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

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi all, I'm asking for a little help tonight... Unfortunately, Rick's scans today revealed tumor spread in the peritoneal cavity, so he'll be starting back on chemo in a couple of weeks. We met with both his oncologist and HIPEC surgeon today, and they indicated that it's just a wait and see approach now in terms of future surgery. So, I'd like to ask a favor of all who have had experience with Folfiri/Avastin. (I guess I should have paid more attention when others had inquired about it...) Could you please tell us what we should expect from this new regimen? I've heard about hair loss, but also that Forfiri is better than Folfox in regard to neuropathy. (The oncologist told us nothing in this regard.) Any help would be greatly appreciated... Many thanks, Luv, Cynthia

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry for the spread. I was on folfiri + avastin from Sept 09 to Feb 11. My main side effects were hair loss + diarhea, some cramping. No neuropathy. Your onc's office should be able to give you a sheet with possible side effects. Good luck!

suz_3
Posts: 17
Joined: Nov 2010

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!

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Sorry about the recurrence. Sometimes it seems like one step forward and two steps back.

My George is on this. He is not on the 5FU though. Just the CPT-11 and Avastin along with the pre-meds. He does not experience nausea. The diarrhea associated with this drug is as nasty as it gets and if he gets the bad diarrhea his poor bottom will be very sore. Cottonelle or other moist towelettes really help with wiping. George did lose all his hair, head, eyebrows, eyelashes, beard, chest, legs, all of it. He experiences extreme fatigue. This is the first time in two years that his blood counts were off a bit, he became slightly anemic, so that accounts for some of the fatigue. He now gets a shot of procrit if necessary and neuprogen shots for the white blood count. He also is much more gassy than normal.

His appetite has diminished partly due to the diarrhea so diet wise keep it as good as you can but if he has a taste for something, give it to him. Thats what the onc told us. Spicy and acid type stuff bothers him now, never did before. Dole makes wonderful fruit juice without the acid of orange juice and it works well. Powerade for electrolytes. Frozen yogurt with some berries is soothing. Hydration may be a problem with the diarrhea so make sure you have stuff on hand to drink that is appealing, i.e. Powerade, rasberry iced tea, non-acid fruit juice, etc.

This is our experience with this drug. On the good side (if there is one) is that George's CEA over a couple months shot up to 200 and is now back down to 20 so the drug does work.

Tke care - Tina

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Thank you all for your replies and suggestions, it's very much appreciated. I just needed to know what we should expect going forward. His onc. never mentioned the side effects or anything, but I figured that it didn't matter much since I knew that the people on this board would give us real scoop. Thank you so very much... Luv, Cynthia

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I'm on the same combo, concerning my hair I have lost most of it, but I think is a minor issue, not neuropathy at all, some stomach issues but manageable just some stomach cramps, normally after lunch time, that makes you go to toilet but not even real diarrhea just some loose stools and some discomfort in the stomach but again quite manageable, just notice that I go to work every day not a problem.
Hope it helped to you, give a big hug to Rick from my part, I'll have him on my prayers.
Hope the best for you both!

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Thanks Pepe, I appreciate feedback. I'm glad that it has been manageable for you, hopefully it will be for him too. Hugs, Cynthia

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Cynthia,
My husband, Jimmy has been on folfiri/avastin since February and he seems to be handling it well. He was on folfox prior but I think the folfiri is working better. He was excited today because he actually needs a haircut (haha). He had his ct scan on Monday and we saw the onc this am and everything is stable (Thank God). Not as good as we want but better than progression. The only problem he seems to have is the diarrhea (handled by Imodium), a cough and neuropathy but we think that was due to the oxy. Other than that he feels and looks well. He even stained our deck yesterday.

Best of luck to you and Rick,,

Jan

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Wow, you're right, my eyes went wide after reading the top 10 list of possible side effects, but better to know upfront than be taken by surprise by it all. I knew that you and the others would give it to us straight, so we thank you very much for all of the information. It's going to be a tough ride, for sure, but he's a fighter! We haven't yet met with our local "chemo doc", but we'll definitely take your post with us so that we can ask about the drugs that you mentioned. Thank you again, Luv, Cynthia

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Cyn

His WBCs might drop as well during treatment - if that is the case, the onc will prescribe NEULASTA to "force" his body to produce more white blood cells, so he can stay on time with his treatments every 2 weeks.

And you may get a differing opinion from your onc, but the best way that this is given is 24-HOURS after the 5fu pump is unhooked - this gives it the best chance to work. And the best place to receive this shot is in the stomach, more fat to work with in that area and it's only a prick, they inject very slowly and you would want that.

Now, if he does not go the 5fu route and were to need WBC booster shot, I would still think it would be a 24 hour wait, but am not sure, because I did the pump.

NEUPOGEN will be another type of WBC - but it is given over several days and would require separate trips to the hospital each day, unless they trained you to do it yourself.

With the Neulasta, it's one shot and it's over. There may be symptoms like a headache - my onc explained that the skull is a huge resovoir for white blood cells and since the body is trying hard to produce extra of what the body does naturally, it will feel like a bad headache. If he has any type of pain pills, you could take that as soon as you got home - get ahead of the pain, you know. And there may be some associated bone pain in other areas.

I did 12 of these shots during my treatment and stayed on schedule. During that time, my WBCs were up and down, but stayed high enough for treatment. Over time the body adjusts and he might not hurt as bad.

Ok, guess that's it, all I can think of right now. Your onc will freak out when you walk in and start "talking his language" LOL:) He'll wonder how you got so smart, so quickly.

See you:)

-Craig

gerryo's picture
gerryo
Posts: 50
Joined: Jun 2010

My husband started this regime (sp) last month. He has had 3 rounds so far. Not to bad with the side effects except for flu like symptoms. I am sure as the weeks go by and he received additional chemo the side effects will increase. Also, I use a web site called chemocare.com. they have a wonderful web site to look up all of the chemo drugs and all side effects. I found it to be very helpful. Hope all goes well for the both of you.

Gerry

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

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.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Cynthia,
I am sorry that Rick is going back on chemo. Dick has been on Folfori + Avastin for quite awhile. I think he has had 29 treatments. 'He has 3 hard days and then day 4 and 5 he starts to feel better. For the first 3 days he pretty must rests. When he unhooks from the pump on day 3 he tries to get moving. Today he unhooked and went to the gym (he says even if it is really hard, it makes him feel better.) We walked about 2 miles this evening. The diarhhea is bad. He uses the immodium and I am constantly on his case about drinking water. He does get tired but like I said he really just rests those first 2 and a half days. His hair has thinned but he has not lost it all.
I wish you the best Cynthia.

Aloha,
Kathleen

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Dear friends, Rick and I so much appreciate all of your advice and information and taking the time to tell us your individual stories with Folfori. It's a lot to digest all at once, and we're still kind of in disbelief that we have to start this all over again, so soon. We had had such high hopes that the HIPEC surgery would be a success. Anyway, take care all, and thanks again! Luv, Cynthia

Erinb
Posts: 295
Joined: Apr 2010

I'm sorry you have to go through this. My husband experienced constipation, diarreah, nausea, hair loss, runny nose and drop in blood counts. The doctor recommended immodium and he has a prescription for lomotil for diarreah and zofran for the nausea. He also gets a neulasta shot after the treatments which is another set of side effects. He feels crappy for about 5 days after treatment. Now he is on irinotecan Erbitux and Avastin and it was easier to handle than folfiri. Just the look of the pump would make him sick.
Erin

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