The Colon Club

It's been awhile since I've been on... what's up with Keytruda? Anything else i should know about?
Quick overview:
Hubby originally stage 3.. then became stage 4 with liver mets and others showing in abdomen and around that area.
6 months of Folfiri with Avastin shrunk EVERYTHING (we also did Iscador injections we got from Germany along with NO CARB OR SUGAR diet by Dr Barker in Pasadena)
The treatment was so successful he was eligible for liver resection after few months. When the surgeon did the surgery couldn't see all the spots they were too small.
Free months later radioablation for leftover spots in liver.. then few months later more spots and another ablation..now more spots and ablation was canceled.
He will go back to Folfiri/Avastin this week...but what is up with Keytruda?
He has 4 small spots confined to liver.
Any suggestions?
Thanks thanks thanks!

angielada wrote:It's been awhile since I've been on... what's up with Keytruda? Anything else i should know about?
Quick overview:
Hubby originally stage 3.. then became stage 4 with liver mets and others showing in abdomen and around that area.
6 months of Folfiri with Avastin shrunk EVERYTHING (we also did Iscador injections we got from Germany along with NO CARB OR SUGAR diet by Dr Barker in Pasadena)
The treatment was so successful he was eligible for liver resection after few months. When the surgeon did the surgery couldn't see all the spots they were too small.
Free months later radioablation for leftover spots in liver.. then few months later more spots and another ablation..now more spots and ablation was canceled.
He will go back to Folfiri/Avastin this week...but what is up with Keytruda?
He has 4 small spots confined to liver.
Any suggestions?
Thanks thanks thanks!

If his tumors are MSI-H, it could be an effective treatment. Working well for me so far, though side effects are beginning to catch up with me.

Veckon, what side effects, and since when?

Fatigue is the most persistent. It started out as just standard fatigue, but has since progressed to what can only be described as narcoleptic. The last two weeks I have seen a large increase in bleeding during loose bowel movements, which have become frequent enough to keep me from sleeping. I was hospitalized for slight anemia a few days ago because of this, but other than that my blood work actually looks good. I am at Sloan Kettering now actually waiting to be examined by my colorectal surgeon in greater detail.

I've also slept the days away, and have been dealing with mouth sores,chapped lips and a sore throat. Up intil recent with the steroids and anti-fungals have I felt aome relief. Good luck to ya bro.

veckon wrote:Fatigue is the most persistent. It started out as just standard fatigue, but has since progressed to what can only be described as narcoleptic. The last two weeks I have seen a large increase in bleeding during loose bowel movements, which have become frequent enough to keep me from sleeping. I was hospitalized for slight anemia a few days ago because of this, but other than that my blood work actually looks good. I am at Sloan Kettering now actually waiting to be examined by my colorectal surgeon in greater detail.

Please consider an hour of yoga daily.
It will build up your strength and stamina especially with deep breathing exercises.
Also my haemoglobin levels improved substantially with fresh pomegranate, carrots and beets juice.
I am currently on opdivo with liver, lung and peritoneal mets. Cea levels coming drastically with opdivo.

Pembrolizumab (Keytruda) and nivolumab (Opdivo) are a type of immunotherapy, both approved some months ago, as monotherapy, for those with CRC whose MS status is MSI-high (about a 10% of the CRC are MSI high). For the majority of the CRC patients, who are MSS, those agents and similar are being tested in combinations --that is: immunotherapy + [something else]. You have a link to a clinical trial finder in my signature line; the finder is curated by Tom Marsilje --DK37 in this forum.

And there are many ablation options and other treatments for the liver. It depends of where you are located, if you can travel, etc.

Thanks all...and good luck!
They are testing his MSI. He does have Kras mutation.
For those currently on Keytruda:
How long have u been on it?
Did they give u a length of time you will do it for?
How often and how long are treatments?
Do you still do regular chemo with it?
And, how bad ate side effects compared to Folfiri/Folfix?

Thank you sooo much for your replies! I really hope you are doing well!

angielada wrote:Thanks all...and good luck!
They are testing his MSI. He does have Kras mutation.
For those currently on Keytruda:
How long have u been on it?
Did they give u a length of time you will do it for?
How often and how long are treatments?
Do you still do regular chemo with it?
And, how bad ate side effects compared to Folfiri/Folfix?

