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What should I expect? - FolFuri, Irinotecan + Avastin

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

It took 4 or 5 days for me to come to grips with with the terrible results of PET scan. Well, it's official... I remain inoperable. CEA climbed from 4 to 21 in a few months, one tumor in the liver grew, the others remain the same.... but the spread to the pelvic area and bones continues.  a few spots on the acetabulum, pubic bone, left shoudler and now a spot noticed one of the lower left ribs.   Crazy news.  But, I've told myself I'm done crying about it... done complaining and *****ing.... and instead its time to fight like hell. It's time to jump on the chemo as strong as possible, keep exsercising, keep eating well...

So, new chemo treatments begin this week. And, I'm looking forward to a very strong dose of this and i'm ready for any side effects needed to get on a drug that I know is working.  I can take it and i'm ready for the fight.

but, if anyone has any insight as to what to expect or maybe if there are some special tips or ideas to share... share em please

FolFuri, Irinotecan (CPT11) + Avastin.

any experience?

 

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

But I am glad your are ready to fight. I am here to support you.

I don't have experience with that combination of chemo but I know someone will.

I will be thinking of you and your family .....~ Ann

jen2012
Posts: 1196
Joined: Aug 2012

No experience - just good thoughts, prayers and virtual hugs.   I'm sorry for the disappointing news Joe - hang in there.  I'm pulling for you that your next scan will be so much better.

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

I know we've talked and that I've done Avastin at the start along with FOLFOX. It was 9 years ago and I don't remember the side effects but I worked and kayaked for 81 consecutive days stopping just two days before surgery. I was 46, I was inoperable and given the Death Speech right at DX which was unacceptable for me. I was determined, and I went after it aggressively. The kayaking played a role in everything IMO.

Then I did the Irrinotecan for roughly 6 years combined with Erbitux. It wasn't easy but I worked then too with taking W-F off so I had that and the weekend to regroup. I had more trouble with premeds (anti-nausea) causing constipation. Many get the $hits. I have said before that I don't seem to be typical. I'm unique (just like everyone else). After doing Erbitux alone for 6 months I made sure that when I went back on Irrinotecan that they lowered my premeds. I had fewer issues. It still made me tired so the W-F schedule worked in my favor.

I've never done folfiri. I've said before that maryjane is great for nausea and taking the edge off but it's still a grind. Everyone had a different tolerance for pain and for chemo. I will never say that chemo is easy or that chemo is your only option. I wouldn't even know which direction to turn if what I was doing wasn't given me results that I was OK with...Finding evidence of alternatives working is hard. It's not funded (unfortunately) and most seems to be anecdotal which isn't terribly helpful IMO.

You have always struck me as a tough fighter Joe, you've got the a strong positive attitude which can take you very far. People do survive this, not everyone as we know, but people do survive it. Why not you?

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I'm doing folfox and avastin, yesterday was my 13th tx. I am off avastin starting with yesterday's tx as I am having my colostomy reversed June 17th. But, I have been doing well on my treatment. Keep the faith, you can do this!

Judy

Dyanclark's picture
Dyanclark
Posts: 254
Joined: Apr 2012

Iriotecan was rough for my husband but only for the first 24 hours after drip.   Hair will fall out for sure.  Marinol (the Mary Jane) RX can help get you thru and aleve the nausea 

Hugs George & Dyan

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

sorry about your scan results.I did avastin with folfox,oxy, 5fu,and irinotecan,and my side effects were my hands drying,and cracking skin.I worked the whole time,but I am diebetic,and on chemo days I had to be careful what I ate,because the chemo would raise my blood sugar to over 300 if I didn't.You can do it,just keep fighting.I think of it as a war on cancer.Good luck.

geotina's picture
geotina
Posts: 2056
Joined: Oct 2009

I am so sorry for your crappy results but it appears you are ready to get going with the new chemo.  Go ahead and shed a few tears, you must be scared to death and tears are known to relieve the tension. 

