Anyone with Stage IVa just do Xelolda or 5-fu?

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

Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Fri Oct 06, 2017 3:15 pm

Husband is having serious second thoughts about doing Oxaliplatin. He nearly walked out of the hospital before they put in his IV to do the port procedure this afternoon, upset and angry that his oncologists never provided hard data to support the addition of Ox. I pulled up a study on my phone at the very last minute. I read it to him and he decided to just go ahead after learning from our awesome general surgeon how easy the port will be to remove in the case he backs out. His first infusion is scheduled for Wednesday so he will have a few days to think about the numbers and make a final decision.

For those who decided to not do Ox, what has been your experience? Thank you in advance.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

mhf1986
Posts: 68
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mhf1986 » Fri Oct 06, 2017 5:04 pm

Opposite side here...
DH did 6 rounds via port of FOLFOX + Avastin and then dropped the OX. Had a great response, really reduced one of the liver mets. He's been on just the 5FU + Avastin since June and CEA numbers are climbing (see profile below). Next CT scan is Oct 30 and we will decide at that point if the OX needs to be added back. The neuropathy wasn't horrible but it was noticeable by month 4 in the fingers, it's mostly gone now. We are wondering if the liver mets were particularly susceptible to the OX and it that means anything.

The more problematic issue which we did not expect is his painful and slightly swollen hands which we think is the 5fu as it starts two days after the treatment (ie the day the IV is removed) and lasts about 2 days. The chemo nurse hadn't heard of that effect but I assume it's part of hand/foot syndrome. I've banned him from doing dishes and taking extra hot showers.

We are looking into CEA vaccine trial at NIH as another oncologist said it can be done in conjuction with FOLFOX.

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastin 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switched to Xeloda too

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby betsydoglover » Fri Oct 06, 2017 6:07 pm

Remember, you can always stop the oxaliplatin, but I think you should give the initial onc recommendation a try, especially for Stage 4. It's not an irreversible decision.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

mpbser
Posts: 309
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Fri Oct 06, 2017 6:13 pm

Thanks for the input. Yeah, husband has calmed down and is okay with giving it a try. The data show only a 7% improvement in outcome of combination chemo compared to monotherapy so if he has serious side effects, he is not going to put up with that for long.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

cbsmith
Posts: 47
Joined: Sat Nov 28, 2015 11:45 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby cbsmith » Fri Oct 06, 2017 6:27 pm

For stage 4 my view is to throw everything you have at it, at least to try it. If it was me I would do the oxi until after the first scan to see if it was working.

The thing with stats is they are based off a large group of people. Over a group there was a 7% improvement. But if you get down to just one person, your husband, it is really either a 100 or a 0. If oxi works on the tumors for him then he will have a much better than 7% improvement. On the flip side if it doesn’t work he will have a 0% improvement.

As a chemomfor lifer I sometimes wonder if it is all worth it, especially on the days I am not feeling well. But the days I feel good and can do things with my family it makes it worth it. I did 12 rounds of FOLFOX, all with oxi but at a reduced dose towards the end, and am around 50 rounds of FOLFIRI now. It has had its ups and downs but it has kept my tumors stable for almost 3 years now, I likely wouldn’t still be here if I didn’t do the chemo based on the growth rate in the break between FOLFOX and FOLFIRI.
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

stu
Posts: 613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby stu » Fri Oct 06, 2017 6:51 pm

Hi ,
I agree with the above poster . No science to back me up but in a stage 4 setting it's seems to me more a case of what works for the individual with the guidance of your oncologist based on the pathology. There is only one way to find out and that is having the treatment, being open minded and seeing how the scan works out then being prepared to look for the window of opportunities that pop up . There comes a point where you have to find a balance and not exhaust yourself trying too much to squeeze the stats because at the end of the day they are never your story .
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

Tupelo honey
Posts: 18
Joined: Tue Jul 19, 2016 7:57 pm

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby Tupelo honey » Fri Oct 06, 2017 9:16 pm

And don't forget Oxi may not be as bad as he's dreading. While I did have some temporary effects during treatment, and some mild numbness of fingertips and crampy toes from appx 2- 5 months after treatment, I did complete the full course of Oxi with no permanant side effects.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED

