Anyone have folfiri - when did you have treatment break?

Bellen

Hi all - Would anyone who had or is having folfiri (believe same as folfox cocktail but with irinotecan instead of oxyplatin) + Avastin please let me know when you might have had a break.  I will be having my 12th treatment this week, and have been talking about a break.  How long did you go before a break, and how long was your break?  Just wanted to hear what other group members did before I see my Onco next week, as we are talking about a break soon.  Wondering if I should keep going, and put it off until the weather gets a little warmer here, so that I can enjoy the summertime, and not feel all the side effects that I do - having it biweekly doesn't give much time to  recoup before I sm back at it again, plus having WBC shots, which give bone pain - hopefully wouldn't habe to have if I take a break.  Did anyone just have an extra week off (making it every 3 wks) instead of biweekly, and did you feel pretty good.  Thank you for your response.  Best to all.  

vtspa6

I would imagine it would be

I would imagine it would be decided what your scans show, where the cancer was ect.  My husband is on folfiri now, before it was folfox.  He just finished his 38th continual treatment (1 1/2 yrs).  His Dr. told him even tho the chemo is working and no cancer is showing up he cannot stop.  He said the cancer would come back if he did.  He is stage 4.  My husband would love to take a break from this too!  Good luck!

Bellen

Vtspa - folfiri break

Hello vtspa - I have CRC with multiple liver mets. I had a scan at #6 - said numerous lesions still, but marked reduction.  Having scan after 12 (soon).  

Where are his mets? Is his chemo biweekly - some have extended to every 3 wks after a while.  My Onco is saying I could have a break soon - not sure how long he means. Does your husband have any specific side effects from the chemo cocktail?  And how is he handling them?  And is he having the full folfiri cocktail?  I also have avastin at the beginning of treatment and the 5fu bottle for two days following, so really it's every 12 days.

 I also have been having neupogen shots for low WBC, so this aggravates the side effects with spinal, sternum bone bone, crappy feeling in stomach.  Using tylenol, but thinking of trying claritin.  Not sure what other issues are related to the shots, as the chemo cocktail has so many side effects on its own, as you know, so don't know where to place the "blame".  Not that I can't handle everything, but lots of ups and downs, and don't know how will feel day to day.  Been out of breath more lately for few days (last few treatments - said platelets are low).  Wondering if even one treatment date delay would make a world of diff on tumour growth, as even that would be a nice little break for now.  I did have one wk delay when my WBC was too low early on, and I know some have to delay due to illness, mouth sores, WBC counts, Etc.  Wishing best wishes to your husband, and thank you for responding.  

IcyMoonstone

Folfiri here

I just had my first break from folfiri at it was when I should have had #17 treatment.  I am switching to Xeloda.  I have been taken off the IRI part back at #13 because I responded so well to treaments.  They tell me I will never be off the stuff either.  The pusher for the break was my anemia was draining all my energy.  All I did was sleep and work.  I couldn't do anything more.  I am doing better now that they have the anemia temporarily under control.  Plus I am doing acupuncture to help with that and I can feel a difference which is nice.

Bellen

How long break

Hi Icymoonstone - How long of a break did you have?  Even one treatment delay (have biweekly) would give me a bit of time when I might feel more "normal" - lol.  Just wondering what to expect.  I know my treatment is probably going on forever.  I think my Onco would give me a break just so I could have a little better quality of time for a bit.  

IcyMoonstone

my "vacation"

My break was just one treatment.  And next treatment day I am moving over to Xeloda to see if that helps.  I just hate wearing that pump and because my treatment is over a weekend, I am losing every other weekend.  And that STINKS.  So I want my weekends back for a better quality of life.  I am hoping I iwll have less fatigue on the first week and can start riding horses more, again. 

Bellen

Treatment break

Yes, I know what you mean.  I was having my treatment on Friday - pump off on Sun.  Took up my whole weekend (didn't go out Fri with pump on, plus felt awful because up all night of chemo due to total of 4 steroids (told these really affect sleep, but are needed for nausea). Also two nausea pills that day, two atropine shots for cramping from irinotecan, and then take two steroids and anti-nausea pills again next day.  So that is my "weekend" - got chemo started on Thurs so helps a bit, but feel pretty crappy that first weekend, plus 24 hrs after pump off have WBC shots for 5 days in row (they have main side effect bone, spinal, sternum pain - take tylenol throughout to help) - next weekend is mostly better, and then back at it again.  For those of us on 5Fu pump, chemo earlier in week would be so much better.  Think my Onco clinic days are Thurs, Fri unfortunately.  Should really check this to be sure.  

Even one week break now and then would hopefully give me some better days.  So going to ask for at least one off right now, and maybe again a bit in "our summer" - live up north. I wouldn't think a break like that would have a really negative effect, as some have to have break during treatment due to sickness, flu, colds, Blood counts off, etc anyway.  I had a one week break my second treatment due to very low WBC counts.  All the best.

Bellen

Just xeloda?

Hi IcyMoonstone - Sorry one more question - Your treatment change to xeloda - will you be having any other chemo/other to go with the xeloda, such as avastin.  And what would be the time frame - I read that those who have xeloda take pills for 2 wks on and one week off.  I know some tolerate xeloda quite well.  I wonder if some have this as a maintenance dose - and would it be appropriate if someone was taking a break from folfiri + avastin to take xeloda plus ? while on a little longer break, and then start back onto the folfiri later.  Would you be going back to folfiri at some point?  Not sure if my Onco is thinking taking "nothing" on my break.  See him this Thurs next treatment.  Lots of questions.

