection, fungal, bacterial, viral or combination. Other factors may predispose one to them also. http://en.wikipedia.org/wiki/Angular_cheilitis
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
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | So here is a solution and perhaps a funny story. Most angular chelitis is fungal in nature, and in oral cancer patients that cause outweighs others by a mile. So after recently having the flu for weeks, I developed pneumonia which had to be treated with antibiotics of course. Those in turn always cause me to develop candida blooms (fungal infection) in my mouth and requires Diflucan to get rid of. The angular chelitis is all part of that process for me. So it's a weekend, and while the corners of my mouth usually heal up in a couple weeks on their own, this time they did not. I couldn't stand the irritation of it any longer.
So I ask my wife to go to the drug store for me and buy me a tube of "jock itch" ointment, and then a tube of anti-itch creme for insect bites, and lots of other things. I told her to pick one that didn't have benadryl in it, but that has 1% hydrocortisone. She thinks I have lost what little is left of my mind.
Most crotch itch is fungal, so now I have a topical fungicide, and cortisone helps with healing and closing up fissures and the like. Mix the two together and rub it into the corners of our mouth and you have a home made remedy for about 5 dollars. Don't put it in your mouth please, just rub it in the corner. Works like a champ.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | you have a home made remedy for about 5 dollars[b][/b] Hey Brian, I guess since a member posted this treatment it can stay posted according to the rules?
There are likely many other therapies not branded by a big pharma logo that can offer benefits for various conditions. But it is so very hard to sort out those that really might help and have some level of track record from those just marketed by shady characters.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | donfoo - I'm not sure of your intent. I offered advice as a patient/survivor personal experience, of something that worked for me when I could not get into seeing the doctor in a reasonable amount of time. I'm not selling anything, and I have no agenda to promote a specific brand of anything. Have we all not been doing this for over a decade here? I am not a company sales person posting about my company's products which is not allowed.
There exists a Rx version of what I discussed, (though a different anti-fungal, and stronger cortisone at 2.5%). So I feel comfortable that my suggestion will not hurt anyone. Is there some other criteria that you think I should have met in offering this help? Or are we not over the deletion of a sales reps posting yet?
Last edited by Brian Hill; 03-01-2014 12:33 AM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Dec 2011 Posts: 126 | Thanks for the suggestion Brian, I will certainly give it a try!
Emily - 24 years old at diagnosis HPV-, no risk factors T2N2b Squamous Cell Carcinoma Left oral tongue, poorly differentiated Hemiglossectamy, reconstruction, partial neck dissection 30 Radiation treatments, weekly chemo (cisplatin) 1/13/12 last day of treatment Diagnosed October 2011
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I tried to convince my boys to use Beaudreau's Butt Paste but they just couldn't get beyond butt paste on their face. It probably won't help with the thrush part but it works for 'roids and rash real well. Chapped lip products are your constant companion just like water.
The jaw problems, Emilyp, are more likely "spasticity" or permanent contraction of muscles. It is vitally important to keep stretching your mouth open and try some exaggerated motions while talking like opening the mouth real wide and exaggerated pronunciations. Not doing exercises regularly and often could result in your mouth not being able to open. Gently massage the areas that hurt,too, to encourage blood flow. Please be diligent with this.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Butt paste works GREAT for chapped chins and faces. Put it in something else and don't tell them the name!!
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'm sorry people, in all my life I never heard of Butt Paste lol. Whatever it's used for, I sure won't ask for it in a gym locker room, especially at the YMCA.
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
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | For those with a farm background, there is also Bag Balm. I'll leave you to figure out what this stuff is used for, but it does wonders for other issues. (This thread is really spiraling out of control now).
Last edited by Brian Hill; 03-01-2014 04:28 PM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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