The Colon Club

nzjez wrote:

Rock_Robster wrote:One other comment on the PRODIGE 7 trial results - this trial used oxaliplatin as the HIPEC drug. I’ve seen inconsistent results between this and mitomycin-C (MMC), some research suggests Oxaliplatin has the edge, but some more recent studies indicate significantly better results from MMC. Might also be a topic for discussion with whomever is planning the surgery.

Cheers
Rob

Hi Rob
Thanks for all your advice and input. I really appreciate everything you've said, and your though into it.
Definitely will chat about the type of HIPEC, and any reasoning the surgeon/ oncologist has as to their choice esp with recent study finding. Even whether HIPEC is recommend? Maybe CRS on its own to reduce morbidity?
The pelvic Exenteration surgery ive also been suggested does also sound like and option, but I'm really hoping they can make CRS a good feasible choice. PE sounds such a drastic terrible surgery.

No problem at all, sounds like you’re heading down the right path with regard to the conversations.

Just out of interest, am I right in assuming from your username you’re in NZ?

I agree re PE surgery - whilst these are all big procedures, this is another level again. I haven’t heard of PE used for peri mets so much; here it’s more used for complex local recurrence of rectal cancer that can’t be managed with a more localised resection. If they believe they can remove all macroscopic disease with CRS then I’m sure this would be preferable.

I’ve seen a few people here comment that if they had their time again they would do CRS without HIPEC. I can also understand that based on the research so far. I guess the question will be, given you’re having major surgery anyway, does adding HIPEC materially increase your risk of complications - and if not and may add a few % of survival benefit, then perhaps there’s an argument for it. Maybe others who’ve had this procedure can weigh in here.

Good luck, let us know how you go.

Cheers
Rob

Rock_Robster wrote:

nzjez wrote:

Rock_Robster wrote:One other comment on the PRODIGE 7 trial results - this trial used oxaliplatin as the HIPEC drug. I’ve seen inconsistent results between this and mitomycin-C (MMC), some research suggests Oxaliplatin has the edge, but some more recent studies indicate significantly better results from MMC. Might also be a topic for discussion with whomever is planning the surgery.

Cheers
Rob

Hi Rob
Thanks for all your advice and input. I really appreciate everything you've said, and your though into it.
Definitely will chat about the type of HIPEC, and any reasoning the surgeon/ oncologist has as to their choice esp with recent study finding. Even whether HIPEC is recommend? Maybe CRS on its own to reduce morbidity?
The pelvic Exenteration surgery ive also been suggested does also sound like and option, but I'm really hoping they can make CRS a good feasible choice. PE sounds such a drastic terrible surgery.

No problem at all, sounds like you’re heading down the right path with regard to the conversations.

Just out of interest, am I right in assuming from your username you’re in NZ?

I agree re PE surgery - whilst these are all big procedures, this is another level again. I haven’t heard of PE used for peri mets so much; here it’s more used for complex local recurrence of rectal cancer that can’t be managed with a more localised resection. If they believe they can remove all macroscopic disease with CRS then I’m sure this would be preferable.

I’ve seen a few people here comment that if they had their time again they would do CRS without HIPEC. I can also understand that based on the research so far. I guess the question will be, given you’re having major surgery anyway, does adding HIPEC materially increase your risk of complications - and if not and may add a few % of survival benefit, then perhaps there’s an argument for it. Maybe others who’ve had this procedure can weigh in here.

Good luck, let us know how you go.

Cheers
Rob

Hey Rob
Yeah NZ based. Live down in Queenstown. You're Oz based?
You're onto it with what's going on mate. The PE was due to them thinking it could've been a local recurrence in the lower bowel. Must have been a hard read on the PET scan, but was checked and confirmed unfortunately peri.
Over the last few weeks I have arranged a diagnostic laparoscopy, and confirmed a single met at the time. I now have a surgery confirmed (yesterday) for next Saturday for CRS/HIPEC with MMC as my hot chemo. So only a little time to plan, as have to move the family to the north island next mid next week.
Exciting times!

