bad news...

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
thostie
Posts: 149
Joined: Fri Jan 21, 2011 3:06 pm
Location: california

bad news...

Postby thostie » Mon Aug 06, 2012 8:07 pm

for the second scan in a row my largest liver tumor and my peritoneal lymph nodes have grown. my onc took me off of Folfiri and switched me to Folfox and Avastin. For some reason i am having tons of anxiety about switching chemos. I even took a three week break to clear my head. In my head the side effects from Folfox with be 100 times worse than Folfiri. Has anyone had an experience with switching? If so please share how they compare to each other. Thanks colon club.
Erin 28 year old mom of two
Stage IV diagnosed 11/2/10
Started chemo (folfiri + avastin) 12/2010
lung mets resolved switched to Xeloda + Avastin 10/2011
6/2012 largest liver tumor started growing again more folfiri + avastin

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: bad news...

Postby tammylayne » Mon Aug 06, 2012 8:21 pm

Hi Erin...I don't have any answers about the chemo...sorry...I just wanted to wish you well though. From what I have read on this board, everyone is different, and what one person might sail through, another person struggles....and the other way around. Try to take things one day at a time...let your docs know what you are having for side effects,,,,you know the rountine. They can often play with your dosage, or give you other meds to help...don't be afraid to ask for what you need.

I am sure others that have gone through both types of chemo will offer you lots of good advice...

Good luck....
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: bad news...

Postby juliej » Mon Aug 06, 2012 8:34 pm

Erin, have you talked to your onc about taking Xelox instead of Folfox? It would still include the nasty Oxaliplatin, but, for most people, the Xeloda is easier to handle than the 5FU pump.

Sorry you had bad news, but keep being tough. And on the days you can't be tough, there are plenty of us to be tough for you. :D
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

User avatar
Ashlee H.
Posts: 2435
Joined: Fri Oct 09, 2009 11:50 pm
Location: Southern California

Re: bad news...

Postby Ashlee H. » Mon Aug 06, 2012 9:43 pm

Erin - so sorry FOLFIRI didn't work for you. But it is good there are still other options. I really didn't start having issues with FOLFOX until about #9, and then my ONC reduced the OXI, and the OXI was eventually dropped. My ONC has always had me on B6 two times a day (some recommend 3 times a day) and I really think that helped with neuropathy issues. I hated not being able to eat cold things for a few days after chemo, but you adapt. You might surprise yourself and find FOLFOX easier than you thought.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

las
Posts: 758
Joined: Wed Jul 20, 2011 3:43 pm
Location: Houston, TX

Re: bad news...

Postby las » Tue Aug 07, 2012 12:05 am

Erin,

Sorry for the bad news, I can't speak. From experience I can only let u know what I saw in Kevin. Every round was different for him and like round 9 it didn't even phase him one bit. Round 8 well that landed him in the hospital, but I am not telling u this to scare u. I want to tell u this to let u know what made the biggest difference between the treatment he got. Starting on round 9 he was given IV fluids sent home with his 5fu pump that infused at the same time as the 5fu. It wasn't the full 48hrs but it was 30 hrs and this made the biggest difference in the world. He wouldnt do any more chemo unless he got the fluids.

I hope this helps,

Lisa
Lisa
Fiance DX 6/27/11 CC IV w/liver mets,adrenal glnd,pet.
7/25/11 folfox
8/2/11 surg.colon wall prefor.no removal of tumor
8/24/11 folfox ,3/12 5FU, 5/12 irinitecan failed, 7/12 didn't qualify regronfenib
8/13/12 Hospice, 8/18/12 married, died 9/10/2012

RixInPhx
Posts: 1904
Joined: Fri Oct 08, 2010 11:53 pm
Location: Phoenix

Re: bad news...

Postby RixInPhx » Tue Aug 07, 2012 12:14 am

Well, that just sux!!

I started with Folfox, and the cold-sensitivity issue was fairly significant.
I'm now on Folfiri + Avastin + Erbitux, and find it much easier than was Folfox.

BOL, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192

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

Re: bad news...

Postby michelle c » Tue Aug 07, 2012 4:55 am

Hi Erin,

I'm sorry to hear of your progression. I haven't had FOLFOX so I can't comment there but remember that not everyone has the same symptoms. Chemo is hard, no doubt about it. Hoping that this one will be the right one for you and will do it's job. Tell your onc about the symptoms you experience and they can work with you to help minimise them. You can do this, Erin!

Big hugs,

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

User avatar
dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: bad news...

Postby dianetavegia » Tue Aug 07, 2012 7:16 am

Erin, I'm only half awake so didn't read what the others posted and I've never been on FOLFIRI.

I was 58 when I did 12 rounds of FOLFOX. By tx's 7-12, I would sleep a lot after disconnect (that's when the 5FU reaches its max in your body) but I never threw up or had tummy issues. I had a couple of minor mouth sores and my hair thinned. YES, I have neuropathy 3 years later, but I can LIVE with that!
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

mungo
Posts: 154
Joined: Fri May 23, 2008 1:43 pm

Re: bad news...

Postby mungo » Tue Aug 07, 2012 9:02 am

I am so sorry about the scan results. I have no experience of Folfiri but I don't want you to be scared to the gazoolies about Folfox. Yes, the oxiliplatin has the side effects that have been well documented on the board but in my experience, the onc keeps a very close eye on you and adjustments to the dosage can be made. I had the neuropathy but it did pass and I found ways of dealing with it -radiators, warm showers/baths and saunas figured highly! I could feel the effects of it for about a year after ( although it steadily decreased) and 5 years out, I have no lasting effects at all.You do get very tired too. However, if it does the trick to keep those beasties under control then it's all worth it.Big hugs to you.
Stage IV
Left hemicolectomy Dec 2006
Liver resection March 2007
6 months FOLFOX
Thoractomy to remove lung met Aug 2011
NED again
"Above all,what matters is not to lose the joy of living in the fear of dying"Maggie Keswick Jencks

Bob in Watson
Posts: 15
Joined: Mon Nov 28, 2011 1:04 pm

Re: bad news...

Postby Bob in Watson » Tue Aug 07, 2012 1:46 pm

I may be the exception, but I found FOLFOX easier than FOLFIRI, mainly due to diarrhea with FOLFIRI, but, realistically, neither has been particulary bad. i have been able to work full time with either one.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 121 guests