boxhill wrote:I was MSI-H with no known masses after surgery as of last spring, so I had to do FOLFOX as first-line adjuvant therapy. I finished FOLFOX in November, and my scans in July and November showed nothing. CEA is not a marker for me. My oncologist and I were uneasy with this, since I had originally had a very small liver met that didn't show on the pre-surgical CT, which the surgeon found and removed, so he requested an MRI. MRI revealed that another tiny subcapsular met had appeared, but more concerning, there were 2 enlarged nodes in the porta hepatis. They were pretty much inoperable at that point, and if they grew could cause problems. So on New Year's Eve I started Keytruda as my second line. Finally!
My oncologist says that he doubts I could get into a trial even now with the MRI results: he thinks they are too small. It was very frustrating to have to wait, knowing that it would likely be the best treatment for me. And of course now it seems as if I may have gone through folfox for nothing. Except neuropathy in my fingers, that is!
Anyway, I just had my third keytruda infusion today, and so far it has been a complete breeze, with no side effects at all that I can determine. Keeping my fingers crossed that that continues. And that it works, of course.
boxhill wrote:My oncologist said we'd do an MRI in/after the fourth month. At least I think that's what he said, month, not cycle. that would be around the 7th cycle. Because my nodes and liver met didn't show up on a CT scan, we'll go straight to MRI.
I've read various things about how long it takes keytruda to work. I gather that some people have pseudoprogression, where initially the masses swell with the invaders. This is actually a good sign, because it is followed by shrinkage. In some people it takes 4-6 months for the response to be seen. In some it is much quicker. I think he wants to avoid scanning too early.
Before Keytruda was FDA approved for all MSI-H tumors, your oncologist might have tried to prescribe it, but I doubt your insurance company would have paid for it. Mine costs $11,000 per infusion (the rate negotiated by the insurance company, or it would be higher). So unless you could get into a trial or were extremely rich, it is unlikely that the onc's willingness to try it would have made a difference.
Wonderfullymade, how long did it take for you to develop colitis on Keytruda? Was it successfully treated, or is that why you stopped?
boxhill wrote:Stewsbetty, I'm in the USA. $11K was the price negotiated by my insurer at the time of my first infusion, Cigna. Otherwise it would be something like $15K. I don't know what my current insurer, Anthem, pays for it. We hit the deductible for me so quickly this year--my H, who does that stuff, lowered it in anticipation of my going on keytruda-- that it is irrelevant to me at this point. You know that lots of drugs cost far more here than they do in Canada. That's why people try to cross the border and buy them there.
On another forum, a Canadian was saying that her province did not approve Keytruda for CRC--even now--and so self-pay way her only option. Apparently she could not get compassionate use, and the best she could do at this point was a 20% discount on the same price you cite.
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