new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

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258ButterflyMama
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new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby 258ButterflyMama » Fri Dec 29, 2017 1:44 pm

not sure what to do. . .

i'm stage 3 c.. seven weeks out from dx and emergency surgery and removal of my tranverse colon and part of my left colon.

i'm 45 years old and mother to three kids 9, 11, 13. . .

i asked for enzyme test of 5fu and the last paragraph of that report said that i might be at higher risk of toxicity of that med. . .
colon cancer stage 3c
surgery 9nov17 took tranverse colon,bunch ofleft colon.
tumor invaded adipose tissue outside colon; majority of lymph nodes taken cancerous.
I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)
had lung biopsy - turned out to be nothing;
getting port 2jan18,chemo 3jan18- every other week for 24 weeks.

258ButterflyMama
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Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby 258ButterflyMama » Fri Dec 29, 2017 2:02 pm

i also have no idea how to post whatever it is you all are putting in your signatures. .all those abbreviations make no sense to me.
colon cancer stage 3c
surgery 9nov17 took tranverse colon,bunch ofleft colon.
tumor invaded adipose tissue outside colon; majority of lymph nodes taken cancerous.
I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)
had lung biopsy - turned out to be nothing;
getting port 2jan18,chemo 3jan18- every other week for 24 weeks.

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby Caat55 » Fri Dec 29, 2017 3:00 pm

To add signatures go to your profile.

I did oral Xeloda. It was no big deal, hands and feet were very dry, constantly using serious moisturizers. A little tired.
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

veckon
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Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby veckon » Fri Dec 29, 2017 4:18 pm

I did the 48-hour IV 5-FU infusion as part of FOLFOX so I will give you my experience with that. It was annoying to sleep with and carry around for two days but overall it was manageable. The biggest side effect my care team blamed 5-FU for was an odd discoloration of any bruise or scar I had. For example, my surgical scars turned into a dark purple-red, which is only now starting to fade, six months after my last FOLFOX infusion. Bruising under my eyes became noticeable and I kind of looked like a zombie too. :mrgreen:
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby Lee » Fri Dec 29, 2017 7:10 pm

258ButterflyMama wrote:i also have no idea how to post whatever it is you all are putting in your signatures. .all those abbreviations make no sense to me.


This sticky near top of page might help. First page and last page most useful.

viewtopic.php?f=1&t=5366

Lee

Edited to add I did Folfox with the 48hr IV pump.
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 - 16 years and counting!

NHMike
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Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby NHMike » Fri Dec 29, 2017 8:03 pm

From recollection of the enzyme tests discussed with my oncologist last July: the enzyme test is a genetic tests that tells whether your body has a much harder time metabolizing the 5FU and it can be dangerous if you can't metabolize it. Xeloda is just the oral form of 5FU - so Xeloda and 5FU may not be great options.
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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O Stoma Mia
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Re: 5-FU & Xeloda- DPD deficiency- Life Threatening!

Postby O Stoma Mia » Fri Dec 29, 2017 9:19 pm

258ButterflyMama wrote:not sure what to do. . .

i'm stage 3 c.. seven weeks out from dx and emergency surgery and removal of my tranverse colon and part of my left colon.

i'm 45 years old and mother to three kids 9, 11, 13. . .

i asked for enzyme test of 5fu and the last paragraph of that report said that i might be at higher risk of toxicity of that med. . .

If the enzyme test you are referring to is the DPD deficiency test, then you should read these threads:

Re: 5-FU & Xeloda- DPD deficiency- Life Threatening!
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43901&p=314060#p314060

DPD Deficiency - Dihydropyrimidine Dehydrogenase Deficiency
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52587&p=413652#p413652

... and look through some of these threads:

Some DPD threads
.
.

258ButterflyMama
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Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby 258ButterflyMama » Sat Dec 30, 2017 9:23 am

good to know. i'm seriously leaning towards the pill and also whatever iv chemo cocktail the doc has in mind in lieu of the modified folfax 2 day iv pump (to skip the whole 5fu which my body may not be able to handle according to the testing - the doc blew off that enzyme test - said the majority of the test came back fine, but it was that last paragraph section in the test that had me concerned. . and of course, i left that paper at the oncologist. . i had my kids with me and put the paper down for a minute to refill water bottles and forgot to pick it up again. i called and they said they'll mail it. .fingers crossed. esp since the oncologist hasn't put it in my online version of my records. . .

i do understand how to make a signature. . i just have no idea what all those abbreviations are NED ? and other things. no idea at all. . so i guess i'll just add a signature with my entire info and someone can turn it into jargon for me?
colon cancer stage 3c
surgery 9nov17 took tranverse colon,bunch ofleft colon.
tumor invaded adipose tissue outside colon; majority of lymph nodes taken cancerous.
I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)
had lung biopsy - turned out to be nothing;
getting port 2jan18,chemo 3jan18- every other week for 24 weeks.

