Starting point

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Green Tea
Posts: 414
Joined: Mon Oct 24, 2016 10:48 am

Re: Starting point

Postby Green Tea » Fri May 07, 2021 1:36 pm

IsmailMehdi wrote:...Treatment should start Thursday, so my journey starts then. I’ll try to share here as much as I can. There aren’t many RC SRC here and going back to old threads is rough. I hope my experience will be helpful to others that surely will follow.

If you are starting FOLFOX next Thursday, here's a FOLFOX patient's journal that you could review before then in preparation:

FOLFOX chemotherapy; a patient's guide
http://www.unixwiz.net/techtips/folfox6.html

Good luck on your start of TNT FOLFOX! Let us know how it goes.

worriedson714
Posts: 20
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Starting point

Postby worriedson714 » Tue May 11, 2021 3:03 pm

catstaff wrote:Total neoadjuvant treatment is the standard in most centers for rectal cancer now. Often it's in the reverse order (CRT then chemo). However, the signet-ring cell feature is uncommon and particularly so for rectal, so you are sensible to want some evidence the chemo is working. My DH just had an aggressive Grade 3 tumor, no signet-ring cell or mucinous features, but folfox failed completely; the tumor had been knocked down by the radiation but actually regrew some under folfox. Then he had a local recurrence. We are left wondering whether he might have had a better outcome if they'd skipped or shortened the chemo.



This is my dad's story stage 3 rectal they even said cure a bunch of times and where so sure that chemo , rad would knock it down and my dad might even avoid a colostomy for the rest of his life . However that didn't happen folfox , rad didn't touch it and he ended up with a colostomy and they couldn't even get it all which ended up costing him the prostate and bladder and still haven't gotten it all . I have spent everyday for the last two years wondering why we didn't push for the surgery harder so my advice push for the surgery first get it out of you now if its a option .

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Tue May 11, 2021 3:40 pm

worriedson714 wrote:
catstaff wrote:Total neoadjuvant treatment is the standard in most centers for rectal cancer now. Often it's in the reverse order (CRT then chemo). However, the signet-ring cell feature is uncommon and particularly so for rectal, so you are sensible to want some evidence the chemo is working. My DH just had an aggressive Grade 3 tumor, no signet-ring cell or mucinous features, but folfox failed completely; the tumor had been knocked down by the radiation but actually regrew some under folfox. Then he had a local recurrence. We are left wondering whether he might have had a better outcome if they'd skipped or shortened the chemo.



This is my dad's story stage 3 rectal they even said cure a bunch of times and where so sure that chemo , rad would knock it down and my dad might even avoid a colostomy for the rest of his life . However that didn't happen folfox , rad didn't touch it and he ended up with a colostomy and they couldn't even get it all which ended up costing him the prostate and bladder and still haven't gotten it all . I have spent everyday for the last two years wondering why we didn't push for the surgery harder so my advice push for the surgery first get it out of you now if its a option .


I'm really sorry to hear that. Have you explored immunotherapy for him ? I keep pushing my oncologist to do the Frontier one test and will probably drop her if she does not. As mentioned FOLFOX is not certain to work, so one must make sure before investing months into something that is not working.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

catstaff
Posts: 85
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Tue May 11, 2021 7:54 pm

Presurgery radiation (usually chemoradiation since it's some form of 5FU+radiation) is usually effective. It almost certainly did help my husband since it seems to have killed some lymph-node mets as well as stopped the activity of the primary for a while. His CEA went all the way down to 1.6 after the radiation, the lowest it's been. I've just become skeptical about the benefit of presurgery folfox for more aggressive tumors (which are not particularly common for CRC). I'll also note that we were told that the biopsy specimen from when he was diagnosed was G2 (moderately differentiated), the most common grade for CRC, then the surgical specimen was graded G3 (poorly differentiated). So I'm not sure what the story there was. It was different pathologists and there is some subjectivity in the classification, or it could have been a heterogeneous tumor. So as far as his oncologist knew from his records at the time, it was the more usual G2, which probably would have responded better.

Unfortunately nearly all colorectal tumors are immunologically "cold" and do not respond to immunotherapy by itself. There are several clinical trials right now trying various other treatments along with checkpoint inhibitors (Keytruda etc.) but they don't know yet what may work. We are hoping to keep the boat afloat here with folfiri/bev until they figure out the best approach.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Rock_Robster
Posts: 562
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Starting point

Postby Rock_Robster » Tue May 11, 2021 8:55 pm

I can add that my pre-op chemoradiation was also very effective - I did 5 weeks of IMRT radiation with oral capecitabine, after which I had no abnormal activity on a PET scan, and all nodes were normal size. I had 1/26 nodes positive on pathology, compared to 3 on initial staging imaging.

