FOLFOX vs. FOLFIRI

[rachelfromnyc]

Been reading for a while and finally posting. First about me. I was diagnosed in May of this year, one month after my 37th birthday. Primary tumor is in the transverse colon but also have lung nodules and enlarged lymph nodes in the abdomen/pelvis and neck. The neck lymph nodes were biopsied and positive for disease. The intent of my treatment plan is not curative and I'm to be on chemotherapy for life. I completed six rounds of FOLFOX over the summer, did a scan and it was mixed results. Lymph nodes shrank and the primary tumor is stable but disease has progressed into the liver. I started FOLFIRI with Avastin today and will have a scan again in three months.

Some questions for those folks in my same or similar situation.

1. How long were you on first line treatment before moving on?
2. Any why the change (e.g., toxicities, intolerance of side effects, stopped working)? I'm fortunate to not experience physical side effects other than cold sensitivity from the Oxaliplatin which resolved itself in three or so days and hair thinning. I had problems with white blood cell counts but was getting shots of first Neupogen then Neulasta and afterwards, no issues.
3. In terms of effectiveness, which was better? Perhaps you can share how long you were on each?
4. What can I expect in terms of side effects with FOLFIRI/Avastin? The nurses say they call it "I ran to the can". Haha. Plus the same stuff with FOLFOX like nausea, fatigue, etc. But the new ones are high blood pressure which is closely monitored and hair loss.

Thanks everyone for your help, not just for input into these questions, but all the info that I've read on this board. Super helpful. Also, if you have a joke or two to lighten my mood and make me laugh, I love that kinda stuff. I'm full of steroids from the infusion today and will be up all night!

[zephyr]

Some questions for those folks in my same or similar situation.

1. How long were you on first line treatment before moving on?
2. Any why the change (e.g., toxicities, intolerance of side effects, stopped working)? I'm fortunate to not experience physical side effects other than cold sensitivity from the Oxaliplatin which resolved itself in three or so days and hair thinning. I had problems with white blood cell counts but was getting shots of first Neupogen then Neulasta and afterwards, no issues.
3. In terms of effectiveness, which was better? Perhaps you can share how long you were on each?
4. What can I expect in terms of side effects with FOLFIRI/Avastin? The nurses say they call it "I ran to the can". Haha. Plus the same stuff with FOLFOX like nausea, fatigue, etc. But the new ones are high blood pressure which is closely monitored and hair loss.

With the understanding that everyone responds differently and this my personal experience (your mileage may vary):

1. 5 months (don't remember how many rounds);
2. Folfox quit working;
3. Not much difference - Folfiri quit working after about 5-6 months; and
4. The nurse was correct, that was the worst side effect. I had only mild nausea but the fatigue was tough. I never experienced the high blood pressure and my hair loss was only noticeable to me (I started with a lot of hair). I continued to be challenged by low white blood counts, low platelet counts, and an enlarging spleen that was probably trapping my platelets. I had to start Neulasta shots after every infusion.

[Jacques]

FOLFIRI + AVASTIN
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51340&p=398474#p398474

And here's a cartoon ... in case you're interested...

[claudine]

My husband did 6 rounds of Xelox (Xeloda + Oxaliplatin) as adjuvant chemo. It didn't work at all (he developed new mets in adrenal gland and lungs) and gave him horrible peripheral neuropathy in his hands and feet - feet still hurting a lot one year after the last infusion. He started Folfiri + Avastin in March and has had 13 cycles so far; the lung mets are gone, the adrenal met is shrinking, and he's tolerating it a lot better than Xelox. I really hope it's the same for you!

