#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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#23583 06-27-2007 04:06 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hello EZJim
I responded to your "posted topic / E-mail address" I will cut and past it here as I know you are new to the OCF.
Responded: 6-27-07 12:17 AM
Welcome EzJim
This will help you put your E-mail address in your profile and anyone can send you one.
ABOUT PRIVATE MESSAGES (PM) AND E-MAIL SET-UP
TO READ AN INCOMMING PM:
ACI also sent you a test
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23584 06-27-2007 05:14 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Petey............I KNOW you are just trying to help and I truly love you for it BUT...........if I were new on this board all that info you just posted to the new poster would simply overwhelm me! Let's let the poster get their initial fears out to us and let them spill their anxieties to us before we ask anything OF them. I'm ok with them not being set up for PM's, with their email addresses not being available and with them not having their official diagnosis in their signature. Am I making sense?
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#23585 06-27-2007 07:52 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Peter, please listen to Minnie! If I had read that when I first came here, scared to death, even though I was a computer professional, I would have left PDQ and looked for a friendlier place that did not suggest so many non-cancer related actions. | | |
#23586 06-27-2007 09:22 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Dear Joanna & Minniea Please read your PM(Joannna)& E-mail (minniea). I was only answering the "FIRST" post I read from EZJim. I am very aware of how people feel when they come here! I have only recieved "THANK YOU'S" FROM PEOPLE I HAVE RESPONDED TO...... The only negatives were from people who the messages were not intended for. While I'm venting here. A lot of people do not even answer peoples most important question. They see one thing that jumps out at them and do not read the rest of the posts. RANT OVER, GOOD NIGHT! PETEY PS:Here is the post I responded to...... http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/2/t/000980.html
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23587 06-30-2007 04:50 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Dear Joanna and Minniea
The 2 days the system was down was killing me as I wanted to apologize for my above obtuse response.
You are both correct and I'm not totally wrong. 90% to 10% in your favor.
EZJim
Sorry to "impose" on your thread. I hope all is well.
Sincerely, Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23588 06-30-2007 08:18 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 | I want to thank Petey for his quick response and good answers. He does seem well versed on this topic..Now If only the Drs would give me a prescription that would ease this pain until I have surgery. Nothing has helped the pain in the left side of mt face. Tongue, neck, left ear , left eye seem to have their own private war going on.. 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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