| | Joined: Jul 2013 Posts: 24 Member | OP  Member
Joined: Jul 2013 Posts: 24 | I just found this site today and sure wish I had known about it last year. It's been a rough and crazy journey to this point and I know it's not over yet. I found this site when goggling about granulating tissue around my PEG tube. I'm a little over a year out from my surgery and still having quite a few problems. I could use some helpful information on quite a few things and hope to find that here.
Thanks
Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)
Blessed and Very Much So
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF, Sandy. There is lots of experience here so you are sure to get many of your questions answered by someone who has already dealt with the various issues. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | 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 | Sandra,
Congrats on the NED and welcome to this site.
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: 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 | Welcome to OCF! Im sure we will be able to help you with your ongoing issues. Ive use a feeding tube for several years, I will be happy to help you with your concerns.
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  | | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Hi Sandra, and welcome! There's lots of great advice, ideas and compassion here for you.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Jul 2013 Posts: 24 Member | | OP Member
Joined: Jul 2013 Posts: 24 | Thank you for the encouragement. Christine, you may regret the offer of help! :-) So much information here to look at but then I'm sure I'll have many questions.
Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)
Blessed and Very Much So
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Sandra, welcome to the family. We're all here for help and support. Congrats on your recent scans!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2013 Posts: 24 Member | | OP Member
Joined: Jul 2013 Posts: 24 | I should have been more specific on all of my information when I posted the first time.
I was diagnosed in May of last year after 2 core biopsies were done in the roof of my mouth. (SCC) I had a PET scan praying that it was confined to the mouth area and hadn't traveled to my lungs. Thankfully it was in my mouth and neck area only. The folks at our local Radiology clinic had told us that this was a stage 2 cancer. Within a week I was at UAB hospital in Birmingham, AL at the ENT clinic seeing Dr. Scott Magnuson.
He started explaining everything that they would have to do and we really got an information overload. To get their entire team together with the reconstruction team was to take a while and the surgery wasn't scheduled until June 20. After 9 1/2 hours of surgery and 8 days in the hospital I was sent home to let everything in my mouth heal before getting ready for the chemo/radiation that was next. I had to have over half of the roof of my mouth along with bone out, neck dissection with lymph nodes in both sides involved. They took a flap of skin, bone and artery from my left arm and a skin graft from my left thigh to reconstruct the inside of my mouth. Oh, they also took all my teeth. It was also staged at a 4+, how the first RO was so off, we don't know, inexperience, lack of knowledge? Just glad we were sent on to the best people for the job!
In August when they were preparing everything for me to begin my treatments, they found problems, did another PET scan and found the cancer was back with a vengeance, in my mouth and again in my neck and also at the back of my tongue. So soon after my first surgery there wasn't anything they could do at the time but amp up the radiation they were planning. I had 3 chemo treatments in conjunction with my 35 radiation treatments. I started with cisplatin but that messed up my blood counts so the last two were carboplatin. I had a lot of trouble with nausea and vomiting and almost dehydrated on a few occasions. Finally graduated with a lot of issues.
I've had a lot of problems with swallowing. The lack of saliva has naturally, complicated it even more. Last week they checked my throat and found a web of tissue, they think scar tissue, with a very small opening. It was stretched and they think it should help when the swelling goes down. I have a lot of problem with anything other than liquid. I'm doing a little better with thicker broths and such now but can't do much with anything else. Particles are especially hard for me to deal with. Do you have any advice on this? I can do ice cream, shakes and the broths/soups of like chunky chicken pot pie soup. I'm beginning to do a little with very soft vegetables but still having trouble with that. I'm dependent on my PEG tube for the most of my nutrition with usually one nutritional shake a day. I really want to get rid of the Peg but know it's there until I can eat enough to hold my weight and I get very frustrated because I can't eat. Don't get me wrong...I'm very thankful and blessed to be alive and I know that. If I have to keep the PEG the rest of my life I at least have a rest of my life to have it. I've also had a problem with granulation tissue underneath my tube. Went to the Dr. Monday and they used silver nitrate to hopefully take care of that.
Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)
Blessed and Very Much So
| | | | | 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 | Sandra,
I can't offer the advice you are looking for but I'm sure you will hear from plenty of people soon.
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 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Welcome Sandra, I am a tongue cancer survivor, had about 70% or more of my tongue removed. When I started to try to learn to eat. I purraid my food to about the constancy of a shake. So things like chilli, or ravioli, or vegtable beef stew, mashed potatoes and gravy etc I was lucky enough to have a vitamix but man I was in heaven. Then once I could handle that, I went to buffet resturants as much as I could so I could experiment with diffrent textures, flavors etc. These two things really helped me to start eating again. It sounds like you may have more issues but I guess I am trying to say, Dont' give up!
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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