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#94188 04-23-2009 05:05 PM
Joined: Mar 2009
Posts: 109
Jenka Offline OP
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I'm done with 22 out of 33 treatments, and the side effects have gotten pretty tough. My oncologist prescribed Gelclaire for me, I got it yesterday, but have yet to use it. I use magic mouthwash and percoset for pain management, mainly because it takes just few minutes for it to start working. The Gelclaire packet says not to eat or drink for an hour following application, and I dont' know if I can handle not drinking for an hour as my mouth/throat get too dry or I'd start coughing...

I've searched the forums for any references to Gelclaire, and there isn't much.

Anyone had any experience with it?

Thanks!


38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
Jenka #94204 04-23-2009 07:56 PM
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Jenka,
I've used it along with a few different variety of "magic mouthwash" and of course pain meds. It did help, but as with any of the rinse and spit treatments it only last for a short time. And there is the issue of not eating or drinking afterwards. Give it a try.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Susan2992 #94224 04-24-2009 10:52 AM
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Posts: 130
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Jenka,
I did not use the Gelcaire, however there is a man in my local H&N support group absolutely swears by it. Says it works better than the magic mouthwash at healing the sore in your mouth.
Infact he believes in it so much that when I was going through treatment he contacted the company to see if they would work with me with the cost as I don't have insurance. I didn't follow through with it, because I really didn't have a problem with sores in my mouth. If what he tells me about this stuff is true, you should give it a shot, and if you can't make the hour without a drink, what have you really lost. I don't think there was but I will go back and check his email, if there was any additional interesting information, I'll post it for you.
Amy


40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
AmyK #94269 04-25-2009 08:31 AM
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Posts: 109
Jenka Offline OP
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Now that I dropped the last e from Gelclair (not Gelclaire), I see more threads.

I tried it yesterday. It made me gag a lot, but I lasted that hour. It didn't help at all. I will try again today, but it doesn't seem like it's doing much so far. I hope it's not because when I was gagging, I was just spitting it all out.

I am down to two last weeks, and it's pretty miserable. I gave up on normal foods, and am now just on supplements (replete and ensure) and water, and tea with honey. Have tons of phlegm from those those shakes though. I know - not much I can do, just very unpleasant.

My tongue burns a lot, so anything I take by mouth hurts. It hurts to talk too - anything that makes my tongue move hurts. I take percoset for pain, I also take magic mouthwash before eating. Both help for the throat, but not much for the tongue pain.

The doctors are saying I'm looking decent so far, and promise that it will get worse, which is pretty scary. I read and re-read your posts guys for inspiration.


38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
Jenka #94903 05-04-2009 11:58 AM
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Posts: 225
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Martin was told to use Gelclair because of a painful "mouth ulcer" but he kept complaining the "ulcer" was sharp. They didn't even look in his mouth properly! I am the one who did the doctor thing at home with a wooden stick and told him to say "aaaaaaaaaaaaaah", and I found the mysterious ulcer which was hurting him, it was a piece of bone sticking out of his gum! I was furious, how could they miss that. the next week I was there at the consultants and I told the doctor "you stand behind me and I will show you the bone, it's not an ulcer".
Otherwise for the normal ulcers Gelclaire worked a bit but he could never last an hour with sipping some water. We also used Bonjela.
Keep positive, it does get worse but then slowly slowly things come back.


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear

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