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by Pyro70
Tue Sep 17, 2019 1:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: can you stay in oxaliplatin ?
Replies: 4
Views: 154

Re: can you stay in oxaliplatin ?

Oxaliplatin causes permanent neuropathy as the cumulative dose increases. Neuropathy usually starts after cycle 8. If he currently has no neuropathy it’s okay to continue, but I would likely stop if neuropathy (that lasts throughout the cycle) shows up. When you stop FOLFOX you can switch to FOLFIRI...
by Pyro70
Sun Sep 15, 2019 11:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 35
Views: 4938

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

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 ...
by Pyro70
Sun Sep 15, 2019 10:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Screw Cancer, Hospice is Here
Replies: 19
Views: 721

Re: Screw Cancer, Hospice is Here

Glad to hear things are as good as they can be. Being on the beach I’m sure will be nice. My wife and I have a one-way ticket to Puerto Rico on Thursday - we hope to spend the winter there. Enjoy your time, I’m sure you still have quite a bit. I agree with you though it’s relatively easy for us. We ...
by Pyro70
Sun Sep 01, 2019 5:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diagnosed while working abroad
Replies: 30
Views: 1721

Re: Diagnosed while working abroad

I was in a similar situation. I was working in Indonesia when diagnosed. Obviously staying in Indo wasn’t an option so I came back to the US. At first I was worried about Insurance, but with the ACA it’s really not an issue if you can afford it. For about $12k/year you get access to the best oncolo...
by Pyro70
Sat Aug 31, 2019 8:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Help. Squirt bottle recommendations?
Replies: 18
Views: 1140

Re: Help. Squirt bottle recommendations?

Amazon sells compact compressible travel bidets. But lately I’ve found it easier just to use a Sitz bath at the Hotel/airbnb when traveling. Out and about I just use wet wipes.
by Pyro70
Fri Aug 30, 2019 1:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: second guessing everything right now . . .
Replies: 10
Views: 733

Re: second guessing everything right now . . .

Many leading oncologists now recommend tumor sequencing to be done at diagnosis. It’s important, but also not all that likely to identify an actionable mutation. I can’t comment on the radiation / lymph node issue. I’d consult with a radiation onc now and get his opinion. I see no benefit in waiting...
by Pyro70
Fri Aug 30, 2019 1:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant chemo or not / Decision time for adjuvant chemo
Replies: 31
Views: 1452

Re: Adjuvant chemo or not

I’d have to check but I think the latest guidelines don’t have an option for short (3 month FOLFOX). But here is a short option with xelox. I think no chemo makes sense. Don’t listen to the surgeon, they don’t know much about the data on chemo. It’s still somewhat experimental, But I’d get a ctDNA t...
by Pyro70
Fri Aug 30, 2019 9:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diagnosed while working abroad
Replies: 30
Views: 1721

Re: Diagnosed while working abroad

I was in a similar situation. I was working in Indonesia when diagnosed. Obviously staying in Indo wasn’t an option so I came back to the US. At first I was worried about Insurance, but with the ACA it’s really not an issue if you can afford it. For about $12k/year you get access to the best oncolog...
by Pyro70
Tue Aug 13, 2019 9:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 35
Views: 4938

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

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 in...
by Pyro70
Tue Aug 13, 2019 9:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Would like to hear from those who have had Surgery & HIPEC..
Replies: 11
Views: 896

Re: Would like to hear from those who have had Surgery & HIPEC..

You can see my signature below. Dh had Hipec Oct 2016. He's young and recovered well from surgery. High pci (20) but we were told they removed it all. No chemo after. Recurrence 9months later. Just one small spot he's been getting chemo for (on and off) and it's stayed stable this whole time. He ma...
by Pyro70
Mon Aug 12, 2019 7:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ask For Foundation One Test, and Keytruda?
Replies: 11
Views: 836

Re: Ask For Foundation One Test, and Keytruda?

Echoing Rob, if you start Keytruda I would strongly consider staying on regorafenib based on the Regonivo results. Is there a similar trial that uses Ketruda in place of opdivo? Hi Meatie, Yes Merck is trying Keytruda with regorafenib in the trial NCT03657641. As i mentioned, in theory Pembrolizuma...
by Pyro70
Mon Aug 12, 2019 6:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda Off Label
Replies: 4
Views: 417

Re: Keytruda Off Label

Hi Meatie, Any doctor can prescribe a drug off label. The main question is what is the medical rationale? If you are MSS unless you have a high (or at least intermediate) TMB there is no reason to think that Keytruda monotherapy will work. However, I’m currently tracking about 10 patients that are t...
by Pyro70
Mon Aug 05, 2019 8:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Would like to hear from those who have had Surgery & HIPEC..
Replies: 11
Views: 896

Re: Would like to hear from those who have had Surgery & HIPEC..

Thank you, not necessarily the HIPEC part. I know the HIPEC chemo may or may not have much difference one way or the other in doing it or not.. but the surgery part can be the main benefit and depends on how good the surgeon is and/or how much spread one has as far as what I have read. The surgeon ...
by Pyro70
Sun Aug 04, 2019 7:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stupid health insurance...
Replies: 6
Views: 708

Re: Stupid health insurance...

It doesn’t sound right to me either. And typically Nurses don’t know anything about insurance.
by Pyro70
Sun Aug 04, 2019 7:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Would like to hear from those who have had Surgery & HIPEC..
Replies: 11
Views: 896

Re: Would like to hear from those who have had Surgery & HIPEC..

I would look at the Prodige 7 trial results on HIPEC. It basically says HIPEC has no benefit but CRS can extend life to 4-5 years.

I’ve had two CRS/HIPECs. Both times I had recurrence within 6 months.

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