Awesome - Queenstown is definitely my favourite place in NZ. Amazing mountains and such good food.

Yep I’m in Melbourne, moved back here about a year ago for treatment. Was in Europe before that.

Great that it’s only a single peri met - I think the outcomes for that after surgery can be good. Fantastic that they’ve got onto it so quickly too - bummer you have to move north but it’ll all be worth it no doubt!

Good luck for the move and Saturday! Keep us updated

Rob

Hi all
So all went well enough for my Cytoreductive surgery with HIPEC on the 9th Nov. My surgery was an open surgery (there was mention initially of laparoscopic being possible), and took under 6 hours (including the HIPEC).
They found the original metastasis had grown and was starting to move in towards a tricky spot, but luckily they got in before it got there. They also found 2 more small ones in the omentum, and as per usual removed the omentum. My gallbladder was also removed. My adhesions from my previous hemicolectomy was quite extensive, so they opened up those as much as possible to explore in there.
I had Mitomycin C (MMC) HIPEC for 90 minutes.
I had a great recovery, and was not as bad as I was expecting. I guess it can be a tough one to recover from, but I was lucky enough to have my epidural work really well. They phased in my pain pump before they took out the epidural so it overlapped well, and only felt rough for about half a day when the epidural was removed. I was discharged after 9 days.
The only negative is the surgeon mentioned he would recommend I follow up with an oncologist - as he would recommend chemotherapy. I don't know why, and what type it would be? I was kind of hoping to avoid that stuff again, as my peripheral neuropathy is annoying and don't want it to worsen.
Does anyone have experience with what adjuvant chemotherapy would follow CRS/HIPEC for colon primary??? Surely it wouldn't be the regular CAPOX/FOLFOX as it doesn't usually help with peritoneal involvement?
I haven't had the details from the histology report yet.
It's now 2 weeks after the surgery and I'm feeling good, and managing to do most things. Feel lucky to have had this as an option, and now crossing my fingers I will be one of the few who beats the odds.
Anyone with info/advice for what to do after this procedure would be appreciated

nzjez,

I’m glad to see your CRS/HIPEC went well. I still lack one more round of FOLFOXFIRI and then a month off prior to my CRS/HIPEC. I will have completed 8 treatments prior and will do 4 after as
Mop up. My CEA has gone down from 31 to 16 after six treatments and my MRI at four treatments showed two spots were reduced to half the size.
I would definitely seek the opinion of an oncologist on chemo afterwards. What’s your CEA? Is it a reliable indicator for you?

Im so happy to hear you had the surgery and it went well.

Nicole

tcross wrote:nzjez,

I’m glad to see your CRS/HIPEC went well. I still lack one more round of FOLFOXFIRI and then a month off prior to my CRS/HIPEC. I will have completed 8 treatments prior and will do 4 after as
Mop up. My CEA has gone down from 31 to 16 after six treatments and my MRI at four treatments showed two spots were reduced to half the size.
I would definitely seek the opinion of an oncologist on chemo afterwards. What’s your CEA? Is it a reliable indicator for you?

Thanks Tadd
Your results from chemo sound fantastic! Nice one mate!
I never had chemo suggested prior to surgery, maybe because I never had an oncologist assigned??? Or maybe because I had only finished chemo in late May from after my Primary hemicolectomy surgery?
However, after my operation the surgeon has said he would recommend chemotherapy.
Hope your chemo cycles are going smoothly. Is it FOLFOXIRI , or FOLFOXFIRI? Are you on oxaliplatin/irenotecan/leucovin/5FU pump? Do you have a targeted therapy like bevacizumab added in?
I have annoying peripheral neuropathy from my previous chemo so I'm not so keen on Oxipilatin again. But I guess I'll do what it takes to try and get through it all.
My CEA has never been an indicator for me. Last year just prior to my emergency hemicolectomy it was normal. Also, I had a score of 0.8 just before they found my Peri mets.
I am now just 3 weeks after this major surgery, and I feel great. Havent had to take a pain killer for about a week or more.
I wish you the best for your upcoming op, and keep in touch if you ever want to chat about things.
Cheers
Jeremy

Trying wrote:Im so happy to hear you had the surgery and it went well.