258ButterflyMama
Posts: 8
Joined: Wed Nov 22, 2017 3:18 pm
Facebook Username: BettyAnn Darren
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Contact:

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby 258ButterflyMama » Sat Dec 30, 2017 9:42 am

my 'story'

I have colon cancer - stage 3c. Went to the ER late monday (November 6, 2017) night because I had severe abdominal pain (was thinking I just had horrible menstrual cramps or just a lot of gas). . .well, they ended up doing a CT scan of my abdomen. Found a huge mass. . Then they did another CT scan - of my lung area. . because the first CT scan seemed to show something going on in lungs. . .the second CT scan showed more masses in bottom of lungs. Then they did a contrast CT of neck down to pelvis. . They had me attempt to take a colonoscopy prep medication and the blockage was too large so I just vomited that up. . had the lovely experience of 4 enemas and then the colonoscopy to see what they could. the results are back from the small things they removed during colonoscopy - definitely cancer. (Thursday, november 9, 2017) had surgery to remove the large mass from my transverse colon. I'm 45 years old. Had no idea, no symptoms, nothing. I was pooping out large and full of pride huge poop logs on Sunday. . the day before this all happened. . .. went to work Monday, no idea at all of the drama about to unfold starting at suppertime that Monday when the waves of pain started - every 7 minutes - it was like labor contractions - took my breath away at the peak of each one.

I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)

the pet scan shows a lot of masses in my middle. and some good sized tumors in my rectum and other areas that are not accessible for surgery apparently.

had lung biopsy - turned out to be nothing; breast mammogram for the previous lumps and things that they biopsied in the past are all now resolved.

just had a successful colonoscopy this past week and they removed 4 polyps that the doc is sure are not cancerous.

getting a port on Tuesday, start chemo on Wednesday - every other week for 24 weeks. supposed to have another pet scan after 8 chemos or 8 weeks, I'm not sure which. . .
colon cancer stage 3c
surgery 9nov17 took tranverse colon,bunch ofleft colon.
tumor invaded adipose tissue outside colon; majority of lymph nodes taken cancerous.
I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)
had lung biopsy - turned out to be nothing;
getting port 2jan18,chemo 3jan18- every other week for 24 weeks.

weisssoccermom
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Location: Pacific NW

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby weisssoccermom » Sat Dec 30, 2017 11:44 am

I"m a little confused about your story. It appears that your diagnosis is colon cancer, since you had your transverse colon removed. You state that you have masses in your rectum/middle which are not amenable to surgery but then you state that you had another colonoscopy this past week that removed 4 polyps. You had a colonoscopy prior to your surgery.....why didn't they see the 4 polyps that they just removed? You had surgery on 11/9 and they just did another colonoscopy 6 weeks later? On this last colonoscopy, why didn't they see the tumor in your rectum? Obviously they would have but you didn't say anything about it. I'm surprised that the docs that did the second colonoscopy wouldn't have biopsied the rectal mass while they were in there. Didn't they discover the rectal tumors with the first colonoscopy?
What is the primary....the rectal tumors or the one in the transverse colon? If these tumors in your rectum and your 'middle' are all mets, then based on your description, you should be a stage IV....simply because of the mets in other places.
What does your pathology say? How many lymph nodes were affected?
I have to be concerned about the quality of care that you are receiving. It just seems shocking to me that someone would have a second colonoscopy 6 weeks after having such major surgery. That procedure, in itself, is difficult on a person who just had a major part of their colon removed.
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!
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Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby O Stoma Mia » Sat Dec 30, 2017 1:20 pm

258ButterflyMama wrote:... getting a port on Tuesday, start chemo on Wednesday - every other week for 24 weeks...

If you start chemo on Wednesday, then be sure that they monitor you very closely during the entire first infusion, especially the first half hour or so. Because of your enzyme report they need to be very careful that you are not developing a severe toxic reaction to the 5FU part of the infusion.

What you are describing is the standard FOLFOX regimen with a 2 week cycle. The pill version isn't administered on a 2 week cycle; it uses a 3 week cycle instead.

Be sure you remind the people in the infusion center about the last paragraph in your enzyme report. They need to know about that so that they can take the necessary precautions.

Lee
Posts: 6207
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Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby Lee » Sat Dec 30, 2017 2:56 pm

258ButterflyMama wrote: . . . i just have no idea what all those abbreviations are NED ? and other things. no idea at all. . so i guess i'll just add a signature with my entire info and someone can turn it into jargon for me?


Again, you really want to read this sticky near top of forum "Terminology and abbreviation" First page and last page most useful. Click on link below, it will take you to the thread.

viewtopic.php?f=1&t=5366

FYI NED is short for No Evidence of Disease.

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 - 16 years and counting!

