FOLFOX failed

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fdcfromkcmo
Posts: 8
Joined: Fri Jul 06, 2018 5:35 pm

FOLFOX failed

Postby fdcfromkcmo » Sun Dec 02, 2018 1:40 pm

So my doctors are deciding the best course of action while they restage my cancer. They think its stage IV: a PET scan showed activity in my lungs & in my NECK... this Wednesday I have a neck biopsy... two words every 33 yo wants to hear weeks before Christmas.

They're advocating for radiosurgery on the lungs & we'll see what the neck biopsy yields. But because I finished treatment in May of this year, it all points to FOLFOX having failed because mopup chemo failed to eliminate any remaining cancer cells (my previous PET and CT scans showed no activity besides the main tumor.)

Has anyone else experienced FOLFOX as a failed frontline treatment & can share stories of successful second line treatments? Depending on what happens with my biopsy, I'd like to talk to my doctor about immunotherapy but don't know what genetic testing revealed & if I'm eligible.
31 y.o. at dx, dx 6/17: RC, stage IIIA
July-August 2017: chemoradiation to shrink tumor
11/7/2017: LAR, 1 lymph node involved, clear margins
12.17-05/18: 12 rounds of Folfox
06/18: 4 mm nodule in lung
07/31/2018: ileostomy reversal
09/18: 7 mm nodule + 2 & 1 mm nodule in long
10/18: fiduciary markers placed, ongoing struggle w/ insurance :(
11/18: PET scan shows activity in lungs, neck

Lee
Posts: 5741
Joined: Sun Apr 16, 2006 4:09 pm

Re: FOLFOX failed

Postby Lee » Sun Dec 02, 2018 3:51 pm

fdcfromkcmo wrote: . . . Depending on what happens with my biopsy, I'd like to talk to my doctor about immunotherapy but don't know what genetic testing revealed & if I'm eligible.


So sorry to read about your latest scans. That is a hard pill to swallow. Yes do look into immunotherapy. Also not sure where you are, butt if you could get a 2nd opinion at a major cancer treatment center or major cancer hospital. You are young, and I would really push for aggressive treatment. Major treatment center are on the leading edge of the latest and best way to treat cancer.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

CrossfitChick1980
Posts: 41
Joined: Wed Nov 25, 2015 9:40 pm

Re: FOLFOX failed

Postby CrossfitChick1980 » Sun Dec 02, 2018 5:59 pm

My husband was diagnosed at 31 as well, so sorry for what you are going through. My husband was initially treated with just 5FU and a short month after finishing chemo, a spot on his liver lit up. His second line of chemo was FOLFOX and while it worked to get rid of his liver Mets completely, he had a few lymph nodes react and was switched to FOLFIRI and Avastin. That combo is what pushed him into NED. Now, he is going on FOLFIRI and Avastin again but we are going to a major hospital to discuss a clinical trial he may qualify for. Our only regret is that we didnt look into the power of supplements to help aid in this journey, but definitely looking into Vit C, milk thistle, etc.
Caregiver to DH dx with Adenocarcinoma of Small Intestine Apr14.
Mar14- Small Bowel Resection
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda
Jun16- MSS, KRAS
Jul16- Clear scans- maintenance chemo (
Jun18- Biopsy of spots shows cancer is back
Sep18- Lonsurf
Oct18- Therasphere treatment to Liver

Mom to 4 lovely girls and 1 stubborn husband :)

cbsmith
Posts: 75
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: FOLFOX failed

Postby cbsmith » Sun Dec 02, 2018 6:20 pm

I failed folfox back in early 2015 after 12 rounds. My stage 3 colon cancer spread to 1 paraortic lymph node and 2 lung mets. I started folfiri and did that for 2.5 years until it failed and the lung Mets grew and spread. I’m not doing any chemo right now and saw a radiation oncologist last week to see about shrinking down a little bit to get rid of a cough I have now. There isn’t much left in the way of chemo due to my genetics, but I got a good response from folfiri for a long time, although the side effects of it were getting pretty bad towards the end. We will see what the radiation oncologist says about my newest scans this week.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

fdcfromkcmo
Posts: 8
Joined: Fri Jul 06, 2018 5:35 pm

Re: FOLFOX failed

Postby fdcfromkcmo » Sun Dec 02, 2018 6:28 pm

Thanks for the input. How does getting a second opinion at a major cancer center work when you are out of network? I'm willing to travel; I've paid for all my treatment myself and my family's offered to help with money. Really, I'm not so upset... I'm not in pain. Mostly just kinda sick to death of doctors, insurance, waiting for someone to call....