Nicole

Thanks Nicole
I hope things are improving for you, and the chemo keeps shrinking that bad stuff!
Jeremy

nzjez wrote:

tcross wrote:nzjez,

I’m glad to see your CRS/HIPEC went well. I still lack one more round of FOLFOXFIRI and then a month off prior to my CRS/HIPEC. I will have completed 8 treatments prior and will do 4 after as
Mop up. My CEA has gone down from 31 to 16 after six treatments and my MRI at four treatments showed two spots were reduced to half the size.
I would definitely seek the opinion of an oncologist on chemo afterwards. What’s your CEA? Is it a reliable indicator for you?

Thanks Tadd
Your results from chemo sound fantastic! Nice one mate!
I never had chemo suggested prior to surgery, maybe because I never had an oncologist assigned??? Or maybe because I had only finished chemo in late May from after my Primary hemicolectomy surgery?
However, after my operation the surgeon has said he would recommend chemotherapy.
Hope your chemo cycles are going smoothly. Is it FOLFOXIRI , or FOLFOXFIRI? Are you on oxaliplatin/irenotecan/leucovin/5FU pump? Do you have a targeted therapy like bevacizumab added in?
I have annoying peripheral neuropathy from my previous chemo so I'm not so keen on Oxipilatin again. But I guess I'll do what it takes to try and get through it all.
My CEA has never been an indicator for me. Last year just prior to my emergency hemicolectomy it was normal. Also, I had a score of 0.8 just before they found my Peri mets.
I am now just 3 weeks after this major surgery, and I feel great. Havent had to take a pain killer for about a week or more.
I wish you the best for your upcoming op, and keep in touch if you ever want to chat about things.
Cheers
Jeremy

I’m hopeful my surgery will go as smooth as yours. I just finished round 8 of FOLFOXFIRI. Oxaliplatin, Irinotecan and 5FU pump...no targeted therapy as the genetic testing showed no benefit for my mutation.

I’m currently on a one month break to recover from chemo prior to surgery. My oncologist at my last appointment stated we will wait to see results from the surgery prior to performing more chemo. If CEA, MRI/CT, and liquid biopsies reveal nothing we may take a wait and see approach.

If CEA is not a good indicator have you considered a liquid biopsy/CTDNA test?

Yes I have. In fact, thats the only place my cancer has spread to. I've had cytoreductive surgery and will likely have another one this Spring. I'd be happy to answer any questions if you have any.

tcross wrote:You can seek out information at insurancewarrior.com for how to appeal. The author appealed her HIPEC 14 years ago and won. She had appendixeal cancer but there are several with colon cancer that are survivors as well.

Could you check this link again? All I get is an insurance company, with quotes for different kinds of insurance.

Lolly wrote:

tcross wrote:You can seek out information at insurancewarrior.com for how to appeal. The author appealed her HIPEC 14 years ago and won. She had appendixeal cancer but there are several with colon cancer that are survivors as well.

Could you check this link again? All I get is an insurance company, with quotes for different kinds of insurance.

Sorry about that...here you go-> http://www.theinsurancewarrior.com
The author is Laurie Johson Todd.

She is also on Facebook and reached out to me over the phone to talk as well.

tcross wrote:

Lolly wrote:

tcross wrote:You can seek out information at insurancewarrior.com for how to appeal. The author appealed her HIPEC 14 years ago and won. She had appendixeal cancer but there are several with colon cancer that are survivors as well.

Could you check this link again? All I get is an insurance company, with quotes for different kinds of insurance.

Sorry about that...here you go-> http://www.theinsurancewarrior.com
The author is Laurie Johson Todd.

She is also on Facebook and reached out to me over the phone to talk as well.

Thank you.

