| | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | this is so fabulous for the both of you. Normalcy is very important to mind set. just goes to show you there is always someone out there to help. hugs...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2012 Posts: 1 Member | | Member
Joined: Jul 2012 Posts: 1 | Hi Gloria:
New here - although a sinus cancer survivor by 7 years - and saw a link to this post on another forum. I know several people that have gone thru the frustration of dilations that didn't last and I'm interested in this option. I don't completely understand how the magnets were used - is there any further documentation? What/where is hospital/practice this done at? Can you reveal the physician's name? Let me know when you get a chance - if this is a viable option I'd truly like to pass this on!
- Jeff | | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | OP Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Jeff, I have sent you a private message. Please check the flashing envelope at the top.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | OP Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | You might have wondered what has happened to the magnets now that the esophagus is open. Well, things took a bit of an unexpected turn -- in a pleasant way. When the magnets were inserted they were attached to some string which was tied to his PEG outside his body. I suppose that would allow the doctor to have some control over the magnets. One day, two weeks after the magnets were put in, John discovered that the string was gone! An X-ray showed no sign of the magnets! John had actually passed the magnets out. So there was no need to bring him I n, put him under, just to get the magnets out. Talk about a minimally invasive procedure!
Last edited by gmcraft; 11-25-2014 08:37 AM. Reason: Typos
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I'm glad to hear things worked their way out. 
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2014 Posts: 8 Member | | Member
Joined: Dec 2014 Posts: 8 | Good info....just found this message and have printed a copy for my radiologist. Sounds very promising! | | | | | Joined: Oct 2015 Posts: 3 Member | | Member
Joined: Oct 2015 Posts: 3 | Hi. I was in this forum from 2005-2008 but dropped out partly due to hubris wrongly thinking my peg tube days were over. Had near total glossectomy in Feb. 2004 w/36 rad treatments Mar-May 2004. Feeding tube inserted Feb 04 remaining until Oct 2007 when the site hemmorhaged and was removed. Fortunately, I had been thru swallow therapy and passed barium swallow test (MBS). So I went on a high calorie liquid diet (used flavorings for taste as it was still there). Was fine until 2013 when I started losing weight. Finally dx of aspiration pneumonia in Feb /2014. Tube inserted. Really took me down a notch. Had 3 EGDs in summer/fall 2014 w/GI doc who said there was an esophagus stricture - he opened to 11 CM and said I could have limited oral intake so I began having a half coffee cup of milkshake in the evening, continuing tube for basic nourishment. Last month (Sep 2015) after passing out, I was diagnosed once more w/pneumonia. I attributed this to the milkshakes I had each night and went off of them. I was not told this was the cause but what else could it be? My GI doc is going to do another EGD next month but I'm not touching anything oral without swallow therapy and more important, passing an MBS. Nearly 80 years old and nearly 12 years a survivor, taking no more chances. So very glad you are able to swallow and I am thankful for the nearly 7 years that I could. Love to know who you GI doc is because I don't think they have a clue here about such out of the box solutions. Stay well and enjoy!
Jim
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | OP Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Jim, we are in Canada and the doctor is with the University Health Network. Opening up the esophagus however does not mean minimize the problem of aspiration. Since February, John has slowly developed silent aspiration and we have been struggling to deal with it.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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