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I declined Oxaliplatin

Posted: Tue May 22, 2018 4:49 pm
by teachpdx
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

Re: I declined Oxaliplatin

Posted: Tue May 22, 2018 7:48 pm
by dauofcamom
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.

Re: I declined Oxaliplatin

Posted: Tue May 22, 2018 9:26 pm
by teachpdx
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.

Re: I declined Oxaliplatin

Posted: Wed May 23, 2018 8:26 am
by boxhill
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?

Re: I declined Oxaliplatin

Posted: Wed May 23, 2018 9:12 am
by rockhound
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!

Re: I declined Oxaliplatin

Posted: Wed May 23, 2018 11:44 pm
by teachpdx
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.

Re: I declined Oxaliplatin

Posted: Thu May 24, 2018 6:41 am
by dauofcamom
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.

Re: I declined Oxaliplatin

Posted: Mon Apr 15, 2019 6:22 am
by FindTheBestHelp
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?

Re: I declined Oxaliplatin

Posted: Mon Apr 15, 2019 9:11 am
by Jolene
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.