| | Joined: Oct 2009 Posts: 51 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | After my first surgery, 11/08 and Tx, I pretty much went on about my daily business. Went back to work and attending monthly ENT check ups. No big deal, I seemed to have been doing well until recurrence popped up last visit 10/15/09. Looks like I'm starting all over again, beginning with surgery 11/2/09. Also, looks like Tx will be more aggressive to include both Rt and chemo.
Second time around I want to go at this cancer more proactively with 110% of everything I've got to prevent recurrence.
I would greatly appreciate any and all inputs, diets, nutrician, excersise, both the DOs and DON'Ts, any help to
assist would be great.......thanks in advance...Barry
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | 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 | Barry,
Consume a ton of calories and water each and every day.
Get fluoride trays and use them.
Stay on top of the swallowing.
Stay on top of the pain.
Try not to get depressed.
Rest Rest Rest and don't push your body during Tx or recovery.
Don't listen to any of the non traditional suggestions your friends will give you and stick to the proven Tx.
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: Oct 2009 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | David,
I wish I'd gotten such advice my first time around.
My biggest fault here is that I probably went back to work to soon (not enough rest), wasn't proactive in Tx process (probably should have insisted on chemo together with RT).
Thanks David....
Barry
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Hi, Barry,
I am so sorry you are dealing with going through treatment again. The chemo is a good idea as it augments the effects of the radiation (also gives you more side effects so follow David's recommendations). Without knowing more about the extent of your original tumor and the current area that is showing up, you might look at some of the posts from people who have had induction chemo. Our understanding was that it would shrink the tumor and perhaps prevent distant metastisis. Perhaps this is sometimes used when someone has already received radiation and may be able to only have a limited amount of more radiation? Another poster had cyberknife the second time around which might be an option for you. He posts under Charm.
My thoughts are with you- Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Barry, sorry you have to go through this again. What kind of surgery did you have the first time around?
They'll hit you with the heavy guns to get rid of this thing.
Eat really well, get your body physically and mentally ready for battle.
keep us posted
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Sorry you are going through this again. We can go through it together. I do not know when I will begin my treatments as my first visit with the oncologist is Thursday.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Hi Barry,
I'm having surgery tomorrow for a recurrence to remove 6 new cancers in my jaw and neck (they are mets from a recurrence of tongue cancer that was removed in early August). After that I'll be having RT and Chemo as an inpatient at my local CCC. They will be treating both sides of my neck including the left side which has already received 70 gray. Reradiating this side of my neck and jaw is not without risk but better some more collaterol damage than losing my life. I think that my RO intends to give me about 40% of my previous dose in the already radiated areas and maximum grays on the right side.
I'm preparing for all this by maintaing a normal healthy diet with the addition of things like pomegranite juice and other juices plus multi-vitamins and vitamin C supplements. I have put on weight and am going into this in the best physical and mental shape that I can.
I'm also hoping to do a retreat in the New Year which teaches meditation,has an anti-cancer diet and will allow me to take on board ideas which I believe may enhance my chances of staying cancer free in the future.
Good luck to both you and Angelia as we start this battle...again!
Sue
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | 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 | Best wishes to all 3 of you going through the battle again.
Will be thinking about you all and watching for your next posts.
Love
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: 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 | I'm with Gabe, I'll be with you all the way.
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: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | I'll be thinking of you and hoping for your treatment success as you go through treatment again.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Oct 2009 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | KILL THIS CANCER....I just had my ENT appointment for my surgery Wednesday 11/4/09.
The Dr explained his proposed procedure quite clearly; He has two tumors to concentrate on, one toward the back (top)of mouth--should be pretty routine; the one in my right jaw muscle will take a little more through approach. That one is in/around the nerves in the part of the jaw muscle for chewing (I don't recall, except the nerve group started with the letter "p"). KILL THIS CANCER.....Anyway he explained the procedure, in as much detail as I could grasp, to include a new flap made from my thigh...Monday is for checking my heart, etc. then Wednesday is my surgery.......KILL THIS CANCER...
