Stage lllB T4pn1

justTam

Hello!

I was diagnosed with Stage 3b CC- 1 lymph node affected, 1.9 cm tumor removed with all clean margins. I have completed 6 cycles of Folfox and I can no longer deal w/the side effects. Up until yesterday docs have reduced dosage and removed 3 medications leaving me with only 5 FU. To me this doesn’t make a bit of sense.
Has anyone heard of this or been through similar situation. I also started my treatments exactly 6 wks after surgery.

Thank you in advance for any advice, similar stores/outcomes etc.

Tammy

bibliophile

So sorry that you are having such a tough time with the chemo. Everyone responds differently. I tolerated the oxaliplatin, but most recently they added irinotecan to my FOLFOX(IRI) and that took me out pretty hard. At least you got through 6 cycles. Here's to hoping that will be sufficient and you will be good! A smaller tumor, clean margins and only 1 lymph node all sound positive!

justTam

https://csn.cancer.org/discussion/comment/1726283#Comment_1726283

Thank you so very much for your response. The doctor has removed all other meds except the 5 FU as a standalone. I haven’t read much that states the efficacy by itself is only 10%-15% protection. Not sure it’s even worth it. I feel the health of my organs are suffering from this treatment. It’s hard to believe that a patient that currently has a tumor and presence of cancer receives the same treatment as a patient that is NED. It’s just a standard treatment and not tailored to each individual.
May I ask how you are and when you were diagnosed? I’m very happy to have connected with others. It’s very hard for people to understand when not faced with these issues. Thank you for listening and responding. It means a lot.

bibliophile

Absolutely you can ask! I am happy to share. I, too, have greatly benefited from talking to others who "get it". My story is similar to yours in many ways, but a little different. I was diagnosed as 46yo-f in July 2023 with Stage III T4bN1b colon cancer after being misdiagnosed for a long time with diverticulitis. They did surgery as kind of a last resort when nothing else was working and found that the "abscess" was from the tumor. I had 3 lymph nodes affected, my tumor was just over 5 centimeters, and I also have perineural involvement. So I had surgery first (like you) and had clean margins, but because of the risk factors for microscopic cells left and the higher risk characteristics of my original, along with some very small indeterminate lung nodules, they also recommended prophylactic chemo for me even though there was no evidence of disease at the time. I did eight cycles of Capeox (capecitabine is the oral form of the 5-FU) starting 5 weeks after surgery and then had a great year of break from treatment. One of those pesky "indeterminate" lung nodules ended up being malignant, though, so in hindsight, the chemo probably helped keep it small and they were able to remove it with surgery with clean margins in March of last year. I was hoping that would be the end of it, but at my 3 month scans, they found spread to my abdomen in multiple places so I did 8 rounds of FOLFOXIRI and had a huge surgery in December at Mayo in Rochester where they removed too many things 🤣 and found malignancy in my ovary, two more places in my colon, and in the peritoneum (lining of the abdominal organs). They also got all visible disease this time, so I am getting a break from treatment and hopefully no recurrences any time soon. All that is a long explanation of why patients who are NED sometimes get the same treatment as patients with a current tumor. In my case, it was a good thing because that original 6 months of NED treatment probably kept things from exploding out of control before we knew it was there. I'm not trying to scare you, though, because from what you have told me, my original cancer had LOTS more risk factors of spread than yours does. So I know the chemo stinks, but your doctor is probably just trying to make sure that there is nothing microscopic left over that could cause problems. I would love to hear your story if you want to share, and I love just chatting with people, so I would like to keep in touch if you would. 😊

justTam

Wow! You have been through so much. You are an extremely strong and resilient woman.
I do have 3 tiny nonspecific pulmonary lung nodules that doctor is not concerned about but still bothersome to me.
The chemo has been elevating my liver and kidney decreasing my kidney functions. Last treatment my hamstrings and calves stiffened terribly. My heart has been racing since last treatment as well- they had me in for EKG which was ok but upon reading in portal it said abnormal. Sometimes I don’t know what think. But I certainly am going to cease treatment because it’s doing more harm to me at this time. I’m scared, but also feel I’m making the right decision.
I have been in my head these last few days and it’s been hard. I’m hoping I can continue my positive attitude, but scanxieity is super hard for me.
I can’t imagine how incredibly tough your journey has been. So many things seem lessly ruled in my favor. I can only pray it continues.

How are you today? Where do you stand with treatment currently?

bibliophile

Yeah, I get the scanxiety. It is real! And I'm sorry you have had those sideffects. All we can do is make the best decision we can with the information we know at the time and what seems right, but the constant second-guessing in my head! 🤣 (I know that's not just me.)

I'm really good right now. I feel good other than the neuropathy and don't have to do any treatment right now. Just scans and bloodwork every 3 months. My next one is end of April. I am trying to find a new normal and figure out what to do now that I have energy again and am in a phase of life where I also have more free time than ever before. 😊

Good talking to you! Keep in touch! And I get on the Chatroom a couple times a week, too. That's a good place to just talk to other people. Sometimes about cancer, sometimes just about nothing! You should join!

AKRICH

https://csn.cancer.org/discussion/comment/1726322#Comment_1726322

I understand the frustration. Yes the treatments are somewhat standardized, but the "tweaks" are to help each individual. I have had Folfox and now due to the advancement to palliative chemo I am on Folfuri with bevasizamab (Spelling). I have neropathy in hands and feet as well as fatigue. Treatmnet for varios cancers are developing and some are more individual than others. I have had second opinions as well as molecular studies for may particular cancer (SRCC) and all agree that I am getting the best treatment available.

My oncologist spends a great deal of time with me every two weeks discussing my case. Up to about an hour. I feel very fortunate for her answers to my numerous questions about cancer treatment in general as well as my case in particular.

Best of luck to you.