I have a pretty rigorous supplement regimen! Don't know if it's helped but started on aloe arborescens at the recommendation of a friend, so who knows? Maybe I'll get lucky :P
31 y.o. at dx, dx 6/17: RC, stage IIIA
July-August 2017: chemoradiation to shrink tumor
11/7/2017: LAR, 1 lymph node involved, clear margins
12.17-05/18: 12 rounds of Folfox
06/18: 4 mm nodule in lung
07/31/2018: ileostomy reversal
09/18: 7 mm nodule + 2 & 1 mm nodule in long
10/18: fiduciary markers placed, ongoing struggle w/ insurance :(
11/18: PET scan shows activity in lungs, neck

fdcfromkcmo
Posts: 8
Joined: Fri Jul 06, 2018 5:35 pm

Re: FOLFOX failed

Postby fdcfromkcmo » Sun Dec 02, 2018 6:32 pm

re: supplements, I don't think any of them could cure me, but many of them allowed me to tolerate chemo very well... b12, probiotics, mushroom compounds... I did great and recovered quickly from surgery! Too bad chemo was a waste of my time lol.
31 y.o. at dx, dx 6/17: RC, stage IIIA
July-August 2017: chemoradiation to shrink tumor
11/7/2017: LAR, 1 lymph node involved, clear margins
12.17-05/18: 12 rounds of Folfox
06/18: 4 mm nodule in lung
07/31/2018: ileostomy reversal
09/18: 7 mm nodule + 2 & 1 mm nodule in long
10/18: fiduciary markers placed, ongoing struggle w/ insurance :(
11/18: PET scan shows activity in lungs, neck

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: FOLFOX failed

Postby stu » Sun Dec 02, 2018 6:44 pm

Hi ,
First of all I am really sorry you are having to deal with this . I am not sure how oncologist decide something has failed as my understanding was chemo was better at shrinking solid tumours than dealing with microsatellite disease . My mum did first line chemo , had surgery but an immediate recurrence . She stayed on the same chemo regime as long as she had six months between first and second dose and achieved an incredible response the second time round which allowed surgery and led her to NED . On paper she would have been regarded as having failed treatment but in our books it shrunk the tumours again and was a roaring success which has lead to longevity!!!
Getting the best people involved early on was one of the best things my mum did .
At this point in time there is nothing to indicate that chemo can’t achieve great things for you . The most important thing at this stage is your chemo responsive.
I wish you every success with your treatment .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Brearmstrong
Posts: 69
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: FOLFOX failed

Postby Brearmstrong » Sun Dec 02, 2018 7:41 pm

Sorry to hear and I have similar path if you look at my signature. Folfox failed for me and folfiri only kept me stable but I was lucky to find a surgeon who took them out. I went into surgery knowing that it is likely to come back and then out of treatment options via chemo or immunotherapy options but just hoping it stays away on xeloda. Folfiri May be super successful for you!!
45 F Jan 17 Mom 2 boys
tumor in appendix into colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery < .05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1. May 18 2.3 Jul 18 1.0 oct 18 1.3
Oct 2017 clean CT
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive. xeloda 2000mg/day
Aug 18-CT NED! Nov 18 CT clear, stay on Xeloda.

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: FOLFOX failed

Postby rockhound » Sun Dec 02, 2018 8:59 pm

fdcfromkcmo wrote:Thanks for the input. How does getting a second opinion at a major cancer center work when you are out of network? I'm willing to travel; I've paid for all my treatment myself and my family's offered to help with money. Really, I'm not so upset... I'm not in pain. Mostly just kinda sick to death of doctors, insurance, waiting for someone to call....

I have a pretty rigorous supplement regimen! Don't know if it's helped but started on aloe arborescens at the recommendation of a friend, so who knows? Maybe I'll get lucky :P


Not sure were you have been treated and who you have been seeing, but (correct me if I'm wrong) KU med is good and a major NCI center - if you are from KCMO like name states...You may not have to travel very far and they could be in your network...
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED

fdcfromkcmo
Posts: 8
Joined: Fri Jul 06, 2018 5:35 pm

Re: FOLFOX failed

Postby fdcfromkcmo » Mon Dec 03, 2018 12:04 am

Thanks again... no one's given me anything to look forward to so nice to hear some success stories here :)
I am in KCMO, unfortunately KU Med and Shawnee Mission Hospital (part of MD Anderson) are out of Network, partially because of the MO/KS thing...!
31 y.o. at dx, dx 6/17: RC, stage IIIA
July-August 2017: chemoradiation to shrink tumor
11/7/2017: LAR, 1 lymph node involved, clear margins
12.17-05/18: 12 rounds of Folfox
06/18: 4 mm nodule in lung
07/31/2018: ileostomy reversal
09/18: 7 mm nodule + 2 & 1 mm nodule in long
10/18: fiduciary markers placed, ongoing struggle w/ insurance :(
11/18: PET scan shows activity in lungs, neck

