chemo for lifers - taking a break

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midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

chemo for lifers - taking a break

Postby midlifemom » Wed Oct 21, 2015 11:56 am

Just looking for others' stories on taking a chemo break, for how long, was the first treatment after break harder than normal, and whether the break resulted in growth.

Looking to take my first break after 9 continuous months of folfiri.
Not a big break, just postponing one treatment by one week.

Thanks. Hope everyone is having a peaceful day.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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Crystald
Posts: 142
Joined: Thu Feb 26, 2015 1:50 pm

Re: chemo for lifers - taking a break

Postby Crystald » Wed Oct 21, 2015 12:22 pm

I have had a few chemo breaks.

During folfox cycle, each time it was only for one week with no discernible increase in CEA, actually, checking my "book" CEA went down even with the week break.

Different story with Irinotecan. One week break CEA went up from 180 to 289. Then another emergency break, my DH was admitted to ICU with seizures, that break CEA climbed to 535. After treatment was established on a 2 week cycle it went down and for the next 4 treatments bounced between 415 - 418.

My biggest treatment gap was a month and CEA rocketed to 555.

My non-professional opinion is that a week off doesn't hurt as long as it is not done say like every other cycle. I believe that for folks like me it is essential to maintain treatment regularly.

That being said, I absolutely detest infusion, but I have no other options.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: chemo for lifers - taking a break

Postby jdepp » Wed Oct 21, 2015 1:09 pm

midlifemom wrote:Looking to take my first break after 9 continuous months of folfiri.
Not a big break, just postponing one treatment by one week.


I do that every time. I talked my onc. into switching to an every-three-weeks infusion schedule, and it's made life a lot more tolerable & worth living.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Re: chemo for lifers - taking a break

Postby sjring » Wed Oct 21, 2015 2:19 pm

I think it's important to remember that everyone will respond differently.

That said, when I was on FOLFOX initially I would take an extra week between treatments once in every 6 treatment cycle. Whether it was for a holiday (I didn't want to dose over Christmas) or a trip. I didn't have any discernable change and it was nice to have a slight extra improvement in the cold insensitivity. When I moved to maintenance chemo (Avastin & 5-FU), sill on an every other week basis I would also take an occasional extra week off. I would notice a slight CEA increase sometimes but it was always explained to me that it was all within the tolerance of the testing equipment.

It was when we went to a more formal every three week treatment schedule that the cancer started to spread. I went back on the Oxili for 4 treatments. The first was the most nerve wracking, had a major anxiety attack for that one. Had more or less stability on the scan after those 4 treatments but I had picked up a nasty cold and bronchitis for several weeks, so we went back to every-other week maintenance to give me a chance to beat the bronchitis (finally got a referral to a pulmonologist and I think we are finally starting to make some headway). I'll scan again just before Thanksgiving. Taking an extra week off the week after next to take a trip with my DD, and taking Thanksgiving week off as well. We'll see what happens.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.

daniel.qin
Posts: 25
Joined: Tue May 26, 2015 9:07 pm
Location: Sunnyvale CA

Re: chemo for lifers - taking a break

Postby daniel.qin » Wed Oct 21, 2015 5:12 pm

I have had two month break. I tried the Chinese herb in the break. Then CT showed progressing. Maybe it is too long.
39 years old Male
4/12 - colon surgery stage III
12/12 - 12 round FOLFOX
5/14 - met to spleen, colon surgery, spleen remove, radiation, XELOX
KRAS-mutated, BRAF wild type, MSI-stable.
11/14 - Abdomen wall met, surgery, FOLFIRI+Avastin
3/15 - CT, NED
Chinese herbs medicine
5/15 - CT, progressing-FOLFIRI+Avastin
6/15 - cannabis oil supplements
8/15 - Xilonix fail
10/15 - RRX 001

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: chemo for lifers - taking a break

Postby midlifemom » Thu Oct 22, 2015 5:56 am

Thanks all for their input.
Hopefully one day we can all take a permanent break from this crap.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: chemo for lifers - taking a break

Postby Ajane » Wed Nov 11, 2015 5:36 pm

Hope so! Pray so!
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

stu
Posts: 1210
Joined: Sat Aug 17, 2013 5:46 pm

Re: chemo for lifers - taking a break

Postby stu » Wed Nov 11, 2015 6:05 pm

Hi.
When my mum was first diagnosed as stage 4 over six years ago her oncologist told us that we would see a totally different treatment model in American. In the UK they will see how the tumours behave after a course of treatment with treatment recommencing once tumours start to grow. He said some tumours get to a certain size and stay static for a few years. They are monitored until they grow. However if you experience continual growth then they will give chemo for life. My mum had 6 cycles one year, surgery. Recurrence then six cycles the second year. Successful resection has allowed 4 and 1/2 years treatment free. I will update more in a few weeks but the approaches are so different. He is now working in a research facility in ...America and I often wonder if he has changed his approach or if he would still practise the same. My mum could just not take a lot of chemo so the blessing has been her quality of life has been really good. Honestly a week in my mind is just a wee delay. Enjoy.
Stu
Last edited by stu on Wed Nov 11, 2015 6:33 pm, edited 1 time in total.
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: chemo for lifers - taking a break

Postby midlifemom » Wed Nov 11, 2015 6:33 pm

So, today was my first chemo after my one week delay.
CEA rose from 5.6 to 6.0. Prior to this it had been slowly dropping.
Significant?
Ct is next week. Due to CEA increase I'm now having my first scanxiety.

But the mini vacation was great!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

stu
Posts: 1210
Joined: Sat Aug 17, 2013 5:46 pm

Re: chemo for lifers - taking a break

Postby stu » Wed Nov 11, 2015 6:39 pm

Glad you enjoyed the break. .4 is not too big a jump and hopefully it will be back to normal after chemo gets going. It will give you more insight to see if this is something you can do again in the future. Worth trying. So pleased to enjoyed it. We felt even a week strengthen my mum.
Take care
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: chemo for lifers - taking a break

Postby NateA » Thu Nov 12, 2015 4:39 pm

I will not take a break unless I am NED. Then I'll consider it. On 3 week infusion cycle of Avastin/xeloda, so could be worse..
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4


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