Anyway, back to your question.  Since you asked, I will tell but I don't want to scare anyone, ok.  George's biggest difficulty with this drug combo, the CPT-11 and Avastin, was horrible bloody noses along with nonstop diarrhea.  No matter what we tried we could never get that diarrhea under control and thus you are constantly dehydrated.   George was also very fatigued on this drug combo some days worse than others no matter where he was in the cycle.  Hair loss, yep, he lost it all, north and south of the border.  Now for some good news, this drug combo does work very well at keeping things under control.  The dietician I talked to at the hospital suggested the following for trying to control the diarrhea:  no fresh fruits (canned ok), no fresh vegetables (canned ok), , no salads, no "grain" type bread, no tomato based food like spaghetti, chili, and the like, stay on a low fiber diet, potatoes but no frozen.  After a while, what the heck do you eat so my advise, eat whatever you want that settles well with you.  Now is not the time for strictness.  Once you see how you react to the drug you can change things up.

I wish you the best as your jouney continues.

Tina

Cathleen Mary
Posts: 562
Joined: May 2011

 

Joe,  

I have no experience with this combo but I do want you to know that I will pray all goes well. I am sorry that you have to go thru this. Your strength and positive spirit have helped me and others ....and will serve you well once again. 

I will mention your name to God everyday.

Cathleen Mary

 

 

thxmiker's picture
thxmiker
Posts: 1216
Joined: Oct 2010

We are sending our thougths and prayers for you Joe! 

 

My experience with Folfiri w/Avastin was extreme nausea and diarrhea.   This information was given to me by a GI Surgeonn friend. He was correct! It seems counter intuitive but adding a lot of fiber to my diet made the diarrhea less severe. I ate a cup of oatmeal every morning. What it does is slow the bowels down and allowed me to get nutients and callories from my food. If I had diarrhea mid day, I would make another cup of oatmeal and usually this would slow down my system. Made my stools less acidic, and less painful.  Lomotill will be your friend. Lomotil will slow your bowels down and make them less acidic. 

 

You will have a lot of hair thinning.  In my case the ship had long left the harbor, and was not a large deal for me. lol

I stilll have the blooody nose, and it is slowly going away. Using a netti bottle is supposed to help the nose clear up.  Mine was never really bad, and I have dealt with it. 

 

There is a loss of energy.  Folfox was worse for me as far as being exhausted all of the time. 

 

I ate only fresh fruit and vegtables during and after chemo. (Med Diet) I juiced every other day for the added nutrients. We drink a lot of store purchased juice also. I had exceptionally less diarrhea once I added the Oatmeal. (Stone cut oats and cooked in a rice cooker. about 35 min.  Real Oatmeal and not boxed/processed stuff.)  My wife did not like Oatmeal before we started having Stone Cut Oats for breakfast. She now has oatmeal almost every morning for breakfast. lol  

Four weeks after finishing Folfiri w?Avastin my energy is back. I am walking again.  I made an nice vegtable and salad gardens in our back yard.  Folfox took me a lot longer to get my energy back.

 

Best Always,  mike 

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

My husband Pat has had 6 treatments of Folfiri/Avastin/5FU.  He started this after getting no positive results from CPT-11 and Erbitux.  A recent CT scan of the chest, abdomen, and pelvis, showed some very significant "shrinkage" and no new spread, best news we had in a long time. The worst side effect he is feeling is nausea, dry heaves, and headaches. He does have some very bothersome skin issues but I think that is a leftover from the Erbitux.  He gets this combo every other Friday with the 5FU pumped attached till Sunday.  And, he is still able to go to work, although he may occasionally miss a day or two because he is feeling wiped out.  

Wishing you all the best,

Ellen

 

renw's picture
renw
Posts: 282
Joined: Jan 2013

I docmented my folfox and folfiri experience. 
http://www.mcrc4.com/?p=56

Basically hair loss, blood noses, constipation in my case due to leokuvorin in folfiri, greater nausea than with folfox, fevers, hot flushes during IV, change in taste, mouth sores.

javiero
Posts: 6
Joined: Jan 2013

Hi there, 

I was on FOLFOX + Cetuximab and no I am no FOLFIRI + Cetuximab. For me FOLFIRI has less side effects. 