AppleTree
Posts: 131
Joined: Fri Mar 18, 2016 8:16 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby AppleTree » Fri Oct 06, 2017 9:31 pm

I could not have mop up chemo last year after my surgery because of liver failure. But...they could not see any more cancer. 1 year later a MET showed up in my lung. I had the VAT surgery, power port placed and just finished my 3rd Folfox session. Folfox was recommended to me even though they can not see any more cancer (once again). I am going to try to do all 12 rounds. My oncologist said I am going to have an MRI in another month just to check.

I like my power port...a lot! 1 hour before my appointment, I put lidocaine cream on it and cover it with syran wrap. Then about 15 minutes before hookup, I add a bit more for good measure. I still feel the prick, more because it is in a place you are not used to being jabbed at! But it is 100x better with the port and the lidocaine really helps. For hydration, they just leave a small attachment in place, so I am not jabbed 4 days in a row.

Communicate, communicate any/all symptoms! I showed my nurse my fuzzy tongue and got the recipe for mouth rinse. Works great those few days I need it and off weeks I have no issue with my tongue. I complained of being nausea and next round they beefed up that med. Added more. I like A given also for nausea. I figure things will crop up as I go along.

I get hydration on disconnect day (Friday), Saturday and Sunday morning in the IV hydration room (oncology is closed on weekends, my hydration order saves me from being processed through the ER), and again on Monday in oncology. Sometimes I think I might skip, but I go and feel so much better afterward! And then my family is not so anxious for me to drink, drink when I really have not much of an appetite those days! My "wet" snacks include those little fruit cups and small applesauce. Fruit drink pouches. All the small, single serving stuff because I can not tolerate anything cold so it can not be refrigerated.

I do not mind the pump for 2 days at all. I am hardest hit late Friday night and all day Saturday after disconnect. The alternate weeks, so far I am doing good.

I am not sure if that helps at all, but that is my story.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

Mercy110
Posts: 73
Joined: Wed Aug 16, 2017 12:13 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby Mercy110 » Fri Oct 06, 2017 9:44 pm

Hello. My mum is currently undergoing Folfox with Avastin. Oxi is one of the components and we temporarily find it acceptable. She has finished 2 rounds of chemo now, so far so good for the Oxi part. So why don't your husband just try and he may find the side effects may not be as bad as it varies among people. Whenever you think it is not ok, you can drop it anytime. Trying once or twice is properly not that bad.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery done. Temporary stoma. Path: T4N1M0. Stage3C. Chemo - Xeloda. Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4.
Start from 2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3)
2017-11: Stable Multiple Lung Nodules from CT

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

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MikeManess
Posts: 77
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby MikeManess » Fri Oct 06, 2017 10:36 pm

I had 10 rounds of Folfox + Avastin until the side-effects of Oxaliplatin were too much. I then had two rounds w/o Oxaliplatin (plus Avastin) and two rounds of Folfiri + Avastin. Then I had surgery to remove the two liver tumors. The pathology showed the liver tumors were dead and all surrounding tissue was clear. For stage 4, I'd take every little percentage of a chance I could get. I'm free of cancer for 9 months so far. I hated Oxaliplatin, but I'm still here and NED. Make your own choice, but my option was to be as aggressive as possible.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
3/23/16 First meeting with Oncologist
4/19/16 Right colectomy
4/21/16 discharged from hospital
6/3/16 Two liver spots detected, added Avastin to Folfox
10/5/16 Oxaliplatin stopped after 10 rounds
12/20/16 Liver surgery. Pathology shows no active cancer cells
1/18/17 Mop-up chemo, Folfiri + Avastin
2/7/17 Baseline CT and MRI show no cancer - in remission and NED
6/7/17 Final chemo
12/5/17 Port removed

mariane
Posts: 578
Joined: Sun Sep 13, 2015 6:16 pm

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mariane » Fri Oct 06, 2017 11:13 pm

