Input & comments sought on stage IV treatment plan

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Rock_Robster
Posts: 15
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Input & comments sought on stage IV treatment plan

Postby Rock_Robster » Fri Nov 09, 2018 1:24 am

Hi all, so I now have my plan from the oncologist, and looks like the below.

As I’m currently very lucky to have operable liver mets, we are still working with curative intent and the primary goal of initial chemo is not so much huge reduction (though this would be nice) but to get some systemic chemo done before surgery to prevent further spread or growth in the interim.

Sequence:
1. Port installation
2. Chemo - FOLFOX, 4-6 rounds
3. CT scan and a 4 week break pre-surgery
4. Liver resection
5. CT scan
6. 6 weeks chemoradio therapy - 5FU or Xeloda, with long course radiation on primary tumour (2x25 Gy)
7. CT scan
8. 4 week break pre-surgery
9. Rectal resection - ultra low anterior resection, temp Ileostomy
10. Chemo - FOLFOX, remaining doses to get to 12 in total (but only 8-9 in total with oxy)
11. CT scan
12. Ileo reversal

He said he considered doing FOLFOXIRI and adding Avastin, but given the the mets are operable now he didn’t think the slight increased response chance warrants the significantly higher toxicity risk. I was keen for the most aggressive treatment possible, but also understand his position on risk/benefit balance. He also wants to limit the oxy to 8 rounds in total as he believes the neuropathy damage increases exponentially after this.

Based on your experiences, I’d be very grateful for any thoughts on this approach - and also any specific tips to survive this particular sequencing!

I asked about the HAI pump and he said it was “old technology which is not really beneficial since we’ve had platinum-based chemo drugs”. He did say they could install/maintain it but it’s not their standard therapy (and can have serious side effects).

I also asked about doing the liver and rectal resects together, and both surgeons said it would be too long an operation with too great a risk of complications.

I was thinking of getting a Remote Second Opinion from perhaps MSKCC and/or Dana-Farber.

Any immediate reactions to the above? Should I be getting on a plane to NYC?

Thanks!
Last edited by Rock_Robster on Sat Nov 10, 2018 10:18 pm, edited 1 time in total.
Male age 36 years; Melbourne, Australia
10/2018 DX: Rectal Cancer, 3.5 cm adenocarcinoma, 10 cm from verge. Well/Mod differentiated. T3N1bM1a.
PET/CT/MRI completed
3 suspect lymph nodes (regional) and 4 mets to liver (2 larger, 2 smaller), surgical margins clear
MSI negative, MMR proficient. Lynch likely negative
Mutation in NRAS on codon 13

User avatar
Maggie Nell
Posts: 842
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Input & comments sought on stage IV treatment plan

Postby Maggie Nell » Fri Nov 09, 2018 3:41 am

That plan sounds pretty good from where I sit, mate. Which cancer centre did you check in with?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Rock_Robster
Posts: 15
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Input & comments sought on stage IV treatment plan

Postby Rock_Robster » Fri Nov 09, 2018 5:17 am

Thanks Maggie, appreciated. This plan was from a private oncologist who used to be a Director at Peter Mac; I get the ‘official’ Peter Mac plan on Tuesday to compare (this guy was originally going to be my second opinion but actually got all the consults organised much faster than them)
Male age 36 years; Melbourne, Australia
10/2018 DX: Rectal Cancer, 3.5 cm adenocarcinoma, 10 cm from verge. Well/Mod differentiated. T3N1bM1a.
PET/CT/MRI completed
3 suspect lymph nodes (regional) and 4 mets to liver (2 larger, 2 smaller), surgical margins clear
MSI negative, MMR proficient. Lynch likely negative
Mutation in NRAS on codon 13

Gravelyguy
Posts: 57
Joined: Thu Jul 05, 2018 6:03 pm

Re: Input & comments sought on stage IV treatment plan

Postby Gravelyguy » Fri Nov 09, 2018 7:22 am

Looks pretty good to me. I am not sure of your liver involvement but I otherwise was in a very similar boat. At Mayo they had me go through 4 rounds of FOLFOX with Vectibix. Then, because of the great response to the chemo, only short course radiation. A couple of days after that they did the surgery for both liver and rectum. I took 6 weeks off then 8 more rounds of just FOLFOX.

I only had 2 very small liver Mets so that may have played a part but I got the impression they like to do combined surgery when possible.


