| | Joined: Feb 2013 Posts: 53 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 53 | Hi All, As my school year has come to an end, I thought I would take a moment to share my experience with recovering from a recurrence and subsequent radiation treatment. Although advice is always helpful, I find that sometimes I've learned the most from all of you when I've read your experiences and how you've successfully navigated them  I have to say that what I've experienced so far is minimal compared to what many of you have been through (no chemo, feeding tube, disfigurement, etc.), but radiation recovery definitely added a new challenge to life. I came through radiation with some pain and discomfort in my mouth, but managed to drink enough Skandi shakes to only lose 10 pounds (as I've said before, I was only 105 to begin with so not a lot of weight to lose.) I am a runner and kept running 3 miles per day during radiation treatment, but had to discontinue the running in the weeks following radiation. I lost all my taste and am just now getting a little back. That is one of the hardest things for me as I have to "eat to live" instead of being able to enjoy eating. I find that I can taste strong things like blue cheese, but most tastes are still fleeting. My saliva is increasing and I have found that biotene gum really helps, especially when I returned to teaching. On that, I teach autistic preschoolers-not exactly an easy job to return to! But by 6 weeks post radiation, I felt good and really wanted life to get back to normal. I loved returning to the classroom where I was greeted with hugs, "Teacher Karen, you're back!", and unfortunately, lots of germs! After being back a few weeks, I got a pretty bad case of bronchitis. Then with the antibiotics, came a case of candida, and so on. It was a good reminder to me that our immune systems are compromised and we must be careful of exposure. But I finished out the year successfully, and in looking back, I would probably take a little more time before starting back (my radiologist had suggested 3 months post radiation). So now I have the summer to continue my recovery and enjoy life! Proverbs says, "A joyful heart is good medicine" , and I agree. My personal faith provides peace and comfort as I walk this journey, knowing that there is a reason and a purpose behind what we experience in this life. I am about to head to Africa for our daughter's wedding and am thankful to be alive to be there! I hope my sharing may be helpful to some of you just coming out of treatment, that there is some "normalcy" coming, although all of us would probably agree, that we have to get used to the new "normal" in our lives. Best wishes to you all in your recovery! Love, Teacher Karen
Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection
| | | | | 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 | Congratulations on finishing Tx. Wishing you smooth sailing on your road to total recovery.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good news, and thanks for sharing,
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | Hi teacher Karen
Great story - thanks
The take out message for me was the mind shift you achieved from eating for enjoyment to eating to live. If Alex and I had realised this a little sooner, he may not have gone down to 48kgs (105lbs), been hospitalised for malnutrition and risked his future treatment and cure.
The good news is that the hospitalisation and threat of discontinuing treatment scared the crap out of him and that "eat to live" mantra became his reason for getting up in the morning.
My wish for anyone reading this is to understand this and treat nutrition (and fluids) as part of the treatment - at least until well on the road to recovery.
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: 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 | awesome!
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: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Good to hear you are recovering well.
Taste will come back slowly but surely over the next 18 months.
Just make sure you try loads of different foods without too much spice and keep those taste buds active.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2012 Posts: 58 | Great news. Thanks for sharing your story. A wedding in Africa sounds fantastic. I am very happy for you and your daughter.
Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13
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