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Folfiri and avastin chemo

Bellen
Posts: 281
Joined: Aug 2016

Hello Group - I have recently been diagnosed with adenocarcinoma colorectal cancer with several mets to my liver. Will be starting folfiri and avastin chemo.  Would anyone who has had folfiri and/or avastin, please post with their treatment, side effects, or suggestions.  Thank you so much.  Well wishes for everyone.  Bellen

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funshine
Posts: 26
Joined: Aug 2016

 Hi Sorry your dealing with this,

Everyone is different so you might not get the same side effects. Or it may take you longer to feel the effects. its hard to say.

I experienced hair loss. not total hair loss but I looked very ill. I had neuropathy, the felling in my feet and fingers were numb at times and when it was cold my hands felt like 100 needles were poking them.  I needed to wear gloves to help with that. I also would feel severe cold when I drank anything that was cold. It felt like I was drinking razor blades. I needed to drink room temperature beverages only.  I would have crazy hot flashes anytime any place. Nausea during treatment and a few days after. severe joint and bone pain throught the whole body. Especially after they give the neulasta shot. severe fatigue and weight loss. skin rashes.

Again, not everyone gets all of these side effects. If you do get them there are things I learned to help get through them.

Im thinking of you and hope you have very little of these side effects. This drug is very effective, so I hope it does what it needs to get you the NED results soon.

take care

Linda

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traci43
Posts: 775
Joined: Jul 2007

Hi Belen - So sorry that you have to deal with this. There are two first line standard treatments for colon cancer and depending on what country you are from, you're more likely to get one rather than the other.  They are FOLFIRI and FOLFOX. FOLFIRI is a combination on 5-FU and Irinotecan. Not everyone has the same side effects, but here's what I experienced.  For 5-FU infusion I was nauseated but controlled with Zofran.  I personally had a difficult time eating or drinking anything while on the 48-hr pump.  The Irinotecan was fine for the first 3 rounds, but round four I had uncontrolled diarrhea.  For some Lomotil or Immodium works, but for me it did nothing. My onc dropped me to 1/2 dose on the Irinotecan and still had diarrhea.  I had no side effects from Avastin.  In 2007 when I first was diagnosed and did chemo, I did FOLFOX which is a combination of 5-FU and Oxyaliplatin along with Avastin.  The Oxy is what causes the cold intolerance, in my experience.  It's immediate and can last for some time.  Everything that you eat or drink has to be at room temperature or above, wearing gloves to handle cold things, and even flip flops when showering to keep my feet off the cold tile. The other problem with Oxy is neuropathy.  During treatment I clumped around and really couldn't feel much of anything in my feet.  Over time it's gotten better somewhat, but I still have some numbness in my feet.  When I was on Irinotecan I was taking the pill form of 5-FU called Xeloda.  Xeloda's side effects were not as severe, although I developed some really deep blisters on my feet.  Skin problems are one of the most common side effects with Xeloda and there are previous posts describing the myriad of lotions folks have tried to keep the skin problems at bay. I can't even remember what Eucerin lotion I used but it was really thick.

Best of luck to you as you start treatment.  Keep coming to the board and ask questions, you'll find we're a pretty friendly bunch with a lot of experience.  Traci

Bellen
Posts: 281
Joined: Aug 2016

Hello Linda and Traci - Thank you for responding - much appreciated to find others who have had similar treatment. I live in Canada and I asked to be matched with peer support, but no one has been set up that had colorectal with liver mets, so this site is very important to me. My chemo is supposed to be folfiri plus avastin - if there are any suggestions that you can remember, in terms of creams or other things that you can remember you did or tried that worked, I would really appreciate any suggestions. Talking to people who have "been there" and experienced the side effects and what may have worked is the best you can ask for. I also read from one post that amitryptlene - (may be spelled wrong) was helpful for neuropathy.  Thank you again, and best to all.  Barb

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funshine
Posts: 26
Joined: Aug 2016

hi Barb,

I used utter cream. It worked very good for me. They carry at walmart in different formulas. I used the extra dry one. It comes in a black and white carton like a cow. good stuff. I used to also break out in a rash, the doctor would prescribe an antibiotic to help with it. you might not get that side effect. I also used Claratin the day before, during and after chemo so I wouldnt have as much pain in my joints and bones. It helped significantly. If you prefer there is another brand you can use for allergies. I cant think of the name of it, it didnt work as well claratin did for me.

Drink a lot of water, it really helps to get that chemo out of you quicker. Flush it out of you. I used to eat things that were higher in protein to keep my counts up, like kidney beans, spinach, kale, green leafy stuff. I also took probiotics a few days after chemo, because chemo kills everything in your gut. the probiotics helps your tummy feel less nausea. I had more side effects with the nausea pills they prescribed.

