Wives of husbands with Stage IV Colon Freaking Cancer

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Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Tue Nov 28, 2017 10:41 am

Hi MHF, did they recommend anything for those side effects?
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

mhf1986
Posts: 124
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Tue Nov 28, 2017 5:29 pm

HI Mrs Zig, We don't see the oncologist until next Tuesday. Previously, a lot of good lotion (Eucerin) and keeping hands out of water (no dishes!) was recommended. It hasn't gotten to the point that skin is peeling off so I don't think Dr. will reduce dose much if any. DH is on 3000 mg a day which is super high I think. If DH could keep stoma output more under control/thicker he'd be happier. Kaopectate helps, Imodium's a little strong.

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 1.6, ascites mostly gone

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Sun Dec 03, 2017 10:02 am

Hi MHF sorry I’ve been MIA. Mr Ziggy is getting dry skin on his clinical trial drugs, and even though Acquafor is a pasty petroleum type substance, and messy this stuff also works really well. I’m going to try the Eucerin and see if that would be less messy.
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

mhf1986
Posts: 124
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Sun Dec 03, 2017 2:49 pm

Mrs Zig, Bag Balm has also been recommended. I've read that the active ingredient of Urea in whatever lotion is most useful.

DH's last dose of Xeloda was Tuesday, hands/feet all better by Friday but he developed diarrhea yesterday. He's switched from Kaopectate to Imodium every 4 hours to see if can get under control. If not, we'll ask for a prescription on Tuesday or maybe Onc will reduce dose. Always something! I made him some rice for lunch and he's napping now. Seriously wondering if going back to the pump might be better.

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 1.6, ascites mostly gone

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susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby susie0915 » Sun Dec 03, 2017 3:23 pm

mhf1986 wrote:Mrs Zig, Bag Balm has also been recommended. I've read that the active ingredient of Urea in whatever lotion is most useful.

DH's last dose of Xeloda was Tuesday, hands/feet all better by Friday but he developed diarrhea yesterday. He's switched from Kaopectate to Imodium every 4 hours to see if can get under control. If not, we'll ask for a prescription on Tuesday or maybe Onc will reduce dose. Always something! I made him some rice for lunch and he's napping now. Seriously wondering if going back to the pump might be better.

M

I had a prescription for lomotil which is a pill, and my oncologist also gave me questran which is a powder you can put in juice or water. It's a rx used for cholesterol but it also prevents diarrhea. This always worked for me. Just an FYI. I alternated immodium and lomotil every 3-4 hours if I was having issues. The key is only take it if you are having diarrhea as it can flip you into constipation. If you don't go in-between doses skip that dose. Good luck to your husband. I know the side effects never seem to stop.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Sun Dec 03, 2017 6:28 pm

MHF I hope he is getting plenty of fluids. It's true, once they change the drugs or stop new symptoms come and then it's tweaking food, meds, etc to get them under control. My hubs is also taking kaopectate and hasn't moved to immodium yet. That always seems to worrk "too well" on him and then he gets the other problem. When he really got it the BRAT diet worked a bit, and I see you gave him rice which is good. Is he able to walk around at all? Mr. Ziggy always feels worse when he lays down too much, it makes his heartburn worse. I hope your husband feels better, yeah, the pump seems easier but they feel "tethered" to it. Hugs to you xoxoxoxo
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

mhf1986
Posts: 124
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Wed Dec 06, 2017 8:09 pm

WOOOO! CEA down to 30 after 2 rounds of the OX. Doc says keep going with the imodium as needed, keep an eye on the feet. He also gave permission to discontinue the last few days of the Xeloda if feet got really sore. Next CT scan in Jan 15th. It was a very long day, 10 hours, including driving time, dr time, and infusions. There was some mess up with the Zofran that didn't drip. But who cares, right?

Celebrating DH's birthday with lemon pound cake, presents, cards, and phone calls tonight.

