Dropping oxi after 4 treatments...any insights?

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LabLover
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Dropping oxi after 4 treatments...any insights?

Postby LabLover » Fri Jan 24, 2014 10:05 pm

I just completed my fourth round of oxi (I'm scheduled for a total of 6). I've had a reaction after treatments 2,3,and 4. About 20 minutes after disconnect I get extreme shortness of breath. I sound like a seal kind of like when kids have croup. It's always happen while still at cancer center which is good. The oncologist has increased my infusion time, pumped me with Benadryl and this last time another steroid to take night before and morning of infusion to no avail. Still having reaction. Prior to this infusion my oncology PA mentioned dropping the oxi if I have another reaction and just continuing with xeloda for last two rounds. This sounds like heaven to me. I have little to no side effects with xeloda and would feel much more myself.

However a part of me is concerned about long term prognosis if I drop the oxi 2 cycles early especially since it was only 6 rounds to begin with. I was suspected stage 3 rectal cancer (3 plump LN). Surgery after 6 weeks of chemo/rad produced complete pathological response. No cancer in tumor and none on lymph nodes (26 tested). We will never know if those 3 were cancer or inflamed for other reasons.

So long story, simple question. Based on my history would you be comfortable dropping oxi after 4 rounds?

Eta: I'm lynch positive if that makes a difference in your response.

teachpdx
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Location: Portland, OR

Re: Dropping oxi after 4 treatments...any insights?

Postby teachpdx » Sat Jan 25, 2014 1:02 am

HI,

We're in about he exact same position. I'm lynch and also had a complete response. I only completed 1 1/2 rounds of Xeloda post surg because of HFS and declined Oxi because of the possible side effects from neuropathy. I think it's worth a crap shoot to have the next ten (I hope) years feeling relatively well than go through the rest of my life with numb feet & hands.

So to answer your question - I never even did the first 4 rounds of oxi and I'm satisfied with my decision.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

pfCml73183
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Re: Dropping oxi after 4 treatments...any insights?

Postby pfCml73183 » Sat Jan 25, 2014 1:19 am

I believe my husband had 8 or 10 rounds with oxi and he now has severe neuropathy.
The doctor then stopped it and told us it was making a less then a 10 percent difference in cure anyway.
He is now 53 and miserable. He fears he will be in a wheelchair soon.
He also had a bit of the breathing trouble too.
He would get upset and cry and then the tears burned terribly.
I am pretty sure we would not reccomend this to anyone.

.
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

llupp
Posts: 75
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Re: Dropping oxi after 4 treatments...any insights?

Postby llupp » Sat Jan 25, 2014 2:15 am

My husband has complete 5 rounds with 3 to go. He is starting to get shooting pain in his feet and hands he saids it feels like pins and needles all the time. On Tues we will be questioning the onco on finishing the oxi. He is also on 5-fu. I am really worried about him at this point. He is in such pain all the time. Any thoughts on this???? Hubby does not want to stop because he is afraid it will mean he has a greater chance of reoccurrence.
Caregiver of hubby
Rectal cancer 4/13
C-scan, Pet-scan 4/13
Kidney cancer 4/13
Port 4/13
Chemo and Radiation 6 weeks
Surgery 8/19

Removed left kidney and rectal tumor temp ilestomy
hospital dehydration and partial stoma block
Chemo to start around 10/15
Ned 03/25/14
Still Ned 03/10/16 Woo Hoo

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: Dropping oxi after 4 treatments...any insights?

Postby O Stoma Mia » Sat Jan 25, 2014 3:46 am

LabLover wrote:...So long story, simple question. Based on my history would you be comfortable dropping oxi after 4 rounds?...

LabLover - Yes, I would be comfortable dropping oxi after 4 rounds. In fact, that's exactly what I did last year, and I certainly have no regrets.

stupidcancer
Posts: 72
Joined: Sun Nov 17, 2013 5:48 pm

Re: Dropping oxi after 4 treatments...any insights?

