| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I was an experimental trial program at ohio State and I would bet I was a guinea pig. It caused me more than I should have had done , but if it helped learn something for future patients, it's all well and good.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Being a registered Organ Donor, when the time comes and I am passed my 'use by date' they can do what they want to with my parts, hopefully save other lives, but up until then I'm not as giving as you are Jim. I won't be a guinea pig. On request, I did approve the donation of the part of my tongue that had the tumour in it to the medical university. Unfortunately I was not able to use it anymore!!!! Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Karen, I really didn't volunteer to be a guiena pig, just part of an experiment. LOL Live and learn they say and at my age, it's about time to start the "Education of Jim."LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Man you guys are amazing. I can't imagine what I would have done if I had to have the same surgery you guys had to put up with and I thought I had it bad?? Hump, I was a babe in the woods compared to you guys.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Naw david, in this group of ours, there are no babes in the woods Just a rough tough bunch of fight to the end people that are going to win most rounds.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Maybe but I only had to fight for one round and some of you go 16 rounds. No comparison. Jim I think you had Stage 6 and they just haven't figured out how to get other doctors to understand that.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | I just had my surgery on 12.20 & was out of the hospital on 12.25 (Merry Christmas to me!) My staples came out the morning I came home but I still have the tape over the scar. I am dying for it to fall off so I can take a peek. He tried to do it right in the "crease" of my neck. I am hoping vitamin E will help a lot!
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Actually I was surprised even with having an infection in the scar healing is really good a lot of people don't even realize or see it unless I point it out...I think for the most part if they can hide it they do. They are fantastic... I know my doctor was!!! My doctor wouldn't let me use vitamin E for a while until the scar actually closed I am not sure why but I think my nurse told me. But I forgot just knew not to use it right away I do now though on all scars and it is helping. Then I went to the mall around christmas and there was a kiosk who sold cream to heal scars for the rich and famous...$60 for a tube the size of a lip balm...there are all kinds of things out there that help but I truly think you will be pleasantly surprised. Besides whats the heck I consider them my battle wounds of the war waged against my body and wear them proudly. For me I don't think I want them to go away totally keeps me humble..
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Feb 2009 Posts: 20 Member | | Member
Joined: Feb 2009 Posts: 20 | I just found this post. My father had right side neck dissection on Feb 9. They found a spot on his tongue was cancer and a scan found 'something' in his nodes. Immediately scheduled surgery and doctor said no chemo or radiation needed. I wish I would have had more information then because he just went with it and he wasn't at a cancer center, went to Otolaryngology Associates. Ear, Nose & Throat Medicine and Surgery and Head and Neck, Cosmetic & Reconstructive Facial Surgery. My father is recovering well and evidentely they removed all of the cancer, but I have no details on Stage (Dad just said Stage 1), how many nodes were removed, how many of them were cancer, what the margins were, why they decided to just have surgery, etc. I gave my dad a list of questions to take and ask the dr, but dad said that the doctor was going to e-mail him the answers and I haven't got the answers from my father yet, if he's gotten them from the dr. I'm pleased with the outcome, but I wish we would have had more information and options given to us. There's another side to the contraversy. | | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | My boyfriend had a modified neck dissection, from what i gather, what makes it modified is that they kept the big muscle.
He was also of unknown primary although they did suspect the left tonsil (he also had that tonsil and a bit of the tongue removed but not much). he had a positive node but only one.
He had radiation that was part of a trial, targeting the whole area of neck nose throat and back of head, this type of radiation was also meant to minimise the long term damage to the taste buds and saliva glands. the latter seem to come back and go away especially the saliva, but it seems to be better now.
His neck is now un-numbing and is sore. he is going to ask for physio this week as the pain is pulling him forward and side ways, which is terrible for his back.
They didn't give us a choice for the radiation, well not a choice as such it was you either do this or your cancer will spread and ....
Needless to say we chose the neck dissection and radiotherapy.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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