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

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?

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

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

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 

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.

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