Oh an if you start to get the sores in your mouth the doc can prescribe a mouth rinse, its called majic mouth rinse. Also use biotene tooth paste. its amazing because it doesnt burn your mouth or the many sores.

thinking of you. If you have any more questions no matter how big or small do not feel bad just ask.

linda

Bellen
Posts: 281
Joined: Aug 2016

Had first chemo yesterday - 5Fu bolus off tomorrow.  They gave me all kinds of medication, shots, etc for nausea and cramping during chemo.  What an ordeal - long day.  Brought home meds for nausea, a mouthwash swish, and immodium, which haven't used yet, but have felt nausea (after having yogurt) and took the 6 hr  nausea pill mid day, and now taking one for night.  One thing I notice is some numbness in my toes, especially right foot. Noticed it last night while in bed too.  Is there anything that can be done for that? I think I read that 5Fu can cause tingling or numbness in hands or toes.  

Trubrit's picture
Trubrit
Posts: 4906
Joined: Jan 2013

but keep a keen eye on that, and be sure to report it to your Oncologist BEFORE your next treatment.  

Actually, I suggest massage. Keep your feet moisturized with creams but not between the toes. If you take baths, the warm water should help. I like to press my toes up against the end of the tub and move them back and fourth. 

Its a long road, but you have started and that really helps, knowing that you are doing something to beat the beast. 

Good luck!

SUE

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lizard44
Posts: 409
Joined: Apr 2015

I found it helps if I keep my feet warm so I wear socks all the time, including to sleep in. As Sue said, massage helps, too.

 

Grace

Bellen
Posts: 281
Joined: Aug 2016

Hi all - Had second chemo cancelled due to low WBC. Booked for next week.  Just got started so hope they recoup, and my Onco had said he "scaled back" 1st treatment.  Wow - cancelled already.  A bit frustrated that things aren't rolling along, but nothing I can do.  Is there anything - does rest help with WBC?  Thanks again.

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PhillieG
Posts: 4891
Joined: May 2005

First, sorry to her about your dx. I've had issues with WBC but as far as your Onc scaling back your treatment is because of the tingling in your feet? Just a thought. It's not uncommon for them to do that.

dancer2
Posts: 49
Joined: Jul 2016

Bellen, do ask the doctor about getting help with the wbc shots...I was going to have to pay a small fortune but the pharmacist called around and got me in an assistance program and got approved or i would never have got the avastin ( hard to get I have heard) as is the neutropen shot or the granix shot which i take....you must ask!  You did have surgery to have  your colon tumor taken out, didn't you? Boy, that is the first thing i did as soon as my sugeon told me i had colon cancer i said take it our NOW....she agreed that it needed to come out.....the scans before surgery showed i had one small lesion in the liver, a  biopsy was done and it was from the colon..that is why when that happens were considered mcrc's stage 1V because the cancer went to another organ...some docs like to shrink them with chemo first, but i never even considered that, i wanted the ugliness gone.....but if the tumor is considered to big to operate, then chemo will shrink to it gets to a point where surgery can be done....tho i have read people have had ones that the size of oranges taken out...just depends on a lot of factors.....milk of mag will work with constipation but sometimes it can take a few days....i never measured when i was using it, filled that big cup to the top and downed it......don't let yourself get plugged up...because that happens a lot and is awful.....probiotics, and a good herbal laxative...i like a certain laxative in capsules i get at the health food store....works the next morning.....wbc's can go pretty low, and that worries them because it makes  your immune system almost unable to fight the germs we all get bombarded with....and i don't think there is much we can do ourselves since it is the chemo that is destroying them....they should give you the shots so please don't forget ask if you can get assistance.....twice i was given no chemo for three months and was not given that shot by the first doctor i had.....this new one got right on it........stay on top of it. 

Bellen
Posts: 281
Joined: Aug 2016

Hi all - I will definitely be talking about my low WBC, chemo missed due to WBC, and the shot that helps with WBC- will do this week. Thanks all.

Bellen
Posts: 281
Joined: Aug 2016

Hi all - I will definitely be talking about my low WBC, chemo missed due to WBC, and the shot that helps with WBC- will do this week. I did not have my CRC tumour removed  - surgeon said would do surgery if tumour grows and causes blockage - I know the Onco talks more about the chemo helping with the multiple spots in my liver, and that chemo helps both areas.  Also I had some numbness in my right toes first few days after treatment - I will mention this to my Onco - not sure if I forgot last time because it went away. Thanks all.

susan5050
Posts: 1
Joined: Jun 2017

I was on oxy and it just stopped working and have now been switched to Folfiri. Twice my WBC count has dropped and threatened my treatment schedule my oncologist set me up with 3 days of self injections of Zarxio which brought my WBC counts back up and we were able to do treatments as scheduled. I would ask your oncologist about this.

