Page 1 of 2

Adjuvant immunotherapy

Posted: Fri Feb 08, 2019 4:27 pm
by Majaelisestrand
Hi everyone.

I’m new here :)

I’m 9 months NED from stage IV rectal cancer. Lynch positive, MSI-high. I have muscinous carcinoma, KRAS-mutant. I had 5 cycles of folfox in the adjuvant setting. I wanted immunotherapy, given the results it has in the adjuvant setting for melanoma. But they didn’t want to give it to me because of the lack of evidence in trials[for adjuvant immunotherapy for CRC]. Has anyone here gotten it?

Best regards

Re: Adjuvant immunotherapy

Posted: Fri Feb 08, 2019 7:17 pm
by dauofcamom
My mom was stage 4 with Mets to her peri. She is MSI high but negative for Lynch. Chemo failed on first cycle. She almost died from it so onc discontinued. We crossed our fingers that it wouldn’t come back after surgery removing original tumor. But then it did. Onc put her on Keytruda in October. Three Months later her peri Mets are gone and she is NED according to her scans.

Re: Adjuvant immunotherapy

Posted: Mon Feb 11, 2019 12:55 pm
by henry123
I am msi-high and Lynch positive. I was diagnosed with stage IV colon cancer.
Immunotherapy in form of Nivolumab Opdivo worked out for me.
I did not respond at all to various chemos including capacitibine, regrofenib and avastin.

Re: Adjuvant immunotherapy

Posted: Mon Feb 11, 2019 6:39 pm
by boxhill
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! :roll:

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.

Re: Adjuvant immunotherapy

Posted: Mon Feb 11, 2019 9:31 pm
by Stewsbetty
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! :roll:

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.



Curious when you will be getting your first scan? Sure hope that it is working for you. :)

Re: Adjuvant immunotherapy

Posted: Mon Feb 11, 2019 9:51 pm
by plastikos
I am MSI-H as well. Did FOLFOX + Erbitux as well as FOLFIRI as adjuvant chemo after surgeries. Had recurrences after both. After that I was put on Keytruda and I am about to hit my 2 year mark on the drug. I have been NED for almost the whole time on immunotherapy. I know it’s useless to think about it but if I had to do it all over again I probably would’ve preferred to get immuno instead right after my first surgery. It would’ve probably saved me from 1 major surgery and 28 rounds of chemo. But the data for immunotherapy wasnt there yet during that time so I dont think any onc would’ve recommended it as adjuvant with confidence.

Re: Adjuvant immunotherapy

Posted: Tue Feb 12, 2019 2:01 pm
by Wonderfullymade
I am also msi-h and 2 different types of chemo failed me as well! See my sig!
Wonderfullymade

Re: Adjuvant immunotherapy

Posted: Tue Feb 12, 2019 3:14 pm
by mpbser
Wow, these are great stories. I wish my husband was MSI-H!

Re: Adjuvant immunotherapy

Posted: Tue Feb 12, 2019 5:50 pm
by boxhill
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. :cry:

Wonderfullymade, how long did it take for you to develop colitis on Keytruda? Was it successfully treated, or is that why you stopped?

Re: Adjuvant immunotherapy

Posted: Tue Feb 12, 2019 7:35 pm
by Wonderfullymade
I think it was about 18 months of treatment before the colitis began. It was treated successfully with prednisone. Although I still have lights bouts of it kinda daily, nothing that stops me! It is not why I stopped. I hit the 2 year mark and had a clean PET and CT scan. It took almost 2 years though for 1 node to go away! 1 evaporated after the first scan. I don’t really know if the 2nd one was just a dead thing or not...
I have another scan in about 3 weeks. Im praying the trend continues!
Wonderfullymade
Eta :my onc got thedrug off label through my insurance co as a matter of life or death. He was a pretty remarkable Dr.

Re: Adjuvant immunotherapy

Posted: Wed Feb 13, 2019 8:18 am
by Stewsbetty
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. :cry:

Wonderfullymade, how long did it take for you to develop colitis on Keytruda? Was it successfully treated, or is that why you stopped?


Hello Boxhill, where are you from? I was looking into self pay for Keytruda before I was accepted to their compassionate care program. In Canada the charges were $8800 per 200mg dose. Sure hope they aren’t over charging you!

Beth

Re: Adjuvant immunotherapy

Posted: Thu Feb 14, 2019 5:02 pm
by Majaelisestrand
Thank you everyone. Such great stories! I was just months from being treated with immunotherapy in the first line setting... But, I’m so greatful for being NED. Just wish I could have immunotherapy now, not wait for it to show up again...

Re: Adjuvant immunotherapy

Posted: Fri Feb 15, 2019 7:20 am
by boxhill
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. :roll:

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.

Re: Adjuvant immunotherapy

Posted: Fri Feb 15, 2019 7:59 pm
by Pyro
Anyone get Keytruda on Medicare?

Re: Adjuvant immunotherapy

Posted: Sun Feb 17, 2019 10:06 am
by Stewsbetty
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. :roll:

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.


Yes, there are no provinces that cover Keytruda for CRC. So trials or self pay (or private insurance) is the only option. I was planning self pay (my husbands insurance approved 3 months and would re evaluate then) and then my hospital found 3 doses of undesigated Keytruda they said I could use. After those worked so well we reapplied for compassionate care to Merck and they agreed to cover me. I heard from another patient that they often reject people for compassionate care but if you self pay and it is working that they may cover you if you reapply.

Kind of surprised to hear there is something cheaper in Canada than the States. :lol: I guess we make up for it with our higher gas prices!