How long can chemo continue?

hopefuldreams

Hi everyone,

I am new here but been dealing with stage 4 rectal cancer that metastasized to my liver pretty bad with a few nodules in my lungs. I am fairly young at 29 and this has been my first real experience with healthcare.

I have been in treatment for 9 months and have had good results so far with liver lesions shrinking by ~50%. I was wondering if anyone has experience with how many rounds of chemo people typically see. I just finished my 18th round of FOLFIRI and have had vectibix and oxiplatin scattered throughout the treatment based on what my body can handle.

I guess I am really starting to feel the side effects of the chemo and am really getting tired, but every time I see the oncologist it just seems like chemo forever is the plan. Thank you for sharing any stories or words of encouragement!

Trubrit

Welcome, Hopefuldreams - keep those dreams coming, and hope alive.

29 is an awfully young age to be dealing with CRC, I am sorry it has become your reality. But, your youth will be on your side, and that is a good thing.

We have members on the forum who can answer your question about the chemo; some who have been on chemo for many years, and continue to amaze me, with how well they are doing, considering.

I just wanted to say hello.

Tru

hopefuldreams

https://csn.cancer.org/discussion/comment/1706473#Comment_1706473

Thank you very much for the well wishes! That is good to hear I am looking forward to interacting with the community and gaining/providing support. Luckily, I meet with the oncologist tomorrow so I will get to learn what the plan is for the future. Hopefully, I can move to maintenance chemo or explore some surgical options.

BGNor

Hey - don't loose hope! With a bit of luck you could be in for a long haul.

I haven't been active here for some time now, but I used to be a bit more on here a few years ago. I was diagnosed in Dec 2015(two days before Christmas - talk about the worst Christmas present ever...). Surgery and chemo (FOLFOX) in 2016. Lung metastases discovered early 2018 and started chemo off and on in Jan 2019. Since the start I have now done 60(!) chemo treatments. I just finished a round of chemo and looking for a nice break. Done FOLFOX(mostly) and FOLFIRI both with Avastin. I am still working and enjoying life both during and in between treatments. I guess I'm lucky to have well working treatments, but I also decided to be positive and focus on the positive sides of life. Not easy, but if you're able, that will help you in the longer run. I know - easy to say but hard to do, keep trying though.

Best wishes, Bjorn

hopefuldreams

https://csn.cancer.org/discussion/comment/1706505#Comment_1706505

Thank you, yeah, I have been getting a little down emotionally the past couple weeks feeling like the rest of my life will be on chemo, but your story gives me hope. I took some time off work to rest and recover but am planning on starting work up again in the next couple weeks. Also spoke with the oncologist today and he was optimistic about the scan results. Finished up round 19 today! I am continuing to work on positivity and gratefulness everyday.

Thank you dearly for your story and encouragement!

Best,

Ben

NewHere

https://csn.cancer.org/discussion/326661/how-long-can-chemo-continue

Hi, welcome to the boards, though sorry to see you here. This is a good place for support, to ask questions or just vent as needed.

I was DX late 2014/early 2015. Since then I had 3 surgeries, including one in 2016 removing part of my lung and last year to remove tumors in my spine that started growing. (They had been there awhile). I had 12 rounds of FOLFOX after my initial surgery, about 25 rounds of FOLFORI with Avastin between 2018 to December 2019, about 25 rounds of Lonsurf in 2020/21. I have also been in 4 drug trials, the components of some included chemotherapy. The fourth trial, started last July, is working. (An immunotherapy trial, which was not even really possible about 6 years ago with my mutations because it was still early on trying to figure it out. A lot of research has been done since then. And Lonsurf was not approved for colon cancer until a year after my DX. It shrunk things a bit and kept things stable for a year.).

Three days ago I rode 2-1/2 hours on a bike trainer and then did about 3 miles of outdoor running. And this is with metal in my back and pending radiation for one tumor in my spine that is misbehaving. My CT scan from two days ago shows everything else is all stable. (I have numerous tumors in my lungs for years. They stopped counting. But it is probably 6 dozen at least when I asked. But no one counts :) ).

I am about to go out and run. (I am not, and never have been, particularly athletic. I started exercising about 6 years ago, 3 years into this all. It has helped a lot.)

My bio has some more information/details.

hopefuldreams

https://csn.cancer.org/discussion/comment/1706560#Comment_1706560

Thank you so much for the response. What a journey! It does give me hope that there are people who have gone through so much and are doing so well.

lorrich

https://csn.cancer.org/discussion/326661/how-long-can-chemo-continue

My wife had surgery for CRC and then went on Folfox and oxilplatin. A few months later a scan showed 7 liver lesions. They were microwaved out during ablative surgery. Now starting irinotecan plus Avastin immunotherapy. It seems like this will go on for a while till next scan. We must stay hopeful. I hope everything works out for you.

tanstaafl

For some, the plan is curative to get off chemo, by less ordinary means. Standard treatments and average care mostly get standard and average results. "Chemo forever" means until the cancer becomes resistant to everything they want to sell, or your body breaks down.

A series of surgeries or other destruction, immune and wellness aids, and chemos, is the most predictable way out. However medical ignorance and obstruction vs finding exceptional drs, and combining their tech, are the hurdles, most notably for surgery since that is genuinely difficult to DIY (push comes to fubar and shove on an item - MD, PhD, prof, archie, engr, I can replace you - top surgeons at better hospitals/clinics, is a little thinner).

Otherwise, your are hoping for a magic bullet that mostly didn't show up in the 2000s or 2010s. A few lucky ones, with search effort, found rare successes with TILs (1% match?), or PD1 checkpoint inhibitors (5%).

Now we started from day 1 and did or added things beyond "standard", eventually far beyond "std". I'm a techie . Extra chemistry for less side effects and/or more cancer kill, better immune function and continuous chemo. This enabled even more chemo longer, and then got a previously refused surgery for my wife. We kept the chemo, and other stuff closer in to surgery itself (e.g. 1 week to 1/2 day off before surgery, and once things were good, 1 day after surgery) through better wound healing properties and less infection risk with various nutraceutical tx.

Then more chemo and "stuff", until finally it was gone.

Ultimately it was a resource war, lots of effort and support but we reduced it mostly to cheaper, more convenient home care.