#97817 06-21-2009 05:54 PM | Joined: Jun 2009 Posts: 7 Member | OP  Member
Joined: Jun 2009 Posts: 7 | My husband Jim was diagnosed in May with BOT cancer. Since he does not use a computer, I will be using this site. Jim had suffered with sore throats for about a year but neither his dentist or internist could see it. He had an MRI in 08/08 that was read as being scarring and calcifications. He began to have pain in his ear and some other symptoms. He went to an ENT doc for problems with his hearing and asked him to check his throat. He saw something near his tonsil that looked suspicious and biopsied it. The pathologist report came back SCC Stage 2. After waiting for them to get something going, we finally changed doctors and they really got things moving. He has a PEG and Port and has started treatment with some really great doctors, chemo, radiation, and ENT. Jim is 62, non-smoker, non-drinker, but was heavily exposed to Agent Orange in Vietnam. I am hoping to find how we can both deal with all of this and look forward to advice.
Pam
Diagnosed 05/09
PET clear 05/09 has not spread to lymph nodes
39 radiation scheduled, 8 completed
Cisplatin & Taxotere, 2 months scheduled, 1st & 2nd treatments finished
SCC Basaloid Features, BOT, T2M0N0 G3/3
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Welcome aboard and sorry you had to find this site. You will get lots of good advice here. My suggestion for starters is to look at the list of forums and find the "Getting Through It Project" at the bottom of the list. Click on "Draft Copy". This document has a wealth of information from those who have been there and it educated me very quickly as a caregiver. Also throw out any questions you have - answers come quickly here. Good luck to you both!
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Welcome to OCF. You will get a lot of encouragement from this place. I know I have. It has been my second home. I am on here everyday. Sorry that you had to join us.
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: 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 | Pam, a warm welcome to you and your husband Jim. You will find so much support here to help you both thru this. As a caregiver, your job isnt easy. Its a long rough battle, but it can be done.
Glad to hear your husband has a port and peg. Its still very important to keep swallowing thru this and stretch his mouth open as wide as possible several times per day. By doing these things it will prevent bigger problems down the road.
When yo have questions, please feel free to ask. We are here for both of you. best of luck with everything.
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: 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 | Agent Orange has never been linked to SCC but you might want to read up on HPV and asked to be tested for it. You have found a tremendous site that will prove extremely valuable through out his Tx and recovery. As a Caregiver you will also have issues and this site will be helpful to you as well.
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: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | 1st thank your husband for his service to our country for me!! Welcome aboard, dont be shy about asking these guys any and all questions you and he might have. Your husband needs to get his combat thinking back as this is a hard fight you both are about to engage in!! Good Luck. Seper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Wecome to our home Pam and Jim. You have the right 1st name to be a fighter LOL This is the best place to be and visit often when this garbage sneaks up on you. Some of us have had a rough go and some fairly easy, but even the easy is very tough,. Ask any questions that come to mind and I am sure they will get answered and by more than one. Dang, forgot to say nice to meet you. I have that name too Jim but have had it for 11 more years than you have so far, 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
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