| | Joined: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2016 Posts: 75 Likes: 2 | I was in a lot of pain this week with radiation fibrosis and no one unless you are in this situation can understand us. I was talking with Brian today and even though I am feeling in a dark place today that I could be so much worse off. I am not an active poster but have been watching the posts since 2005 and then 2009. Hearing about the Hellion makes me sad, so sorry to hear about the lost of another OC person. So please bear with me and forgive me if I am venting about my own pain cause sometimes it can be a lot worse!
SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
| | | | | 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 so glad you were able to speak with Brian today. Im very sorry I didnt have much time to talk.
Hoping tomorrow brings a much brighter day with less pain.
((((HUGS))))
PS... Its ok to vent. We understand where you are coming from.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | I'm saddened to hear that you have ongoing pain issues. I'm sure Brian will have given you good advice and hope that you are able to address this issue.
Thinking of you,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | There is no need to apologize fore venting. We are all here so we can vent, ask questions and get support. Oral cancer is such an awful condition to battle, life would be really miserable if we can't even vent.
I hope your issue gets sorted and you will feel better soon. Having you in my thoughts.
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.
| | |
| Forums23 Topics18,246 Posts197,130 Members13,317 | | Most Online1,788
Jan 23rd, 2025 | | |
|
