My Introduction
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Posting a graph of my CA 19-9 history. Starting on the left, at diagnosis in December 2013, then drops to normal after resection in January 2014, then climbs during recurrence in January 2015 and varies through chemo in March/April 2015 and again through IMRT radiation in June/July 2015 and reaches all time high in early September 2015. Starts dropping without treatment in late September 2015. Will see and track what happens with the Keytruda treatment starting mid October 2015.
Yesterday, 10/14/2015, I received the first of what I hope to be many Keytruda infusions. We’re using Keytruda “off-label” as it’s not FDA approved for Cholangiocarcinoma in the US at the moment.
I’ll be doing a 30 minute infusion of 2mg of Keytruda per Kg of body weight (170mg in my case) once every three weeks.
It’s 24 hours after my infusion as I write this and I feel no side effects at all.
We will monitor the effectiveness of the treatment with labs prior to each infusion and occasional scans. Right now the only evidence of disease I have is my elevated CA 19-9, so hopefully that will drop. The average time for measurable response, based on the NEJM article I’ve read, is 6 weeks.
Insurance (Aetna) denied the first attempt to pay for the drug, which costs about $12,000 per treatment. We will continue to fight the insurance company and seek other avenues to cover the cost…
Life is good, never better, in fact!
Thanks for the reply Nancy! I’d bet your husband’s labs are elevated just from the dirty stent… let’s hope so. An 8 year survivor is one of the longest I’ve heard of – congratulations! I hope that I make that milestone too!
Nancypkeen wrote:Hi Matt,So excited to hear of your decision to try Keytruda. I look forward to seeing your positive posts on how it is working. My husband Ron is in a similar situation as you. His CT scan shows no evidence of a recurring cancer but his blood work numbers are elevated. His CA 199 is 110 but his Alkaline Phosphatase is over 500. Billirubin is hovering around 2.2.
He is now going to his oncologist on a monthly basis for blood work. He is very blessed to be an 8 year survivor. He has a permanent stent which now appears to be causing some problems with a slight blockage. Next step will be to get it cleaned out.
We live in Midlothian, VA so we are near you. Most of his cancer treatment has been at Sloan Kettering with follow-up care at Virginia Cancer Institute.
Sincere best wishes to get rid of this cancer and have many wonderful years with your family.
Nancy
Hi Matt,
So excited to hear of your decision to try Keytruda. I look forward to seeing your positive posts on how it is working. My husband Ron is in a similar situation as you. His CT scan shows no evidence of a recurring cancer but his blood work numbers are elevated. His CA 199 is 110 but his Alkaline Phosphatase is over 500. Billirubin is hovering around 2.2.
He is now going to his oncologist on a monthly basis for blood work. He is very blessed to be an 8 year survivor. He has a permanent stent which now appears to be causing some problems with a slight blockage. Next step will be to get it cleaned out.
We live in Midlothian, VA so we are near you. Most of his cancer treatment has been at Sloan Kettering with follow-up care at Virginia Cancer Institute.
Sincere best wishes to get rid of this cancer and have many wonderful years with your family.
Nancy
Matt,
I have read a bit about Keytruda, but am not familiar with it. Sounds promising. Good for you! Another example of one of our members staying positive and searching for the best option currently available paying off!!
debbie
Matt-
Such wonderful news!!!! Now we just need the insurance company to agree. I wonder, if they turn down payment, can you resubmit if the drug shows it’s working?
Best wishes- so excited for you!!!!!
Catherine
Matt, Really enjoyed hearing your news about the Keytruda. I so hope that you are able to get insurance to pick up the cost, but I glad to hear that you have a fall back plan for that and can do it if necessary. To think…that is just for ONE MONTH!!! Zowie!!!
I’d love to meet for lunch – pick a day and place and let me know (mattreidy at google . com) and I’ll be there.
Sherri wrote:Susan and I want to meet with you for lunch one day to tell you all about our roller coaster rides. I’m at MD Anderson now and just had my 1st promising scan. My ca-19 had risen to 7227 but my 1st 6 cycle that they put together brought it down to 2398. I’m still celebrating.Susan can’t meet until around Oct 22, has family things going on. Check your calendar and let’s have lunch.
Hey Matt,
Glad to see you post and know you have your positive attitude back. It’s great they are willing to try new ideas.Susan and I want to meet with you for lunch one day to tell you all about our roller coaster rides. I’m at MD Anderson now and just had my 1st promising scan. My ca-19 had risen to 7227 but my 1st 6 cycle that they put together brought it down to 2398. I’m still celebrating.
Susan can’t meet until around Oct 22, has family things going on. Check your calendar and let’s have lunch.
Hope to see you sioon,
SherriMatt…..excellent news. These inhibitors have shown much promise. I recently have learned that a subset of intrahpeatic Cholangiocarcinoma patients have done well in Phase I trials.
So excited for you.
Hugs,
MarionOh, Matt, what stupendous news! YIPPEE! Thank you for letting us know and wishing you the best results ever. ATTITUDE and HOPE which you have, gets you anywhere you need to go! YIPPEE!
I just met with my local oncologist in Richmond and have some pretty fantastic news.
He shared the New England Journal of Medicine article “PD-1 Blockade in Tumors with Mismatch-Repair Deficiency” with me and explained that since my FoundationOne genetic testing shows my cancer has the MLH1 defect, he’s willing to prescribe Pembrolizumab (aka Keytruda, aka Opdivo, aka MK-3475) for me.
So, instead of at best buying a little time with more gem/cis, I’m starting on Pembrolizumab in two weeks. Although not FDA approved for Cholangiocarcinoma in the US, we’re going to try to get insurance to cover the cost, otherwise I will pay out of pocket and am extremely thankful I have the financial means to do so – the cost is nearly $10,000 per month.
Reference: http://www.nejm.org/doi/full/10.1056/NEJMoa1500596
Matt,
Thank you for checking in. I’m going to be the optimist (easy for me to do) and focus on the no measurable disease.
Wishing you the best,
catherineMatt…..I am hoping for people with first hand experience to chime in on your question. From what I recall though, many report rising tumor markers, post radiation treatment, lasting for weeks and months. Glad that you are feeling good and have a clear course of action on your mind.
Hugs,
Marion
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