New regimen - Folfiri w/ Avastin - help please??

I was on this for about 9
I was on this for about 9 months and basically just had fatigue and nausea. I have never lost my hair with any treatments. I wish you all the best. The Avastin didn't work for me, but I will pray that it will work for him!

Hi Cynthia:)
As you know, we all react so differently to the drugs we are adminstered....but nonetheless here is my experience.

I did not do Avastin this time. Instead we did Folfiri with the 5fu pump/46 hrs.

One thing to keep in mind - LEUCOVORIN may not be available for Rick during his treatments - there is a national shortage of this drug and many hospitals have been caught up in it. 3 of my last 4 treatments, I was unable to have it. So, don't be too alarmed if on any given treatment day, they come up short.

Now, as for side effects...

1. Hair thinning from top of skull to back, but did not experience total loss (really glad)
2. Hair fell out on arms, legs, chest, 1/2 eyebrows, all of my eye lashes, and areas south
of the border.
3. Fatigue and overall general body illness.
4. Runny nose
5. Tear ducts very leaky and running
6. Diminished eyesight - lots of blurriness at times.
7. Nausea
8. Diarrhea (but not nearly as bad as some folks have it, again just lucky.
9. Loss of taste buds - unable to taste food well.
10.Fingernails brittle

Now, if that's not enough....and don't you think it ought to be?

Check out his pre-meds package. He should be getting ATROPINE to help with the diarrhea. He'll probably be getting DEXAMETHASONE, which is a steroid (may have trouble sleeping on infusion days). And he should also be getting ALOXY, which helps with the nausea.

I'm also wondering why they are not adding the 5fu pump in with this program. It's an additional intensifier and unless the onc had some reason not to do it, you might want to inquire about this. And if he were doing the pump, he would also have the 5fu BOLUS, as the last drug to be used during infusion...it's a 15 minute jump starter prior to having the 5fu pump hooked up.

I may have missed something but this is the Reader's Digest version of it and is probably more than you wanted to know, but I can't leave Rick "hanging."

As always - Best Wishes to you and Rick!

-Craig

My combo too
I've been on FOLFIRI with Avastin since last fall - 13 cycles now. (I did have 3 cycles without the Irinotecan after tx #8, but I had progression when we tried that.)

Last fall my CEA was still climbing after my first tx, but came down after my second. Back on it now, and my CEA took a big drop after just one tx with the Irinotecan added back in!

My nose runs all the time - kind of a drip. Any time I eat or drink it makes it worse. (It doesn't matter if the items are hot or cold, or spicy or not.) I also have bloody noses a lot. If I blow my nose, there is always blood. In the mornings I wake up with my nose fairly plugged. (This next part is disgusting, but I know several others it happened to, so since you asked...) In the mornings (and sometimes more than that), I have to remove very large blood clotted buggers from my nose, to help me breath better.

I did lose my hair. Really not a big deal. Luckily I did keep my eyebrows and eyelashes (they both thinned). All other body hair fell out. I saved a lot of time and expense not having hair! No shaving, no shampoo... My hair grew back when we dropped the Irinotecan plus I had an extra 3 weeks off chemo before adding it back. Now on cycle #2 it is falling out again.

My white counts dropped on FOLFOX, and I needed Neupogen shots (at first I got 3 days in a row, and then we dropped back to just 2 days). But my counts dropped so severely with FOLFIRI that I have to get Neulasta shots. I tolerated Neopogen a lot better. Neulasta gives me a lot of pain, and back spasms.

Diarrhea is the most common side effect from Irinotecan. There are two types - early and late onset (day 8 or later). The late onset is more serious and harder to get under control. They will give a plan for control - follow it! I thought it was way too much Imodium and did not follow the instructions at first. The late onset diarrhea is not your normal diarrhea, and you need to completely ignore anything it says on the Imodium box, and follow the oncology instructions instead. I found that I also needed to continue to take one Imodium prior to meals for an extra day or two after I thought I had it under control. If I didn't, the diarrhea hit again about 45 minutes after eating. Strangely, after my little break from the drug, I haven't had as bad of trouble (yet).

Sometimes you can get bad cramping during infusion. This happens to me some cycles, but not all. They can give Atropine to help this (I have bad reactions to that drug and can't get it). If there are any weird or uncomfortable symptoms during infusion, speak up right away! I have had small allergic reactions, but we have had pretty good luck now keeping them under control with pre-treating with Decadron and Benadryl.

My fatigue is similar on FOLFOX or FOLFIRI. My mouth sores are not as bad on FOLFIRI. Neuropathy is not an issue on FOLFIRI (although it does seem to aggrevate my existing neuropathy days 2-6). No cold sensitivity, jaw spasms, etc. with FOLFIRI.

For me FOLFIRI and Avastin is not easy. But given the choice between this and FOLFOX, I would take this. I had much more severe allergic reactions to Oxaliplatin, and still have bad neuropathy in my feet from it, and found it harder to tolerate.