What options after chemo no longer effective?

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MikeManess
Posts: 85
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

What options after chemo no longer effective?

Postby MikeManess » Wed Apr 10, 2019 4:03 pm

Well, nuts. I've been on this cancer roller coaster for 3+ years, and now have found out that my chemo is no longer effective. This time, I had chemo since June '18 (2nd time on chemo). Surgeon declined to do surgery in Jan because he declared me disease free. Now - 3 months later, I have two new tumors while on chemo, which were discovered by PET scan prior to radiation treatment. Medical Oncologist has me waiting 4 weeks, then having MRI to see if tumors grow.

What are options if my cancer has beciome immune to chemo?
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
04/10/19 Folfiri no longer effective

martd
Posts: 80
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: What options after chemo no longer effective?

Postby martd » Wed Apr 10, 2019 4:24 pm

Getting another opinion at a major cancer hospital. Or if you're at a major center now still get another opinion. What type of cancer do you have? And what surgery was declined?
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9

martd
Posts: 80
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: What options after chemo no longer effective?

Postby martd » Wed Apr 10, 2019 4:27 pm

I just noticed your signature. I would definitely get another opinion and start with MSKCC
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: What options after chemo no longer effective?

Postby AppleTree » Wed Apr 10, 2019 9:52 pm

2nd opinion!

When my lung met showed up my onc wanted to try different chemos, up the scans schedule and see what was effective. Well, what if it was not effective? I wanted it out! Oncologists are not surgeons. I got a referral to Mass General surgeon from my PC and he did Lung VATS surgery right away and then the Onc followed it up with 12 rounds of Folfox.

That was my experience. I looked through the hospital website and hand picked my surgeon. I know my Onc was surprised, but I really wanted it out before it got a chance to spread.

Best of luck to you.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

natelaugh
Posts: 26
Joined: Wed Apr 03, 2019 11:40 pm

Re: What options after chemo no longer effective?

Postby natelaugh » Thu Apr 11, 2019 12:46 am

Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

rp1954
Posts: 1478
Joined: Mon Jun 13, 2011 1:13 am

Re: What options after chemo no longer effective?

Postby rp1954 » Thu Apr 11, 2019 1:31 am

Technically the problem often is to reduce the resistant cancer mass by surgery without further spread, and to resensitize the remaining tumor cells enough to respond to 5FU by some additional chemistry. The only problem is getting surgery if too many surgeons consider surgery futile (too narrowly); or finding knowledgeable support for non standard chemistry that the chemo hardened cancer sites might respond too.

My thoughts about extra blood work for more chemistry with metronomic oral 5FU drugs are in my archive. Metronomic immunochemo has been known to breakdown resistant cancer before. For a limited, fixed formula success is statistical, but with well targeted chemistry via companion markers, it should be a homing in process.
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 mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

Pyro
Posts: 153
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: What options after chemo no longer effective?

Postby Pyro » Thu Apr 11, 2019 7:29 am

You’re saying 5FU will continue to work? Your posts are not clear, maybe an example?
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @30, shit still here

rp1954
Posts: 1478
Joined: Mon Jun 13, 2011 1:13 am

Re: What options after chemo no longer effective?

Postby rp1954 » Thu Apr 11, 2019 10:41 am

Several things make it difficult for chemo to work at the point of failure. The tumor mass, with sequential filtration of chemo out by sites in series or just a big mass; the spread of heterogenous, hardened cells; and immune failures, to the cancer itself or the immune system originally, and after cyclic, heavy chemo damage.

Surgery can greatly reduce mass and hopefully curatively remove some of the worst, most difficult sites. The remaining sites may be more responsive to (old) chemo at higher remaining dose, and may be more responsive to metronomic, immunochemo based on the previously failed 5FU drugs.

The literature's papers show these various parts in 1-2 steps at a time, they fail to put it all together. We extended a single 5FU drug many ways, after one or more failures. The first big failure, we wiped the slate as clean as possible by surgery, and restarted. Still intrinsically shot through by the lymph nodes and reactive masses in the liver. Guided by principles, bloodwork, and prior knowledge (e.g. literature) , we never had to go down the spiral of nastier drugs.

