Discussion Board › Forums › Introductions! › My Introduction
Tagged: Ascending Cholangitis, Cured, Hope, immunotherapy, Keytruda, NED, SIBO
- This topic has 407 replies, 40 voices, and was last updated 8 months ago by Jjet65.
February 2, 2017 at 3:58 pm #80525
Time for another update… I continue to be NED (no evidence of disease). Scans in January 2017 show no cancer and my CA 19-9 marker remains normal.
I am continuing to take Keytruda (pembrolizumab) off-label, once every three weeks. I’m not sure when I will stop.
Here are some updated charts showing my history too.
-MattJanuary 13, 2017 at 2:57 am #80524debnorcalModerator
Wonderful news!January 12, 2017 at 1:45 pm #80523
Oh, Matt, how awesome and wonderful! I am looking forward to meeting you in Salt Lake City! What a great story you have and may it continue until you are old and gray like me! LOLJanuary 12, 2017 at 11:10 am #80522middlesister1Moderator
Great update- I love seeing posts like this to start my day
Keep up the good work!
CatherineJanuary 11, 2017 at 9:40 pm #80521
I just completed Keytruda infusion #20 today (Jan 11, 2017). All is well. Looking forward to the conference this year! -MattNovember 10, 2016 at 11:34 pm #80195iowagirlMember
Matt….the chart is very, very interesting…..seeing this as a graph really brings it home. Keep making that flat line stretch out. This makes me so thrilled for you. You are definitely a lucky/unlucky guy……and for now….please keep it that way. Love seeing this.
JulieNovember 10, 2016 at 10:19 pm #80219
I’ve finished my 17th Keytruda infusion this week and continue to be “NED”, as we say.
Here’s a chart showing my CA 19-9 cancer marker history since diagnosis Dec 2013 thru my last infusion on 11/9/2016.
As a reminder, I started Keytruda in Oct 2015, prior to that I had IMRT radiation, prior to that I did a bit of gem/cis chemo, and prior to that I had a resection.
You can clearly see the effect the original resection had for about a year, then recurrence, then a roller coaster with chemo, another surgery, and radiation, then skyrocketing prior to Keytruda.
I am “the luckiest unlucky guy I know”…
-Matt xoNovember 10, 2016 at 10:13 pm #80218
Just a suggestion that “Hopeless” start a thread for their introduction, comments, updates, and advice… I’d rather not mix it in with mine Thanks!November 1, 2016 at 4:22 am #80127marionsModerator
Hopeless…..I understand your frustration and my heart breaks for you. I would not wait for a referral but rather I would take your wife to the Princess Margaret Hospital ER, now. She is in pain and the PM has an excellent hepatobiliary department.
Good luck and many hugs,
MarionNovember 1, 2016 at 3:24 am #80126
for the ones interested…..
I can post about Canada also but will it help me atm?
this is England versus Germany……
why does it work in Germany?
http://www.dailymail.co.uk/health/article-2421781/Father-cancer-given-8-weeks-live-NHS-given-clear-surgery-Germany.htmlNovember 1, 2016 at 3:14 am #80128
Hi Debnor and Lainy.
Debnor. I did not manage to transfer my wife yet to PM.
I checked it out and she must be referred.
Lainy. I am sorry that I did not have the time to read your entire story but yes, my wife is a brave woman. I am very lucky to be going to my 25th anniversary this month.
unfortunately confronting this situation.
The surgeon requested a small bowel flow through exam which I am almost positive will show that she has some sort of blockage due to adhesions from several surgeries.
At the same time the same doctor that performed the test is in line with our thinking that she has a high chance of having cancer due to the bile duct and pancreas strictures.
nevertheless he had to perform the test but he will mention his opinion in the report.
She was in a lot of pain today and it was an exhaustive day for her.
I can take her to PM hospital ER but like I said the triage may not lead us to the right direction.
I am going to try and convince this surgeon to refer her and transfer her directly to PM.
Not sure if this will happen.
If it doesn’t I have to decide with my wife as to how we are going to make that happen.
I know already its going to be horrible because she will be in too much pain.
The pain she is experiencing is not related to her adhesions pain.
She never ever had RUQ pain. We all know our bodies and when something is different it means that it is different.
What frustrates me the most is that in Canada we are at the mercy of the system.
I cannot pay to get her seen somewhere like PM faster .
I call the system a conarchy. a mixture of communism with anarchy.
its not free(we pay hefty) taxes as I mentioned before and we are prisoners of the system.
we cannot just choose who to see in a fast manner or at least try to get an appointment faster.
I myself had to wait 3 months for an MRI of my heel. 3 months.
I could have gone to buffalo and get it the same day for 1k American.
I am tired today. I am trying but the system is barring me from moving.
thanks for hearing me
good luck to all and my best wishes to all.
hopelessOctober 31, 2016 at 3:12 pm #80129debnorcalModerator
I am so glad you were able to find a way to get your wife treated at Princess Margaret Hospital. I am in the states, so no experience with the Canadian socialized medicine system, but others on this board have spoken very highly about PM. I am so sorry that, in addition to your wife having this awful disease, she has had to endure such poor medical care. However, as you know, it’s so important to get patients seen by the CC experts, and thankfully, you have made that happen. The PM doctors should be able to guide your wife to the most appropriate treatment. I’m hoping things start looking up for you and your wife.
DebbieOctober 31, 2016 at 12:58 pm #80137
Jaime, you Never have to apologize for anything on this Board, that is why we are here. I am still wondering what would happen if you just showed up at the Hospital in Emergency in Toronto. Or can you even do that? A little hint for you…..it is good to hear your wife is so strong which is all the more reason for you to match her strength. My Teddy used to tell me that he wanted me to be strong as he had steeled his mind for what was and what may be and he could not do that if I was not strong too. Man, that is what really pulled me through those 5 years. Never knew before, the strength I really had.October 31, 2016 at 4:55 am #80138
Thank you very much.
Actually the strong one is my wife.
I just sift through all that I can.
I hope that maybe more members read my posts and provide some helpful insight.
I have several names already on my list but the problem is to get to them .In the meantime the clock is ticking for too long.
I am very scared because of that and then it may be too late.
once again thank you so much for accepting me as a member and once again my apologies for letting things off my chest.
all the bestOctober 30, 2016 at 10:19 pm #80132
Jaime, good going! It is generally slow here on Sundays but I am sure you will get more responses. Also you are on your way with getting names and next step is to get her in there!!! You never know how strong you are until “strong” is the only choice you have!
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