I plan on a proactive approach and attitude all the way this time around, with only one purpose and goal in mind....KILL THIS CANCER...KILL THIS CANCER....
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Great mantra, Barry.
Could be pterygoid (sp)from what little anatomy I still remember.
I wish you good luck and a speedy recovery.
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: Oct 2009 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | Jerry,
Although I can't even pronounce it, I think you got the word correct. KILL THIS CANCER...
I also found out, I will be able to take RT along with chemo along my jaw line, it seems that spot wasn't previously radiated.....umhuh? wonder why cancer showed up there??? duhh!
KILL THIS CANCER...KILL THIS CANCER...
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Good luck with Wednesday's surgery! I had mine last Wednesday and am now back at home, after only 2 nights in hospital, although I didn't have any grafts or flaps to complicate things. I'll be thinking of you on Wednesday!
All the best
Sue
Last edited by Sue G; 10-30-2009 08:40 PM. Reason: typo
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Oct 2009 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | Sue,
I have been thinking of you lately as well. I know you've been through so much already.
Angelia just got out as well. If she's up to it, try to send a PM to walknlite...we're all in the same boat right now...KILL THIS CANCER...
I'm trying to stay up on my blog...don't know how far that'll go, but....
Anyway, so glad to hear from you...I'll be about two weeks in the hospital so don't expect me back on line for awhile after Wednesday...KILL THIS CANCER.....
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hey Barry
great atitude!!!
All the best for wednesday.
love 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: Oct 2009 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2009 Posts: 51 | KILL THIS CANCER...I can only do so much, but I'm going to do as much as I can....If that means only my attitude and approach, then so beit...the rest is in the skill and hands of my team and my God...
....one I can prey for, the other already knows the outcome.......KILL THIS CANCER....
57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
| | | | | Joined: Nov 2008 Posts: 14 Member | | Member
Joined: Nov 2008 Posts: 14 | I am with you Barry 100%. I just had my surgery on Wednesday the 4th also. Because they opened the chest wall, I look a little like Frankenstein, but I like your mantra KILL THIS CANCER. I see my RO and MO next Tuesday the 17th to start the Chemo and radiation. Like my ENT doctor said, without the surgery, I had zero percent, but with it he gained me 5%. I will take my 5%s anyway I can. My DW is so funny, she says, someone has to be in the 5%, why not me.
I seem to be healing well right now, and will start the next round next week. I hope and pray that you came through yours well also.
Male Age 65 non smoker, non drinker T2N1M0 2 Jun 2008 Partial Glossectomy & neck dissection; lymph node tumor right neck 27 Jan 2009 Modified neck dissection, 26 Feb-16 Apr 2009 Erbitux, 9 March - 20 April RT; 11 Sep 2009 lymph node tumor left neck; 4 Nov removal of manubrium and large tumor
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Good luck on Weds, Barry. Go in there fighting.
Keep in touch when you can
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Sue, just checking in with how you're doing. what exactly did they do this time?
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Hi Nancy,
I had two clusters of tumours removed from my right neck and on and under my left jaw. Because my surgeon didn't want to remove too much muscle from my neck he didn't perform a dissection on the right side - just removed the suspect nodes. And I actually didn't get or request details of the pathology.
I start radiation and chemo on the 30th November and have just made a detailed post to try and find out if anyone has done a similar regime - my left side is being reradiated (40 gray) and the right side will recieve a full dose - all within 3 weeks!
On the down side I spent two nights in hospital this week after a bleed in my mouth, which they think was a haematoma or some complication from the neck surgery, which burst out of my tongue. I had horrendous pain when it occurred but am doing fine now.
Sue
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Hi Sue, sorry you have to go through this again. I will check through my husband's notes from a year ago when he was initially evaluated. I seem to think one of the recommendations was radiation twice a day for the last three weeks of treatment as well as chemo once a week.
I blocked a lot of this out but will check. it might also have been part of a clinical trial. I can't believe how much of this I have forgotten. He ended up going for the neck dissection and radiation, chemo was discussed but then decided not to be given since his nodes were neg.
Hope you're doing ok, you're in my thoughts. Wouldn't you think once is enough?!!!
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
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