Chemo opitions

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Teddybear
Posts: 37
Joined: Sun Feb 11, 2018 3:23 pm

Chemo opitions

Postby Teddybear » Mon Mar 26, 2018 7:23 pm

I wanted to ask for help understanding my chemotherapy opitions. My first oncologist wants to do 6 months Xeloda. I went to a new oncologist today for a second opinion who suggested 6 months of folfox and didn’t like the xeloda idea. I have also read current information suggesting 3 months of folfox is as good as 6. But I don’t know if that’s routine or just a suggestion. I am so confused and feel the more I read the less I understand. Doctors say the same thing , they really can’t tell if it will even help. Is xeloda equivalent to folfox? Any thought very appreciated :D
DX CC Feb 2018
Feb 2018 Lap sigmoind resection
2A
T3N0M0/G2
0/14 nodes
Oncogene 14
Margins clear
MSS
April-June 2018 Xeloda

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Robino1
Posts: 463
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Facebook Username: Robin.lawthers
Location: Florida

Re: Chemo opitions

Postby Robino1 » Mon Mar 26, 2018 8:57 pm

Xeloda is the pill form of 5FU. 5FU is usually where you wear a pump device home for approximately 48 hours then get disconnected.

I think that the thinking is the 5FU gets into the system more effectively (?)


There is some new thinking that 6 treatments of FOLFOX is as affective as doing the normal 12.

That's about all the help I can give. There are WAY more knowledgeable people and I hope they chime in for you.
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

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Chemo opitions

Postby weisssoccermom » Mon Mar 26, 2018 9:23 pm

Don't be surprised that some doctors don't like the thought of Xeloda. It's not a new way of thinking. There are a few valid reasons why some oncs don't prefer it. For example, if the onc knows that the patient won't comply or doesn't think that the patient will comply....then honestly, Xeloda isn't the drug for that patient. If the patient is very forgetful or if taking pills is difficult for the patient, Xeloda isn't the right choice.

HOWEVER, please be aware that from the very beginning, oncs have resisted Xeloda (this came straight from my onc who told me this was discussed at conferences) simply because they have no monetary skin in the game. Infused 5FU is cheap BUT....the onc's office can and does mark up the price and can make a good return on it. Xeloda, on the other hand, is purchased at the patient's local pharmacy and the onc has no monetary gain from it.

The decision should be YOURS. If you feel that you can remember to take the pills and don't have any issue with taking pills and you would prefer to be on Xeloda, then just tell the onc that's what YOU want. Studies have shown absolutely NO difference in efficacy between the two. Actually, from pathology reports, Xeloda has been shown to have been slightly more effective in getting the cancer killing 5FU into the tumor tissue and avoiding healthy nearby tissues.

I tried the infused 5FU and the pump and absolutely HATED it! Went on Xeloda and never regretted it one minute. This is YOUR journey and you have to decide which option is better for you. If you decide to do just Xeloda, then there is no port needed.

FYI: Xeloda is the same as infused 5FU
FOLFOX is 5FU + oxaliplatin
XELOX is Xeloda + oxaliplatin

So answer is no, Xeloda is not the same as FOLFOX.
You are in that gray area where the oxi has relatively little ACTUAL survival benefit for a stage II cancer patient with NO negative prognostic factors. Be aware that the oxi DOES have the very potential for long term/permanent side effects (neuropathy...feet/fingers). When I started my treatments, I BEGGED the doc for the oxi...I thought it was the end all be all drug and he really didn't want me to take it. I insisted though. One dose and a horrible reaction and I stopped. I did Xeloda only....had a much less invasive (and not recommended surgery) and I am 11 years out from surgery next month (12 years from diagnosis). I am a FIRM believer in Xeloda and would do it again. You have to make the decision not only about the Xeloda but about the oxi .
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

menreeq
Posts: 70
Joined: Fri Jun 30, 2017 10:26 am

Re: Chemo opitions

Postby menreeq » Mon Mar 26, 2018 10:08 pm

You and I have the same TNM staging, same tumor location and same surgery. I did six months of Xeloda. My decision was whether to do Xeloda or nothing. All three Oncs I consulted did not recommend the platin based drug because the side effect profile is much worse.

Also, the new data on 3 vs 6 months chemo came out last summer but the research was on stage III patients. Oncologists are extrapolating that data to Stage II, but no one really knows if the results are the same. I figured I would start, aim for 6 months, but not feel bad if I couldn’t tolerate side effects and had to stop after 3. Xeloda was tolerable. I made it through the full 8-cycle course and still kept working.

