Treatment break - advice sought!

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Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Treatment break - advice sought!

Postby Rock_Robster » Sun May 26, 2019 10:15 pm

Hi all, I need some input please if you have a moment.

I just finished long-course chemoradiation treatment prior to surgery on my primary rectal tumour, and I now have a 7 week break. I had previously discussed with my onc doing an additional 2 cycles of FOLFOX during this time, but he has now recommended deferring it until after the surgery in light of some mild but persistent peripheral neuropathy from my neoadjuvant chemo.

I am both relieved and stressed by this. It feels like a long time off chemo (last FOLFOX was before my liver resection in March), and aside from the neuropathy I feel fit and well enough to handle it. But as he said, permanent nerve damage is no fun. I asked if I could just do 5-FU and he said if I were to do that then I might as well just stay on the Xeloda (from the chemoradiation), but the benefit would be largely psychological. I’ve tolerated the Xeloda ok, but of course if there’s no material survival benefit then it would be unnecessary treatment.

So as far as I can see, I have 3 options:

1. Kick, scream and beg to do the FOLFOX now, and take what the neuropathy brings,
2. Wait the 7 weeks but do ‘maintenance’ Xeloda to keep myself sane, or
3. Take the 7 weeks to focus on eating well, fitness, supplementation (I have an integrative oncology person too); then go hard for surgery and adjuvant chemo

Any thoughts or votes on the above greatly appreciated! (Or anything else I should be considering doing).

Thanks as always,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

Re: Treatment break - advice sought!

Postby Milk Tea » Mon May 27, 2019 12:34 am

Rob,
I will do Folfox now. If you are young and healthy, I would do the most aggressive treatment you can tolerate. Take B12, do acupuncture and buy a foot massager machine for neuropathy.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Treatment break - advice sought!

Postby Green Tea » Mon May 27, 2019 1:08 am

It might help in your decision-making process if you got tested for Vitamin B12 deficiency before starting any new treatment regimen. If the treatment regimen is likely to damage the nerves, then you may need to pay attention, in advance, to Vitamin B12 supplementation.
A deficiency in vitamin B12 can also result in varying degrees of neuropathy, nerve damage that can cause tingling and numbness in a person's hands and feet.
Reference: https://www.labtestsonline.org.au/learning/test-index/vitamin-b12

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Treatment break - advice sought!

Postby Pyro70 » Mon May 27, 2019 8:43 am

I would not do FOLFOX. Neuropathy often worses after discontinuing therapy, so you don’t event know how bad it is now. There is also increasing evidence that a shorter course of FOLFOX is as effective as a longer one.

Sticking with 5FU/xeloda though is sensible. I don’t really agree that it would be only “psychological” benefit. In the FOLFOX regime the majority of benefit is thought to come from 5FU. Switching to a 5FU maintenance therapy is an accepted strategy. You could go either way though.
Last edited by Pyro70 on Mon May 27, 2019 4:40 pm, edited 2 times in total.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

Dionca
Posts: 39
Joined: Sat Dec 02, 2017 2:04 am

Re: Treatment break - advice sought!

Postby Dionca » Mon May 27, 2019 10:15 am

I'm confused - why would continuing with the xeloda be just considered to be of "psychological benefit". It's chemo, not carrot juice.

I would opt for either continuing with xeloda or having FOLFOX without the oxi.

Good Luck!
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum, ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 add'l node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (without oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: Treatment break - advice sought!

Postby rp1954 » Mon May 27, 2019 11:01 am

Rock_Robster wrote:I just finished long-course chemoradiation treatment prior to surgery on my primary rectal tumour, and I now have a 7 week break. I had previously discussed with my onc doing an additional 2 cycles of FOLFOX during this time, but he has now recommended deferring it until after the surgery in light of some mild but persistent peripheral neuropathy from my neoadjuvant chemo.

I am both relieved and stressed by this. It feels like a long time off chemo (last FOLFOX was before my liver resection in March), and aside from the neuropathy I feel fit and well enough to handle it. But as he said, permanent nerve damage is no fun. I asked if I could just do 5-FU and he said if I were to do that then I might as well just stay on the Xeloda (from the chemoradiation), but the benefit would be largely psychological. I’ve tolerated the Xeloda ok, but of course if there’s no material survival benefit then it would be unnecessary treatment.

Dionca wrote:I'm confused - why would continuing with the xeloda be just considered to be of "psychological benefit". It's chemo, not carrot juice.

The oncologist appears to be speaking in a broad statistical sense for Folfox, that there may be almost no additional benefit for incremental treatments without additional insights or identifiable risk factors. We accepted CA199(+CSLEX1) stained tissue as a known metastatic risk factor.

