Folfiri hitting me hard!

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Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Folfiri hitting me hard!

Postby Badass » Sat Jan 25, 2014 3:20 pm

I think I just had #7... disconnect was yesterday. The fatigue and nausea are really intense. I feel like I can smell/taste the 5FU which worries me. Is it just going to get worse with each infusion? 5 more to go. Trying to hydrate myself really well.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Folfiri hitting me hard!

Postby BrownBagger » Sat Jan 25, 2014 3:33 pm

rusuja wrote:Is it just going to get worse with each infusion?


Ooooh, sorry to hear that.

I don't think it will necessarily get worse with each infusion. I had that experience on oxi, but I've noticed with Irinotecan and Xeloda (basically Folfiri), I get different in-my-face side effects with each round. For awhile, it was bowel issues. Lately, more nausea and stomach issues. Cannabis really, really, works well for me on the nausea. Alternatively, you might ask your onc for a script for Marinol.

One of my biggest complaints is that I have trouble staying warm. Great winter for that!
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Folfiri hitting me hard!

Postby NWgirl » Sat Jan 25, 2014 3:53 pm

Brown bragger - do you smoke the cannabis? After this last round I'm ready to try it. I've been so freaking sick.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Folfiri hitting me hard!

Postby BrownBagger » Sat Jan 25, 2014 4:11 pm

I don't smoke it because I have lung involvement. What I do is make a tincture with pure grain alcohol. A tablespoon will fix you up for about 12 hours and, at least in my experience, offers immediate and complete relief.

Google "green dragon recipe" for a variety of methods for making it. Personally, I just grind, bake, soak for 48 hours and strain through a coffee filter. One tablespoon in a small glass of juice (and it's your turn to get baked).

It's not a lot of alcohol, though if you have liver involvement and are paranoid about the alcohol, you can boil it down to just the drug, basically.

Smoking it works just as well, though it doesn't last as long.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: Folfiri hitting me hard!

Postby janderson » Sat Jan 25, 2014 4:23 pm

It was always different from one treatment to the next for me. Some worse than others. Some side effects more intense than others. Sometimes nausea sometimes diarrhea. Sometimes both. Always fatigue but sometimes worse than others.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

jman111111
Posts: 1
Joined: Tue Sep 10, 2013 2:26 pm
Facebook Username: john.stroum

Re: Folfiri hitting me hard!

Postby jman111111 » Sat Jan 25, 2014 4:35 pm

Hi,
Everybody is different in the way they react. I just finished number 21 since April of last year. Last week had a reaction to oxali (hives). Switching to irinotecan to add to my folfox 6. It seems to get easier for me as time goes on. Don't know if that's good or bad. The only issues I had were neuropathy and nausea once. Glad to be off oxali. Good luck
j

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Folfiri hitting me hard!

Postby Badass » Sun Jan 26, 2014 3:19 pm

Thanks for all the responses. Marijuana is a fine idea but I found in my youth that it made me anxious rather than mellow. I think that is a not uncommon effect. I would still be open to trying it again if it were readily available but I don't feel like involving my young adult children.
I am not sure if it is the Irinotecan or the 5FU-- I swear that little ball of 5FU infuses quickly and leaves me with a chemical smell and taste!
Today I tried my clonazepam (a benzo like ativan but milder) and that seems to have helped a lot with the nausea and misery. Just makes me sleepy but that's ok. New puppy keeping me on my toes but luckily I have had help with him these past couple of days.

Jane

P.S. BROWNBAGGER-- Stay warm! This is a tough year! I was doing fine till the wind kicked up a bit yesterday and the clouds came out. The end of the week should bring some relief.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Folfiri hitting me hard!

Postby BrownBagger » Sun Jan 26, 2014 3:28 pm

rusuja wrote:The end of the week should bring some relief.


I've been thinking and saying that all winter. So far.

I get windburn really easily now, so I have to be extra careful.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Folfiri hitting me hard!

Postby Badass » Sun Jan 26, 2014 3:32 pm

Well let's hope it's true this time around!
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Folfiri hitting me hard!

Postby Guinevere » Sun Jan 26, 2014 8:38 pm

I will have my 9th round on Tuesday and I've found the fatigue is worsening. I think it's cumulative. I haven't had a problem with nausea. But my taste buds and sense of smell have started to be whacked count. The "smell" of iceberg lettuce and margarine instantly make me nauseous. There are other things but, to me, that's the craziest. The hand/foot is getting worse with every infusion. I've started taking B6 and am hoping it will start easing some of the h/f problems. All my other tricks haven't been working as well this time around.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Folfiri hitting me hard!

Postby michelle c » Sun Jan 26, 2014 8:44 pm

I was very sick on FOLFIRI too so I can empathise with you if nothing else :D Lorazepam is an anti-anxiety med meant to help with chemo related nausea. I would take one prior to chemo and then to help me sleep for night 1 and 2. I'm afraid that I could never really get on top of my nausea despite taking meds - who knows? - maybe if I didn't take them it might ave been worse.

I sometimes started to feel the effects before I got home and sometimes it was a few hours later. Day 2, when I woke up - it had really set in. Days 1-3 were the worst for me. My taste buds were affected and I remember that chemical taste/smell too. Irinotecan really plays havoc with the digestion system. I don't think that any two cycles were quite the same for me. I guess I expected to feel sick and wasn't really proactive in this area - I would suggest you really talk to your onc to see if there are other meds that may help. I didn't drink much because of the nausea but I'm now convinced that hydration will help with the symptoms. Unfortunately, I didn't find this board until after my treatment.

Fatigue was also an issue - I didn't have any energy - felt like I was dragging myself around. I understand that this is cumulative but it will start to slowly improve when chemo is finished. You are almost three quarters of the way through - you're on the downhill run now. Try to focus on that. I don't think that you will necessarily feel worse with each infusion. Hang in there, you can do this. :)

Best wishes and thinking of you,

Michelle xox
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Folfiri hitting me hard!

Postby Badass » Sun Jan 26, 2014 8:50 pm

Thanks, Michelle, I find your reply encouraging. My clonazapam is in the same family as your Lora zap am and has done wonders for my nausea. I am reassured to hear that you had that chemical taste too because I find it freaky. Today was much better once I started on the clonazapam...just a cozy sleepy blur on the couch, puppy at my side. Thankful for a family that let me go totally off duty.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Folfiri hitting me hard!

Postby michelle c » Sun Jan 26, 2014 9:12 pm

I'm so glad that clonazepam is helping you. I just remembered that ginger is meant to be an anti emetic - I wonder if ginger tea might help also with the nausea. That chemical taste/smell is definitely related to chemo but it will start to lift once you're finished. My family were good too - didn't have a puppy though - sounds lovely for you - and very cute! :D

Hugs to you :D
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair


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