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gmcraft Offline OP
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I would like to share this information with people who may have strictures post radiation.

Problem: John had serious scarring in his esophagus after radiation to the extent that he could not even swallow his own saliva.

Previous attempts at treatment:
- The gastroenterologist attempted to give him a gastroscopy but failed. We were told that there was nothing he could do.
- Two swallowing tests with a speech and language pathologist showed that nothing was going down the esophagus.
- The interventional radiologist tried to open up the esophagus using the balloon but failed because he could not even find a tiny opening to put a wire in.

New procedure: The interventional radiologist put in two magnets above and below the strictures and left the magnets to do their work. There was no cutting, no bleeding involved. After two weeks the magnets created a channel and John is now able to drink all liquids. This will be followed by gradual dilatation to further open up the esophagus so that he will be able to swallow soft food.

As far as the doctors know, John is the first person in the world to have this procedure. Their intention is to publish the findings and present this at conferences so that other patients can get similar help.

John has been on a PEG tube for two whole years and this procedure has improved his quality of life in a really major way. He found an interventional radiologist who was willing to think outside the box and to experiment because John asked around again and again. He just would not accept the fact that he could not swallow. So, his persistence has paid off.


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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That is great news! I hope this can help a lot more.

NEVER GIVE UP!!


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
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Thanks! It is wonderful to get reports of very new treatments that work. Hope this gets into the mainstream standard of care options someday.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Thanks for sharing this with fellow OCF members! its always great hearing of such a huge turn around with a new procedure. Congrats to John!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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gmcraft Offline OP
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Thanks Christine, Don and Uptown. I, too, hope that this will become the go-to treatment for people with strictures in their esophagus post radiation. I had actually taken as fact that John would never eat/drink again. Yesterday I was able to take out my smoothie recipes and had John pick out the ones he would like to try. What a wonderful moment that was! We are planning to give Christine's peanut butter smoothie a try at some point.

I also have to mention that John is still getting chemo. Because the procedure is not really invasive, the interventional radiologist was able to do it during the three weeks between chemo doses even when John's white blood count was low (1.3). Our MO is totally in support of the effort and was in contact with the IR about the arrangements. We are truly lucky to have these doctors.


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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What a beautiful story! In the midst of it all, glimmers of hope are sometimes the best medicine. I wish for you many more days and times like this. Never give up!


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: Nov 2006
Posts: 2,671
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Gloria - What wonderful news about John and this new treatment! Stories like this is one of the main reasons I keep coming back to OCF because there is always something new and hopeful to learn about which can benefit so many!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Gloria - I was SO HAPPY to read your post about the novel approach and great success you and John have had with this procedure. How wonderful it must feel for John to swallow after so much time has passed!

While there is very little good that comes from having cancer, we all hope that in some small way we are making it easier for others who might travel this path we are on. John is certainly doing that - with his persistence, he is contributing in a BIG way!

My very best to both of you,
Nancy


Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
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Wow, that is great news!
Will they increase the size of the magnets so he may eventually be able to keep the esophagus open and eat some soft foods?
None of my dilations have helped for more than a few weeks.
This sounds promising!
Thank you for sharing !
Cindy


'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)

Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness."
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gmcraft Offline OP
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Hi Cindy, the magnets are used for opening up the blocked esophagus. Now that it is opened, John has to have gradual dilations to open it up further and to keep it open. Today the doctor told me that the only way to keep the esophagus open is to put in a temporary stent until everything around it heals. He hasn't done it so far because today John only had his first dilatation. The IR wants to see how much narrowing happens between now and the next dilation before he decides. His reason for the wait-and-see is that a stent in the esophagus opening may cause a choking sensation and he wants to avoid it if he can.

Anne Marie and Nancy14, it was so great to hear from you.


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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