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Refusing folfox treatment after chemoradiation

Posted by girafe @girafe, Jul 24 6:26pm

Does anyone have refused folfox treatment after chemo radiation?
Then what happened?
I have T3N1 rectal cancer.
Thank you so much

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girafe | @girafe | Jul 27 11:45am
In reply to @leeb123 "@girafe treatments ended in the first week of January, then surgery end of March. The wait..." + (show)
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@girafe treatments ended in the first week of January, then surgery end of March.
The wait was due to radiation still working and being compromised.
I went back to work May 15.
Overall im ok, I still get fatigue but try to push through those moments.
Focused on what I can versus can't.
It's a journey for sure!
Hope you're doing well.

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@leeb123
Thank you so much, I so appreciate you sharing.
Are your red and white blood cells and platelets normal now?
So happy for you that you are doing good now

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premi | @premi | Jul 27 11:51am
In reply to @girafe "@premi Thank you so much. For me the oncologist want to do the Folfox chemo before..." + (show)
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@premi
Thank you so much. For me the oncologist want to do the Folfox chemo before the surgery. Apparently it may avoid the surgery, yet not one hundred % sure.
So glad you are well after 8 years.

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@girafe
You have done chemo radiation .Why not go for surgery now.Even if they say you can escape surgery,the statistics doesn’t support that especially for stage 3B.
Like me if you are lucky and the nodes come negative,you are escaping add on chemo and you escape long term bugbears.Please discuss with your doctor.I discussed with my surgeon and pathologist and then took a call on No chemo.

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janetgraham | @janetgraham | Jul 27 1:01pm
In reply to @115 "@girafe I finished 6 wks of radiation and Xeludo on June 16th. I had surgery to..." + (show)
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@girafe I finished 6 wks of radiation and Xeludo on June 16th. I had surgery to remove a small part of a mass that was left over from a colonoscopy that couldn’t be removed. I was told most people don’t have surgery first before starting treatment so it was difficult in the end. I’m still recovering but am much better now. Folfox was suggested as a 4 month follow up to the treatment I had . I really don’t want it. I see my oncologist on Tuesday to review the CT scan and MRI and I’m hoping they’re clear.

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@115
Sometimes the recommended treatment is hard to deal with.
Don’t ever stop thinking for yourself and doing your own research.

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janetgraham | @janetgraham | Jul 27 1:08pm
In reply to @girafe "Thank you for sharing. I am just debating, I wonder if I really need it. I..." + (show)
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Thank you for sharing.
I am just debating, I wonder if I really need it. I had chemo radiation treatment for 5 weeks. I am on a break and the next step is Folfox if I decide to go for it. The chemo is supposed to kill the cancer cell who may have escaped yet it is attacking the good cells and weakening the immune system.
I have been so amazingly lucky in my life to never have been to doctors except when I was a kid. My body is my temple and has been very good to me up to my 64th year.
I am curious about other people experiences. It would be very valuable to me to hear about people stories. Thank you so much. Hope you will be fine.

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@girafe
I had a colon resection in January of 2025.
Chose to do periodic bloodwork and ct scans.
For me, I could not rationalize doing chemo in a way that sounded like“prevention” when all scans and bloodwork were good and have continued to be.
We all have to be comfortable with our own decisions and I know that.
Don’t ever stop thinking for yourself.
I know too many people that have suffered horribly with treatments.
I love and appreciate every single day!

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Lee | @leeb123 | Jul 27 1:40pm
In reply to @girafe "@leeb123 Thank you so much, I so appreciate you sharing. Are your red and white blood..." + (show)
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@leeb123
Thank you so much, I so appreciate you sharing.
Are your red and white blood cells and platelets normal now?
So happy for you that you are doing good now

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@girafe I have my first follow up with my oncologist this Friday.
I'll let you know!
I'm good no matter what!
Glad to be alive!

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nycmusic | @nycmusic | Jul 28 2:44pm
In reply to @dselland "I'm stage 3A. I had surgery to remove the tumor in my hepatic flexure. I started..." + (show)
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I'm stage 3A. I had surgery to remove the tumor in my hepatic flexure. I started Folfox about a month after surgery. I did 2 of 6-12 rounds and decided to quit because it was causing severe stomach pain and neurological symptoms in my arms and legs. I'm now 70 and maybe cancer will be my cause of death but in the meantime, I'm back living life to the fullest extent possible instead of being medically tortured. I'm currently one year ned.