Papers discuss the difference between leucovorin (LV) and PSK on 5FU, which is "better". We used both for their strengths and advantages.
Papers found that some biologies can re-activate 5FU (re-sensitize) with various nice adjuncts e.g. IV vitamin C, potent supplement combinations, or mild drugs.
Some papers discuss substances to improve immune response to cancer, either by targeting the cells or overcoming problems in the body.
Many off label substances impact cancer in the literature, they don't systematically optimize dosage, combinations or markers.
ADAPT is a two step change with Xeloda, metronomic Xeloda (daily) and celecoxib (a "re-sensitizer"). Daily Xeloda itself will be better for some people over cyclical Xeloda but alone not usually. With oral UFT and oral 5FU the change from cyclic to daily may be more obvious, or just more continuous e.g. 3x a day (UFT) vs 2x a day (Xeloda). For many patients, ADAPT outperformed prior chemo or the usual chemo by many years.
Mop up chemo after surgery is common and may repeat old chemo.

You think I am ambiguous. If you think in terms of biology and markers - personalization - the answers are in your markers and responses. I am not trotting out "a formula" that people will misuse - I see enough of this on cimetdine. You want to talk specifics, do your homework and put them out here.
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 mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

zephyr
Posts: 208
Joined: Thu Aug 18, 2016 7:31 am

Re: What options after chemo no longer effective?

Postby zephyr » Thu Apr 11, 2019 11:27 am

rp1954 wrote:Papers found that some biologies can re-activate 5FU (re-sensitize) with various nice adjuncts e.g. IV vitamin C, potent supplement combinations, or mild drugs.


This is just a quick follow up comment. I hit 5FU resistance a while back and have recently been wondering why anyone thinks Xeloda will work on me this time. My ND - who is not the doc prescribing the Xeloda but is in my corner supporting my immune system - said that my high-dose Vitamin C IVs may help it work better metabolically and help prevent some toxicity.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
April-2019 Xeloda + Avastin

User avatar
MikeManess
Posts: 85
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: What options after chemo no longer effective?

Postby MikeManess » Fri Apr 12, 2019 10:54 am

Update: After considering options, I made an appointment at MD Anderson in Houston. UT Southwestern isn't quite as leading edge as MD Anderson, and I think they'll give me the best shot at beating this crap .. or keeping me on the sunny side of the dirt for as long as possible.

Downside is that it's a 5+ hour drive, and my appointment is at 9:30am. Butt - whatever it takes.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
04/10/19 Folfiri no longer effective

natelaugh
Posts: 26
Joined: Wed Apr 03, 2019 11:40 pm

Re: What options after chemo no longer effective?

Postby natelaugh » Fri Apr 12, 2019 11:15 am

zephyr wrote:
rp1954 wrote:Papers found that some biologies can re-activate 5FU (re-sensitize) with various nice adjuncts e.g. IV vitamin C, potent supplement combinations, or mild drugs.


This is just a quick follow up comment. I hit 5FU resistance a while back and have recently been wondering why anyone thinks Xeloda will work on me this time. My ND - who is not the doc prescribing the Xeloda but is in my corner supporting my immune system - said that my high-dose Vitamin C IVs may help it work better metabolically and help prevent some toxicity.


I asked the chemo nurse about using IV vitamin C and she suggested against using anything that is high concentrated. She gave an example. Vitamin C helps the immune system so it can help cancer and non cancer cells to stay alive. However chemo objective is to kill all cells and Vitamin C can help cancer cell stay alive.

Any thought/experience on this?

Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

zephyr
Posts: 208
Joined: Thu Aug 18, 2016 7:31 am

Re: What options after chemo no longer effective?

Postby zephyr » Fri Apr 12, 2019 12:27 pm

natelaugh wrote:
zephyr wrote:
rp1954 wrote:Papers found that some biologies can re-activate 5FU (re-sensitize) with various nice adjuncts e.g. IV vitamin C, potent supplement combinations, or mild drugs.


This is just a quick follow up comment. I hit 5FU resistance a while back and have recently been wondering why anyone thinks Xeloda will work on me this time. My ND - who is not the doc prescribing the Xeloda but is in my corner supporting my immune system - said that my high-dose Vitamin C IVs may help it work better metabolically and help prevent some toxicity.


I asked the chemo nurse about using IV vitamin C and she suggested against using anything that is high concentrated. She gave an example. Vitamin C helps the immune system so it can help cancer and non cancer cells to stay alive. However chemo objective is to kill all cells and Vitamin C can help cancer cell stay alive.

