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2 Year Anniversary #197773
01-09-2019 04:57 PM
01-09-2019 04:57 PM
Joined: Jan 2018
Posts: 2
B
Bob B. Offline OP
Member
Bob B.  Offline OP
Member
B

Joined: Jan 2018
Posts: 2
I've been reading this site since shortly after my surgery (2 years ago). I was diagnosed with SCC of the mouth and tongue in Dec. 2016. Surgery involved removal of oral tongue, pec flap on floor of mouth, lymph nodes, trach, PEG. Spent 7 days in hospital. Went through the usual 6 wks rad/chemo. PEG failed at the end of that and I decided to have it removed. Had to learn how to eat without a tongue, but soon was eating about anything I wanted. Head and neck is cancer free, but it did move into the lungs. Did a year on Opdivo and had a couple more sessions of rad. Had to go on chemo (Taxol) last fall as things weren't stabilizing. Thing have improved a bit since and not sure what happens after my next treatment. Probably a scan and more decisions. My oncologist left the hospital 2 months ago and the replacement is spread thin (havent even met him yet). I know some of you have been through worse and some are just getting started. I wish you all well, and hang in there. Bob B.

Re: 2 Year Anniversary [Re: Bob B.] #197774
01-10-2019 10:28 AM
01-10-2019 10:28 AM
Joined: Oct 2012
Posts: 1,079
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,079
Toronto, Canada
Welcome to the forum. Head and neck cancer treatment is a grueling journey. My husband had oropharyngeal SSC and was in a phase 1 trial for PDL1 (which is market as Opdivo now). It is comforting to hear that others are being helped by the drug. John’s trial took place in the spring of 2015, so it’s only been three years and a bit. It’s encouraging to know that researchers are always coming up with new medications /treatments for cancer, so hang in there as you never know what new treatment is around the corner.

Do check in or post to let us know how you’re getting on. I’m sure many patients would learn from your experience.


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.
Re: 2 Year Anniversary [Re: gmcraft] #197775
01-10-2019 11:29 AM
01-10-2019 11:29 AM
Joined: Jan 2018
Posts: 2
B
Bob B. Offline OP
Member
Bob B.  Offline OP
Member
B

Joined: Jan 2018
Posts: 2
Thanks for your kind response. I will post updates as I learn more about my situation.


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