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@dselland amazing that you are NED after just 2 difficult treatments…way to go ! I too am older and put the highest value on quality of life for my remaining years.

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115 | @115 | Jul 28 3:38pm
In reply to @girafe "@115 Thank you. Please let us know what the oncologist says Hope for the best for..." + (show)
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@115
Thank you. Please let us know what the oncologist says
Hope for the best for you.
Thank you so much.

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@girafe well I saw my oncologist today and my scans were clear I’m in remission now. I see the surgeon on Thursday to have a scope done hopefully he won’t see anything either. But the thing is they’re wanting me to choose more chemo to prevent cancer in the future. Without it I have a 72% chance of it not coming back in 3yrs. My diagnosis is a T13X it seems none of the studies done were for someone in my situation. I’ll be 71 yrs old and I’m not sure if I want to go through chemo again.

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tamster1208 | @tamster1208 | Jul 28 5:37pm
In reply to @girafe "Thank you for sharing. I am just debating, I wonder if I really need it. I..." + (show)
Profile picture for girafe @girafe

Thank you for sharing.
I am just debating, I wonder if I really need it. I had chemo radiation treatment for 5 weeks. I am on a break and the next step is Folfox if I decide to go for it. The chemo is supposed to kill the cancer cell who may have escaped yet it is attacking the good cells and weakening the immune system.
I have been so amazingly lucky in my life to never have been to doctors except when I was a kid. My body is my temple and has been very good to me up to my 64th year.
I am curious about other people experiences. It would be very valuable to me to hear about people stories. Thank you so much. Hope you will be fine.

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@girafe It is wonderful that your life has been amazingly lucky. Are you really willing to take a chance and not do folfox? I was diagnosed stage 3 rectal cancer. After chemo radiation it looked like my 3 cm tumor was gone. The folfox continues the fight. Yes, there are side effects but please do what you can to make sure your cancer is gone.

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isadora2021 | @isadora2021 | Jul 29 5:35am
In reply to @janetgraham "@girafe I had a colon resection in January of 2025. Chose to do periodic bloodwork and..." + (show)
Profile picture for janetgraham @janetgraham

@girafe
I had a colon resection in January of 2025.
Chose to do periodic bloodwork and ct scans.
For me, I could not rationalize doing chemo in a way that sounded like“prevention” when all scans and bloodwork were good and have continued to be.
We all have to be comfortable with our own decisions and I know that.
Don’t ever stop thinking for yourself.
I know too many people that have suffered horribly with treatments.
I love and appreciate every single day!

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@janetgraham You are so right that each person must decide to do - without feeling pressured to choose one thing over the other - what they wish to do.

I didn’t do chemoradiation which I gather is a targeted treatment on tumours. Instead I did major surgery including a colon resection. I did then agree with my oncologist’s recommendation to do 6 months of fortnightly Folfiri and Avastin with thev48 hour take home bottle to mop up any undetected cancer cells not showing up on my PET-CT scans (with contrast).

I chose Folfiri over Folfox - less chance of neuropathy. It wasn’t pleasant at all, some very bad days, but generally ok for me. Everyone experiences chemo differently.

My oncologist wanted me to go onto maintenance chemo after that. I meant to have a very short break as I had had enough and couldn’t face any more treatment immediately. Instead I didn’t go back on treatment and when I got cold feet and queried going back on the window had closed. I’ve been NED since mid 2022 and in August it will be 5 years from diagnosis. I have had regular surveillance blood tests and PET-CT scans (with contrast) since 2022. They started off 3 monthly then 6 monthly. Next year if my next scans and blood tests are still good I’ll go to 12 monthly scans with 6 monthly bloods.

@girafe It’s difficult deciding what to do and you can only do what you think is best for you whatever the end result is ❤️‍🩹

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janetgraham | @janetgraham | Jul 29 6:20am

Sounds like we have had very similar experiences!
I had a colon resection as well.
January 2025.
I am down to two more 6 month Bloodwork and scan.
I chose no other treatment. I could not think of it after not eating much for weeks before surgery. My choice.
Still have eating challenges and watch my diet.
Over all I am doing well, but I’m very realistic, too.
Day at a time and appreciate each one’s
Nice to meet you!

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