Rock_Robster wrote:

nzjez wrote:

tcross wrote:I’m in the same boat as you currently. Found out in August I have spread in the periometuem. I’m currently three rounds into FOLFOXFIRI and had a diagnostic laparoscopy conducted two weeks ago and given a PCI of 6. The plan is to perform 6-9 chemo sessions prior to CRS/HIPEC and then another 3-6 after and then take it from there.
Most insurance companies will fight paying for the HIPEC portion but CRS is typically covered. You can seek out information at insurancewarrior.com for how to appeal. The author appealed her HIPEC 14 years ago and won. She had appendixeal cancer but there are several with colon cancer that are survivors as well.
Find an NCI-designated hospital and they will have a surgeon that specializes in the procedure. https://www.cancer.gov/research/nci-rol ... nters/find

Hi Tcross
Sorry to hear you've also found this
I'm really impressed your team has moved along with treatment so fast - I'm 3 weeks in and nothing has happened. First investigatory calls made yesterday during our follow up appt.
Don't know if I should be on Chemo now? Maybe CRS/HIPEC or Pelvic Exenteration ops if possible. I mention about laparoscopic surgery to find extent of spread- and he said not necessary as PET tells them all they need. Weird as I keep reading about the PCI scoring system for CRS feasibility?!
My surgeon is very well respected, but in my region they are extremely under resourced and worry this fact might effect my outcomes due to time delays.
What were your timeframes after discovery of peri meds? It sounds like things moved fast.
All the best with your treatment!
Cheers
Jeremy

Hi Jeremy, thanks for the update - this is all helpful.

The surgeries you’re discussing are no small thing, so it makes sense to take the time to get the right procedure, with the right surgeon in the right hospital. A couple of weeks are not going to make a major difference to your outcome, but getting these things right could.

That said, time is never on our side - and unfortunately no-one else will likely push as hard as we can. For this, you need to stay on them - it’s easy to lose a couple of weeks with every step, and you don’t want this delay to build up. Keep the pressure on and try for quick turnarounds on appointments etc.

Like you I thought exploratory lapro was fairly standard prior to CRS, however perhaps he is confident enough based on the PET and will make the final call during the surgery. If so and it saves you a procedure and delay, then great.

In terms of neoadjuvant chemo, I’d seek the advice of a medical oncologist with experience in peri mets. Typically with metastatic disease they like to achieve some degree of ‘systemic control’ prior to surgery, however I don’t know how applicable this is to peri mets given the area is famously not well vascularised and traditional chemo is of limited effectiveness anyway.

I note you mention BRAF testing wasn’t done - whilst it’s not highly likely I would also be asking to rule this out as it would change your treatment regime.

Hope this is of some help; feel free to come back on any specifics.

Cheers
Rob

Hey Rob
Just found out my testing showed I have the BRAF mutation. Guess its V600E.
Its was an optional test (no public funding) to have it the done, and cost $500 in NZ. But glad I now know, and gives me different treatment options in my arsenal.
However prefer if I didnt have the mutation
Does anyone know the best, more modern treatments for BRAF stage IV CRC? Everything I read online about BRAF seems so grim and would like if something promising is out there?

Hey mate, thanks for the update. As you say, at least now you know and can tackle it with the right tools. Could be the best $500 you’ve ever spent.

As far as I know the most current/emerging protocols for v600e are the BEACON triplet (encorafenib, binimetinib, cetuximab), and the TRIBE protocol (aka FOLFOXIRI (fluorouracil, oxaliplatin, irinotecan, leucovorin) with or without Avastin (bevacizumab)). There appears to be a lot of emerging science behind the sequencing of these though, including using liquid biopsies to track the changes to the “BRAF-ness” of the tumour over time and adjust therapy accordingly. Some of the results are really quite promising, and a significant improvement on the older prognoses you may have been reading.

The only other thing I’d say is that you comment that you “guess it’s v600e”. I’d get this confirmed ASAP as about 25% of BRAF mutations aren’t, and it would hence have a completely different treatment direction, etc.

I’m not a BRAF expert but I know someone who is - let me connect you via message if that works?

Cheers
Rob