T3cN2a, refusing chemotherapy?

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Swede
Posts: 38
Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Sun Apr 07, 2019 1:32 pm

I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine. Radiation would have killed my sperm production completely, and also hurt other organs in my pelvis. Oxaliplatin would have irreversibly damaged my nervous system.

I am living essentially a normal life. I even have got several children, including twins, without any help whatsoever.

Do not hurt yourself irreversibly for the rest of your life with over-treatment. It is not worth it. (Yes, there is a small extra risk that you die if you refuse the over-treatment. But that risk is well worth taking to be able to live to the fullest for the rest of your hopefully long life.)
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: T3cN2a, refusing chemotherapy?

Postby martd » Sun Apr 07, 2019 7:39 pm

I did 11 rounds with oxaliplatin,..I don't have irreversible nerve damage
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

natelaugh
Posts: 95
Joined: Wed Apr 03, 2019 11:40 pm

Re: T3cN2a, refusing chemotherapy?

Postby natelaugh » Sun Apr 07, 2019 11:29 pm

Swede wrote:I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine.


Hi,

My dad has right colon, T3N2AMx, cecum, what is the dosage of xeloda were you on? Why did you use xeloda instead of 5 FU?

Thanks,
Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: T3cN2a, refusing chemotherapy?

Postby Jack&KatiesMommy » Tue Apr 09, 2019 12:03 pm

I did 3 years of Folfiri and 6 months of Oxiplaintin....I have no permanent damage. And I am still here today (8 years later.)
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

natelaugh
Posts: 95
Joined: Wed Apr 03, 2019 11:40 pm

Re: T3cN2a, refusing chemotherapy?

Postby natelaugh » Tue Apr 09, 2019 11:17 pm

Jack&KatiesMommy wrote:I did 3 years of Folfiri and 6 months of Oxiplaintin....I have no permanent damage. And I am still here today (8 years later.)


You are super awesome!!
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

Swede
Posts: 38
Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Wed Mar 20, 2024 11:16 am

natelaugh wrote:
Swede wrote:I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine.


Hi,

My dad has right colon, T3N2AMx, cecum, what is the dosage of xeloda were you on? Why did you use xeloda instead of 5 FU?

Thanks,
Nate.


2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to indicate that xeloda is not inferior to 5FU. maybe even better. At least for liver metastases I think.

I am now 11 years out from my diagnosis, alive and well. I have fathered many children. Frankly I am a bit surprised that I am not dead. I crap my pants from time to time, but I can live with that.
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: T3cN2a, refusing chemotherapy?

Postby rp1954 » Wed Mar 20, 2024 8:34 pm

Swede wrote:I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine... 2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to indicate that xeloda is not inferior to 5FU. maybe even better. At least for liver metastases I think.

I am now 11 years out from my diagnosis, alive and well. I have fathered many children. Frankly I am a bit surprised that I am not dead.


Congratulations, a big win on both the "ride" (Xeloda only) and the result.

Can we assume that "2.3 g twice daily"... "only took four rounds of xeloda/capecitabine" was two weeks out of three weeks per round of Xeldoa, or some other plan? That would be 90% of the European standard (initial) Xeloda dose and 112% of the US dosage per round/cycle.
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

Swede
Posts: 38
Joined: Fri May 17, 2013 4:40 am
Location: Sweden

Re: T3cN2a, refusing chemotherapy?

Postby Swede » Sat Apr 06, 2024 12:21 pm

rp1954 wrote:
Swede wrote:I will soon be six years out from my surgery. I am very glad that I refused both radiation and oxaliplatin, and only took four rounds of xeloda/capecitabine... 2.3 g twice daily. I am 176 cm 85 kg. Xeloda/capecitabine is far easier than 5FU (tablets at home vs iv at the hospital). Studies seem to indicate that xeloda is not inferior to 5FU. maybe even better. At least for liver metastases I think.

I am now 11 years out from my diagnosis, alive and well. I have fathered many children. Frankly I am a bit surprised that I am not dead.


Congratulations, a big win on both the "ride" (Xeloda only) and the result.

Can we assume that "2.3 g twice daily"... "only took four rounds of xeloda/capecitabine" was two weeks out of three weeks per round of Xeldoa, or some other plan? That would be 90% of the European standard (initial) Xeloda dose and 112% of the US dosage per round/cycle.


Yes, that is correct. That was the plan. Last round of xeloda I got horrible blisters on my feet. I could not walk, I had to crawl on the ground.
LAR 2013-04-29. 45 yo RC T3cN2a 4/38 nodes. Vascular invasion. Mucinous moderately differentiated adenocarcinoma 10-13 cm from anus
Refused rad&oxi. 4 rounds of xeloda
May 2014 CT, MRI and PET suspicious peritoneal mets. Surgery June 2014 only benign granuloma. NED
2015-04-10 clean MRI abdomen/liver/pelvis, clean pulm x-ray.
2016-05-13 clean MRI abdomen/liver/pelvis, clean pulm x-ray, clean colonoscopy
Cured.

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: T3cN2a, refusing chemotherapy?

Postby rp1954 » Sat Apr 06, 2024 11:56 pm

Swede wrote:Last round of xeloda I got horrible blisters on my feet. I could not walk, I had to crawl on the ground.

Thanks for getting back to us.
Sorry that your doctor(s) didn't have the knowledge/skill levels to prevent that last HFS part.

Overall, I think you likely still had better results, even with that late side effect.

If you could tell us a little more about the HFS onset timing (early, mid, late last cycle), progression and duration of the HFS, it would be useful.
Also what times did you take your capecitabine doses? x am/pm, and/or so many minutes after a meal?

I suspect that those HFS side effects could have been easily prevented by IV vitamin C and chronomodulation.

Here's a paper of contemporary Hong Kong patients' side effects CAP only vs CAPOX, and "folate levels". The paper does not differentiate natural folates and folic acid intake or metabolites.
It's unfortunate that medical articles continue to confuse natural folate vitamers, folinic acid (calcium folinate, Leucovorin), folic acid entities and their metabolites effects, because in 5FU related treatments, these differences are *crucial*. Although your dose suggests little folic acid exposure, I'd be interested if you think you had any folic acid supplemented in your food, or a ~daily multivitamin.
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


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