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 1.6, ascites mostly gone

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Wed Dec 06, 2017 8:19 pm

Wow! MHF CEA down to 30! Reason to celebrate indeed! I hope he had a wonderful birthday and that upcoming scans will show regression. Maybe off the Xeloda his feet will improve! I’m thrilled for you guys!
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

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LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Mon Dec 11, 2017 9:45 pm

Wow Melissa, such good news! :)
Double reasons for celebration.
DH & I are enjoying your country this week, then back to France for Christmas.
Next CT-scan checkup for hubby is Jan 18. Around the same time as your DH (It is always scary.. :| :? )
I hope for you and everyone here - success with treatments and a Good Holiday!
Kind regards
Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

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LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Mon Jan 01, 2018 7:13 pm

Hi All,
A New Year - hoping for good news for all of us!
I believe we are a few who’s husbands have check-ups in January?! Keeping my fingers crossed for your DH tomorrow Mrs Zig.
Kind regards
Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mhf1986
Posts: 124
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Sun Jan 14, 2018 11:21 am

Sending out good vibes for all of us with DH January scans...DH has CT and blood work tomorrow. Review results with onc on Tuesday except he usually posts them online early. Hoping scan shows stability or decrease in mets because CEA has come down a bit since re-starting the OX.

However, If bilirubin is up, we expect treatment to be delayed a week again like happened in October. Except, the on-call onc in late December said not to delay even tho' bilirubin was up to 2.9; regular onc delayed when it reached 2.2.

May ask to reduce Xeloda further. DH is down to 2500 mg a day from 3000 mg but the feet are still a problem as is the diarrhea. Bought some Eucerin lotion and Imodium helps.

Hugs and Wishes and Prayers,

M
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: left hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, FOLFOX + Avastin; CEA down to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A; CEA down to 29 in 12/17
1/18: CAPOX caused bilirubin of 4.5/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin too high for irinitican, start Vectibex
6/18: biliubin down to 1.6, ascites mostly gone

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Sun Jan 14, 2018 12:25 pm

MHF I’m hoping for encouraging scans for hubby. Yes, it never hurts to ask for a reduction in dosage if they feel efficacy will be good and the symptoms are intolerable on it. Sometimes they start high see what is tolerated and then lower if they have to. There has to be a balance. All my love to you and sorry I’ve been MIA on this thread. xoxo
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

User avatar
LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Sun Jan 14, 2018 1:25 pm

Hi M and Mrs Zig
& everyone not so active in this thread.

Sorry Mrs Zig that Mr Zig’s CT was not what you hoped for. But I have seen/read your thread and as I understand it he is still in the trial. Hoping with all my heart that it will be effective!

M - whishing the best for your DHs checkup tomorrow. I’m glad you are pleast with his CEA. Hubby has taken his blood tests and his CEA is still OK, but it has never been high. However his CA19-9 (that was high from start) has on this test gone up a bit.. to above the ref value. That is adding a bit to the normal scanxiety.. CT scan for him is Jan 18. We get the result the same day.

All the best <3
Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Zig2017
Posts: 139
Joined: Tue Sep 26, 2017 12:26 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Zig2017 » Sun Jan 14, 2018 1:32 pm

Lena thank you. I hope hubby’s scan on the 18th shows regression! It is a rollercoaster with the tumor markers, I know. But scans can tell what’s going on. Sending love and hope, Mrs Z
Hubby stage 3C June 2017
MSS BRAF Mutation
18 LN positive
Adenosquamous CC
12 FOLFOX
Right Hemicolectomy
11/08/17 numerous nodules and lymph nodes throughout chest and abdomen. Stage IV.
11/2017 moved care to Sloan clinical trial for BRAF mutation
1/30/18 off clinical trial
2/2/18 one dose of Irinotecan
2/5/18 Hospitalization and hospice
2/16/18 came home from hospital and went home to his Lord at 1:10 pm

User avatar
LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Sun Jan 14, 2018 1:47 pm

Dear Mrs Z,
Thank you for kind words.
I just updated myself on your thread and want to send healing thoughts to You! It is hard and stressful at times being a caregiver. Please be kind to yourself.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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