| | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Well, I honestly cannot believe that I am writing this again but I am. Here goes: saw my doctors today that will be doing my surgery on February 7th. Dr. Ord will remove the cancer which is way in the back left side again, and his associate will be working on my jaw. Replacing it because it is deteriorating,I have ORN. I am scared! Apparently, it is from the radiation. I will have a cat scan and MRI done on Friday.
The Doctors (they are wonderful by the way) talked with me and my husband for an hour, trying to answer any questions we have. They will take bone from my leg to use for my jaw. Surgery will last 10-12 hours, will have a trach again and have a feeding tube put in prior to surgery. Oral cancer has become a chronic problem for me. Praying it all works.
I wish you all well and thank you for listening. If you have had positive experiences with this or can think of any questions I should ask, let me know. Thanks!
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 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hi Carol, I am so sorry you are going thru this again. Please know I am thinking of you and sending good wishes your way.
Take care of yourself!!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | 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 | Dear Carol,
What an awful (and as you say chronic) journey starting in 2002 that you have had with this awful disease
You have every reason to be scared my friend.
One consolation is that you have those wonderful doctors that you have faith in. It makes a big difference.
Your situation is not something I have experience with but I know there are some members here who have been through your surgery or similar.
You will be in my thoughts for your Friday tests and Feb 7th surgery.
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: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thank you Susan and Gabe! Sitting here feeling sorry for myself....wishing I were in Carmel, Ca. rather than Baltimore trying to cope with cancer again and losing my jaw.
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 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Carol,
I'm praying for you! I went through the same surgery and although it's not pleasant, it's totally doable. I'll be praying for peace for you and your family.
Do you know how long they will keep you asleep after surgery is done? Overnight, a few days? I was kept asleep for a day. Will they have to do a skin graft over your leg?
Please don't hesitate to ask any questions.
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Carol, very sorry to hear of your news. I just wanted to add on to what Christine said about bulking up. I lost way too much weight during treatmnet. The docs were concerned and had me pour more food down the ped theg start eating when I could. Nithing seemed to work. I went to a muscle mag and and ordered some of the weight gain protine powder that these bulky guys use. I did get some stuff called "Russian Bear 5000" It has a whopping 5000 cal in a days serving, I also got and still use something called MeTrx. It is a powder you mix with milk and has about 550 cals per 16 oz. Well balance and maybe less costly than Ensure plus.
I did start to gain weight almost imediatly
Good luck on your new adventure, we are all pulling for you
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Yes, they are concerned about my weight, I am 5' 8" and 130 lbs. Doesn't seem that bad to me. I bought some stuff from GNC called Spiru-Soy, mixing it in lactaid milk and lactose free ice cream....not bad...if anyone knows of anything else without milk, let me know....Thanks!
Get Catscans, MRI and blood work tomorrow, just hoping everything works out as they are planning.....surgery on Feburary 7th, gotta tell you all, I am scared!
p.s. they are putting in a peg prior to my surgery, never had one, don't know if that is good or not, oh wait I did have one in my nose last surgery and I don't want that again. not good. Thanks all! I really appreciate your comments!
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: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | pss. I love milk but all of a sudden milk doesn't like me, really missing my ice cream!
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: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Carol--lots of prayers and keep your courage up. Your struggle is an inspiration. Are you by any chance being treated at Hopkins? I was diagnosed june 2010 and finished in September/was at Hopkins/only I know I'm really not finished.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Come on Carol, you can do it!!! Im rooting you on to gain a few pounds. Try adding more ensure, just 2 extra cans a day will help. Maybe try a hot fudge sundae, YUM!!! How about some fattening cream soups, mashed potatoes with lots of butter and gravy, or canned peaches.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | |
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