#90322 02-20-2009 04:46 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | OP  "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | 2 years ago today,my first post.God how naive i was then.
Thanks Brian and all my family here for guiding our way,and helping me to become a better human being (i think lol).David as i have said before your honesty was and continues to be quite brutal at first glance,but so very very honest..
[quote]Hi my name is Liz and my husband Robin is 44 years old and about to embark on the roller coaster ride that is radiotherapy.He was diagnosed with primary scc of the right side of the tongue and a secondary tumour on the left side of his jaw and neck on December 8th.Since then he has had the primary removed with laser therapy, had a bilateral radical neck dissection and removal of the secondary tumour.This treatment is being finished of with six weeks off radiotherapy to both sides of his mouth and the floor.This was decided to be the best treatment because tests and scans have not revealed how the cancer spread from the right to the left side so they do not actually know if they have got all the cells.I am a long since retired SRN and have read a great deal about radiotherapy and i would be very grateful for any tips,help and advice on how to deal with internal and external side effects of this
aggressive treatment.
Robin is a blue eyed fair skinned red head,will this make skin damage worse?What are the best cremes and lotions to use,what should we avoid?How long before eating becomes difficult .Does it hurt? will he be able to work?(he is a plumber)i have a million questions maybe someother peoples experiences will help me to help him.I would be grateful
[/quote]
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | Liz,
I never mean to be brutal but I do want people to understand the bottom line and sometimes you just can't sugar coat the realities of this horrible cancer and it's equally barbaric treatment.
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: 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 | Amazing that so much has happened in two years. You are SUCH an inspiration to all of us, through your trials and your grief you are always there for other caregivers and patients.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | OP "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | David when i reread that sentence i realised it wasn't quite meant to sound that way i am sorry.The word i think i wanted was blunt.something us yorkshire folk are famous for lol.
whatever the word i want doesn't change the fact that i love and respect you and your continued dedication to this forum.
hugs liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | hugs back and I knew it was just your accent.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Liz
I know that we all benefit from the knowledge that you have to share with us today. Thank you.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Liz,
It seems like just yesterday that you came into our lives. Your love for and devotion to Robin has inspired so many of us. The tenacity that you showed in the way you handled the legal issues surrounding Robin's diagnosis and treatment has shown a inner strength that not too many people have.
We are fortunate that you continue visit the board and I hope that you will continue to do so for many years to come.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I remember reading all your posts when I came to this site around 6 months later.
Still read them all now as it is wonderful that you are still here and helping others.
Hugs back at ya
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Liz,
After Bill's DX in July of 2007, I started researching everything I could get my hands on and found OCF. I was in a state of total shock...how could my Bill, an otherwise healthy man, have cancer?? Your blog helped to lift me out of my paralyzed state and made me realize that this was something that I was going to have to tackle with everything I had..I had to do it now and I couldn't sit back and wait for someone to do this for me or Bill.
I, of course, was horrified at the state of Robin's health and questioned how you were able to stay strong faced with all that was coming at you. I now realize that there was no other choice.
What I am trying to say is, that in the midst of your darkness, you were helping me do what needed to be done to save Bill's life. I am grateful.
Hugs, Deb
Last edited by debandbill; 02-21-2009 08:28 AM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | My dear Liz,
I still remember my first post and how quickly you reached out to help me. And, how you were there with me through the highs and lows.
You were an incredible caregiver, Liz. Robin was lucky to have you by his side.
Thank you for helping me, admist your own struggles. with this damned disease. You are one amazing person!
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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