258ButterflyMama
Posts: 8
Joined: Wed Nov 22, 2017 3:18 pm
Facebook Username: BettyAnn Darren
Location: Minerva Park, Ohio, USA
Contact:

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby 258ButterflyMama » Sat Dec 30, 2017 10:13 pm

here's edited info - the photos weren't really legible on the 5fu test results.

so here are links to the pages on the enzyme test the oncologist ran. (fourth page not included, it was just the signature info from the lab)


p1: https://www.scribd.com/document/368164307/p1-Enzyme-5fu
p2: https://www.scribd.com/document/368164306/p2-Enzyme-5fu

p3: https://www.scribd.com/document/368164305/p3-Enzyme-5fu
Last edited by 258ButterflyMama on Sun Dec 31, 2017 9:43 am, edited 1 time in total.
colon cancer stage 3c
surgery 9nov17 took tranverse colon,bunch ofleft colon.
tumor invaded adipose tissue outside colon; majority of lymph nodes taken cancerous.
I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)
had lung biopsy - turned out to be nothing;
getting port 2jan18,chemo 3jan18- every other week for 24 weeks.

258ButterflyMama
Posts: 8
Joined: Wed Nov 22, 2017 3:18 pm
Facebook Username: BettyAnn Darren
Location: Minerva Park, Ohio, USA
Contact:

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby 258ButterflyMama » Sat Dec 30, 2017 10:25 pm

weisssoccermom wrote:I"m a little confused about your story. It appears that your diagnosis is colon cancer, since you had your transverse colon removed. You state that you have masses in your rectum/middle which are not amenable to surgery but then you state that you had another colonoscopy this past week that removed 4 polyps. You had a colonoscopy prior to your surgery.....why didn't they see the 4 polyps that they just removed? You had surgery on 11/9 and they just did another colonoscopy 6 weeks later? On this last colonoscopy, why didn't they see the tumor in your rectum? Obviously they would have but you didn't say anything about it. I'm surprised that the docs that did the second colonoscopy wouldn't have biopsied the rectal mass while they were in there. Didn't they discover the rectal tumors with the first colonoscopy?
What is the primary....the rectal tumors or the one in the transverse colon? If these tumors in your rectum and your 'middle' are all mets, then based on your description, you should be a stage IV....simply because of the mets in other places.
What does your pathology say? How many lymph nodes were affected?
I have to be concerned about the quality of care that you are receiving. It just seems shocking to me that someone would have a second colonoscopy 6 weeks after having such major surgery. That procedure, in itself, is difficult on a person who just had a major part of their colon removed.


i didn't have a proper colonoscopy first time around - i was an er admission. that's when they did the ct scans and saw the masses. . tried to do colonoscopy but i kept puking up the prep solution. had 4 enemas. . still not a clean colonoscopy. . they didn't even see the polyps first time because it was such a mess . . the colonoscopy done this week was to find anything else. .

and yes, i have a suspicion i should be labeled stage 4, but i guess they're hoping i'm hanging in at 3c. .
the tumor removed from tranverse colon is the primary thing. . the rectum masses and other little things were all seen on pet scan but are not accessible for biopsy or some such. . not really sure on all the details. the rectum mass or whatever it is is too deep in somewhere. . i wish i knew the answers. i'm just trying to figure out what to do that's the smartest.

and no they did not see the tumor in my rectum on colonoscopy - it was seen via pet scan.

here's a pic of my colonoscopy done this week - you can see for yourself. . insight appreciated. i'm in a crash course of learning everthing right now.

Image

as for lymph nodes 14 out of 22 and surgeon couldn't take all of the lymph nodes obviously affected. he told me he had to tie off and leave a bunch that were 'necrotic and oozing' (his exact words) because they were very close to pancreas and/or that organ's blood supply and if he messed with those, he'd have had to take my pancreas. at this time, the pet scan did not show anything going on in pancreas.

i really appreciate the reply. . trying to learn and know what to do. . .my decisions are not affecting only me, they're affecting my whole family. . ..
colon cancer stage 3c
surgery 9nov17 took tranverse colon,bunch ofleft colon.
tumor invaded adipose tissue outside colon; majority of lymph nodes taken cancerous.
I've had a pet scan with radiation from eyes to thighs, several ct scans of different areas (chest, midsection, combo, and some with contrast, some without. some with oral contrast, some with iv contrast - iodine based I think)
had lung biopsy - turned out to be nothing;
getting port 2jan18,chemo 3jan18- every other week for 24 weeks.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: new. . trying to decide between xeloda? (sp) with iv chemo and modified folfax

Postby Lee » Sat Dec 30, 2017 11:26 pm

Lee wrote:
258ButterflyMama wrote: . . . i just have no idea what all those abbreviations are NED ? and other things. no idea at all. . so i guess i'll just add a signature with my entire info and someone can turn it into jargon for me?


Again, you really want to read this sticky near top of forum "Terminology and abbreviation" First page and last page most useful. Click on link below, it will take you to the thread.

viewtopic.php?f=1&t=5366

FYI NED is short for No Evidence of Disease.

Lee


THIRD and FINAL post on this thread. IF YOU ARE SERIOUS about wanting to learning about what you are up against. PLEASE click on the above thread. It is a crash course in what you want to know.

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 - 16 years and counting!


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