Maintenance Chemo questions

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Leighann Sturgin
Posts: 52
Joined: Sat Jan 25, 2014 9:35 am

Maintenance Chemo questions

Postby Leighann Sturgin » Thu Jan 11, 2018 5:37 pm

My brother is 46, Stage IV and he works for a company snaking sewers.
He is almost finished with 6 months of Fulfiri
Doctors say they want him to be on maintenance chemo indefinitely. I'm not sure the name of the drug.
If you're on maintenance chemo, what are you on? How long have you been on it? How do you feel? Are you working?
F 44 yo
3/04 dxd colon cancer stage IV (Lynch)
4/04 colectomy
chemo
8/04 hyserectomy
1/05 debulking, HIPEC, ileostomy
short bowel syndrome- TPN and IV fluid dependent
1/06 HIPEC
07 splenectomy
Vaccine trail
12 right nephrectomy
NED since 07
2015 Colondar 2.0 Miss May
2016 Kidney disease
2016 permanent left nephrostomy


The Kimberly Fund Director

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Maintenance Chemo questions

Postby Lee » Thu Jan 11, 2018 7:15 pm

Maybe 5FU? Or is he taking pills? If yes, hopefully someone will come along with the correct chemo. I got 5FU via a pump and port, butt I did not take it for maintenance. I did FOLFOX for 6 months only.

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 - 10 years and counting!

jep
Posts: 68
Joined: Sun Jun 11, 2017 7:45 pm

Re: Maintenance Chemo questions

Postby jep » Thu Jan 11, 2018 9:39 pm

Hello...my husband is 48 and stage 4....he is about to finish up 6 months of Folfox (next week!)....his onc wants him to do maintenance chemo for at least 1 year...maybe 2. He will take xeloda (pills) and also have 15 minute infusions of Avastin (once every 3 weeks, I believe). My understanding is that the side effects will be less harsh than Folfox...my husband has been working full time as a teacher while going through Folfox, so he's hoping that the maintenance will be a bit easier...he definitely won't need to miss work for treatments, as the 15 minute infusions are sooooo much quicker than the Folfox....hope this helps and prayers for your brother....
jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed

User avatar
O Stoma Mia
Posts: 1422
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Maintenance Chemo questions

Postby O Stoma Mia » Fri Jan 12, 2018 5:27 am

nobuttgirl wrote:My brother is 46, Stage IV and he works for a company snaking sewers.
He is almost finished with 6 months of Fulfiri
Doctors say they want him to be on maintenance chemo indefinitely. I'm not sure the name of the drug.
If you're on maintenance chemo, what are you on? How long have you been on it? How do you feel? Are you working?

I'm very sorry to hear about your brother. I know that you have been trying to help him and other family members for a long, long time. I think you might have written about this brother in your 2016 blog post, but in that post you mentioned Stage III, not Stage IV. Did he have a recurrence to mCRC Stage IV last year? So sad!

...Two days after making that comment my older brother was in the ER with an appendicitis and high fever. His appendix ruptured and he was septic. He had an emergency appendectomy and colon resection. After the surgery the surgeon informed my sister-in-law his colon didn’t look healthy and mentioned the possibility of Crohn’s disease. When the surgeon was informed of the Lynch Syndrome he became “more concerned.” We had to wait a few days for the pathology on the part of his colon that was removed. It was, of course, positive. He has stage 3 colon cancer. His head WAS in the sand. He never had a colonoscopy. I was SO angry and sad. I thought, maybe if I had hounded him more to get a colonoscopy; maybe I should’ve paid for it for him; I should’ve done more. I’m an advocate. I talk to people all the time about getting screened. I go to Washington DC to lobby congress for better screened guidelines and funding to educate the public on the importance of screening but I failed my own brother. He says it’s not my fault, that nobody could ever make him do anything he didn’t want to. He says he’s not going to ignore anything now. He’s going to fight so he can watch his son grow up. But it didn’t have to be this way. If you have family history of colon cancer, especially when people in your family have had it under the age of 50, you need to get a colonoscopy. Don’t think this can’t happen to you.

Ref: http://colonclub.com/family-ties/


Was it your older brother in this photo?