Why not consult another oncologist, preferably one at an academic cancer center? There isn’t a clear answer for Stage IIA. But it helps to be well informed.

Good luck.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41ls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17), 0.8 (2/28/18), 1.0 (9/17/18), 1.1 (4/16/19), 1.0 (9/24/19), 1.7 (7/8/20)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics neg for mutations, 4 VUS
Xeloda monotherapy 8/13/17-1/22/18
PET/CT 3/21/18 NED
CT C/A/P 9/17/18 NED, 3/8/19 NED, 9/19/19 NED, 5/13/20 NED

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Chemo opitions

Postby peanut_8 » Tue Mar 27, 2018 10:46 am

Hi Teddybear

Welcome to Colon Talk. You'll find lots of sympathetic folks here in situations similar to yourself.

Sorry to hear of your diagnosis. Getting a cancer diagnosis just plain sucks.

IMO you're doing yourself a great service by finding out as much as possible about your treatment options. You've received great advice so far, so I'll just let you know about your options from my own vantage point.

I'm in a similar situation to you being stage 2a. Only difference I have rectal cancer, and it sounds like you have colon cancer, so you won't be getting radiation. Seems like your options are:

1. no additional chemo, just blood work and scanning at regular intervals
I see that neither oncologist you have seen has recommended this option, butt I think if you were to continue to get other opinions you would eventually find one who would recommend this, especially since it sounds like you have no other negative prognostic features. Here's a link discussing prognostic factors, if you're interested. https://wjso.biomedcentral.com/articles ... 016-0826-4

2). Xeloda (or the intravenous equivalent 5-FU). This has been the treatment option for a long time. With Xeldoda you avoid the intravenous element of treatment. You don't need a port (https://www.cancer.net/navigating-cance ... -treatment. more information on ports). Butt like Jaynee said you need to remember to take the pills, and optimally they should be about 12 hours apart taken with food.

There are also side effects associated with Xeloda, notably nausea and hand/foot syndrome, a condition where your hands and feet can become irritated. https://en.wikipedia.org/wiki/Chemother ... l_erythema. It's unpleasant butt can usually be managed. For the record, this is the option that I chose. My onc initially recommended FOLFOX, I countered with Xeloda, and he said that was a perfectly reasonable alternative.

3). FOLFOX. This option requires infusion and is 5-FU + oxaliplatin. You get the oxi on the infusion day, and are sent home with some sort of device where the 5-FU continues to be infused intravenously for the next couple of days. A disconnect is required at the end of the 5-FU infusion. Some people have been taught to disconnect themselves, some get a disco nurse to come to their home, and some have to return to the infusion center for disconnect.

Side effects from oxi tend to be more severe, and can be permanent. I didn't have this, so I'm attaching a link for reference. http://www.chemocare.com/chemotherapy/d ... latin.aspx

There are variations of this combo such as XELOX, xeloda + oxaliplatin. The oxi is infused intravenously and you take the xeloda (or generic equivalent) orally.

So, you might wonder what is the benefit of FOLFOX. Especially since the side effects are quite a bit worse, and you need intravenous infusions. As far as I know, there haven't been scientific studies to determine the percentage benefit of the addition of oxi in the strictly stage 2 patient. I kind of recall my onc saying somewhere in the 3% range. So if you have an 85% chance of being disease free at the 5 year mark, the addition of oxaliplatin would increase your chances to 88%. Only you can determine if the risk is worth it. Don't let someone bully you into deciding on what is in their best interest as opposed to yours. As Jaynee noted, some less scrupulous oncs like to prescribe treatment options that benefit their pocketbook, as opposed to their patients best interest.

Wow, I'm not usually this long winded, butt hopefully it may help.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: Chemo opitions

Postby retiredteacher » Tue Mar 27, 2018 11:31 am

I did ask my oncologist about the six vs three month study - he noted that the study applied to colon cancer, not rectal cancer patients. He uses a six month TOTAL treatment time - that is the sum of the neoadjuvant plus adjuvant - for rectal cancer patients.
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: Chemo opitions

Postby heiders33 » Tue Mar 27, 2018 11:46 am

Yes that’s exactly what my onc said. Six months total treatment including neo-adjuvant, with a break for surgery. I ended up doing six rounds of mop-up Xelox.
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Chemo opitions

Postby susie0915 » Tue Mar 27, 2018 11:56 am

My oncologist said the same. Six months total chemotherapy including preadjuvant therapy. I did 6 rounds of Xelox. Xeloda plus oxaliplatin. I had no problem taking the pills, and preferred the convenience. I also had the same staging as you. Can be so confusing I know.
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

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GrouseMan
Posts: 854
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Chemo opitions

Postby GrouseMan » Tue Mar 27, 2018 2:16 pm

Robino1 wrote:Xeloda is the pill form of 5FU. 5FU is usually where you wear a pump device home for approximately 48 hours then get disconnected.