My only suggestion would be to look more into short- vs long-course radiation - the evidence for effectiveness between the two is very similar but short course (~5 days at higher dosing) means your surgery happens *much* faster (as you also typically don’t do the 8-10 week wait afterwards), which has other potential benefits. I believe MSKCC are finally moving to short-course now triggered by Covid-related constraints. Short course has been the standard in Europe and the UK for quite some time.

Rob
39M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Mar ‘21

saltygirl
Posts: 17
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Starting point

Postby saltygirl » Tue May 11, 2021 11:42 pm

What about folfoxiri? I had 6 treatments before surgery and had full pathological response for a big tumor. No cancer cells found at surgery.

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Wed May 12, 2021 8:10 am

saltygirl wrote:What about folfoxiri? I had 6 treatments before surgery and had full pathological response for a big tumor. No cancer cells found at surgery.


Thanks saltygirl, this is super odd and timely information. My chemo starts tomorrow and I just received a call from my oncologist. She just changed the treatment from FOLFOX to FOLFOXIRI. Apparently trying to go all out after this cancer.
I hope to get a good response like you :D I'll have more details tomorrow about specifics of the treatment, but right now, FOLFOX starts tomorrow and from the second session, i switch to FOLFOXIRI.
Last edited by IsmailMehdi on Wed May 12, 2021 8:45 am, edited 1 time in total.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Wed May 12, 2021 8:12 am

Rock_Robster wrote:I can add that my pre-op chemoradiation was also very effective - I did 5 weeks of IMRT radiation with oral capecitabine, after which I had no abnormal activity on a PET scan, and all nodes were normal size. I had 1/26 nodes positive on pathology, compared to 3 on initial staging imaging.

My only suggestion would be to look more into short- vs long-course radiation - the evidence for effectiveness between the two is very similar but short course (~5 days at higher dosing) means your surgery happens *much* faster (as you also typically don’t do the 8-10 week wait afterwards), which has other potential benefits. I believe MSKCC are finally moving to short-course now triggered by Covid-related constraints. Short course has been the standard in Europe and the UK for quite some time.

Rob



I appreciate the insight Rob, i was offered the short course as an option. My fear is that signet ring is super aggressive and a 5x5 may not cut it. It may have a great effect on the tumor proper, but this beast spreads really fast and it may already be all over my pelvis.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

catstaff
Posts: 85
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Wed May 12, 2021 9:23 am

FOLFOXIRI is the heavy artillery so good luck.

There probably isn't any good data to help with a decision over short-course radiation versus long-course, since G3 is not common in rectal by itself and signet-ring cell is even less so. I guess you are doing chemo first so you may have the chance to assess how well it responds to that and reconsider options. Quicker surgery may be beneficial here.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

saltygirl
Posts: 17
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Starting point

Postby saltygirl » Wed May 12, 2021 11:53 am

Folfoxiri is hard. And recommended to younger patients or otherwise healthy. Please don’t be scared. I spent a week hiking, water rafting. Another time I went skiing and to Disneyworld while on treatment. The off week was pretty manageable. My cancer is also aggressive. But responded well to treatment.

saltygirl
Posts: 17
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Starting point

Postby saltygirl » Wed May 12, 2021 11:58 am

I had 5 days short term but intense radiation before surgery.

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

Re: Starting point

Postby IsmailMehdi » Wed May 12, 2021 12:39 pm

saltygirl wrote:Folfoxiri is hard. And recommended to younger patients or otherwise healthy. Please don’t be scared. I spent a week hiking, water rafting. Another time I went skiing and to Disneyworld while on treatment. The off week was pretty manageable. My cancer is also aggressive. But responded well to treatment.

Thank you for the positive energy, i hope to take this on with as much courage as you've shown. Praying for a good outcome for everyone.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

User avatar
Green Tea
Posts: 414
Joined: Mon Oct 24, 2016 10:48 am

Re: Starting point

Postby Green Tea » Thu May 13, 2021 3:48 am

<Post under revision>
Last edited by Green Tea on Thu May 13, 2021 12:08 pm, edited 1 time in total.

Rock_Robster
Posts: 562
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Starting point

Postby Rock_Robster » Thu May 13, 2021 7:04 am

Without wanting to be that guy, I’m pretty sure there’s a difference in protocol between FOLFOXIRI and FOLFIRINOX? Just to avoid any confusion down the track.

Rob
39M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Mar ‘21

catstaff
Posts: 85
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Thu May 13, 2021 8:20 am

According to famed medical text Wikipedia, it's the same drugs but FOLFIRINOX is harsher (it is used mainly for pancreatic cancer) and FOLFOXIRI is usually administered with bevacizumab.

Added later: and I happened upon this just now
https://ascopost.com/news/april-2021/ad ... al-cancer/
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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