The Colon Club

ForDad wrote:

Pyro70 wrote:Thank you for this post. It’s encouraging to hear that this regimen is more tolerable than FOLFOX or FOLFIRI. I’m helping to track a number of patients responses to this regimen for the MSS Facebook group. Hopefully you won’t mind sharing future updates on efficacy and side effects so that I can include you in the results as well. I plan to share the results here as well in a few months, once patients have their first scans.

Was the approval for Opdivo from BMS or your insurance? Do you mind also sharing what kind of insurance your dad has?

Best of luck with future scans! Also did your dad’s oncologist suggest this approach or did you have to push for it?

Many thanks!
Ben

Apologies for the slow reply, Ben. To answer your questions:

1) The approval for Opdivo came directly from BMS. My dad has Medicare and Medicaid.
2) Our oncologist recommended this approach. We did not bring it up with him.

Week 3 side effects: The fatigue is worse, and my dad also has quite a few mouth sores. (He also had mouth sores from FOLFIRI). My dad says that eating food feels like eating sand (gritty). His appetite isn't great but he is eating nonetheless. His voice is also soft and hoarse.

I will continue to update.

Thanks so much for the update. We are all hoping for you that this turns out to be the game changer we hope it to be. I’m very anxious to start seeing the first CT scan results for those trying this combo. You are certainly at the forefront of CRC treatment.

It’s encouraging to hear BMS approved Opdivo for a Medicare/Medicaid patient. According to the application form I’ve seen, it says they’ll only do it for private insurances.

All the best to you!

My father has recently used this treatment. How much do you use nivolumab??

ForDad wrote:Can I know who is your doctor?

Can I know who is your doctor?

simonseconddone wrote:My father has recently used this treatment. How much do you use nivolumab??

Dear simonseconddone,

I'm afraid I don't know the dosing amount for Nivolumab. I sent you a PM and email re: our oncologist.

Best wishes.

Just a quick update on Regonivo. Between this group and Colontown I’m continuing to track >10patients trying Regonivo. None of them have reported a CT scan yet (the first ones should be in October). So we don’t have any real results yet.

However one patient tried Regonivo in the 11th hour and seems have not had a response. She stopped treatment and is now in hospice.

A second patient reported a 50% decrease in CEA after the first cycle (4 weeks) which is promising.

Seems most patients are doing a 4 week cycle of Nivolumab infusion and it only takes 30 minutes. It must be nice not to spend a lot of time at the cancer center!

I will update again if more information becomes available. I also plan on conducting a more detailed survey of all the patients at the end of October.

Best of luck to all of you trying Regonivo. Let’s hope for more good news.

Good work Pyro 70! Looking forward to your stats. Shout out to Maia over there on Colontown.

Best Wishes to ALL of you. Please do share updates.

BS

Hi

I'm starting rego/nivo later this week.

I'll post updates and would be grateful for news from others trying this combo.

For those who have known me for a while on this forum, this is my 8th line in nearly 5 years. I have been stage 4 all the way (liver, peritoneum, lungs).

I suspect this my last roll of the dice ...

Best wishes,
Tim

Tim UK wrote:Hi

I'm starting rego/nivo later this week.

I'll post updates and would be grateful for news from others trying this combo.

For those who have known me for a while on this forum, this is my 8th line in nearly 5 years. I have been stage 4 all the way (liver, peritoneum, lungs).

I suspect this my last roll of the dice ...

Best wishes,
Tim

Good luck. Thus far i’ve heard of a couple cases of CEA improvement but no scan results as of yet. One patient tried it in the “11th hour” and did not seem to have a response. That patient is now in hospice. Please do keep us posted.

Are you in the UK? How are you getting reimbursement for Nivolumab? Thanks

My husband had a consultation at Weill-Cornell the other day and the oncologist mentioned this combination as a possible option should he had any recurrence. He is currently (still) NED, but we want to have a game plan - just in case. (Knocking on wood this is all for naught.)

Time will tell.

Pyro70 wrote:Just a quick update on Regonivo. Between this group and Colontown I’m continuing to track >10patients trying Regonivo. None of them have reported a CT scan yet (the first ones should be in October). So we don’t have any real results yet.