Missmealie
Posts: 1
Joined: Mar 2019

I had 9 sessions of Folfox for CCR which metastasized tonthe liver. The oncologist decided to start on Folfiri and Avastin as the Folfox didn’t seem to be working.

 The first three sessions of Folfox were awfu. Neuropath, nausea for 10 days, and on and on. I fasted for 24 hours before Folfox no 4 and have had no side effects since. No nausea, neuropathy or mouth sores. The latest round (Folfiri and Avastin) has been bearable, too. Some dizziness and queasiness, but nothing l can’t handle. Worth trying. There’s good science behind it, too.

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Trubrit
Posts: 4906
Joined: Jan 2013

We would love to welcome you to the forum. Why not post your very own intro thread here https://csn.cancer.org/forum/128 on the forum home page. 

I'm glad you are done with the FOLFOX, and I hope treatment is behind you and you can go forward with NED. 

Tru

daughter71
Posts: 1
Joined: Apr 2019

My dad was diagnosed with stage iv colon cancer with liver mets last August.  He began his chemo the first week of September.  He had 8 cycles of the Avastin, Oxaliplatin, Leucovorin and Fluorouracil.  The doctor then took him off the Avastin for two months so they could try a mapping study to do what is called the Y90 procedure on him to inject beads directly into the liver.  They were unable to do the treatment because they were concerned it might hit some of the good areas of the liver while treating the bad and they didn't want to take a chance.  My dad has done very well with his treatments; there were a couple of days during the week of treatment that he didn't feel good but the nausea medicine controlled that.  He did experience some of the cold effects of the oxaliplatin but he controlled that by drinking room tempature drinks.  They have now put him back on the Avastin but replaced the Oxalipatin with another medicine that begins with an I that can cause diarrhea.  His CEA number began around 4208 and has been dropping since the time he began chemo and about 4 weeks ago got down to 270's but here recently it is fluctuating up and down in the 300's.  This is one of the reasons they added the med that begins with an I.  In the beginning my dad had a great positive outlook and I know he is very tired from the chemo but it seems like for the last four weeks he has been very quiet.  Not like himself at all, he keeps asking will he ever be cancer free when we go to the doctor and they really do a great job of answering that they have lots of treatments but as long as the tumors are in the liver he will need the chemo to treat and shrink.  I want to help boost his positive attitude and help him smile again but I don't know how he is feeling inside - we try to be upbeat as best we can but now I feel helpless.  I'm not asking this to be insensitive but just wanting to support my dad - he seems like he is more depressed and not talking.  Could this new med have introduced some depression?  The reason I ask is because the doctor ask him the last couple of times if he has had any depression?  I just want to know how to help him.  Thanks.

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Kazenmax
Posts: 363
Joined: Feb 2016

this is the I medicine and yea it causes diarrhea. I was only on this combination for 3 treatments because of low WBC. Switched to Avastin and xeloda. I wish I could give you some idea on how to help. It’s very tough to go thru chemo and I know that I was down a lot too. All you can do is take advantage of the good days. Read through some of the posters history on this page, there are lots of encouraging stories of long term survival.

sending strength and love to you and your family

k

Trubrit's picture
Trubrit
Posts: 4906
Joined: Jan 2013

I remember when I was at my worst, during treatment, the fatigue caused me to become almost zombie like.  I just wanted to 'be me'. I don't think I was depressed, just totally worn out.  I could not get up the energy to do anything and would barely say anything. When I did say something, it sometimes came out all garbled. I thought I was losing my mind. OF course, it was chemo brain. 

There is so much going on with the whole body during chemo. It effects everything.  

As for CEA. My Oncologist refused to do a CEA test during treatment, because he said that the chemo makes it unstable. So, don't fret too much about that, especially as it has gone down so dramatically. 

You have posted to a thread from last year. Why not come to the forum home page - link here  https://csn.cancer.org/forum/128  and introduce yourself. Even copy and paste this post. That way we can concentrate our replies to you, and not run up the OP's thread. 

Welcome to the forum.  You dad is blessed to have a daughter concerned and loving.  You are there for him, and he must really appreciate that. Keep being positive. Be positive for him, when he doesn't have the energy to be for himself. 

Tru

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Benjaminmi
Posts: 2
Joined: Apr 2019

so today was round 42 of chemo for me.

Rounds 1-9 were Folfox (Oxiliplatin).   10-41 were 5FU and Avastin.   Today was those two plus Irinotecan.  

Have to say it kicked my butt today.   Have recurring secondary malignant neoplasm of peritonium.

I will tell you MD Anderson in Houston is tops!   Go there every 8 weeks.

get my chemo locally in Florida. 

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