Thank you sooo much for your replies! I really hope you are doing well!

Hi Angie,

I just had my 3rd treatment of Keytruda. I was not given any end date for it. Because it is a newer thing there isn’t much data on treatment lengths. I have a dose every three weeks. The standard dose is 200mg. I think the treatment length probably varies with each infusion centre. The drug running takes about 45 minutes. But it is often more than a couple hours. Depending on how easily my port is accessed or whether the pharmacy gets the drugs over quickly, etc. I am having the Keytruda on its own, no chemo. The first cycle I was in so much pain and was extremely fatigued. The next two I have been pretty much myself. Maybe a tad more tired on the infusion week. This is way better than my reaction to folfox and folfiri. Both of those put me in the hospital at least once!
Beth

Stewsbetty wrote:
Hi Angie,

I just had my 3rd treatment of Keytruda. I was not given any end date for it. Because it is a newer thing there isn’t much data on treatment lengths. I have a dose every three weeks. The standard dose is 200mg. I think the treatment length probably varies with each infusion centre. The drug running takes about 45 minutes. But it is often more than a couple hours. Depending on how easily my port is accessed or whether the pharmacy gets the drugs over quickly, etc. I am having the Keytruda on its own, no chemo. The first cycle I was in so much pain and was extremely fatigued. The next two I have been pretty much myself. Maybe a tad more tired on the infusion week. This is way better than my reaction to folfox and folfiri. Both of those put me in the hospital at least once!
Beth

Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.

henry123 wrote:

Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.

Hi Henry, yes I am getting the treatment in BC. It has not been approved in Canada for MSI cancers yet so I had to push my oncologist to get it. It is $8800 per dose if you follow the US FDA approved dose of 200 mg every 3 weeks. I applied for the compassionate care program through Merck and was originally denied. Then my husband’s extended health insurance approved it at 80%. My local hospital found 3 doses left over from a previous patient and gave those to me. After they worked so well the pharmacist resubmitted my application to Merck and I got a call last week saying they would provide the drug free to me. This is such great news! Now there is no longer any financial burden on my family.

So glad for this site and Dr. Tom’s blog that introduced me to the idea of immunotherapy. After failing Folfiri I asked my Dr for a prognosis if the Keytruda didn’t work. She said I probably wouldn’t make it to Christmas. So thankful that i am responding so well on the Keytruda and may now live for years.
Beth

I am happy to hear that it worked out so well for you.
I just got back my CT scans after 6 months of Opdivo. They are mostly clear and only a lesion is there in lung. Earlier I had met spots in liver , lung and peritoneal region.

Cea levels are coming down too.

Stewsbetty wrote:

henry123 wrote:

Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.

Hi Henry, yes I am getting the treatment in BC. It has not been approved in Canada for MSI cancers yet so I had to push my oncologist to get it. It is $8800 per dose if you follow the US FDA approved dose of 200 mg every 3 weeks. I applied for the compassionate care program through Merck and was originally denied. Then my husband’s extended health insurance approved it at 80%. My local hospital found 3 doses left over from a previous patient and gave those to me. After they worked so well the pharmacist resubmitted my application to Merck and I got a call last week saying they would provide the drug free to me. This is such great news! Now there is no longer any financial burden on my family.

So glad for this site and Dr. Tom’s blog that introduced me to the idea of immunotherapy. After failing Folfiri I asked my Dr for a prognosis if the Keytruda didn’t work. She said I probably wouldn’t make it to Christmas. So thankful that i am responding so well on the Keytruda and may now live for years.
Beth

I am very glad to hear that you have a working solution with one of the new wonder-drugs and that it won't break the bank.

Does any one have experience or knowledge with regards to immunotherapy (keytruda/opdiva) , what is protocol (if any) if there is complete regression of tumors.

For how long is it continued once ct /cea are normal.

Is there any maintenance dose ?

thanks .

I don't have an answer for you but I did want to congratulate you on the impressive drop in your CEA numbers!! Sounds like Opdivo is working REALLY well for you!