October 14, 2015 at 1:18 am #80386nancypkeenParticipant
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.
NancyOctober 1, 2015 at 3:44 pm #80385debnorcalModerator
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!!
debbieOctober 1, 2015 at 8:41 am #80384middlesister1Moderator
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!!!!!
CatherineOctober 1, 2015 at 1:20 am #80383iowagirlMember
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!!!September 30, 2015 at 11:42 pm #80382
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.September 30, 2015 at 11:30 pm #80381sherriMember
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,
SherriSeptember 30, 2015 at 7:04 pm #80380
Matt…..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.
MarionSeptember 30, 2015 at 5:33 pm #80379lainyParticipant
Oh, 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!September 30, 2015 at 4:48 pm #80378
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.September 25, 2015 at 4:05 pm #80377middlesister1Moderator
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,
catherineSeptember 23, 2015 at 10:04 pm #80376
Matt…..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.
MarionSeptember 23, 2015 at 4:17 pm #80375lainyParticipant
Dear Matt, thank you for the update. I prefer to say good news and iffy news. I can’t give you an answer on this one but like you I tend to lean more on the chemo as your next step and that perhaps the mystery would be taken care of. Wishing you all the best as always.September 23, 2015 at 3:34 pm #80374
Results from my check-up at Mayo this week are mixed. I’m about two months post-radiation treatments.
The good news is that there is “no measurable disease”. i.e. There are no visible tumors or other visible signs of cancer, which is fantastic.
The bad news is that the cancer marker in my blood is at an all time high (just over 1,000) which leads us to believe that the cancer is there but just not visible. There is some “thickening” of some bile ducts in what remains of my liver which may or may not be cancer. I opted not to have an ERCP to look and do a biopsy because either way, I’m planning to start chemo again locally in Richmond and continue to monitor things.
All of my other labs are completely normal and I feel just fine.
Are there others who did radiation and then had elevated CA 19-9 numbers and/or thickening of the bile ducts? I’m hopeful that both are just a result of the irritation from the radiation.July 11, 2015 at 1:16 am #80373iowagirlMember
Okay…..I know this is going to sound vain….but my hair…..looks pretty bad. It’s been doing great…..nice volume….but this morning…..I blew my hair dry….and it just fell flat. The only difference,…hotel water and hotel shampoo. But, it has grown back, so for that, I remain thankful….and on better hair days…it actually looks kind of like I wished it would back when i was a teenager. Really wished it would have looked better for the picture though.
It was wonderful to meet Matt. He’s a very sweet guy. We shared pictures of our families(he has a beautiful family)….and stories. I think I knew Matt’s Cc history by heart, but my husband didn’t and I think it was an eye opener for him. Matt “looks” good…..and if you didn’t know what he’s going through, you would never have known. Though technically, I’m not old enough to be his mom….I wanted to “mother” him. If you didn’t know his age, you would probably think he was barely 35. What a sweetheart he is. We also talked a little about work history…and I think my husband would have loved to have talked with him for quite a while longer.
Matt…thank you for taking some of your time to meet with us today. We wish you only good results from your treatments…..and soon, you will get back home to that family of yours. Life may never be the same again….but I’ve come to understand, it doesn’t have to be….it only has to move on.
JulieJuly 10, 2015 at 9:44 pm #80372
So happy you were able to meet in person. Thanks for letting us share by taking the great picture.
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