I declined Oxaliplatin

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teachpdx
Posts: 621
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

I declined Oxaliplatin

Postby teachpdx » Tue May 22, 2018 4:49 pm

HI Folks,

I was reading a post on length of neuropathy after being on Oxaliplatin. I had two thoughts:

One - I feel bad for those with the long term side effects.
Two - I'm happy I declined taking it.

I had a difficult time with Xeloda and HFS. After my surgery and during "mop up" time I had a discussion with my Onc about including Oxaliplatin with the Xeloda. Given that it has a high risk of giving me permanent neuropathy and that I am a VERY tactile person I was very reluctant to include it. I had a complete response with Xeloda and radiation and felt that the inclusion of Oxaliplatin was going to add insult to injury. I declined the Oxaliplatin and was only able to get through 1&1/2 cycles of Xeloda post surgery before the side effects were too much and I quit that too.

I talked with my Onc after my decision to not include Oxaliplatin and he said he thought that I made the right decision and that the efficacy of Oxaliplatin with rectal cancer wasn't that strong anyway.

I have not done a ton of research regarding this, but I'm still cancer free and am happy with my decision. I am also Lynch positive - more apt to have a NEW cancer and less apt to have a metastatic cancer.

We are all different, but I just want to put this out there for those of you who may be questioning whether or not to take Oxaliplatin. We have the right to decline any treatment we think is not in our best interests.

Peace to all of you.

Kristi
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!

dauofcamom
Posts: 33
Joined: Sun Apr 22, 2018 7:11 pm

Re: I declined Oxaliplatin

Postby dauofcamom » Tue May 22, 2018 7:48 pm

Thank you for this. My mom is 75 and I worry about her handling the Oxi and am also starting to question the benefit of it for a person of her age vs the potential side effects and subsequent decline in quality of life. Also just found out her tumor is MSI so genetic testing is next. It’s my understanding if she has Lynch that Oxi isn’t effective anyway.

I’m trying to read and get as much quality info as possible so I can talk to my mom about her choices. My mom doesn’t understand “the new world” as she puts it and just wants the doctor to tell her what to do. While I like her Onc a lot, I want her to understand she has choices.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear

teachpdx
Posts: 621
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: I declined Oxaliplatin

Postby teachpdx » Tue May 22, 2018 9:26 pm

Glad to be of help. I guess then the efficacy is related to Lynch. I hate to see people suffer if it's not necessary.
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!

boxhill
Posts: 236
Joined: Fri Apr 06, 2018 11:40 am

Re: I declined Oxaliplatin

Postby boxhill » Wed May 23, 2018 8:26 am

According to everything I've read, Oxaliplatin DOES improve results in patients with dMMR, including those with Lynch and suspected Lynch.

Here's one example:
https://watermark.silverchair.com/djv43 ... 49462K7BuA

Can you point to info that says otherwise?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: I declined Oxaliplatin

Postby rockhound » Wed May 23, 2018 9:12 am

boxhill wrote:According to everything I've read, Oxaliplatin DOES improve results in patients with dMMR, including those with Lynch and suspected Lynch.

Here's one example:
https://watermark.silverchair.com/djv43 ... 49462K7BuA

Can you point to info that says otherwise?


Oxi is an immunomodulator so it does improve results for dMMR patients with Lynch, likely a bit at least. 5FU does not seem to be effective though- I went around with my oncologist a bit about this last summer and in the end, I ended up electing to do 6 cycles of Folfox, mainly for the oxi effect. That said, if I would have started having reactions/issues, we were prepared to just stop completely after whatever # of cycles, because of my Lynch status and the effect of the chemo, while positive, seems to pretty minimal (as stated in the original post). Gotta do what is best for you!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED

teachpdx
Posts: 621
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: I declined Oxaliplatin

Postby teachpdx » Wed May 23, 2018 11:44 pm

Boxhill, as I mentioned in my post I have not done research. My point in posting was to let people know that they can decline a treatment.
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!

dauofcamom
Posts: 33
Joined: Sun Apr 22, 2018 7:11 pm

Re: I declined Oxaliplatin

Postby dauofcamom » Thu May 24, 2018 6:41 am

boxhill wrote:According to everything I've read, Oxaliplatin DOES improve results in patients with dMMR, including those with Lynch and suspected Lynch.

Here's one example:
https://watermark.silverchair.com/djv43 ... 49462K7BuA

Can you point to info that says otherwise?


I am sorry. I’ve done so much reading I got confused. It’s the 5-FU that is questionable.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: I declined Oxaliplatin

Postby FindTheBestHelp » Mon Apr 15, 2019 6:22 am

dauofcamom wrote:Thank you for this. My mom is 75 and I worry about her handling the Oxi and am also starting to question the benefit of it for a person of her age vs the potential side effects and subsequent decline in quality of life. Also just found out her tumor is MSI so genetic testing is next. It’s my understanding if she has Lynch that Oxi isn’t effective anyway.

I’m trying to read and get as much quality info as possible so I can talk to my mom about her choices. My mom doesn’t understand “the new world” as she puts it and just wants the doctor to tell her what to do. While I like her Onc a lot, I want her to understand she has choices.


Did the genetic testing ever get done?

Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

Re: I declined Oxaliplatin

Postby Jolene » Mon Apr 15, 2019 9:11 am

I just started Xelox last week and had a brief discussion about the Xelox combo with my oncologist.

He did give me the option that I could go only with Xeloda and without Oxy if I wanted to but I decided to go all the way.

He put it an amusing layman terms for me such that that Xeloda is the mother and accounts for 70% of the work and Oxy is the Dad accounting for 30% of the overall effect. The kids can probably do quite well with just the mother alone but when combined with the Dad figure, it would be full force effect. On the other hand if the kids had only the father (oxy) and not the mother (xeloda), chances of doing well are as good as zero. :|

One can choose to go only with xeloda without oxy but never the other way round.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.


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