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#199366 11-02-2019 04:45 PM
Joined: Nov 2019
Posts: 3
Mortal Offline OP
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Joined: Nov 2019
Posts: 3
Greetings!

I am so happy to have found this site. On Halloween, my husband and son watched scary movies and answered the door while, upstairs in my bedroom, I devoured Brian Hill's Oral Cancer Answers podcasts, "salivating" for more. (Written "tongue in cheek" -- forgive my bad puns.)
The information contained in the episode with Dr. Carol Fakhray was particularly filled with many of the questions that I have wanted answers to. (In fact, I still have follow up questions but that's for a separate thread.) I often feel that the doctors to whom I address my questions, even the specialists, don't seem to feel confident definitively answering some of them. This has lead me to feel vulnerable and like I need to connect with other patients and hear from experts.
I completed 35 radiation sessions on Oct 7, 2019, then proceeded to come home and weep to Fleetwood Mac's "Never Going Back Again." I had no idea how much grief I had been holding until it was over.
I have half my salivary glands intact apparently as only needed radiation to my left side, but I am terrified of what lies ahead in the salivation and dental realms. (Dr Ross Kerr gets a 10/10 from the podcast in which he was featured). I've been seeing periodontists for a looooong time and am fastidious about my dental hygiene. I get good marks for keeping things maintained by my periodontist, and my prosthodontist has told me on the QT that it's okay to take a break from fluoride carriers until I can stand them again. The fluoride was killing my throat. I hope she's right as I know how compromised we now are.
I'm also on HRT for osteoporosis, which has lead to its own series of stressful biopsies during this whole process of trying to determine my primary site for squamous cell carcinoma as I was having post menopausal sporadic bleeding during CT scans, endoscopies and other testing, and it started again 2 days before end of rad treatment so am in fact going in Monday for a hysteroscopy, even though biopsy showed no abnormal cells in August 2019. Endometrial lining is 6 mm, was 8 earlier this summer both of which are apparently too thick. They'll be looking for cause, which could be fibroid, polyp or hormone tweaking. They'll do another biopsy too.
Well, there you have it-- grateful to have survived treatment. Looking forward to getting this latest behind me and then of course a clear PET scan in January 2020. And on and on. And getting to know the members of this site and sharing knowledge.
Have my one month post treatment appointment Nov. 5, as well as first periodontal cleaning and check-up since treatment began.
I am particularly interested in finding out more about possible vaccination for hubby and me -- both post age 46 but have heard that vaccination can help (reduce recurrence and severity.)

Mortal

Last edited by Mortal; 11-02-2019 05:21 PM. Reason: cleaned up a bit

56 married female, otherwise healthy and active at DX, mother of 3 grown children (18-26)
T1/N1/MO HPV + (left tonsil)
July 12, 2019 left lymph node fna DX scc
July 29, 2019 left tonsil biopsy DX HPV-related squamous cell carcinoma P16
Aug. 19 - Oct. 7, 2019 VMAT 70 g, 2 g per fraction to tonsil, ipsilateral neck 63 g
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
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Hi Mortal,

Welcome to the forum. Gardasil has been discussed over and over on the forum. If you search for “Gardasil” you will find many members have shared their thoughts. I would particularly direct you to a thread “Introduction and a Question” in that davidcpa talks about the work he has done for OCF and a conversation he has had with one of OCF’s medical consultants.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF!

Heres a thread with a link to recent changes in the age restrictions for the Guardisil shot. Hope this helps!!!

Guardisil vaccination age update







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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