#95491 05-14-2009 07:36 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Does anyone know of any good websites for esophageal cancer? My son's best friend was just diagnosed. It's stage 3, which I know can't be too good. I saw a couple posts where people mentioned it and I saw Brian's answer that it was a different type of cancer and not addressed on this site, but didn't see if anyone mentioned any other sites or had any other helpful info. Thanks in advance.  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Sorry Rosie, can't help you out with this.
Just wanted to take the opportunity to tell you that you will NEVER be forgotten. It's nice to see you around.
Hope you are doing well.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Hi Jerry,
I'm doing okay, but had a bit of a shock when checking here for info on esophageal cancer. Read about the chronic GERD generating Barrett's esophagus. I have GERD and have been taking generic Prilosec for about 4 years now. I had to start to get B-12 shots and take folic acid because of the meds, now may have to get scoped, too!?! Man, really makes me want to take more meds!
Guess I really need to lose some weight and try to get it under control without meds. Man, just when I was starting to lose some of the paranoia about getting oral cancer. Now I have to worry about esophageal cancer! What a bummer.
Anyway, how have you been? I saw a bit of your post about office friends having cancer and your possibly postponed retirement. I am so sorry. It just never seems to stop. You pick yourself up and something else comes along to knock you down.
I hope your friends do well. And I sincerely hope you get to retire with very little part-time work being necessary.
Sorry I missed donating for your NY Walks the last couple years. I don't come to the forums much anymore and forgot all about it. I do donate directly to OCF, but would have made the donations with you had I remembered. Sorry.
Take care,
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I second Jerry's NEVER comment.
As to cancer of the esophagus, there are no websites that I know of. But having said that, I have been here done that. Had a portion of mine taken out a couple of years ago after chronic GERD/reflux disease caused me to develop Barrett's, and eventually and adenocarcinoma. Surgery, no other treatments, and they did a fundoplication while they were there to help control the amount of acid that gets out of my stomach. It is one of the fastest growing caners in the US today. Deadly if you don't catch it early. Since I get an annual upper endoscopy for my severe GERD, we were watching for it and through a simple biopsy during one of the procedures identified a small start up in the Barrett's area, and dealt with it. Ain't it fun living on proton pump inhibitors, and OTC anti-acid meds......
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Rosie, I have had surgey in 1999 for an esopghagus that looks like ulcerated live, nasty looking thing. For the surgery. they wrap 1/3rd of your stomache around your esophagus, One sure thing is you never vomit again, There are imes when you wish you could and it makes you miserable. The barretts can raise it's head at anytime and be cancer so I get scoped every 3 months and the Dr takes biopsies al the way down my throat. THe pain never lets up altho at times it hurts more thn others, I still have to take zantac and a little Mylanta or it hurts some. In fact I go for a cope this Monday and it is scheduled for 10:15. They consider this surgery and you are put to sleep. I hope your friend can have this surgery as I did. It's called Nissen Fundiplication and after your stomache looks like you got shot a few times with the scars it leaves.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Rosie,
Just wanted to say hello and hope you are doing well. I too am on Zantac or Prevacid to prevent barrets esophagus. Prilosec gave me such gas I was doubled over in pain. They tell me I have GERD but I don't feel it. I do sleep on my left side because of a mild hiatal hernia which will give me GERD if I sleep on my right. Hope you can keep yours under control with meds and have them watch it. You know the routine. Hope your son's friend does well.
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
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Hi Rosie # Esophageal Cancer Awareness Promotes quality of life for people affected by esophageal cancer www.ecaware.org# Esophageal Cancer Cafe Provides support and information for esophageal cancer patients www.eccafe.orgTake Care ! Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 do believe Haital hernia is all part of the gerd and reflux.
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: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Hi everyone, Thanks to all of you for the links and info. I will pass them on. I knew I could count on you guys to come through! EzJim, you sure are one tough cookie. Glad to see you're still around and active on the forums. I need to try to come visit here more often. Rainbows and hugs to all!
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Rosie, I thought you were gonna say come visit me. LOL Nice to see you here too.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez rosie, In the morning I get to go to the hospital , go to sleep and let them go down my throat taking biopsies again. Dr is worried because we couldn't do them every 3 months like he wanted baecause an the aneurysm and cancer biopsies
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | .......You'll be in my thoughts, friend. May you wake up and hear the all-clear! XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | 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 get the results the 28th. Sure do have a sore throat going on. On down it feels fine. This is the surgeon that found my OC.
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 | Jim,
I thought you just got an "all clear" a couple of weeks ago?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David, that was for OC not the esophagus. I been fighting this stuff since 1996.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Man Jim, you have issues. lol Just kidding now and you know I wish nothing but the best for you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ 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 | I know David and thank you for caring.
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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