Postby stupidcancer » Sat Jan 25, 2014 4:41 am

Good morning,
I had two full rounds with Oxi, they dropped it out of the 3rd because of neuropathy issues but reintroduced it into the 4th at a lower rate. Took it back out for the 5th and 6th (which was a little bit of heaven) but talked me into taking a smaller dose on my 7th round this past Thursday. Now my hands are so bad I can barely type, the least little cold thing I touch is excruciating and my feet barely work. My husband said no more after the second but I wanted to keep trying to be as aggressive as possible and now I'm done. It is ultimately your choice and mine if we want the long term side effects. I've still got 5 more to go and I'm going to do them without the Oxi and pray for the best.
As long as you're doing everything the best you can, you're a fighter and will get through this.
Best wishes, hearty hugs, and God bless.
Cora
47 yo f
Resection Sept '13
Stage 3B cc
12X Folfux 10-31-13
Red Oxi at 3 out at 8 severe neuropathy
Brain MRI 2-14-14 for vision,stuttering issues Neurologist said small stroke
3-20-14 Dr stopped chemo due to health issues
03-24-14 Clear colonoscopy!
05-06-14 Clear CT NED!!!!
11-07-14 Clear CT still NED :)
11-11-14 Clear colonoscopy
6-5-15 2 spots on CT, PET and biopsy scheduled
6-11-15 PET scan 3 mets
6-17-15 needle biopsy pos for cancer
6-24-15 met with surgeon ref to St. Louis for HIPEC

lorrainem
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Re: Dropping oxi after 4 treatments...any insights?

Postby lorrainem » Sat Jan 25, 2014 8:30 am

I dropped after four treatments, stage II colorectal, complete chemo/rad/surgical response. Clear margins. I have permanent side effects, but I have no regrets.
The big question for me was could I look myself in the mirror and know that I did all I could. After discussing with husband we decided to go with dropping adjuvent Folfox, the side effects some of which you described were bad.
I have been NED since surgery 2008. Remember, each of us is different with different factors to consider…your mileage may vary!
Best wishes in making this difficult decision,
Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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Nickmark59
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Re: Dropping oxi after 4 treatments...any insights?

Postby Nickmark59 » Sat Jan 25, 2014 10:16 am

I had to drop it after 2 rounds due to bad tingling still have it ocassioanally went to folfox with avastin
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

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chrissyrice
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Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Dropping oxi after 4 treatments...any insights?

Postby chrissyrice » Sat Jan 25, 2014 2:51 pm

Same here had to drop the oxi.... as the NP said "chemo is suppose to treat your cancer, not kill you" !

Make sure you get lots of fluids... it's no cake walk without the oxi, either.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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ziggymonster
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Location: California

Re: Dropping oxi after 4 treatments...any insights?

Postby ziggymonster » Sun Jan 26, 2014 6:53 pm

I dropped the oxi after 7 treatments.....finished with 5 FU in July, and I still have moderate to severe neuropathy in hands and feet...it started to improve last month but then got worse!! Nasty stuff.
DX advanced prostate cancer 2002
2014 still fighting mPca , failed surgery, radiation, hormone
DX Stage IIIa Rectal Cancer 12/12 1 of 12 nodes +
LAR permanent colostomy 1/13
Folfox 2/13 - 7/13 clear CT CEA 1.2
7/14 liver met chemo the resect in Oct
6/15 2 pos lung mets watching for now

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: Dropping oxi after 4 treatments...any insights?

Postby LabLover » Sun Jan 26, 2014 7:30 pm

It's a done deal. Just heard from my oncologist. Dropping oxi. Continuing 2 more rounds of xeloda only. Thanks for all the feedback. I'm actually quite relieved to be done with oxi.

LKGower
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Location: Sydney, Australia

Re: Dropping oxi after 4 treatments...any insights?

