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Thanks for posting the info on SCOPOLAMINE. This patch is something I havent heard of before, glad others may benefit from it.


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
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klo Offline OP
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Thanks for the scopolamine tip. This is an anticholinergic so it is of interest that it is being used for its side effect (dry mouth). I am also embarrassed to say that my own company produces 90% of the world's duboisia plant which is where scopolamine comes from and I never even thought of it. If scopolamine works, there are lots of other anticholinergics out there that will do the same thing.

Rossnz might be interested to know that there are a couple of antihistamines available over the counter in Australia and New Zealand that are a lot cheaper than $18 a pop. If I give you the names, will you promise to talk to your doctor and/or pharmacist first? Ok. Phenergan and Polaramine are both old style antihistamines (drugs for hay fever - sorry can't remember the chemical names - too long ago) but were also used for travel sickness. My mother gave Phenergan to us kids, making good use of the other side effect - it put us to sleep for the entire car trip. And that of course, is the down side.

Maybe Susan can enlighten us, did scopolamine make your sister drowsy? I realise this is likely a dumb question given the chemo, radiation, lack of nutrition and being really sick probably wiped her out but thought I would ask anyway.

I am still exploring the thinning of the mucous idea rather than drying it out, but my guinea pig although committed, remains forgetful. I don't think he has had enough therapeutic doses yet, and he needs to compare how he feels across a number of days at different times.

I am going home to Mother tomorrow for the first time in 6 months (she lives 100 miles away so popping in for coffee is not really an option) and leaving my Alex to his own devices for the weekend. Hopefully, he will remember our experiment and will have lots of comments upon my return.

Thanks everyone, this has got me all fired up and for the first time in a while I feel like I can contribute


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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I know you have to get away but I don't know how reliable any trail using a GP can be when you leave the GP in charge of the dose schedule??


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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thanks for that , i'll look into it . the patches didnt make a huge difference in hospital, maybe a 1/4 to a 3rd less .


45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
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klo Offline OP
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Yes david, I was concerned too that the guinea pig might not be terribly reliable - especially when I found out the day before that he had taken himself off pain meds 2 weeks ago after being told that WHEN he was ready, he needed to ease off stepwise to avoid withdrawal symptoms, depression etc. He told no one, still had a mouth full of ulcers and complained his shoulder and back hurt from multiple stab wounds courtesy of the cardiothoracic department. He tells the doctors all the time that we are intelligent human beings but I am afraid I can only vouch for myself at the moment (and even that is a bit questionable since chemo brain seems to be catching).

However, I am as sneaky as he is "forgetful" and worked out that he should have taken 120mLs by the time I got home which would pretty much empty the bottle. The bottle was empty this morning so, provided he wasn't even sneakier than me, and didn't tip the doses down the sink, he seems to have been conscientious.

Alex has been talking about "giving back" and he recognises this might help others if he can stay focused and objective.

Nothing much to report yet, Alex complains of frothing at the mouth when he first takes a dose but says he thinks the phlegm is not as bad as it was. However, he thinks it was improving before he started the Bisolvon anyway. We will check that perception when he has a week without anything.

There is a fly in the ointment - bromhexine is not available in the US. However, I have LOTS of time this weekend and will research alternatives such as that guanithingamy (assuming that the concept works). Unfortunately, this weekend is grand final weekend for the Rugby League and to add insult to injury the Australian Rules football Grand final is being replayed as a consequence of the fools playing to a draw last weekend (why can't they just play a round of scissors, paper, rock like normal people). So I have to suffer TWO Grand Finals on one weekend. BLECH!


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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I took Guaifenesin in pill form, huge horse pills, and was on Salagen and I believe both helped but still had thick phlgem.

I think it was my RO that told me this and can't remember which one set is which. We have two sets of major saliva glands, submandible under front of chin and the supramandible up by the ears. While they both make saliva, one set of these sets is responsible for making the thin stuff that thins out our saliva and the other makes the thick stuff. It's when the thinning set stops working that we get this yucky thick stuff that gags us. Since I had XRT for an unknown primary, it's a wonder that anything still works. I can only attribute it to the meds I was on.

I thought you might put that tidbit into your research project.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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klo Offline OP
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Update from Alex: The results of using a mucolytic (something to make mucous/phlegm thinner and easier to clear), is undetermined. Alex reports he foams at the mouth when he takes it. He also "foams" when preparing to eat something acidic like pineapple and lemon, and sometimes it happens when he prepares to talk so we assume this is Alex's new normal for salivation.

The Bisolvon doesn't not appear to be good enough to stop the hacking and choking that inevitably occurs as soon as he comes upright each morning but he thinks the phlegm is not as bad through the day. He thinks this was improving before the Bisolvon though so we are unsure if it is time or drug that is making a difference. He is going to try a week without now (the crossover) and see if the condition of his mouth deteriorates, stays the same or improves.

More next week

Karen


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Sep 2010
Posts: 7
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Good Morning All:

Being new to this site and having finally browsed many of the topics, one thing that I have been seeing over and over is the question of what to do for heavy mucous and the discomfort caused by it.

I'm by no means an expert and have been dealing with the same problem since about week 5 of radiation. I'm now 7 weeks post treatment. Initally , the strings mucous were unbearable and kept me gagging for days at a time. A friend of a friend who is also a doctor had gone through SCC, BOT approx two years ago and gave me a call to see how I was doing and I told him of the mucous problem. He is the one who suggested I try Glyocoprrolate. It is an injection used in the OR to temporarily suspend sucretions. He told me it was the only thing that gave hime relief. I asked my RO to prescribe it to me and she did. It is taken via injection SubQ, and I do it myself at home. I have to say it's been a life saver. The injection provides 4-5 hours of relief... no mucous. I am allowed an injection every 6 hours.

I used it for approx 3 weeks steady and now, thankfully, only every few days if the mucous is unbearable. I am suprized to have only seen this this drug mentioned here only once and then it was the pill form, which by the does not work very well.

It is my sincere hope that this information may provide some relief to some of you out there suffering with mucous.
_________________________
SCC, BOT. Diagnosed May 19, 2010. TX 3 chemo and 35 RT. TX finished on Aug 17, 2010


SCC, BOT. Diagnosed May 19, 2010. TX 3 chemo and 35 RT. TX finished on Aug 17, 2010
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Did a little net surfing as you do when something new is suggested.
Just mentioned this to (klo) over coffee and sent her the link.
As with all medications you should check with your doctors
first. There may be Precautions,Side effects and Contraindications

FDA Approves Glycopyrrolate Oral Solution for Chronic Severe Drooling
http://www.medscape.com/viewarticle/726048
At the bottom is another link to;
Drooling (Otolaryngology and Facial Plastic Surgery)


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Sep 2010
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Hi Everybody:

Gabe you're right about researching anything that is new, as there may be side effects or contraindications associated with that particular drug. That being said, I've been using glycopyrrolate for the past few months with no adverse side effects. Please also note that as I mentioned in my previous post, what I am taking is an injectable medication. I take 1cc via injection at a time NOT glycopyrrolate oral solution.

This drug may not be for everyone. I just wanted to let everyone know that there are options available.

Hope this helps.


Thanks,


D.


SCC, BOT. Diagnosed May 19, 2010. TX 3 chemo and 35 RT. TX finished on Aug 17, 2010
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