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

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lovelife789
Posts: 21
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 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 reaction from Xeloda, it was dropped
9/22 - Folfox resumes, allergic to Oxi...
10-12/17 - completed 6 full rounds of FOLFOX

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Robino1
Posts: 220
Joined: Fri Aug 11, 2017 12:09 pm
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 detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

TXLiz
Posts: 228
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
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: 312
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 - 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

mpbser
Posts: 312
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 - 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 » 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 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

TXLiz
Posts: 228
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
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
Posts: 544
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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 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

Stewsbetty
Posts: 101
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

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 » 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: 991
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, Celebrex & many supplements
3/16 Ovarian mass removed. Benign fibroid
9/16 clean colonoscopy
3/17 clean CT
Ongoing Celebrex, cimetidine & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3
Mom to a 3 & 6yo

rp1954
Posts: 1203
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 caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Achilles Torn
Posts: 89
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.
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 Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

mpbser
Posts: 312
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 - 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

jep
Posts: 37
Joined: Sun Jun 11, 2017 7:45 pm

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
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR


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