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#189088 04-09-2015 06:53 AM
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gmcraft Offline OP
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John has just signed up for a Phase 2 trial of the Selective Inhibitor of Nuclear Export (KPT-330). The study drug works by trapping the "tumor suppressing proteins" within the cell and so causing the cancer cells to die or stop growing. It is a kind of targeted therapy. The team is aiming for John to start on April 20.

In the meantime, John had his PEG removed yesterday (hooray!) after two and a half years. It was a day that, had I been asked six months ago, I would have say would never come. So far, John has had six dilatations done on his esophagus. He is eating everything by mouth and, with the advice and support from a dietitian, is maintaining his weight. At his swallowing test two months ago, the SLP was very impressed with the fact that John had kept his swallowing muscles working by doing his swallowing exercises daily even though he was tube-dependent. We have been speaking to all the medical people we know about the new procedure and the good work that the interventional radiologist has done. I actually went and told John's RO that he, of all people, really needed to know about the procedure and to encourage patients not to just give up and go away.

I think what bothers me the most in all this is the fact that doctors keep telling me that not very many people lose the ability to swallow that way John has. That has not been what I have heard on this forum and from other patients I have met at the hospital. It appears to me that more often than not, doctors tell patients that nothing can be done and the patients just go away and live with a PEG for life. At the very beginning of our ordeal, at the time when it was still possible to get a wire down, a surgical oncologist flatly refused to even consider giving John a dilatation because he said the esophagus would inevitably close up again, so he wasn't going to spend the time doing multiple dilatations.

Since I spoke to the RO, I have heard that they have referred a couple more patients to the interventional radiologist, so I hope the word is spreading.

I will update when the trial begins and let you know how we are getting on. Thanks for letting me vent a bit.


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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See that irritates me. The reality is that most of the drs have never had to go through anything like their patients do, as such instead of stepping outside the comfort of their own little knowledge boxes they prefer to quote the standard as opposed to trying something different.

hugs and hoping that he does well on this new trial.



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
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Best wishes with the trial. I checked it out and the phase 1 data looks really good.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Thanks for the update. I hope the new drug is effective.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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Hi Gloria, I am pretty clueless when it comes to esophagus dilation. What kind of symptoms/patients should consider getting this done?

Would someone who is starting to struggle with swallowing (needing to force, making sound effects to swallow at times during every meal)?
Or someone who coughs up bits of food regularly to prevent aspiration?
Stephen's fibrosis is getting progressivly tighter in the past 6 months, he mentions there is a pain aspect that wasn't there before.
I am guessing this proceedure is for more severe/pronounced narrowing of the esophagus.

Thanks for sharing and advocating, Sophie


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
Joined: Mar 2014
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This is excellent news -- I wish you both the very best on this trial.

I am so glad John had his PEG finally removed -- I know this has been such a trial. It is such an unfair shame that you guys had to go through so much on this but I am glad he is finally free of the tube. I hated mine so much I could not stand it so I can empathize.

Keep us updated on the trial -- best of luck! These targeted therapies are the bees' knees -- I am very hopeful for you guys!!

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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gmcraft Offline OP
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Hi Sophie, sorry I missed your post and did not respond sooner. John's esophagus was totally blocked after radiation, he could not even swallow his own saliva. However, even at ten weeks post radiation, the doctors were saying to us to not be impatient and that the best help for swallow was to swallow. We finally got him a barium swallowing test which showed that he was not swallowing anything.

Given Stephen's symptoms, I would think the first step is to get a barium swallowing test. The doctors may then decide to perform a dilatation or have him work with a speech and language pathologist on swallowing techniques. The fibrosis can get worse as the internal scarring continues. (Yes, it takes a few months for the scarring to happen.).

In Ontario, it takes ten to twelve weeks to get a barium swallowing test. I strongly recommend that you start the process ASAP. Try to get yourselves on the cancellation list if you can manage to go at the drop of a hat. That way you may get lucky and get in early. If Stephen is coughing up bits of food, he is having difficulty getting them down.


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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Thank you Gloria, I will get him signed up for a barrium test. Smart to plan ahead, at least this way we will know where we stand.

I am also greatful John has access to what sounds like a cutting edge trial.

Wow and good on you guys for doing the swallowing exercises. Its amazing that John can swallow after almost two and a half years of being on a PEG. This will give so many people hope and determination.

Please keep sharing
ps:Stephen is flying into Toronto tomorrow to be represented by a gallery on Young St.


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
Joined: Jan 2013
Posts: 80
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Hi Gloria,

So sorry I missed this earlier posting of yours -- Hurray for John having his PEG tube removed!!! I know he did a good job with it, but he must feel so good without it. I remember when mine came out (ouch!!) - it was so good to shower without it and not worry about tugging on the tubing.

Best regards,
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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gmcraft Offline OP
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Update after two cycles of trial meds:

So we met with the MO yesterday to go over the results of the first CT scan; unfortunately, the report with tumour measurements was still not in; however, we were told that the largest mass in the lungs looks smaller. I would like to think that this indicates that the trial drug has had some effects. So we press on.

This has been a rather rough two months for John. He had had some postural hypotension before the trial started, but during the trial it became quite significant. My own observations told me that it usually happened on the days when John was off dexamethasone. I made up a spreadsheet showing the twice daily postural BP results and highlighted the days when he wasn't getting dexamethasone. The numbers actually showed that most of the low BP (below 60) occurred during that period. The doctor has now prescribed florinef and how, a month later, the BP seems to have stabilized.

At the same time, after two months, John's stoma still hasn't healed completely. It was leaking and worse, he was getting burned by the stomach fluids. We saw the doctor who performed the magnet procedure yesterday. He will book John in for an endoscopy so that he can go in and put clips to help the opening in the stomach close. A wound nurse who saw John a month ago suggested gluing the stoma but the IR told us yesterday that it was not a viable option as the pressure was coming from the inside, gluing the outside will not help matters at all. I do have to say that even with some leakage, the stoma now measures only 1 to 1 1/2 mm which means it has closed quite well up to a point.

With all the drama, I am happy to report that John still has a positive attitude. He is able to to keep his weight at 182 lbs though he does call me the food police. My therapist told me at my last visit that every moment of happiness makes it worthwhile. I think this is truly insightful as on reflection, it is the many moments of happiness that have helped us cope.


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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