Help, Need advice again

did both
Hi Jan,

I have done both Folfox and Folfiri. I did Folfiri twice after my two recurrences. I was able to finish 10 cycles of Folfox. The neuropathy was bad and I was told it was likely permanent. The good news is... it mostly wasn't! My hands were very, very bad and they are now back to I'd say 95% normal again. My feet are much, much better. The small bit of neuropathy I still have in my feet is down between my big and second toe.
If you're not already, I'd advise that you start taking B-12, B-6, L-glutamine, and L-lysine. If I forgot anything there, hopefully someone else will chime in.
The L-glutamine, by the way, is also very good for mouth sores. You would get the loose powder form and actually dab it on the sores like a paste. I was amazed at how well it worked and wished I had known about it sooner than I did. For the neuropathy, I think you could take either the powder form mixed in a drink or the capsule form.
I never took anything prescription for the neuropathy. My onc had talked about me taking Lyrica and something else that I can't remember. I've heard it does help some but, on the advice of a friend, I chose not to take anything as she said it made her already-fuzzy chemo brain even fuzzier. The prescription meds for neuropathy, I believe, deal more with neuropathy related pain than with numbness. I wasn't in pain, just had numbness and muscle weakness.


I believe the Folfiri treatment will be easier for you to tolerate. There's not the allergy risk, the neuropathy, or the oversensitivity to cold to deal with in Folfiri.
It does have its own issues to deal with, however. The main side effects while taking Folfiri will be some fatigue, possible drop in white blood cell count, diahrea (I can never remember how to spell that word) and possible stomach cramping. For the drop in white blood cell count, my oncologist ordered me to get a neulasta shot every time my 5FU pump was unhooked. He even did it when my count wasn't that low, more as preventative. This was a completely different approach than the other onc I had before him took. That onc would only give me a shot if it dropped really low and then sometimes he'd just have me skip a treatment or two to wait for the count to go back up. My current onc would never wait because he said it's best to either prevent it from going down and to deal with it right away. I didn't have the cramping, but I did need to go onto a prescription strength anti diarheal medicine called lomotil. The immodium helped for a while, but I needed something stronger after a while. At first, I just needed to take it a couple of days starting about three days after my infusion. As time went on, I pretty much had to take it daily, right before eating. They give you something for it in your I.V. which actually made me constipated the first 2-3 days. Then "the dam" broke loose on about the 3rd day and then I needed to take the lomotil.
Another kind of funny side effect I'd get was a sneezing fit the first and second day. I've not heard of this happening to anyone else & neither had my doctor or nurses.
The good news is that my brain and thinking ability were much clearer while on Folfiri than I was while on folfox. I was in a constant mental fog while on folfox.
Also- many people have good results with it and that's what's important to remember here!
So far as hair loss, I did not lose my hair. My hair didn't even thin much the first time I took it (took it for about six months each time). The second time around, it didn't start thinning until I had been on it for 4-5 months. When it started, I went out and got some scarves and a hat, but never ended up needing them. It kind of stopped after a while. I have heard of other people who do end up losing their hair, or it thins so much that they end up shaving it. It might have to do with how thick your hair is to begin with. Although my hair is fine, I have always had a lot of hair on my head, so it never really was noticeable to others. You'll just have to wait and see on that one.

Best wishes to you in this chemo transition-
Lisa

Best wishes to you as you change-
Lisa

Kathryn_in_MN said:

Folfox
Hey Jan,

I had 5 of 6 with oxaliplatin, and did not have it my 6th cycle. I guess we are pretty much on the same cycle now that I had a week off over New Year's. You've caught up with me.

My onc was hoping to get me to 8 cycles with the oxy. We are still working on seeing if there is a way to safely get more oxy or not. (I had a severe allergic reaction and even with how aggressive my onc is, he isn't willing to do the oxy again unless the oncology pharmacist comes up with a good plan - and then it will be at the hospital for close observation during and afterwards.)

I was told that studies show that the benefit of 8 cycles is almost the same as 12 - that is why he hoped we'd get to #8. But just getting it for half the cycles gives you enough benefit if you have to stop it. There really isn't a need in most cases to add another drug to the 5-FU at that point. I'd think hard about having oxy in the 7th cycle if you are having that much trouble with neuropathy. But if you do have it #7, after that I'd just leave it at 5-FU and not add another drug. My onc is known as the most aggressive one in our area. I think if he is ok with dropping oxy and not adding another drug, any other onc should be also.

Anyway, I thought you were stage III, with clear margins after surgery? If so, I would fight to just drop the oxy and NOT add Irinotecan. Save that in your bag of tricks if the cancer were to ever come back. Often a drug is NOT as effective subsequent treatments as it is the first time. If I've missed something and you are stage IV, that is a different ballgame.

Hey Jan!
I am taking the Folfiri with Avastin regimen, and been on it since Feb, last year. I had horrible nausea the first time I took it, and their anti-nausea meds they gave me, didn't help! For the next treatment, they did give me Emend, and Dexamethasone, Zofran and Compazine to take now, and I rarely get sick anymore from it! Make sure you get great Anti-nausea meds! Chew on ice chips also to prevent mouth sores.

I also experienced alot of fatigue the day after disconnection, I was put on a 46 hour 5fu pump, and when the home health nurses come to disconnect me, I feel very tired the next day, for about 3-4 days, until I'll finally bounce back and start feeling like myself. Just when you start feeling good, it's time to go back for another treatment though *sighs*

I also had alot of hair gone, My hair came out in clumps in the shower, and I cut my hair shoulder length to take the weight off it, to maybe stop it from coming out so much, and it pretty much helped. By my 8th round, my hair had stopped falling out, and now it's growing back in! little spikes sitting on top of my head LOL...I did buy cute hats, from Hot Topic and Icicles and Spencers, I'm not much on wearing wigs.

I had a colostomy also last year, the avastin was really good with the chemo, it actually strangles the tumors blood supply, which starves it, and it dies. I didn't get any of that sneezing, or bruising and stuff, make sure you stay hydrated!Lots of water!

Also, saltines and good ole maryjane helped my nausea, but you will have good days, also with the bad, you can get through this, if I can do it, you can do it. Any other questions, just let us know, and good luck with this regimen!

Hugsss!
~Donna