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: FOLFOX failed

Postby rockhound » Mon Dec 03, 2018 4:26 pm

fdcfromkcmo wrote:Thanks again... no one's given me anything to look forward to so nice to hear some success stories here :)
I am in KCMO, unfortunately KU Med and Shawnee Mission Hospital (part of MD Anderson) are out of Network, partially because of the MO/KS thing...!


Crap, that stinks about KU Med.. I would be trying there over Shawnee Mission, mostly cause the NCI designation.. I'm in Manhattan, KS but have had surgeries over there and all my follow-ups are with them. Good experiences overall so far.
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: FOLFOX failed

Postby Cmac1275 » Mon Dec 03, 2018 8:09 pm

fdcfromkcmo wrote:Has anyone else experienced FOLFOX as a failed frontline treatment & can share stories of successful second line treatments?


I can only answer half of your question as I am in the same boat. But feeling optimistic nonetheless.

I had done 6 rounds of FOLFOX back in March through May 2018. I worked amazingly well. I was very much a distant borderline candidate for liver resection to get liver mets out. FOLFOX response made it possible. Unfortunately, I had an immediate recurrence two months later. We started FOLFOX again October 8th 2018. Did 4 rounds before restaging two weeks ago. CT scan showed two new very small spots, inflamed lymph node. Onc feels we’ve reached the end of the line with FOLFOX.

According to my oncologist, this is not atypical. One way to look at it is that FOLFOX has done everything it can to attack cancer cells that are sensitive to it. What’s left in my body is resistant to FOLFOX. So it’s time to change regimen (FOLFIRI).

It’s good you are taking supplements. They aren’t a cure, but great as a supporting adjunct treatment. Heck, I’m feeling great and back to doing my P90X workouts. I really believe the supplements help. I’m 42 and have been told by my medical team that my age and overall good health are key strengths, allowing more aggressive treatment options. Keep your head up. You have some key advantages in your favor already.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

Stewsbetty
Posts: 136
Joined: Thu Jul 14, 2016 7:08 am

Re: FOLFOX failed

Postby Stewsbetty » Tue Dec 04, 2018 6:52 am

fdcfromkcmo wrote:So my doctors are deciding the best course of action while they restage my cancer. They think its stage IV: a PET scan showed activity in my lungs & in my NECK... this Wednesday I have a neck biopsy... two words every 33 yo wants to hear weeks before Christmas.

They're advocating for radiosurgery on the lungs & we'll see what the neck biopsy yields. But because I finished treatment in May of this year, it all points to FOLFOX having failed because mopup chemo failed to eliminate any remaining cancer cells (my previous PET and CT scans showed no activity besides the main tumor.)

Has anyone else experienced FOLFOX as a failed frontline treatment & can share stories of successful second line treatments? Depending on what happens with my biopsy, I'd like to talk to my doctor about immunotherapy but don't know what genetic testing revealed & if I'm eligible.


I did 12 rounds of Folfox and my follow up scans showed cancer still there. It is discouraging to go through all that to find out it didn’t work. Then I did 2 rounds of Folfiri and the Mets continued to grow and spread through chest and neck. I am MSI high so I requested Keytruda and it has worked wonders in my body. Definitely check out your tumour type to see if immunotherapy is an option!

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: FOLFOX failed

Postby rockhound » Tue Dec 04, 2018 5:54 pm

rockhound wrote:
fdcfromkcmo wrote:Thanks again... no one's given me anything to look forward to so nice to hear some success stories here :)
I am in KCMO, unfortunately KU Med and Shawnee Mission Hospital (part of MD Anderson) are out of Network, partially because of the MO/KS thing...!


Crap, that stinks about KU Med.. I would be trying there over KU Med, mostly cause the NCI designation.. I'm in Manhattan, KS but have had surgeries over there and all my follow-ups are with them. Good experiences overall so far.
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: FOLFOX failed

Postby henry123 » Thu Dec 06, 2018 7:19 pm

Hello
Sorry to see you here.

Capox and various other chemos failed in my case. Finally immunotherapy worked for me.

I am not from US so can't advise cancer centres to go to but definitely try to get opinion at a major centre.
Best of luck.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo


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