*Each* heavy chemo treatment has some risk, some kinds cumulative or more than others, some risks related to staff alertness and readiness. Witness the patients here who experienced allergic or anaphalactic reactions, organ injury, or even died, during or soon after, a chemo treatment. Just a week ago, at an informal lunch at a friend's house, between cancer patients for other cancers, right out of the blue: "My brother with CRC died on his fourth chemo" (from chemo). BAM. So patients walk a fine line, Benefit and Risk, dr selection and mental preparations.

One of oncology's stage 2-3 treatment conclusions that I respect is that chemo intensity is more important than chemo duration, at least for less metastatic molecular biology. That is, perhaps crudely expressed as "burning out" (somewhat resistant) residual cancer cells. This observation starts back years ago with some mild 5FU trials up to two years long not having survival advantage over 1 year of treatment, or where Folfox might gain a few percent survival at 2-5 years post tx, after 6 months treatment, finally down to as low as three months tx, depending on risk factors.

However, for someone who is mCRC, stage 4, has especially metastatic molecular biology (e.g. CA199+ CSLEX1+ tissue), and/or tests with circulating tumor cells, some kind of effective maintenance chemo certainly has an appeal. We pushed for both maintenance intensity and duration yet less side effects.
So as far as I can see, I have 3 options:
1. Kick, scream and beg to do the FOLFOX now, and take what the neuropathy brings,
2. Wait the 7 weeks but do ‘maintenance’ Xeloda to keep myself sane, or
3. Take the 7 weeks to focus on eating well, fitness, supplementation (I have an integrative oncology person too); then go hard for surgery and adjuvant chemo

However, even extra days of additional Xeloda in excess can rapidly deteriorate a patient's bloodwork, with special respect for the prior radiation. Various papers indicate some patients benefit from maintenance chemo with milder components e.g. celecoxib, aspirin, cimetidine, PSK, especially when targeted by companion markers. Likewise, a common observation here is that specialized nutrition can greatly improve patients' side effect profile if well done. Some papers indicate improvements in chemo performance are possible this way, too.

So we chose to combine choices 2 and 3 in a run up to surgery, daily oral chemo intensified by nutraceuticals and mild drugs with a minimal side effect footprint. This is where I would be most diligent, consult around, and demand more with integrative oncology results. With multiple opinions, the goal is to achieve maximum "intensity", beat on personal targets or cancer pathways, dramatically improve physical condition in the run up to surgery, to the surgeon's specifications (for us, this included PT/INR and PTT levels). I don't have background chemo information on liver surgery, with big potential bleed issues. I will note that the potential chemo exclusion period for my wife's non liver surgery could have been 6, 4, 3, 2, or 0 weeks before/after surgery, depending on the global medical source and treatment approach. In reality, after checking and careful tx construction, we phased some things down/out the last week or days before surgery, when she was doing very well.

A lot depends on how much skill and experience you can rapidly bring into focus on your biology with your consults, and then execute on.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Treatment break - advice sought!

Postby Rock_Robster » Sat Jun 01, 2019 9:12 am

Thanks all, really appreciate the input. This forum is fantastic.

rp1954 - thanks as always for all the helpful detail.

At the moment I’m leaning toward the Xeloda plus supplements/nutraceuticals - either at therapeutic or metronomic dose. Will speak with onc this week to finalise. Neuropathy is still hanging around (potentially slightly worse) so I think delaying the FOLFOX for now was the right call.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Treatment break - advice sought!

Postby Rock_Robster » Sat Jun 01, 2019 9:14 am

Green Tea wrote:A deficiency in vitamin B12 can also result in varying degrees of neuropathy, nerve damage that can cause tingling and numbness in a person's hands and feet.
Reference: https://www.labtestsonline.org.au/learning/test-index/vitamin-b12
[/quote]
Thanks Green Tea, I’m not currently B12 deficient (since reintroducing some red meat during treatment), but the naturopath still has me on heavy B and E vitamin supplementation for neuropathy (and radiation recovery).
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Treatment break - advice sought!

Postby Rock_Robster » Sat Jun 01, 2019 9:17 am

Dionca wrote:I'm confused - why would continuing with the xeloda be just considered to be of "psychological benefit". It's chemo, not carrot juice.

Thanks Dionca, indeed I think rp1954 got it right when suggesting he was going off statistical averages. That is to say that a few weeks of Xeloda in between CRT and surgery would, across a population, have a negligible impact on overall survival. Not to say that Xeloda does nothing.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal


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