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

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lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Sat Oct 07, 2017 9:20 am

Plus, as I found out, I feel the oral version is more effective with less side-effects anyway.


One thing I learned from this forum though is the difference between Xeloda and 5FU. I've read some posts saying some Onc would recommend infusion over Xeloda is because they can be sure how much actually went into your body. I couldn't quite get what that meant then, but after I literally threw up 1/2 of the pills everyday, I really couldn't be sure how much went into my body.

Since I have the port anyway, I went back to Folfox straight away. I'm not recommending either, I'm just sharing my experience and what I understood. :lol:
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

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Robino1
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Facebook Username: Robin.lawthers
Location: Florida

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

Postby Robino1 » Sat Oct 07, 2017 10:20 am

susie0915 wrote:
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.


First bite for me too. If I wait even an hour since last eating anything, it comes back. Mine is very painful but I've learned how to not create so much pain. I let the food rest on the back of my tongue for a bit. Only creates a little first bite pain. I move it from one side to the other and it helps to ease into actually biting down. After that first one is down, I can continue as normal. If I forget and just bite down...Oh My Lord! :shock:

Mine lasts about 4-5 days.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

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

Postby TXLiz » Sat Oct 07, 2017 10:24 am

I had 12 rounds with full Oxi, no reductions. Had many super annoying side effects during. 7 months later, the side effects are barely there.

I had my one year follow up at GI yesterday and colonoscopy. I have no tumors, polyps, or any areas of concern. GI said, perfect. How long will my insides be perfect? Who knows?

Sometimes life is about compromise. I can't think of a situation where I'd prefer cancer to tingly toes. Not being disrespectful or flippant- every person has their own value system and choices they have the right to make. I understand now why people do refuse treatment or aspects of it. Some folks do have severe side effects, and it sucks. But you can stop the Oxi if it is becoming dangerous or scary. It's a bit scary IMHO, it's a powerful thing. It has to be to help kill these hideous cancer cells, so sneaky, so excellent at hiding in the nooks and crannies of our bodies, only to spring out later wearing party hats and blowing tiny horns in celebration of their return.

I hope that your husband receives the best treatment possible and feels confident in the treatment, and I pray he will be healed and live a wonderful life.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

mpbser
Posts: 953
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 11:19 am

Thanks for chiming in, WriterGirl and susie.

Yeah, we have seen various studies with varying data but it looks like the average % of conferred improvement is somewhere between 5-7%. That's not a whole lot, but might be worth it if the side effects aren't too severe. It's his decision so I am not pushing an agenda in any particular direction on him. When he told me unequivocally that he would be doing chemo if that is what the doctors told him he should do, I stopped encouraging a plant-based natural regimen as an alternative. Funny thing is that now that his doctors are all encouraging him to do Oxaliplatin on top of capecitabine/xeloda, he is demanding supporting evidence and is extremely reluctant. He wasn't so demanding of data regarding capecitabine/xeloda. Not sure why.

I noticed that no one with Stage IV only doing monotherapy has weighed in, but that doesn't mean much, really.
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: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Sat Oct 07, 2017 11:21 am

I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!
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

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

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

Postby cbsmith » Sat Oct 07, 2017 12:40 pm

mpbser wrote:I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!


I think the blood clots are far less likely as a side affect than the neuropathy and cold sensitivity. The drignsheets they give list every possible side affect you could have, it doesn’t mean everyone will get them all and it doesn’t indicate how common each side affect is. Your oncologist can help with some of that by advising how often he has seen each side affect.

It is a lot easier now to try it at first and see how it goes, he may not have that many issues from it. Not trying it at first and waiting to see if the 5fu alone works and then adding oxi afterwards if the cancer has grown won’t be as effective.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 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
11/17 - no chemo since. Lung growth minimal, lymph node is stable

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

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

Postby TXLiz » Sat Oct 07, 2017 1:00 pm

cbsmith wrote:
mpbser wrote:I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!


I think the blood clots are far less likely as a side affect than the neuropathy and cold sensitivity. The drignsheets they give list every possible side affect you could have, it doesn’t mean everyone will get them all and it doesn’t indicate how common each side affect is. Your oncologist can help with some of that by advising how often he has seen each side affect.

It is a lot easier now to try it at first and see how it goes, he may not have that many issues from it. Not trying it at first and waiting to see if the 5fu alone works and then adding oxi afterwards if the cancer has grown won’t be as effective.



That's a great way to sum it up.

Best wishes, mpbser.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Sat Oct 07, 2017 1:38 pm

mpbser wrote:Thanks for chiming in, WriterGirl and susie.