Image

Here is a list of treatments available for various stages of colorectal cancer. Maybe you can find the name of the proposed maintenance regimen here under the appropriate heading.

https://emedicine.medscape.com/article/2005487-overview
.
.
Last edited by O Stoma Mia on Sun Jan 14, 2018 1:53 am, edited 1 time in total.

henry123
Posts: 126
Joined: Sun Oct 08, 2017 3:25 am

Re: Maintenance Chemo questions

Postby henry123 » Fri Jan 12, 2018 2:13 pm

Hello nobuttgirl
What is his msi / mss status?
If msi-high then I am sure that you are aware that immunotherapy is a good option.
For my immunotherapy, Onco had indicated possibility of maintenance dose after a couple of years on 3mg/kg every 15 days. This was because Lynch can come back at quite a few other places.
Even he was unsure of protocol or dosage for immunotherapy as it is such an uncharted course of treatment.
46yo M
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
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

Leighann Sturgin
Posts: 52
Joined: Sat Jan 25, 2014 9:35 am

Re: Maintenance Chemo questions

Postby Leighann Sturgin » Sat Jan 13, 2018 11:50 pm

Yes, the brother with cancer is in the Steeler jersey in this picture. And yes he had a recurrence. The other two have been screened and are both clear.

He finished 6 months of Folfox, had one scan that was "iffy" second one 3 months later confirmed cancer was back on small intestine. He had a HIPEC in July.
His does NOT have Lynch. Which is CRAZY since our uncle was LYNCH (died), our aunt (currently has a 3rd primary cancer) is LYNCH. Dad is Lynch (polyps only) and I'm Lynch butt brother has tested negative. He is MSS. They aren't considering him for immunotherapy.

He is worried about not being able to work. His wife doesn't work. Right now he has insurance but his deductible is super high. I think it is $5000. And it seems like a lot isn't covered even after the $5000. He doesn't share a lot of details about that stuff with me but I know it's not a good situation.
F 44 yo
3/04 dxd colon cancer stage IV (Lynch)
4/04 colectomy
chemo
8/04 hyserectomy
1/05 debulking, HIPEC, ileostomy
short bowel syndrome- TPN and IV fluid dependent
1/06 HIPEC
07 splenectomy
Vaccine trail
12 right nephrectomy
NED since 07
2015 Colondar 2.0 Miss May
2016 Kidney disease
2016 permanent left nephrostomy


The Kimberly Fund Director

e_enyedy
Posts: 14
Joined: Sat Nov 25, 2017 5:28 pm

Re: Maintenance Chemo questions

Postby e_enyedy » Sun Jan 14, 2018 7:08 pm

I did 8 3-weekly sessions of Xelox+Avastin, starting May 2016, ending in October. The end of cycle PET/CAT scan (done in the same month) showed NED. Since then I am on a "maintenance treatment" of Capecitabine (Xeloda = 5FU) 2 weeks on/ 1 week off schedule with an Avastin infusion every 3 weeks, at the start of the cycle. The plan is to keep me on this schedule at least for a couple of years, assuming nothing changes (still NED)
I have a friend with breast cancer, she has been on an oral "maintenance treatment" for the past 9 years.
I might add the fortunately I am one of the very lucky ones, with no side effects from the chemo.

All the best,

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

e_enyedy
Posts: 14
Joined: Sat Nov 25, 2017 5:28 pm

Re: Maintenance Chemo questions

Postby e_enyedy » Sun Jan 14, 2018 7:11 pm

Forgot to add:
I am fully active, working (teaching at a University) full time Monday to Friday, except every third Friday when I have the Avastin Infusion

All the best,

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

rp1954
Posts: 1363
Joined: Mon Jun 13, 2011 1:13 am

Re: Maintenance Chemo questions

Postby rp1954 » Sun Jan 14, 2018 8:24 pm

nobuttgirl wrote:....what are you on? How long have you been on it? How do you feel? Are you working?

UFT or generic (Xeloda is the oral 5FU available in the US) + celecoxib + megavitamin D3 +PSK + WGP glucan + IV vitamin C, plus other supplements.
over 7.5 years
Fine, better than before the cancer, some chemo brain
Part time, some construction, and family responsibilities
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

User avatar
Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Maintenance Chemo questions

Postby Robino1 » Sun Jan 14, 2018 8:41 pm

e_enyedy wrote:I did 8 3-weekly sessions of Xelox+Avastin, starting May 2016, ending in October. The end of cycle PET/CAT scan (done in the same month) showed NED. Since then I am on a "maintenance treatment" of Capecitabine (Xeloda = 5FU) 2 weeks on/ 1 week off schedule with an Avastin infusion every 3 weeks, at the start of the cycle. The plan is to keep me on this schedule at least for a couple of years, assuming nothing changes (still NED)
I have a friend with breast cancer, she has been on an oral "maintenance treatment" for the past 9 years.
I might add the fortunately I am one of the very lucky ones, with no side effects from the chemo.

All the best,

E


Thank you for your story. It gives me hope. :)
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


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