| | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) |  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well this news sucks!! I thought Christine wanted to keep the membership numbers down in her "Third time is a Charm Club" (of course named in your honour) but I am sure she will let you join!
There were lots of good words in that biopsy report - things like in-situ. You will know so much more after the MRI. Until then you really can't evaluate options. Stay the course, try to stay calm, and spend all the time you can hugging that wonderful wife of yours. One day I said how much I wanted to meet you and what I got back was them telling me how wonderful SHE is!!! Too funny.
Some of my favorite posts over the years were those you made IMMEDIATELY after your last surgery. They made no sense whatsoever, which of course is not like you!
There are several of us who are not here to prove the odds. - OUR job is to make them recalculate those odds. You are one of those. We have taken hits before, this is is no different. Marshall all your troops - mental physical and spiritual - we at OCF are digging in for the fight.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | Dear Charm, What can I say. This is gut wrenching. Like many others I have looked up to you and appreciated your wisdom, empathy , diligence and your humour. Yes , these are fighting times and you are a fighter. This is a battle that can be done. You are already armed, go fight.
As a caregiver and a member of the reoccurrance club I do know the utter devastation that Bev ( and You ) is feeling right now. She I'm sure just wants to fight for her Man and keep you safe. For myself, I found that once we knew exactly what we were facing and how we were going to treat it I was able to be much calmer. I stood right beside Kris and fought as hard as I could for him, Wife, Lover, Best Friend, Advocate, Cajoler, Encourager and Nurse. I definitely identify with her terror and fears. Sleeping pills helped me a lot too otherwise my mind just spiralled.Once treatment started I knew we could do the fight.
Should you need to lose your tongue, I'm here. Been there, done that. Go fight Warrior,
Tammy - and Kris
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 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | | "OCF Canuck" Supporting Member (50+ posts)
Joined: Oct 2011 Posts: 67 | I wish you "Strength in Body, Peace in Mind, Love in Heart". You are such an inspiration. Full of great advice, humor, intelligence etc. I could go on and on. <3 and good luck.
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Charm, there's not much I can say that hasn't been said by all these people here who admire, love and respect you. You and Bev are both strong people who can get through this. Third time WILL be the Charm. You've beaten it twice, you can do it again. Bev and you just hang on to each other and you will get through it together, one day at a time. You have had the best attitude throughout the 3 years I've been an OCF member. That positive spirit will get you through. You and Bev are in my thoughts.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 | You are well armed for battle!! Strength. Knowledge. Good doctors. And love, love, love!
All of my best & most healing thoughts to you & your family. Thank you for all of your wise posts. You are an educator!!
Sally
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | I have nothing to say - just want to add my sincerest best wishes to the chorus.
Unfortunately I don't do hugs or blessings but if I did, I would fill this page with them. Draw on your strength and knowledge and support whilst taking one step at a time
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  Still underweight
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Just saw this on FB this morning. Hang tough man.
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Charm!
I can't believe what I am reading! WHY!?!? WHY?!?!? WHY!?!?
This is so unfair. I can't imagine what you and Bev must be going through, you know we are all here for you. Big ((HUGS)) my friend.
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Just some thoughts to hang on to (now I am over the shock and able to think a bit more clearly).
*Sounds like the SCC is tonsillar which may mean that it is more accessible to surgery and less functionally destructive than BOT.
*If SCC is tonsillar, total glossectomy might not be part of the plan.
*Moderately differentiated suggests a better outcome than poorly differentiated.
*You have had a few years to regain your health so you are better equipped physically than the second time around.
*You have a direct line to the best "go to" team.
*I assume this was caught early so hopefully treatment might not be so severe.
*You are the perfect advocate for your own treatment
I know that you know all this but hope that if you see it written down, you will be better able to focus on it.
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 Still underweight
| | | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 | Charm, Just found out about this through Elizabeth (Esikon) on Facebook. This really sucks. Talking with you and your wife was one of the highlights of the 2011 walk in San Antonio for my wife and I. Your story about the judge telling you to ask for an HC recess was a great one that i've retold to friends several times. Some of them were lawyers.
Your name was one of the first names i became familiar with on this board. I must admit that anything I say would be advice you've already given someone else. But, the best advice i've ever been given and that i always give when someone calls me up and says, "Please call my friend and talk to them, they've been diagnosed with oral cancer and they are afraid." is be STRONG. And I know you will.
I'm 3 1/2 years out now and only come back to this board every month or two to see what's going on, but this will have me coming back more often to check on you. Please keep us informed and tell your beautiful wife (I've seen her) we are here if she needs us.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
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