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gmcraft #197073 09-03-2018 03:14 PM
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MarvB Offline OP
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Hi Gloria,

I'm sorry to hear about your husbands esophagus. I've noticed that I have more trouble swallowing water as time goes on and have persistant, naging cough because saliva gets stuck in one spot in my throat. I think it started from trach damage and the radiation is making it worse. Since radiation, the swelling of my tongue and the floor of my mouth, along with the bad taste made my decision to have a PEG tube installed. I started losing weight once this PEG was installed. Bosst VHC helped slow down the weight loss but, I found a product that's great for people going through this. It's Scandi shake mix. It can be purchased at Walmart on line. My wife combines them with some of the high calorie Hungry Man TV dinners and with canned chicken, kayro syrup, canned chicken, sweet  potatoes, yogurt, etc. She makes it in three meals per combination. I get three meals out of it that are around 800 calories each and loaded with protein. Unfortunately, it was a recent find. Fortunately, my weight is holding and increasing slightly now. I would recommend it to anyone who needs to add weight.

Marv


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MarvB #197075 09-03-2018 06:04 PM
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Well, your wife must be commended for her creativity. When I made shakes for John I put in ice cream, fruit but never canned chicken, etc. come to think of it, why not? Do let us know how that has helped you in keeping your weight up in the long run. Maybe it’s something that others can do too.


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.
MarvB #197079 09-04-2018 06:46 AM
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MarvB Offline OP
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Hi Gloria,

So far,I haven't lost weight since she started doing these meals. Not even through the vomiting from Chemo. Also, I have a very sensitiveness stomach. None of the premix foods set well with me. They either caused nausea or diarrhea. Eating "regular" food has been great for solving those problems too. If anyone wants, I can list a few of the mixtures she uses. You do need a good blender to pulverize it.

Marv


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MarvB #197080 09-04-2018 09:18 AM
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I agree.. it has to go through a good blender to ensure there’s no blockage in the tube.


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.
MarvB #197106 09-09-2018 06:18 AM
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Well, Monday is my last radiation treatment and I was just assigned to a different radiologist because other one left there. The new radiologist did something my previous radiologist never did. She actually examined my tongue where the tumor is. She also went over the CT scans used for alignment of the radiation. She concluded that the chemo and radiation had not worked. She sent us to see the oncologist immediately. He look at her findings and agreed. They decided to start me on immunotherapy with Opivo in a few weeks. The chances of it working are very low but it's the best option I have. If it doesn't work and I'm still around, they will try to get me into one of their clinical trials there at the hospital. If that doesn't work......................

Anyway, that's the latest news from me. If anyone else has had immunotherapy I would like to hear how it went.

Thanks for reading this,
Marv


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MarvB #197110 09-09-2018 05:17 PM
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Marv, I do know several who have been treated successfully with the Opdivo/Keytruda immunotherapy drugs. Unfortunately, I do know of others who this has not worked for them. For some of the patients who have passed away, the new immunotherapy meds allowed them to have some precious quality time by extending their life by several months/years. Hoping you become another patient who reports success with the new immunotherapy treatments work for.

Please keep us posted!!! I know Ive been following your journey and appreciate any updates you share with us. Best of luck with everything!!!


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
MarvB #197114 09-10-2018 05:46 AM
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Marv,

As you probably know by now, my husband John was in the Phase 1 trial for PDL-1. I assume it’s a smaller dose than what you might get, because the purpose in a Phase 1 trial is to ascertain that the drug is safe to use on humans. To our surprise, the body did not react to the drug like it would to chemo. John would get a bit of slight diarrhea and that would be it. There was no nausea and no shakes. However, we were warned that the immunotherapy might also work against other parts of the body as it worked against the tumor. Your doctors would probably be telling you this. We watched carefully for anything that might arise (like a rash) that was not there before the drug was administered. The other patient who always shared a room with John during the infusions also did not have nausea and shakes, the usual chemo reaction. He lived a long way away — he would take a train to a small town outside of Toronto, pick up his car and drive himself home after each treatment. John felt it was way easier than the chemo treatments.

When John went into the clinical trial, it was our hope that it would help patients who came after. I sincerely hope that you are one of those patients.


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.
MarvB #197146 09-14-2018 07:00 AM
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MarvB Offline OP
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Hi Gloria,

Thank you for the information on your husband. I start Opdivo in five days. I'll get a dose then and another a month later. The doctors did explain that it could cause severe problems with my organs. The also said those things are usually slow acting and they can monitor for them along the way. They aren't looking at it as a cure. They hope it will slow the progression. After my hemiglossectomy, I went from being cancer free according to a CT scan and a PET scan to being stage 3 in about a month. The tumor even invaded the flap they used to replace part of my tongue.They kept telling me what I was experiencing was the result of the surgery. I saw five different doctors before one would even check. They kept telling me it wasn't protocol to do CT or PET scans so soon. I trust the doctors I have there now.

I get a CT scan today to see what the current status is before starting Opdivo. It's very aggressive so I don't have much time to see if something is going to work.They're moving me along as fast as they can.

Marv


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MarvB #197149 09-14-2018 10:26 AM
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Thanks for the update, Marv! Ive been watching for you to post. There have been several patients here who have had mixed results with Opdivo. I am hoping you will be one who this new medicine works for.

Best wishes!!!


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
MarvB #197274 10-03-2018 05:02 AM
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Posts: 39
MarvB Offline OP
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This is Marv's wife Darlene. It is with a heavy heart that I tell you that Marv lost his battle to cancer, Sunday, September 30th. The cancer was raging and he never was able to get stable enough to start immunotherapy with Opdivo. I truly wish all of you health and happiness within your lives. Tell the people today, that you love them. Our lives do change in a heartbeat. And thank you all for the emotional support that you gave him. It meant a lot to him.

Love and peace,
Darlene Breedlove



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