What options after chemo no longer effective?

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Pyro70
Posts: 156
Joined: Mon Jan 21, 2019 4:25 pm

Re: What options after chemo no longer effective?

Postby Pyro70 » Fri Apr 12, 2019 9:13 pm

zephyr wrote:
rp1954 wrote:I had the live tumor tissue tested with various chemo formulations by an outside lab.


I'm seeing my ND today and I'm going to ask her about finding a lab to do this kind of testing. It's something that somehow never occurred to me. Live and learn.

Do you mind sharing the name of lab you used? If not, no worries - but if you don't mind and if it's inappropriate to post here, please PM or email me.

Thanks.


I’ve never heard of an oncologist recommending this approach nor of a clinical trial showing the validity of it. Also, since so many agents work “in vitro” (in a test tube) in pre-clinical work, but then fail to be effective “in vivo” (in the body), there is little rationale for thinking that outside the body testing translates to IV chemo efficacy.
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

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: What options after chemo no longer effective?

Postby brokenwings » Sat Apr 13, 2019 3:32 am

I know nothing about clinical trials but I found this one in Phase 3, concerning IV Vitamin C:

https://clinicaltrials.gov/ct2/show/NCT02969681.

What do you think?
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

Pyro70
Posts: 156
Joined: Mon Jan 21, 2019 4:25 pm

Re: What options after chemo no longer effective?

Postby Pyro70 » Sat Apr 13, 2019 3:51 am

brokenwings wrote:I know nothing about clinical trials but I found this one in Phase 3, concerning IV Vitamin C:

https://clinicaltrials.gov/ct2/show/NCT02969681.

What do you think?


My prior comment was specifically about lab testing chemo susceptibility of tumor samples.

I guess the phase 3 trial is a legitimate study to do (is need to look at the retrospective data and phase 1 study more though to confirm). However, you’ll note the phase 3 is not based on recent/strong phase 2 data. The study may find that vit C is either not beneficial, beneficial, or has no statistical impact. So until the study comes back, we just don’t know. I’d say comparatively it’s a bit different than say an immunotherapy that shows good ORR and safety in a small phase 2. In the immunotherapy example, we have at least some data that suggests it can be helpful, but it needs to be confirmed in a larger population during phase 3. In that case I could get excited about gaining access to an agent like that early and outside of a trial (CEA TMB bi specific comes to mind if it meets the phase 2 endpoint). But the vitamin C thing is based on a 40 year old retrospective study. Retrospective studies are frought with potential biases, and it’s 40 years old....
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

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: What options after chemo no longer effective?

Postby Pyro » Sat Apr 13, 2019 8:31 am

I knew 1 person that did the vitamin C thing only, they died feeling good, and that’s something.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: What options after chemo no longer effective?

Postby rp1954 » Sat Apr 13, 2019 11:50 am

Pyro70 wrote:
rp1954: I had the live tumor tissue tested with various chemo formulations by an outside lab.
zephyr:... I'm going to ask her about finding a lab to do this kind of testing. It's something that somehow never occurred to me. Live and learn.

I’ve never heard of an oncologist recommending this approach nor of a clinical trial showing the validity of it. Also, since so many agents work “in vitro” (in a test tube) in pre-clinical work, but then fail to be effective “in vivo” (in the body), there is little rationale for thinking that outside the body testing translates to IV chemo efficacy.

I moved this discussion to mbuser's Weisenthal Cancer Center thread to avoid hijacking Mike's thread more.

Pyro wrote:I knew 1 person that did the vitamin C thing only, they died feeling good, and that’s something.

That's pretty uncommon, that all of cancer's side effects are continually wiped out until near organ failure, or obstruction of circulation or breathing. A big vitamin C infusion in a cancer patient's latter days, often bedridden in pain, typically buys them so many hours, or a day or so, of normalcy, so they can have a good family meal and visit in a brief respite, or maybe a golf game the next day.

I doubt anyone here expects solo vitamin C to adequately treat CRC. In the 1970's, quality of life and minor survival improvements made vitamin C etc, perhaps a reasonable approach over harsher, unsuccessful treatments. Especially those mainstream tx that had negative OS results and horrific side effects. The Riordan Clinic, which seems to be the reigning public face of IV vitamin C for off label cancer treatment, doesn't advocate solo vitamin C for CRC either.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: What options after chemo no longer effective?