Any thought/experience on this?

Nate.


There is a lot of evidence regarding the benefits of using Vitamin C as part of cancer therapy. If you do a search of Vitamin C on this forum, there will probably be several threads with links. You can find a lot of information on what I think (this is just me) are reliable websites such as PubMed, Riordan Clinic, and Life Extensions.

My chemo nurses have been wonderful and I am grateful for some really good advice they've given me. In this case, and again - this is just me, I'm more inclined to trust the published studies, the advice of an ND certified in oncology, and the blessing of two MD oncologists than I am my chemo nurses.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
April-2019 Xeloda + Avastin

Pyro
Posts: 153
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: What options after chemo no longer effective?

Postby Pyro » Fri Apr 12, 2019 12:50 pm

I apologize to @rp1954 , I understand now why you post the way you do. Thank your for your help!
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @30, shit still here

rp1954
Posts: 1478
Joined: Mon Jun 13, 2011 1:13 am

Re: What options after chemo no longer effective?

Postby rp1954 » Fri Apr 12, 2019 1:06 pm

natelaugh wrote:
zephyr wrote:
rp1954 wrote: ...biologies re-activate 5FU (re-sensitize) with various nice adjuncts e.g. IV vitamin C, potent supplement combinations, or mild drugs.

...I hit 5FU resistance a while back and have recently been wondering why anyone thinks Xeloda will work on me this time. My ND - who is not the doc prescribing the Xeloda but is in my corner supporting my immune system - said that my high-dose Vitamin C IVs may help it work better metabolically and help prevent some toxicity.

I asked the chemo nurse about using IV vitamin C and she suggested against using anything that is high concentrated. She gave an example. Vitamin C helps the immune system so it can help cancer and non cancer cells to stay alive. However chemo objective is to kill all cells and Vitamin C can help cancer cell stay alive.
Any thought/experience on this?

Mutant KRAS and BRAF cancer cells are experimentally known to be inhibited by straight, high dose vitamin C. That is the very pre-clinical tip of the iceberg. A number of other effects are beneficial in cancer and other mechanisms can apply. The real discussions should focus on which patients respond well and what chemo treatments are improved by particular vitamin formulas.

In our case, 5FU was the best candidate chemo molecule, as metabolized continuously from oral UFT. A year later, in 2011, I had the live tumor tissue specially tested with various chemo formulations by an outside lab. For her freshly removed cells' condition, 5FU+vitamin C+MK4, hands down, beat all other chemo combinations of 5FU, oxi-, iri-, gem- tested. This stunned the lab. Again, this result is specific to my wife who was on a lot of nutraceuticals, CA199 targeted cimetidine, IV C, and 5FU.

Now in real life, our immunochemo formula (with UFT (5FU) + IV vit C + MK4 + others) kept my wife's markers perfectly stable after her 2nd surgery, at low marker values with extremely low noise, for a year. Smoother than NED patients best markers' noise level. The single failure of re-supply on the MK4 for a single month, unleashed the markers' activity. (A simple substitution with MK0 failed...) After re-supply of MK4, things damped down but imperfectly, some cells were hardened to the prior formula. Now, the markers would slowly cycle up and we treated them down, at less than alarming levels and speeds to outsiders. Finally, we had to add in the celecoxib too, to quiet the markers more.

In the pre-biologics era, before Avastin and Erbitux, for treatments with 5FU-LV, Folfox and Folfiri, the published OS for patients like my wife, was nil in 24 - 30 months. The only published survivor details that I found later, had ultra low CEA and CA199. My wife had been elevated for both markers. In 2010, we were in deep doo-doo and didn't know how far because of normal practices and miscommunications (already written off by everybody, going thru the standard motions). However, my wife had a craving for IV vitamin C that first year on immunochemo, like 3 - 4 - 5 times a week. After a successful second surgery, she no longer craved the IV vitamin C infusions and reduced down to 1.5x a week, and now years later, down to weeks per IV vitamin C.
Last edited by rp1954 on Fri Apr 12, 2019 4:28 pm, edited 5 times in total.
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 mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

zephyr
Posts: 208
Joined: Thu Aug 18, 2016 7:31 am

Re: What options after chemo no longer effective?

Postby zephyr » Fri Apr 12, 2019 1:53 pm

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.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
April-2019 Xeloda + Avastin


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