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There were some concerns that I might have Lynch Syndrome (HNPCC) since my tumor has the MLH1 mutation and we have a pretty frequent family history of GI cancer so I had some additional genetic testing done and it turns out that I do not have Lynch Syndrome.
Good news for a couple of reasons.
1) My children won’t be more likely to develop early GI cancers.
2) The Keytruda that I’m taking has shown to be much less effective in people with Lynch Syndrome
Just a brief update “for the record”.
I had my second infusion of Keytruda on 11/4/15. I’m still feeling zero side effects from the drug, thankfully. I feel well.
Insurance (Aetna) denied claims and related appeals to pay for the Keytruda. The great news is that Merck, the manufacturer, has agreed to provide the drug for FREE going forward. I was not looking forward to shelling out $12,000 every three weeks.
My CA 19-9 continues to climb even though I’ve started the Keytruda. My oncologist assures me that I shouldn’t worry about it, but it’s hard not to. I’ve updated my CA 19-9 history graph and attached it to this post.
Scans are being scheduled as a new baseline for use in tracking how well the Keytruda works for me.
I’ve got several trips planned. NYC for Thanksgiving and the parade with the family. Puerto Rico in January with my 80 year old father and two brothers, Salt Lake City for the Foundation’s annual conference, and Turks & Caicos with the family for Spring break in March.
Fantastic news Melinda! I’m so happy for you and thank you so much for blazing the trail for the rest of us and those to come.
Hi Tina, I am being tested for Lynch too. I was diagnosed with Perihilar Cholangiocarcinoma almost two years ago at the age of 47. I should have some genetic results on Lynch soon and will post them.
Frank, welcome. I want to encourage you to get your wife’s tumors genetically tested via FoundationOne or similar company so that you can explore clinical trials for new targeted therapies. Her doctor should be able to arrange for that. Best of luck to you both! -Matt
Infusion was this past Wednesday and it’s Sunday now. Still no noticeable side effects from the Keytruda. I should have my latest CA 19-9 results (from before I started Keytruda) in a few days and will update my chart and see if there’s a downward trend without any therapy. Thankfully, we have the financial means to pay for the Keytruda, if necessary, without a GoFundMe or similar campaign. That doesn’t mean I won’t fight insurance and Merck for coverage and/or a discount.
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.
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.
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.
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.Lainy wrote:LOVE< LOVE
Lainy, Julie even gave me a special hug just from you! xo