[claudine]

In terms of side effects from Folfiri + Avastin - yes, hair loss, although my husband didn't go bald; his hair just thinned a lot (and since he's a 53 year old guy, nobody who didn't know him before notices). Fatigue after the infusion - worse now than the first few cycles. Bloody nose and drippy nose (but everybody has a cold in Montana right now!). A few cycles ago he started taking blood pressure medication, he's always had slightly elevated blood pressure but it definitely got worse because of the treatment.
And a big bummer for him - he can't tolerate spicy food anymore, and he used to like it so much! But that's a pretty minor one all things considered

[Rock_Robster]

Hi Rachel, my answers below:

1. I did 6 cycles of FOLFOX prior to stopping for surgery.
2. I restarted after surgery, stopping oxaliplatin after 9 cycles due to a pretty severe allergic reaction (not pleasant - can’t recommend).
3. I am now on FOLFIRI and the results have been very similar to FOLFOX - about 30% reduction in tumour size after 3-4 cycles.
4. I find FOLFIRI easier than FOLFOX. Main symptom by far is fatigue (and as they say, it’s the only one that can’t kill you!), plus a bit of nausea & diarrhea that’s easily managed with Zofran and Imodium. Not having the cold sensitivity and neuropathy is a very welcome relief. My hair has thinned somewhat, but nothing I can’t manage with a few clever products.

Ok, a joke...

A guy is in a doctors office. His doctor is there with him.
"I have two pieces of bad news," the doctor says.
"What are they?"
"Well, the first piece of news is that you have cancer."
"What's the 2nd piece of news?" he asks.
"Well, the 2nd piece of bad news is that you have Alzheimer's."
The man laughs and says, "Well, at least I don't have cancer."

Good luck!
Rob

[rachelfromnyc]

Posting an update. I’m not feeling too bad, just been sleeping a couple extra hours more than usual. I also have this headache I can’t seem to shake. Not migraine levels of pain but it’s there.

Thanks everyone for weighing in (and for the laughs)! Really appreciate it.

[claudine]

Rock Robster LOL

[Cured]

Claudine, ‘Hoping you respond and get better. Sorry you are in this club.
Everybody is different and starts with different health status. The Oncs guess what will work for you; considering the Standard of Care.
I hated the neuropathy affects of Oxy -but was happy to endure them hoping to kill-off the micro-tumors.
I consider the Folfiri easier overall. The diarrhea was temporary. We bought the diapers by the case at Sam’s Club & wouldn’t leave home without my diaper bag.
The Avastin was like water for me.
There was a 10 year gap between the FOLFOX and Folfiri for me.

Savor each day.

[Cured]

Claudine: please apply all of that to your husband - as I read your signature. Adding Krone's is a messy wrinkle.
I’m sure you all already have a diet and medical personnel advise you.
I did the Ketogenic while on Folfiri and believe it helped. There are studies which support the concept that Keto helps those going through chemo.

Human studies don’t yet prove that we can starve cancer by depriving it of sugar- but why not try? They have known for years that sugar feeds cancer. I’m am staying in Ketosis with the hope that burning ketones/fat is healthier than burning glucose. Now I need to get more exercise.

Prayers for your husband and you.

[claudine]

Thank you, Cured. Right now the diet topic is a very sensitive spot with my husband. He's gained weight - to the delight of the hospital crew who's always worried about folks losing too much while on chemo; in his case, he's had to decrease the amount of exercise he was doing because of fatigue, so he's put weight on and he's not happy about it. But he really likes carbs... I try to bring up the subject sideways; recently, a good friend told me he lost 10 lbs by cutting most carbs out of his diet; so I brought that up. But my husband loves to cook, he's an amazing cook actually, and carbs feature prominently in his cooking... With everything that he's going through, I feel really bad mentioning that he limits/stops something that he enjoys. And as you know, no doctor is going to suggest he does any form of diet since there are no scientific proof that they work. I'll keep making my sideways suggestions; I can't tell him that it's for me, because I'm really tiny (plus I'm French so bread !!) - still I try to eat fewer carbs and suggest meals that are more veggie based.

[claudine]

Regarding Crohn's - he's been in remission for 30 years! Yet, the PET scan showed activity in his small intestine, which got resected but no cancer was found. Still, his oncologist is about 99% certain that's where the cancer originated, probably a tiny tumor that got destroyed by the immune system, but had already sent cancer cells in the blood stream.