April 6, 2016 at 6:17 pm #91508sharonandphilMember
Thanks so much Matt. That is very helpful and good to know. My husband’s Ca-19-9 level is currently at 949…..hoping next chemo will reduce numbers again.
I pray your journey continues to improve.April 6, 2016 at 5:55 pm #91507
You are correct that it is not US FDA approved for CCA. It likely never will be due to the cost involved and the lack of associated revenue.
It is, however, able to be prescribed “off-label” by any oncologist in the US. The catch is that Insurance will likely not cover the cost in that situation.
I did not qualify for any trials so I’m taking it off-label.April 6, 2016 at 4:55 pm #91506sharonandphilMember
Matt and others,
Are you taking Keytura as a part of a clinical trial? It was my understanding that is was not FDA approve yet for cholangiocarcinoma.March 17, 2016 at 3:27 pm #91505
I have been taking Keytruda since October 2015 (6 infusions total so far) with great success. It took about 4-6 weeks to “kick in” to the point where I could see a drop in my CA 19-9 level.
You can see my whole story, including more details on the Keytruda experience here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
I think it’s too early for your wife to call it quits just yet. I hope the review board agrees!
Best of luck and keep us posted please.
-MattMarch 17, 2016 at 12:27 am #91504frank2112Member
My wife started a Keytruda trial 4 weeks ago. She has received 2 infusions. This past weekend she had some severe pain and went to the emergency room for get checked. They admitted her and did a CT. She wasn’t too happy with how they were handling everything and her oncologist got her moved over to his hospital (BJC in St Louis). We brought the CT scan from the first hospital and it was read at BJC.
We went to see the oncologist today and he gave us some terrible news. The tumors had grown considerably since the initial scan 4 weeks ago and she would be taken off the trial due to progression. He gave my wife 6 more months to live.
We went back to the oncologist later in the day to ask if it was too early to see results from the Keytruda. He said it was out of his hands and was up to the trial doc. A few minutes later the trial coordinator showed up and said he spoke to the trial doc who said she could continue the trial but only if the IRB okayed it. We should know in the next couple of days what the IRB says.
He mentioned Folfox was still an option. I believe immuno is better than chemo and haven’t given up hope on staying on the trial and this was just a setback and we just need a little longer.
Has anyone had any luck with Keytruda? Has anyone had a major setback before seeing improvement?February 18, 2016 at 6:41 am #91503mbachiniModerator
I am so sorry chemo has been hard on you. It was hard on me also, I did not do folfox, but have heard it can be rough. Hang in there and continue to rest when needed, it is what you need right now. When is your next scan? How long have you been on this trial? You CAN DO IT, you ARE DOING IT! Sending hugs and prayers your way!
MelindaFebruary 16, 2016 at 3:00 pm #91502cindy-obrienParticipant
I’m taking MK3475 along with folfox chemo in a clinical trial. Thinikng that imunotherapy is the way to go with this cancer (metastizd to my lungs).. It has comletley shut down my life. I seldom go out and lounge around all day in pajamas… I dread 2:30 pm until 4;;30 pm, when I’m the sickest. I just try to sleep. I can’t believe how I can’t do much more thaan shower and do minimal house work.
My husband is a great care-givrmand picks up all the slack, cooking,houdework and shopping.
I just look for positives after this over. It’s a tough battle, but i CAN DO IT! Are othere having this hard of time with chemo?February 5, 2016 at 6:38 pm #12160
Does anyone here know of ANY patients who are or have taken Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475), the anti-PD1 immunotherapy drugs?
I started Keytruda back in October 2015 and would like to network with others.
- You must be logged in to reply to this topic.