Yeah, we have seen various studies with varying data but it looks like the average % of conferred improvement is somewhere between 5-7%. That's not a whole lot, but might be worth it if the side effects aren't too severe. It's his decision so I am not pushing an agenda in any particular direction on him. When he told me unequivocally that he would be doing chemo if that is what the doctors told him he should do, I stopped encouraging a plant-based natural regimen as an alternative. Funny thing is that now that his doctors are all encouraging him to do Oxaliplatin on top of capecitabine/xeloda, he is demanding supporting evidence and is extremely reluctant. He wasn't so demanding of data regarding capecitabine/xeloda. Not sure why.

I noticed that no one with Stage IV only doing monotherapy has weighed in, but that doesn't mean much, really.

It is tough. I only had 6 rounds of the Xelox so I'm sure effects would be different if I had more. Good Luck to him. Everything can be
so overwhelming.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

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

Postby Stewsbetty » Sat Oct 07, 2017 3:45 pm

mpbser wrote:I wrote my reply before I saw your comment, TXLiz.

Yeah, I get your point but I don't think he is considering neuropathy a severe side effect. I think he's thinking about blood clots, that type of thing that OX can cause.

P.S. cancer in party hats.... haha... evil devilish partiy-monsters!


So I wasn't well informed that cancer actually causes blood clots. On my last scan I was informed I had a pulmonary embolus in my left lung and I needed to get started on blood thinners. I know some meds increase risks as well but he will be at increased risk just due to the cancer in his body.
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 scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Tupelo honey
Posts: 42
Joined: Tue Jul 19, 2016 7:57 pm

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

Postby Tupelo honey » Sat Oct 07, 2017 4:16 pm

http://www.thelancet.com/journals/lanon ... 70-2045(15)00018-2/fulltext

This one seems to be fairly recent. Although the article itself was a bit equivocal regarding gains vs possible side effects, what I was after was this: "...At 3 years, the absolute gain in the primary trial endpoint, disease-free survival, was 4·7% and the absolute gain for distant recurrences was 3·9%..."

As an operable stage 3, I knew I would be NED after resection. But I don't want a recurrence.

I was able to work full time ( even went to work after chemo on chemo days until work told me not too) and I have no remaining side effects so I'm glad I did the most I could to fend off any possible recurrence. 9% looks good to me.

But we all take what we will from the statistics. Others will take the 3% and use it to support not doing the therapy. Particularly those who are hit hard with side effects.

My supplements were chosen to try and minimize the chance of neuropathy. Was this why I had so little? I'm not sure, maybe I was just lucky. Either way, I'm glad I've reduced my chance of recurrence by up to 9%.

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

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

Postby lpas » Sat Oct 07, 2017 4:38 pm

The only person I am aware of who has not done Oxi as a stage IV is rp1954's wife.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Sat Oct 07, 2017 4:49 pm

We've held lymph nodes and unbiopsied lung/liver features at bay for over seven years with (metronomic, daily) immunochemo including an oral 5FU derivative without oxi-, iri- etc. The apparent issue is achieving chemo intensity, multiple inhibitions, or hitting individuals' targets with multiple, milder adjuncts, without much cooperation from ASCO's acolytes.

For daily immunochemo, I'm not too sure when Xeloda is the optimal oral 5FU drug for continuous daily use but that alone is what is approved and available in the US. In Japan, papers on oral immunochemo were based on plain 5FU, and later, tegafur-uracil. UFT can be very cheap, but has never overcome FDA related obtsructions in the US.

Our bottom line backup for chemo resistance has been surgery, even if not standard because of their common perception of futility or some dangers with standard practice. We have had confidence during the early years that supplements and IV vitamin C would help overcome many surgical issues commonly encountered. With age and many years of anti-angiogenic chemo, other surgical risks will increase.
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

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

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

Postby Achilles Torn » Sun Oct 08, 2017 1:00 am

I’m just going to echo an earlier comment as I think it’s an important point. While a study may show an overall benefit across a group of people of 7%. That should not be extrapolated to the individual. Unfortunately you have no way of knowing but it may represent a much higher benefit to your husband or none at all.
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

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

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

Postby mpbser » Sun Oct 08, 2017 5:41 am

I didn't see half of these messages yesterday for some reason.

Tupelo honey, what supplements did you take? I saw your comments a while back on the What Supplements Do You Take? thread but I would really appreciate it if you could repeat here. Thanks!
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

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

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

Postby jep » Sun Oct 08, 2017 6:50 am

Good morning. My husband is stage 4 and he will have his 5th round of Folfox next week. So far, he's tolerating it, and has only had some slight sensitivity to cold. Our husbands' surgeries were only days apart. One of my main concerns was the delay in starting chemo (rough recovery from open LAR)....was your husband delayed for a similar reason?
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20


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