However one patient tried Regonivo in the 11th hour and seems have not had a response. She stopped treatment and is now in hospice.

A second patient reported a 50% decrease in CEA after the first cycle (4 weeks) which is promising.

Seems most patients are doing a 4 week cycle of Nivolumab infusion and it only takes 30 minutes. It must be nice not to spend a lot of time at the cancer center!

I will update again if more information becomes available. I also plan on conducting a more detailed survey of all the patients at the end of October.

Best of luck to all of you trying Regonivo. Let’s hope for more good news.

Thank you for your work. My dad and I will be looking into this. I will update everyone if we decide to use this combo.

Nate.

I would not mind maintaining a spreadsheet of the data from those doing this combination. I know that others are tracking progress, but if we could collaborate, that would be great.

I have started a collection from the data already available (Alanna Project, as of Sept 22nd). Only six patients so far: 4 on Regorafenib + Nivolumab and 2 on Regorafenib + Pembrolizumab. Would love to add more.

TRIAL # DRUG NAME PATIENT # CANCER BIO RESPONSE SIDE EFFECTS DATES
NCT03657641 Regorafenib, Pembrolizumab 057SP MSS, KRAS 7/8/19 - present
NCT03657641 Regorafenib, Pembrolizumab 126IC MSS After 7/24, red dots all over body but receded. 2nd infusion was 8/16/19 7/24/19 - present

Regonivo/Nivolumab Off Label Regorafenib, Nivolumab OL001DG current
Regonivo/Nivolumab Off Label Regorafenib, Nivolumab OL002TB 6/24/19 - present
Regonivo/Nivolumab Off Label Regorafenib, Nivolumab OL003SD MSS 9/14/2019 - CEA went from 31.9 to 15.6 after 6 weeks. First scan in Oct 2019 8/2/19 - present
Regonivo/Nivolumab Off Label Regorafenib, Nivolumab OL004AL 8/29/2019 - CEA stable after first infusion. 9/12/19 - Progression, hospice Side effects were rough so dropped Stivarga from 80 mg to 40 mg after 2 wks 8/1/19 - 9/12/19

In answer to an earlier question, my insurance company were open to funding this duo despite lack of approval by the drug commissioning body NICE (our FDA). I'm conscious that this was a real stroke of good fortune, arising from a clause in some UK policies that allows the consultant to make a specific case for funding, if they really believe it has potential.

For what it's worth I certainly don't feel any improvement yet ... symptoms keep worsening each day. However ... must be patient!

Best wishes
Tim

Tim UK wrote:In answer to an earlier question, my insurance company were open to funding this duo despite lack of approval by the drug commissioning body NICE (our FDA). I'm conscious that this was a real stroke of good fortune, arising from a clause in some UK policies that allows the consultant to make a specific case for funding, if they really believe it has potential.

For what it's worth I certainly don't feel any improvement yet ... symptoms keep worsening each day. However ... must be patient!

Best wishes
Tim

Hi Tim,

I am hoping it works for you. Keeping my finger cross. I noticed you used "7/19-9/19 enco+cetux+Bini", do you have "braf v600e" mutation?

Best Wishes,
Nate.

I'm new to this site, new to the cancer issue, new to all the horror.
I wrote up my signature with what I could decipher in the last 30 mins (that's how long I've be in the group!)

I want to say THANK YOU for sharing all of this thread info. My mother today had a lot of anxiety and some dark thoughts. I gave her a stern talking to (about not quitting, about hope, and there were different meds that might work better for my sister. None of which the docs have discussed w us.)
So finding this site, (Thank You GraniteKitty from Reddit) has been a beacon in the dark for me. I just shared this thread with my father so he can digest it too.
Thanks for sharing HOPE!

-L

I'm very sorry to share that Regonivo did not work for my father per his latest CT scans. He is currently too weak to try any other treatments. After consulting with our doctor, we made the decision to start hospice today.

My dad gave it his all, and we are very grateful to the medical team who cared for him for the past six years.

I sincerely wish everyone on this journey all the best.