I had no neuropathy until after the 11th round. So I buy the 8 round part.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Input & comments sought on stage IV treatment plan

Postby hiker » Fri Nov 09, 2018 8:28 am

Hey Rock,

Obviously you have to do what feels right to you and the plan doesn't sound bad. However, any oncologist who says HAI is “old technology which is not really beneficial since we’ve had platinum-based chemo drugs” is completely full of crap and I honestly can't take them seriously. Maybe it just touches a nerve with me since one of the oncologists I saw before I went to MSK told me the same thing - his plan was chemo for life which wouldn't be more than two years. HAI pumps have been preventing recurrences after surgery and getting people who are inoperable to operable for decades.

You say you were looking for the most aggressive treatment possible - I believe HAI is just that. It's unfortunate that so many oncologists talk it down. One question for your oncologist - how many stage iv patients has he treated who are alive after 5 years and 10 years? Dr. Kemeny at MSK is hitting on 80% and 60%, respectively, which is outstanding.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

Ehut
Posts: 193
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Input & comments sought on stage IV treatment plan

Postby Ehut » Fri Nov 09, 2018 10:09 am

Since your liver is operable as-is, I think the HAI is less critical. My DX was similar to yours and I was treated at Mayo in Rochester 6.5 years ago. They did a synchronous resection (liver+rectum) during the same surgery. Also, they gave me the choice between short course and standard course radiation because statistically the outcomes were about the same, so I chose short course the week before surgery. Otherwise my treatment was about the same as yours and I wouldn't change anything based on the outcome.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

FightCRC
Posts: 11
Joined: Fri May 25, 2018 10:39 pm

Re: Input & comments sought on stage IV treatment plan

Postby FightCRC » Fri Nov 09, 2018 2:24 pm

hiker wrote:Hey Rock,

Obviously you have to do what feels right to you and the plan doesn't sound bad. However, any oncologist who says HAI is “old technology which is not really beneficial since we’ve had platinum-based chemo drugs” is completely full of crap and I honestly can't take them seriously. Maybe it just touches a nerve with me since one of the oncologists I saw before I went to MSK told me the same thing - his plan was chemo for life which wouldn't be more than two years. HAI pumps have been preventing recurrences after surgery and getting people who are inoperable to operable for decades.

You say you were looking for the most aggressive treatment possible - I believe HAI is just that. It's unfortunate that so many oncologists talk it down. One question for your oncologist - how many stage iv patients has he treated who are alive after 5 years and 10 years? Dr. Kemeny at MSK is hitting on 80% and 60%, respectively, which is outstanding.

hiker


The treatment plan looks appropriately aggressive. But yes, hiker is correct. Your oncologist is simply ignorant of HAI. Not really a knock (other than he should just admit it, rather than spread disinformation), as he's far from alone. Oncologists offer what they know. Most don't know HAI.

Ironically, Dr. Kemeny was lead researcher for oxaliplatin. Without her, there might not be FOLFOX, the most common platinum-based chemo for CRC. And yet, she still does HAI.

Here's the common misconception about HAI amongst oncologists: That it doesn't improve overall survival. This was based on a trial which had two groups, both with liver-limited disease: One that was treated with systemic chemo only, and one that was treated with HAI only. The group with systemic chemo, their livers ultimately failed, as systemic chemo alone is not enough to rid the liver of mets. The HAI group treated the liver well, but the pump doesn't help prevent spread (which is what systemic chemo does). So both groups had similar survival rates. The conclusion drawn was that there was no net benefit to HAI, as patient survival wasn't improved with it. Therefore, why make the effort to learn such a costly and labor-intensive procedure?

What Dr. Kemeny figured out, is that it's not an either/or scenario. To give the patient the best chance at NED, you should do BOTH. HAI and systemic together. That's what's resulted in the improved patient outcomes for those who get the treatment from dedicated HAI programs.

As you are currently resectable, you may not need a pump (and as your oncologist knows nothing about it, I wouldn't trust him to put on in, anyway). However, it is proven to be effective adjuvant therapy, post-resection. Whatever you decide to do, I wish you the best.

Rock_Robster
Posts: 15
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Input & comments sought on stage IV treatment plan

Postby Rock_Robster » Sat Nov 10, 2018 1:08 am

Thanks everyone for the responses so far - this is super helpful and very encouraging. Feel free to keep them coming!