IcyMoonstone

Bellen said:

Just xeloda?

Hi IcyMoonstone - Sorry one more question - Your treatment change to xeloda - will you be having any other chemo/other to go with the xeloda, such as avastin.  And what would be the time frame - I read that those who have xeloda take pills for 2 wks on and one week off.  I know some tolerate xeloda quite well.  I wonder if some have this as a maintenance dose - and would it be appropriate if someone was taking a break from folfiri + avastin to take xeloda plus ? while on a little longer break, and then start back onto the folfiri later.  Would you be going back to folfiri at some point?  Not sure if my Onco is thinking taking "nothing" on my break.  See him this Thurs next treatment.  Lots of questions.

Not just Xeloda.  I imagine I

Not just Xeloda.  I imagine I wll get all the pre-chemo iv's (antinausea, anti heartburn, steoids) and then a does of Avastin and then two weeks of Xeloda 2x a day for two weeks with one week off.  I am hoping it is easy for me and then I can live my life a little bit more. 

When the pump is on my for FOLFIRI I don't want to go out, I don't want to move.  I lay on the couch and watch crap tv.  I hate having it on me and I feel terrible for 48 hours after.  I am tired and non-functioning and then suddenly I start returning to normal.  I just want a better quality of life than the pump can give me.  I want to be able to go out and have fun.  Maybe be able to go somewhere on a vacation, etc.  I will probably be back on FOLFIRI at some point but I want some time having fun while not ignoring the cancer. 

I hope that helped.

 

vtspa6

Bellen said:

Vtspa - folfiri break

Hello vtspa - I have CRC with multiple liver mets. I had a scan at #6 - said numerous lesions still, but marked reduction.  Having scan after 12 (soon).  

Where are his mets? Is his chemo biweekly - some have extended to every 3 wks after a while.  My Onco is saying I could have a break soon - not sure how long he means. Does your husband have any specific side effects from the chemo cocktail?  And how is he handling them?  And is he having the full folfiri cocktail?  I also have avastin at the beginning of treatment and the 5fu bottle for two days following, so really it's every 12 days.

 I also have been having neupogen shots for low WBC, so this aggravates the side effects with spinal, sternum bone bone, crappy feeling in stomach.  Using tylenol, but thinking of trying claritin.  Not sure what other issues are related to the shots, as the chemo cocktail has so many side effects on its own, as you know, so don't know where to place the "blame".  Not that I can't handle everything, but lots of ups and downs, and don't know how will feel day to day.  Been out of breath more lately for few days (last few treatments - said platelets are low).  Wondering if even one treatment date delay would make a world of diff on tumour growth, as even that would be a nice little break for now.  I did have one wk delay when my WBC was too low early on, and I know some have to delay due to illness, mouth sores, WBC counts, Etc.  Wishing best wishes to your husband, and thank you for responding.  

His mets were in his lungs,

His mets were in his lungs, he had 30 spots in all lobes and some lymphnodes.  That is why he could not have any surgury.  The chemo has gotten rid of the tumor in his colon/rectum and all the spots in his lungs except a small spot is still there.  His lymphnodes are clear.  The Dr said it was an agressive cancer and he does not want him to take a break.  He gets the chemo every other week, after the infusion he brings home the pump.  He got nerothopy in his feet, hands, & mouth.  Other side effects are lightheadeness, no taste, and just wears out fast.  If he does anything real physical he is sore for days so he has stopped that.  Anyways, our life is chemo week and not chemo week!  What fun!

vtspa6

IcyMoonstone said:

Not just Xeloda.  I imagine I

Not just Xeloda.  I imagine I wll get all the pre-chemo iv's (antinausea, anti heartburn, steoids) and then a does of Avastin and then two weeks of Xeloda 2x a day for two weeks with one week off.  I am hoping it is easy for me and then I can live my life a little bit more. 

When the pump is on my for FOLFIRI I don't want to go out, I don't want to move.  I lay on the couch and watch crap tv.  I hate having it on me and I feel terrible for 48 hours after.  I am tired and non-functioning and then suddenly I start returning to normal.  I just want a better quality of life than the pump can give me.  I want to be able to go out and have fun.  Maybe be able to go somewhere on a vacation, etc.  I will probably be back on FOLFIRI at some point but I want some time having fun while not ignoring the cancer. 

I hope that helped.

 

My husband feels the same way

My husband feels the same way with the pump, doesn't go out and feels sick for a couple days after he gets it off.  I noticed you said that you could go back to Folfiri at some point.  We were told once you are off a chemo treatment you cannot go back to that specific treatment.  Dr.'s told Tim he could never go back to Folfox and if he quit Folfiri he could not go back to that one either.  I forgot what the reasoning was tho.

Bellen

14th folfiri - one treatment break

Hello all - Would anyone else who had folfiri chemo + avastin please let me know whether you had a treatment break and for how long.  Wondering also if anyone had their chemo changed from folfiri to folfox because your Onco thought it would be more effective. I have had 13 folfiri + avastin, and I believe my Onco plans for me to continue on folfiri - 12th treatment scan reported slight reduction in small liver tumours, but not much in larger tumours, but Onco said good thing was nothing new showed.  6th treatment scan said tumours were "markedly reduced", so I personally felt much better about results of that scan.  Thank you for all of your support and input you share.