#23573 06-26-2007 11:38 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | EZJim posted this under the Survivor Forum and I was afraid he wouldn't get any responses:
I was diagnosed with oral Cancer involving my tongue, floor of my mouth, throat and maybe my vocal chords. I have had my esophagus operated on for Barretts Esophagus and an abdominal arotic anneurysm repaired. These 2 I handled pretty well. The oral cancer has me wondering. I wonder how long it will be before i can eat and talk normally again. I have 1 more MRI to get the 5th of July and surgery scheduled for the 13th of July. I know most of you have been thru it and can give me some support. I am 71 yrs old and keep hearing about how good I look and I just couldn't have anything wrong. These are people that don't understand what it's like to be a good actor. Any advice any of you can give me would sure be appreciated and I will be very grateful for it. I hope you all recover good and have a great day all.
-------------------- Jim
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#23574 06-26-2007 11:40 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jim,
What additional surgery is scheduled July 13th?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#23575 06-26-2007 01:17 PM | 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 haven't had surgery on the oral yet. I had a CD of an MRI and a CD of a Pet Scan that I took with me to Dr in Morgantown, WVA. I guess they weren't as clear as the Dr wanted because he said he can see more by looking in my mouth than the scans showed. I go the 5th of July to Morgantown to get another MRI and see 2 more Drs.
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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#23576 06-26-2007 02:42 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi, Jim, I'm taking a guess here that you might be retired [I sure hope to be at 71 ] Do you have a support system that can be with you during treatent? Is someone going to your Doc appts. with you-for a 2nd pair of ears-? As soon as you know your tx protocol and can post it, then folks here can give you alot of helpful information. Sending you Best luck with this and keep talking to us. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#23577 06-26-2007 02:50 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Jim, I have no idea where Morgantown, WVA is, but it doesn't sound like it has a major Comprehensive Cancer Center. Are you being treated at CCC center with a full cancer board? If not, I would go the one closest to you for a primary opinion and then maybe to one of the best for a second opinion. It sounds like your cancer is extensive and you need the best treatment center available.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#23578 06-27-2007 01:17 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jim,
Your beginning post above says that surgery is scheduled July 13th. That's what I was asking....what surgery?
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.
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#23579 06-27-2007 02:25 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | The surgery is on my tongue, probably about 1/2 of it, I have nodules in my throat , 2 spots on my vocal chords and my left ear are involved. THe Dr will also take the floor of my mouth under my tongue and do a skin graft using skin from my leg. I'll know more after the MRI on the 5th. Thanks for being interested.
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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#23580 06-27-2007 02:31 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Eileen, Morgantown WVA is the home for West Virginia University. The Drs there are supposed to be well versed on Cancer and it's treatment. I sure hope they are because Ohio State University Hospital is just a couple of hours from my home. Have a great day.
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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#23581 06-27-2007 02:34 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Jam, my Daughter is a critical care Nurse and she goes with me to appointments. She not only listens , but asks a lot of questions. And yes I am retired. LIke they say, the golden years. Oh Yea
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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#23582 06-27-2007 02:52 AM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2007 Posts: 168 | Hey Jim. I would definately be aggressive with this and get a couple of opinions on treatment. Keep your spirits up and we'll help with what we can. Lee
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you. Lee
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