I think that the thinking is the 5FU gets into the system more effectively (?)


There is some new thinking that 6 treatments of FOLFOX is as affective as doing the normal 12.

That's about all the help I can give. There are WAY more knowledgeable people and I hope they chime in for you.


I have to clear up one thing. Xeloda is not the pill form of 5-FU. Its a prodrug that if you have the right liver enzymes (and some people are deficient in some of them) Xeloda is converted into 5-FU. Please see the following Wiki Link. https://en.wikipedia.org/wiki/Capecitabine Especially take a look at the Mechanism of Action diagram. Additionally some people have a harder time with Hand and food syndrome with Xeloda vs 5-FU. For my wife 5-FU was easy. I think many oncologists are less prone to use it because of it potential variability in metabolism vs 5-FU where there is much less of that.

Good Luck

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Teddybear
Posts: 37
Joined: Sun Feb 11, 2018 3:23 pm

Re: Chemo opitions

Postby Teddybear » Tue Mar 27, 2018 6:31 pm

Thank you to everyone for the advice! I have made a third appointment to review oncogene test and that will be deciding factor of which therapy I choose. This is so overwhelming and I think about this cancer 24/7. My husband and I are just so sad. He had prostate cancer and his 5 year date is this June. We thought we could relax a little and now it's my turn. So I am going to pray and let this go as much as I can.

:) Health and blessing to everyone!
DX CC Feb 2018
Feb 2018 Lap sigmoind resection
2A
T3N0M0/G2
0/14 nodes
Oncogene 14
Margins clear
MSS
April-June 2018 Xeloda

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Chemo opitions

Postby mhf1986 » Tue Mar 27, 2018 7:03 pm

If you try Xeloda and don't like it, ask to switch to 5FU. DH was on 5fu and switched to Xeloda after a year. He got such bad diarrhea and hand/foot syndrome that he asked to switch back to 5fu after 2 months.

M
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

weisssoccermom
Posts: 5976
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Chemo opitions

Postby weisssoccermom » Tue Mar 27, 2018 9:05 pm

I switched from 5FU to Xeloda for a few reasons.

1. I hated the pump.
2. I found myself to be more tired on the 5FU than with the Xeloda....also more moodier.
3. The studies showed no difference in the efficacy of the two.
4. For me, there was a psychological factor of being on the pill....more than just the convenience.....I didn't have the pump and people didn't know that I was taking the drug.
5. While it is true that hand/foot syndrome is notably worse on Xeloda (however, not everyone gets it....I never got it but was very proactive about taking care of my hands/feet) the studies also show that most other symptoms.....nausea, fatigue, gastro upset, etc. are less severe on Xeloda. One important part to remember is to NOT take folic acid while on Xeloda. In the last 12 years, I have only found ONE multivitamin that didn't contain folic acid but it didn't contain much of anything else either. Remember that in the USA, our grains are fortified with folic acid so foods like: bread, pasta, crackers and cereal ALL contain folic acid....some in large quanities.
Folic acid allows the drug to remain in the system longer which can lead to more gastro symptoms. When a patient opts for the infused 5FU, another drug, leucovorin....which is a derivative of folic acid. It is the leucovorin which exacerbates the symptoms of 5FU so it only makes sense that when a person is taking Xeloda, significant quantities of folic acid will also allow the drug to remain in the patient's system longer.

Without leucovorin, infused 5FU basically just 'runs through' the patient's body so the addition of leucovorin allows the drug to remain in the system longer. Xeloda is taken twice a day, therefore no leucovorin is administered.

I do not regret my choice in taking Xeloda and stopping the oxi. Everyone is different and you have to be comfortable with whatever decision you make.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 2527
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemo opitions

Postby NHMike » Wed Mar 28, 2018 8:48 am

I've only used Xeloda and it's the right choice for me due to the convenience. One other aspect is that my oncologist said that one of them hits the liver and the other hits the kidneys. I don't think that should matter for you but it might matter for some.

The Oxaliplatin infusions that I'm getting are billed at $11,000. The negotiated rate with my insurance company is around $1,000. The Xeloda is about $3,500 (generic) per cycle and there are eight cycles for Xeloda and twelve for 5FU. I don't know how the billing works with 5FU. I think that the negotiated insurance rates are far lower than the retail prices.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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