Postby LKGower » Tue Jan 28, 2014 5:30 am

Hi,

I just had my 5th round of oxali today, I tell you I am definitely feeling it. The side effects are starting to linger (more so cold sensitivity). I have one more round to go and I am so happy but disappointed because it hasn't helped as much as we wanted! My cea is still in the hundreds.. It's coming down but not enough to be considered for surgery :/

I also am like you, I get reactions during/just after infusion. Today was the first day I didn't woo! I'm not sure if that was due to dose reduction due to low platelets. 2nd round of oxali I had the breathing problems.. Every cycle after that I showed signs of reactions but they gave me the drugs to reverse it. So they have been giving it to me as a pre-med and during infusion if need be.

Glad to hear you're back to xeloda, it is a very tolerable drug. Well for some of us :)

All the best!

Lisa
Dx 10/12 @ age 28 Stg. IV CRC spread to both ovaries, bladder and liver
Surgery 11/12 - 8/16 LN positive
9/13 Liver resection & RFA - 1/1 LN positive
10/13 boo its back already! Back to chemo

Nicolouna
Posts: 39
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Re: Dropping oxi after 4 treatments...any insights?

Postby Nicolouna » Wed Jan 29, 2014 5:58 pm

I had what looked like an allergic reaction to oxaliplatin after the 4th round - abdominal pain, hives and elevated liver enzymes. My oncologist decided to cut out the oxi for the 5th round and then, being not totally convinced that my symptoms were due to the oxaliplatin (there was a possibility I had food poisoning from eating old smoked salmon the night before), he gave me a test dose of oxaliplatin on my 6th round. Following that, my liver enzymes were normal so today on my 7th round, he gave me 50% of the dose of oxaliplatin. We will progress to 75 and 100% depending on what my bloods show.
Dx @ 27yo, female w colon cancer (T4N0M0)
Aug 2013: R hemicolectomy
FOLFOX: Oct 2013-April 2014, NED
May 2016: had a baby ❤️
June 2017: L ovary met, surgical removal
July 2017: pancreatic met
Aug 2017: FOLFIRI
Dec 2017: Whipple’s. 1/36 nodes+
May 2018: 12 FOLFIRI done, NED
Sept 2018: abnormal cyst R ovary - surgery, no cancer (false alarm)
Dec 2019: abdo wall met, resected, clear margins
Oct 2020: new primary colon ca (T4N0), partial colectomy
Nov 2020: XELOX reaction, converted to FOLFOX

Roosky
Posts: 1
Joined: Tue Feb 04, 2014 10:41 pm

Re: Dropping oxi after 4 treatments...any insights?

Postby Roosky » Tue Feb 04, 2014 11:04 pm

Hi, I was just diagnosed dec. 23 2013 , had surgery to remove tumor from colon and 1 out of 17 lymph nodes is affected. I start Folfox in two days. What is the breathing problem side effect? What did you do for it? I think that might be the one side effect that I might freak out about.

LabLover
Posts: 65
Joined: Tue Sep 24, 2013 7:50 pm

Re: Dropping oxi after 4 treatments...any insights?

Postby LabLover » Thu Feb 06, 2014 12:41 pm

Roosky wrote:Hi, I was just diagnosed dec. 23 2013 , had surgery to remove tumor from colon and 1 out of 17 lymph nodes is affected. I start Folfox in two days. What is the breathing problem side effect? What did you do for it? I think that might be the one side effect that I might freak out about.

About 20 minutes after my infusion was complete and I went to leave the center, I would get severe shortness of breath. Essentially I sounded like a seal or a baby with croup. I could breathe but couldn't get the air to my lungs.

After the first reaction, they lengthened the infusion from 2 hrs to 3 hrs and have me Benadryl prior to infusion. That protocol didn't help. So oncologist added a rx taken night prior and morning of infusion and kept the Benadryl and longer infusion time. Still didn't help, so oxi was dropped.

ETA: I don't think that's a normal side effect but more like an allergic reaction, but I'm not sure.


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