I had oncologist whose plan was exactly to throw everything we had and I achieved complete pathological response. MY CEA normalized after only 4 cycles I did not only FOLFOX but FOLFIRINOX which gives greater % of responses.
I did altogether 6 OX-es ( 4 in FOLFIRINOX and 2 in FOLFOX) and don't have neuropathy. However I partially lost my sense of smell. I can live with less sensitive nose.
I can see my kids grow.
Good Luck!
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

lovelife789
Posts: 21
Joined: Thu Aug 24, 2017 5:28 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby lovelife789 » Fri Oct 06, 2017 11:39 pm

Hi mpbser,

I'm a Stage IV and I'm exactly at the point where I'm thinking to remove Oxi, but I'll give it one last shot next week.

My experience from Oxi is:
1. Did #7 shots of Folfox, no serious neuropathy. I have some numbness at the fingertips but not bad, they aren't hurting, just awkward.
2. Serious first bite syndrome after every infusion, which means my jaw would hurt every time I put food in my mouth, but it usually went away 2-3 days later.
3. Tiredness, I would just take naps after infusion for two days and I would come back to "life" pretty much normal.
4. My blood work had no major issue, the digits would fall but only at a gradual rate.

But what made me wanna drop it is:
1. By #8 shot, I had serious allergic reaction. To the point I thought someone was strangling me and my BP dropped insanely, needless to say I was super terrified too.
2. Only by #8 shot, Oxi totally trashed my blood work. It had dropped by more than 50%.

So what my Dr told me is that Oxi does give me an extra 2% to my overall 5-year survival rate, which is different from the recurrence rate I have been focusing on (don't know why, I guess I just dislike chemo so much I had a lot of mental block with recurrence...). So he wants to give me the best shot possible. We discussed a lot of options and it was decided we will do another shot with Oxi, if it continue to trash my blood work, it will be removed from my cocktail until my #12.

I don't h-eight Oxi personally, because I had the Folfox + Erbitux regimen and together they shrunk my significant liver mets by at least 50% and turned me from inoperable to operable. And with a good surgeon, I'm theoretically NED. I'm almost a bit disappointed I can't continue with my Folfox until my #12...

I agree with the above community member, when you are a Stage IV, you throw everything at it. I went for a brisk walk a few weeks after 70% of my liver was removed with that 56 stitches of scar across my abdomen, 6 weeks later, I started hiking and yoga (with my port, yes I finally got used to it). I take all my supplements, so I thought why wouldn't I try one more time with Oxi with all these other health "programs" I do already?

Not sure if the above helps, but my suggestion is if you trust your Onc, at least try and trust his body too! Sometimes we fail to listen to our body and follow our rational thinking which isn't always the best way..... and best of luck!!!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage 4 Sigmoid Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense nausea from Xeloda, it was dropped
9/22 - Folfox resumes, allergic to Oxi...

mpbser
Posts: 309
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Sat Oct 07, 2017 7:07 am

Thanks for the input. I will be sharing it all with husband by printing this page for him to read on Wednesday while he's at the Cancer Center getting his first infusion.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

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WriterGirl1969
Posts: 455
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby WriterGirl1969 » Sat Oct 07, 2017 8:19 am

mpbser wrote:Husband is having serious second thoughts about doing Oxaliplatin. He nearly walked out of the hospital before they put in his IV to do the port procedure this afternoon, upset and angry that his oncologists never provided hard data to support the addition of Ox. I pulled up a study on my phone at the very last minute. I read it to him and he decided to just go ahead after learning from our awesome general surgeon how easy the port will be to remove in the case he backs out. His first infusion is scheduled for Wednesday so he will have a few days to think about the numbers and make a final decision.

For those who decided to not do Ox, what has been your experience? Thank you in advance.


Hi mpbser.

I'm stage 3, but I did Xeloda (the oral pill version of 5-FU) without the Oxa (aka Monotherapy). I had a pre-existing neuropathy that they didn't want to make any worse. Like you, I did some research on the benefit. From the studies I read, it appears to increase the success rate by about 5%. For me, that number was worth not dealing with the additional side-effects. I did very well on Xeloda. I had some side-effects, but nothing that kept me from working throughout treatment. Mostly it was fatigue, which I addressed by keeping my office dark and cool through the summer, and hand/foot syndrome, which I addressed by using a very good lotion 2-3x daily.

