| | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP  "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 |
Thank you David, Gabriele, Christine and Jennifer for your best wishes.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Best of luck with your next surgery! Hopefullybcompared to you've been through this will be far more manageable!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2010 Posts: 14 Member | | Member
Joined: Dec 2010 Posts: 14 | Wow, you have been through so much. I am very new to the cancer world. I am almost at a loss for words to read your story. You are such an inspiration and positive force. You are amazing! Thank you for sharing your story.
43,T1N0M0
Mucoepidermoid Carcinoma Int/high
9/10-1st surgery
10/13/10-2nd surg,UCSF Dr.Eisele rmv tumor,L floor mouth excised, muscle moved under chin,skin graft L thigh to cover. Neck disct 16 nodes
11/29/10-IMRT 30under chin
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Karen,
Yours is truly a difficult journey and proves that you are an amazing woman. I wish all employers were that accommodating.
I hope your next surgery is successful and proves to be the last one! I�ll keep you in my prayers.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 96 | WOW, What an awesome employer. My mom has been my caregiver and I have to say that her employer has been awesome as well since she has had to take off time to take me to doctor appts and stay with me. Now I live with my parents. They allowed her to work from home in order to be able to be with me and take me to everything.
I hope that this next surgery goes smoothly and gives you wonderful results. It gives me some hope as well as I have one side of my mouth that doesn't close and I drool out of it too. My new doctor says that I probably won't be able to get it fixed but I am not giving up.
I too love your comment �It takes a lot of guts and determination to overcome the many difficulties some of us are forced to adapt to every waking moment of the day from the permanent damage we are left to deal with�. I also read on the site that we have to grieve the person we once were and it made sense to me. I do not like who I am right now but I also know that I can't totally grieve who I was since I know I have more work to be done on me. When it is done maybe I will do something to help me accept who I am now compared to who I was.
31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Holy cow what a strong strong woman you are! I'm just sitting here with my mouth hanging open in awe of what you have been thru BUT so happy that you are still here after all you have been thru and yes very lucky to have such a great company you work for, how awesome they are! Good luck on your next upcoming surgery.
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Karen,
Your resilience, after all that you have been through, is amazing. Your experience offers much hope to others out there who are dealing with this disease. I am so happy for you with your upcoming procedures. And what a great and empathetic employer you have!!! That he/she is creating a job for you is heartening. I'll be looking for your future posts as you move forward. You have offered so much support to me and Clark. I'll be in your corner cheering you on!!!
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Karen, oh my gosh! You have been through a lot, just keep on keeping on.....we don't have much of a choice do we? You Take Care and keep fighting the good fight! p.s. I am right there in it with you!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | ouch, Yep, you have been thru a lot and are doing great. I lost all of my teeth and am about to lose my whole lower jaw bone. I hate the drooling as you do but it must serve a purpose. Good luck with your next surgery. It seems we are on the same time line with this stuff.It's getting close to my 4 yrs too. Keep up that gumption. You are a winner.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Karen, what an awesome woman you are. Truly an inspiration.
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.
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