| Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Jimbo3, is it correct for me to guess that the scarring has closed the esophagus so that the GI could not get a wire in to open it up? John's esophagus was totally closed for two whole years due to scarring and was opened up recently when our interventional radiologist performed a new procedure on him. You can read about the details in here http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=186296#Post186296If you are interested in the procedure and would like to have the name of the hospital and the doctor, please PM me. Your GI may want to consult our doctor. My understanding is because John was the first person in the world to receive the procedure, it has not been published yet. I do know the doctor will be presenting the technique at an endoscopy conference in Europe. With the passage of time, you may lose even the little ability you have of swallowing as more scarring occurs.
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 2014 Posts: 8 Member | OP Member Joined: Dec 2014 Posts: 8 | Gmcraft...thank you for the response. I am not sure why the procedure could not be completed. (I will get a copy of medical procedure record). My wife and I assumed that the esophagus had "shrunk" to the point that the instruments could not go in--or--the tissue was so fibrotic that it could not be dilated. Glad you raised the question. I will read up on the procedure that John had. Maybe the GI docs here are not aware of it. Question: was John on a feeding tube while his esophagus was closed? IF so, what kind (PEG or NG)? | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Jimbo3, John was on a PEG from the third week of treatment. As far as I understand, the scarring from the radiation creates strictures in the esophagus and that causes the swallowing problems. The scarring seems to take a long time, way after the surface burns on the skin of the neck has healed.
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 2014 Posts: 8 Member | OP Member Joined: Dec 2014 Posts: 8 | Gloria...appreciate your comments. I had a total of 38 radiation treatments; last one was on March 17, 2014. The last session was called a "boost" and took about 4 times as long as each of the other sessions. The way I understand it, my esophagus is "narrowing" due to the radiation scarring. My fear is that it may eventually close off completely--leaving me with a permanent PEG tube. Will just have to wait and see...but in the meanwhile I plan to live each day as normally and as sane as I can. I don't chat much in here but the group's comments on many aspects of our disease is really educating me to many topics.
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Hey Jimbob3, just wanted to say "Welcome" and share in your joy of the "No new cancer" scan you had! That's awesome! Looking forward to hearing more from you. Warm Wishes.
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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