On the surgeries, does any have any specific experiences with doing the rectal and liver resections simultaneously? I thought this was common, but given I’m looking at a ULAR for the rectal tumour (lapro-assisted) and 3 segments for the liver (1 left lobe, 2 right lobe - so open surgery), perhaps it’s indeed too much. Thanks again
Male age 36 years; Melbourne, Australia
10/2018 DX: Rectal Cancer, 3.5 cm adenocarcinoma, 10 cm from verge. Well/Mod differentiated. T3N1bM1a.
PET/CT/MRI completed
3 suspect lymph nodes (regional) and 4 mets to liver (2 larger, 2 smaller), surgical margins clear
MSI negative, MMR proficient. Lynch likely negative
Mutation in NRAS on codon 13

Ehut
Posts: 193
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Input & comments sought on stage IV treatment plan

Postby Ehut » Sat Nov 10, 2018 9:21 am

Mine were simultaneous, and they did open surgery instead of laparoscopic to shorten the time under anaesthesia (was still 8 hours). The recovery was pretty rough but at least I didn't need another surgery. They also set up a temporary loop ileostomy which I had reversed in a small surgery 7 months later.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

hiker
Posts: 73
Joined: Thu Aug 09, 2018 10:15 am

Re: Input & comments sought on stage IV treatment plan

Postby hiker » Sat Nov 10, 2018 10:22 am

I had a 6 hr robotic/laparoscopic colon resection and almost four months later a 5 1/2 hr open liver resection/HAI pump implant surgery. The only reason mine were done separately was because my local doctors' plan was colon resection, chemo for a couple years, then die. I really didn't like that plan, but went ahead with the colon resection because I was almost completely blocked and didn't have time to investigate options at that point.

If I had it all to do over, I would have gone straight to MSK and had one surgery for everything. They could make it happen.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

Mattie
Posts: 58
Joined: Fri Mar 07, 2014 1:06 am

Re: Input & comments sought on stage IV treatment plan

Postby Mattie » Sat Nov 10, 2018 3:31 pm

The only thing I can share is that when I did chemo, my liver met completely disappeared and did not come back for 3 years. I had my liver resection when it came back. Good luck. Having a plan always feels so good. I wish you the best!
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, sticking with Xeloda/Avastin
8/17 still NED Dropping xeloda. Avastin only.
10/18 still NED sticking with Avastin only

PetesStupidBowel
Posts: 2
Joined: Mon Jul 30, 2018 5:45 am

Re: Input & comments sought on stage IV treatment plan

Postby PetesStupidBowel » Sun Nov 11, 2018 3:56 am

Hi

Nothing to add about the plan (bit different to mine), but just saying hello to a fellow Melbournian who is meeting awesome people at Peter Mac :)

Gravelyguy
Posts: 57
Joined: Thu Jul 05, 2018 6:03 pm

Re: Input & comments sought on stage IV treatment plan

Postby Gravelyguy » Mon Nov 12, 2018 7:15 am

I had open combined surgery. Mine was also ULAR about 4 mm from the anal verge. It took longer than they expected only because they had trouble finding the tumors in the liver. The chemo had shrunk them so much. Both of the liver Mets were in the right lobe so maybe that makes a difference. I think mine ran about 5-6 hours.
Thankfully I don’t remember much of it!

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Rock_Robster
Posts: 15
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Input & comments sought on stage IV treatment plan

Postby Rock_Robster » Mon Nov 12, 2018 3:05 pm

Thanks Gravelyguy - that’s very interesting. Was the liver surgery open or laproscopic? Thanks
Male age 36 years; Melbourne, Australia
10/2018 DX: Rectal Cancer, 3.5 cm adenocarcinoma, 10 cm from verge. Well/Mod differentiated. T3N1bM1a.
PET/CT/MRI completed
3 suspect lymph nodes (regional) and 4 mets to liver (2 larger, 2 smaller), surgical margins clear
MSI negative, MMR proficient. Lynch likely negative
Mutation in NRAS on codon 13

Gravelyguy
Posts: 57
Joined: Thu Jul 05, 2018 6:03 pm

Re: Input & comments sought on stage IV treatment plan

Postby Gravelyguy » Mon Nov 12, 2018 8:16 pm

It was all open. I have a nice scar from my sternum to points south. I think one tumor was on the back side of the liver so they needed to turn the liver over to get to it.

I had very experienced surgeons for both the rectum and liver. I think that was a major impact on how well I recovered.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear


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