Postby mpbser » Sun Apr 14, 2019 6:30 am

Chemo "ineffectiveness" has become somewhat of an obsession of mine these days. Why do recurrences happen after someone has done chemo? My husband responded well to Folfox last year as his first-line treatment with his metastatic tumor size reduced by 50%. Then, after the four rounds, he had liver surgery to remove said met. Clear margins. So why did another liver tumor appear? Did chemo fail him? If it was able to destroy .5 centimeters of a tumor, would it not have also cleared out all the micro-mets and CTCs? I asked his oncologist at Mass General when we discovered the recurrence, "How did this happen?" He did not have an answer and said that that is essentially the $64 million question in cancer science.

As we never, ever, ever want to go through this again, and the objective this time around is to achieve 100% kill, I am trying to ensure that my husband gets the absolute best chance at being cured. This includes preventing any cancer cells from going through and staying in the EMT, i.e. entering dormancy aka evading chemo. I have a few tricks up my sleeve for this. I will provide an update when the results are in.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: What options after chemo no longer effective?

Postby Pyro » Sun Apr 14, 2019 7:27 am

Scientists around the world haven’t figured it out, we hope you do. My 77 round of chemo (chemo for life) will thank you, I don’t want to ever do it again either. Are you a research scientist?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: What options after chemo no longer effective?

Postby zephyr » Sun Apr 14, 2019 12:33 pm

mpbser wrote:Chemo "ineffectiveness" has become somewhat of an obsession of mine these days... I am trying to ensure that my husband gets the absolute best chance at being cured. This includes preventing any cancer cells from going through and staying in the EMT, i.e. entering dormancy aka evading chemo. I have a few tricks up my sleeve for this. I will provide an update when the results are in.


Me too. Maybe we should start a new thread... Stage IV research: best chance at being cured...?
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: What options after chemo no longer effective?

Postby mpbser » Sun Apr 14, 2019 1:35 pm

zephyr wrote:
mpbser wrote:Chemo "ineffectiveness" has become somewhat of an obsession of mine these days... I am trying to ensure that my husband gets the absolute best chance at being cured. This includes preventing any cancer cells from going through and staying in the EMT, i.e. entering dormancy aka evading chemo. I have a few tricks up my sleeve for this. I will provide an update when the results are in.


Me too. Maybe we should start a new thread... Stage IV research: best chance at being cured...?


Yes! Starting it now!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: What options after chemo no longer effective?

Postby mpbser » Sun Apr 14, 2019 3:11 pm

One more comment, then I have to get on the road. This article may be of particular interest re: chemo resistance and overcoming it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4926427/ I found it yesterday when reading up on berberine.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: What options after chemo no longer effective?

Postby brokenwings » Sun Apr 14, 2019 5:02 pm

Pyro70 wrote:
brokenwings wrote:I know nothing about clinical trials but I found this one in Phase 3, concerning IV Vitamin C:

https://clinicaltrials.gov/ct2/show/NCT02969681.

What do you think?


My prior comment was specifically about lab testing chemo susceptibility of tumor samples.

I guess the phase 3 trial is a legitimate study to do (is need to look at the retrospective data and phase 1 study more though to confirm). However, you’ll note the phase 3 is not based on recent/strong phase 2 data. The study may find that vit C is either not beneficial, beneficial, or has no statistical impact. So until the study comes back, we just don’t know. I’d say comparatively it’s a bit different than say an immunotherapy that shows good ORR and safety in a small phase 2. In the immunotherapy example, we have at least some data that suggests it can be helpful, but it needs to be confirmed in a larger population during phase 3. In that case I could get excited about gaining access to an agent like that early and outside of a trial (CEA TMB bi specific comes to mind if it meets the phase 2 endpoint). But the vitamin C thing is based on a 40 year old retrospective study. Retrospective studies are frought with potential biases, and it’s 40 years old....


Thanks for the explanation, it's very useful.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: What options after chemo no longer effective?

Postby Pyro » Sun Apr 14, 2019 7:28 pm

Is it funny to anyone else we are fighting to stay on chemo?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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