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

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Mon Dec 11, 2017 9:34 pm

Hi mpbser,
Your update sounds great!
Best of luck on Wednesday, it is his last chemo before surgery I presume? So ’vacation’ over Christmas?
One day at a time.
Kind regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Tue Dec 12, 2017 12:57 am

mpbser wrote:Just stopping in for a quick update. Husband saw his primary care doctor today. He wasn't alarmed by his A1C being a 7 and attributed the diabetes setback primarily to the chemo. Husband has gone off his strict diet somewhat in the past couple of months, but I suppose not horribly. All the rest of the bloodwork is looking phenomenal for someone who has had three rounds of chemo. His doctor was extremely optimistic and told husband he is going to beat this.

Husband has his fourth infusion on Wednesday, just in time for 18 degree F temperatures to hit our region. He had cold sensitivity the last round which lasted a few days, so he will be very careful this round. I have reserved the day to take care of him and the rest of week for my work will be kept light.

Also on a positive note, his work has brought him closer to home for the next couple of weeks so he won't have to commute 3 hours every day, 6 days a week for work. I feel like god is protecting him, despite my religious skepticism.


Great news! I'm glad you have positive news to share during the holidays, a true gift! Wishing your husband continued good progress and wishing you peace of mind while you take this journey beside him. You're an awesome caretaker and wife, lucky guy to have you looking out for him!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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

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

Postby mpbser » Tue Dec 12, 2017 6:05 am

Thanks, everyone! Exactly 8 months ago we got his cancer diagnosis after he was close to death with congestive heart failure. These days feel 180 degrees different from back then.

I hope you all have a peaceful holiday season!
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

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henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Wed Dec 13, 2017 12:22 pm

Tupelo honey wrote:And don't forget Oxi may not be as bad as he's dreading. While I did have some temporary effects during treatment, and some mild numbness of fingertips and crampy toes from appx 2- 5 months after treatment, I did complete the full course of Oxi with no permanant side effects.


Agree.
Oxaliplatin is not that bad. Of course, side effects vary for each individual.
Throw all you can at the enemy at the gates.
Just a suggestion, avoid raw foods and milk products with xeloda.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

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

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

Postby mpbser » Thu Dec 14, 2017 7:18 am

I haven't heard that about milk products. Do you know why they should be avoided?
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

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Thu Dec 14, 2017 12:29 pm

This monograph should contain some more info listed under the Continue treatment with XELODA as planned section
http://www.colorectal-cancer.ca/IMG/pdf ... _final.pdf

- the raw foods could be an issue for digestion and possible food borne illness affecting those with compromised immune systems
( potentially anyone on chemo )
- the dairy reference would likely just be due to diarrhea issues ( lactose content ) and obviously unpastuerized products.

Cheers
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

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

Postby mpbser » Fri Dec 15, 2017 6:30 pm

Thanks for the pdf. I hope to find some time this weekend to look at it. I am so swamped with work, it's crazy!

Husband has done remarkably well this round. He went to work right after his infusion yesterday and went to a late night showing of the new Star Wars movie. He does have cold sensitivity in his hands and very mild first bite syndrome, but that's about all. He's full of energy as if he isn't on chemo!
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Dec 15, 2017 8:36 pm

mpbser wrote:Thanks for the pdf. I hope to find some time this weekend to look at it. I am so swamped with work, it's crazy!

Husband has done remarkably well this round. He went to work right after his infusion yesterday and went to a late night showing of the new Star Wars movie. He does have cold sensitivity in his hands and very mild first bite syndrome, but that's about all. He's full of energy as if he isn't on chemo!


It really sounds like he’s doing great as he’s enjoying life. I do find that work is often a welcome distraction to think about cancer and treatments.
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

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Sat Dec 16, 2017 9:19 am

mpbser wrote:I haven't heard that about milk products. Do you know why they should be avoided?


As immunity is compromised I used to get frequent stomach infections .
So I was told by my gastrologist to avoid raw food and milk .
It was ok to have yogurts.
Anyways , later I have become vegan.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

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

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

Postby mhf1986 » Tue Dec 19, 2017 9:10 pm

DH is having a rough time with Xeloda. Hand/foot pain necessitated a drop in dosage from 3000 mg a day to 2000 last week. Diarrhea has been a problem since the weekend; he's been taking 5-6 imodium a day and about to increase to max of 8 a day. He's also cold and sleepy a lot. Last dose was this morning so I am hoping that a week off helps him recover. I think he's going to try a 3rd cycle and then discuss with the oncologist if switching back to the 5fu is a better idea.

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

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

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

Postby mpbser » Thu Dec 28, 2017 11:50 am

Sorry to hear Xeloda is causing your husband trouble, mhf.

Luckily, my husband has had minimal side effects. Last night was his last dose! He has been indulging in sweets and a few drinks this holiday, but at least he is loving life.

We will find out how well chemo has worked on January 12 when we go to Boston for his MRI and appointment with oncologist and liver surgeon.
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 » Thu Dec 28, 2017 11:53 am

I just took a look at that pdf you shared, CRguy. Very handy!

I like the section "avoid cold temperatures." It was -9F this morning here. -15F in the forecast. LOL.
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Dec 28, 2017 12:14 pm

mpbser wrote:I just took a look at that pdf you shared, CRguy. Very handy!

I like the section "avoid cold temperatures." It was -9F this morning here. -15F in the forecast. LOL.


I went out for a nice stroll this morning with temps of -1. You'll get cold sensitivity in these temperatures whether you're on Oxaliplatin or not.
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

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

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

Postby mpbser » Thu Dec 28, 2017 5:06 pm

You are much heartier than I am or my husband is to be strolling around in these temps! We are sadly sedentary during these times.
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Dec 28, 2017 9:01 pm

mpbser wrote:You are much heartier than I am or my husband is to be strolling around in these temps! We are sadly sedentary during these times.


You guys live in a pretty rough area for winter.

It's pretty cold here too and my car TPWS light came on on the drive home and the water temperature didn't make it above 1/4 so the cabin never warmed up and the steering wheel was ice cold. But this is New England. Next car - either get a 6-cylinder engine or a cold weather package (heated mirrors, steering wheel, front seats). So tomorrow I have to get out my tire pump and attach the hose to the valve stem and add air to the tires. I also have to measure the pressure with a gauge. Of course this usually means taking off my gloves as it requires some dexterity and, of course, the high temp for tomorrow is around 13 degrees. Toyota cheaped out in the latest Camry. My old Camry had a TPMS (Tire Pressure Monitoring System) that told you the pressure of each tire. The new cars come with a TPWS (Tire Pressure Warning System) which only tells you if there's a problem. So you have to check each tire manually to see which needs air or has too much air. The higher equipment models only have the TPMS. It's implemented in software so it's just a software switch to turn on. It's something that I'd pay for if they could add it via an update.

I generally encourage everyone to be active in some way because it generally makes it easier to age gracefully.
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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