November 9, 2015 at 5:24 pm #80401
Now I can add Matt and Merck to my hero list . I love the zero side effects. What’s great is we have heard that it can still be doing wonders even without them. I can’t wait to hear that is the case for you too Matt!
CatherineNovember 9, 2015 at 4:38 pm #80400lainyParticipant
WAY TO GO, MATT! That is fabulous about not having to pay for the treatment! Better usage with all the planned trips! You are truly a CC poster boy! Keep up the great work and thank you for the update.November 9, 2015 at 3:53 pm #80399
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.
-MattOctober 27, 2015 at 2:03 am #80398mbachiniModerator
Can’t wait to see your great results and that line on your graph going way down!!! Happy there are no side effects and that life is good! You are always in my prayers! Hugs to you!
MelindaOctober 20, 2015 at 9:20 pm #80397gavinModerator
Will so join in with the keeping things crossed for you with the Keytruda and am sending loads of positive vibes your way as well. Love your pics in the other thread as well and looking forward to hearing from you in the good news section of the site!
My best to you,
GavinOctober 19, 2015 at 10:34 pm #80396marionsModerator
Matt……we have seen these incredible, positive responses to Keytruda; can’t wait to see your name attached to it.
Fingers are crossed on this end. Did you know that Lainy crosses her eyes as well?
MarionOctober 19, 2015 at 2:36 pm #80395October 18, 2015 at 8:28 pm #80394
Can’t wait to hear the numbers!!!! (and I love the graphs)October 18, 2015 at 5:08 pm #80393lainyParticipant
You go MATT! Being Sunday all I will say is TOUCHDOWN! It is apropos for you as well!October 18, 2015 at 3:50 pm #80392
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.October 16, 2015 at 1:22 am #80391
Matt, not for all, but for some we have heard about keytruda working wonders without side effects. I really believe you will be another. But especially if it shows it’s working, I hope insurance will cover. If not, do we set up a “go fund me” page for you?
Thinking of you and the family,
CatherineOctober 15, 2015 at 10:54 pm #80390marionsModerator
Matt……..you do nice work. I have been told that both, chemotherapy and radiation affect the CA 19-9 tumor markers . One could assume that the marker upswing is attributed to the radiation which now has leveled off. Is there a trend downward or is the current status based on 1 blood test result only?
MarionOctober 15, 2015 at 6:09 pm #80389
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.October 15, 2015 at 5:53 pm #80388
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!October 14, 2015 at 4:40 pm #80387
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.
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