| | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Anyone experience Frey syndrome? Almost 3 years out of treatment and I just started developing this. It happens in front of my ear (sideburn area) after I eat at times, so weird!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Liz
First, not fair! You don't deserve this at all. I'm sorry you have this. I had to look up Frey's syndrome TX because all I knew is that it involved sweating so the first thing I thought of was to ask your doctor for Robinul. According to Dr. Google, the TX for Freys does include glycopyrrolate (generic for Robinul). The pill stops all sweating but the side effects include very dry mouth and sore throat. But if you only took one pill a day or even every other day,instead of the usual three it could work. (I have been trying Robinul)
Scary to read how Frey happens, the nerve attached to the sweat gland instead of the salivary gland.
Hope someone here on OCF knows more, but I could not bear to see one of your posts go unanswered for three days.
Charm
Last edited by Charm2017; 06-14-2012 11:58 AM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Ha! Thank you charm! I searched through some of the old posts and didn't find much on it although I noticed years back Jerry posted about experiencing it.
They told me I could do Botox if it was really bothersome but I'm hoping that if it's just a few beads of sweat then that shouldn't be anything bothersome that a little napkin couldn't take care of. Now if it was profuse sweating with lots of dripping then I may take them up on doing something about it.
I'm more or less curious if the symptoms get worse, better or stay the same with time. I had been noticing some zinging sensations on that side of my face so I figured something was trying to connect again!lol
Thanks!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im not familiar with it. Had to look it up too. Sorry you are having after effect issues, Elizabeth!!!! You have gone thru more than enough already!
ChristineSCC 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  | | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Hi Elizabeth ! I didn't reply to this thread because I had to look it also like Charm...but guess what ? I have this ! I didn't know it had a name ! I've had this ever since radiation (13 mos ago). It was annoying but I just chucked it off to some nerve thing. Happens every time I eat, only on the tumor side....not profuse, but enough that I am wiping it constantly while eating. I think in all this time I have gotten used to it. Strange for it to just show up now for you. Let me know if you decide to take something for it.
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Wow, isn't that something Ingrid! Mine is only on the surgical site as well. I use to sweat when learning how to eat again, but that was all over, felt like I had a workout. This sweating is very minor just an odd feeling of something dripping down my sideburns.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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