Currently, I am NED (no evidence of disease). My 1-year mark was in March, so I'm at about 1.5 years right now.

If I have any advice to give, it's to be your own advocate(s). Read up on treatments, discuss them with your doctor(s), but ultimately make your own decisions and stand by them. If they are informed decisions, you can feel confident you are doing what's right for you. For example, I fought with my oncologist to do the oral version of treatment vs. infusion / port. As the primary income and health insurance carrier for my family, it was the right way to go. It also felt much less invasive to me, and allowed me to keep myself in a good place mentally and emotionally, which I think is very important. Plus, as I found out, I feel the oral version is more effective with less side-effects anyway. So win-win. :) Again, as long as you're comfortable with your decision, that's the key.

I hope this helps. Keep us posted on how things go, and don't be afraid to ask questions.

Smiles, hugs and prayers,
Tracy (aka WriterGirl)
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

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susie0915
Posts: 531
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby susie0915 » Sat Oct 07, 2017 8:52 am

lovelife789 wrote:Hi mpbser,

I'm a Stage IV and I'm exactly at the point where I'm thinking to remove Oxi, but I'll give it one last shot next week.

My experience from Oxi is:
1. Did #7 shots of Folfox, no serious neuropathy. I have some numbness at the fingertips but not bad, they aren't hurting, just awkward.
2. Serious first bite syndrome after every infusion, which means my jaw would hurt every time I put food in my mouth, but it usually went away 2-3 days later.
3. Tiredness, I would just take naps after infusion for two days and I would come back to "life" pretty much normal.
4. My blood work had no major issue, the digits would fall but only at a gradual rate.

But what made me wanna drop it is:
1. By #8 shot, I had serious allergic reaction. To the point I thought someone was strangling me and my BP dropped insanely, needless to say I was super terrified too.
2. Only by #8 shot, Oxi totally trashed my blood work. It had dropped by more than 50%.

So what my Dr told me is that Oxi does give me an extra 2% to my overall 5-year survival rate, which is different from the recurrence rate I have been focusing on (don't know why, I guess I just dislike chemo so much I had a lot of mental block with recurrence...). So he wants to give me the best shot possible. We discussed a lot of options and it was decided we will do another shot with Oxi, if it continue to trash my blood work, it will be removed from my cocktail until my #12.

I don't h-eight Oxi personally, because I had the Folfox + Erbitux regimen and together they shrunk my significant liver mets by at least 50% and turned me from inoperable to operable. And with a good surgeon, I'm theoretically NED. I'm almost a bit disappointed I can't continue with my Folfox until my #12...

I agree with the above community member, when you are a Stage IV, you throw everything at it. I went for a brisk walk a few weeks after 70% of my liver was removed with that 56 stitches of scar across my abdomen, 6 weeks later, I started hiking and yoga (with my port, yes I finally got used to it). I take all my supplements, so I thought why wouldn't I try one more time with Oxi with all these other health "programs" I do already?

Not sure if the above helps, but my suggestion is if you trust your Onc, at least try and trust his body too! Sometimes we fail to listen to our body and follow our rational thinking which isn't always the best way..... and best of luck!!!


I had that first bit syndrome also. After an infusion, I would take a bite of food and the pain went from ear down the neck. The next bite would be fine and I could continue to eat. It was so weird. Like you, that would stop after a day or two. I had my treatments in the winter so the cold air would take my breath away, so always covered my mouth and nose walking out of treatment center. And if I remembered, I avoided cold drinks for a couple days. My neuropathy really didn't seem to kick until a few weeks after my last treatment. Would notice a little the day of infusion but always disappeared. It has gotten better. Balance is better and don't drop things like I used to. More tingling and numbness and tougher on hard surfaces when barefoot. So always wear shoes or slippers. It's more annoying than anything else. Does not prevent me from doing anything. When I told my oncologist about first bite syndrome she never indicated it was a common side effect. Made it sound like it was a very uncommon effect. I thought I was the only one.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5


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