After about 5 days I can do exercise, ride my bicycle and have a kind of normal life. 

Negative side effect for me are: hair loss, diarrhoea, and nausea the firs 2-3 days.

For the hair loss I cut my hair really short, for the other 2 ask your doctor for medication, there is plenty of good stuff out there to overcome those.

 

All the best!

Javier

javiero
Posts: 6
Joined: Jan 2013

Hi there, 

I was on FOLFOX + Cetuximab and no I am no FOLFIRI + Cetuximab. For me FOLFIRI has less side effects. 

After about 5 days I can do exercise, ride my bicycle and have a kind of normal life. 

Negative side effect for me are: hair loss, diarrhoea, and nausea the firs 2-3 days.

For the hair loss I cut my hair really short, for the other 2 ask your doctor for medication, there is plenty of good stuff out there to overcome those.

 

All the best!

Javier

Kathleen808's picture
Kathleen808
Posts: 2301
Joined: Jan 2009

Joe,

You are a fighter and my prayers is this combo will kick some cancer butt.  Dick was on that combo for quite some time (I think 2 years) and it was affective keeping the lung mets from growing.  The big issue for him was diarrhea.  Have your doc get on this right away.  Stay hydrated.

Keep us posted friend.

Aloha,

Kathleen

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

VERY sorry to read this Joe, especially after reading the post from SteveD about his issues.  FOLFIRI + Avastin is my next chemotherapy option IF the Removab plus chemoembolization (done in Germany) don't show results on my next CT scans (planned for mid-June).  I am currently back on Avastin and Xeloda (1000mg/day continuous, which is called metronomic chemo), based on the recommendation of my Hallwang doctor (Dr. Kopic).  I was off all systemic chemo for approximately 5-6 weeks with my Germany trip, and was instead doing Removab, chemoembolization, and a lot of immune boosting infusions.  I am currently taking most of those same treatments orally now that I am back in the US.  Dr. Kopic also has me on metformin.  Prior to going to Germany, I had been on just 5FU + Avastin for about 6-7 weeks as a maintenence chemo after having to stop oxaliplatin due to neuropathy.  I was pretty much stable on the maintanance chemo, but there may have been some slight progression of the peritoneal mets.  I am most worried about the peritoneal mets, so hopefully they are still under control.  I'm a bit worried since I have been having some new abdominal issues (discomfort and gas, mainly at night) since getting home from Germany, but that could be due to the Xeloda, the metformin, or one of the many supplements that I am on.  I'll know for sure when I get the CT scans, but Dr. Kopic recommended waiting ~6 weeks before getting them (on May 11), and quite frankly I am waiting until after Father's Day (taking my 3 oldest boys to a NASCAR race that day).  Don't want any potentially bad news to spoil our day...  Best of luck to you, and I will be hoping and praying for the best for you and SteveD (and everyone else on here as well).

Tedd

Chelsea71
Posts: 1170
Joined: Sep 2012

Tedd - Thanks for the update. Have been wondering how you're doing. Enjoy the NASCAR race.

Joe - Steve had a relatively easy time with Folfiri and avastin. No nausea (providing he had the dexamethasone), diarrhea, constipation etc.... Fatigue on the day following disconnection. Good luck.

Chelsea

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I have not been on the site much recently, mainly due to seeing posts like steved's and Joe's.  Not a good reason to avoid teh site, but I find it hard to come here and read bad news about good people. 

Tedd

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Joe
I have followed your posts as a newbie and admire your positiveness
to others and strength.
I finished folfiri 7 weeks ago -didn't help my liver but recently hes sirspheres treatment.
I just wanted to say I am thinking of you and many others.
Keep us posted on how you are doing.
I dont post much but in August I have a pet scan.
I hate cancer and hearing this news.
Barb

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