mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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ConnieSPK
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby ConnieSPK » Thu Mar 13, 2014 2:41 pm

Hi everyone, I haven't been around much lately, have had 2 good CT's, 3 months apart....so far, surprisingly good (to both me and my onc). At this point, I was told I would normally be on maintenance, but I started having problems with 5FU during the last chemo.

Gwen,

Other than the issues accessing the site at the beginning, there is nothing to fear from the Healthcare.gov website.....a lot of bluster and propaganda was put out to confuse folks. As long as you have your own computer's security up to date, you're fine (I'm an ex-computer systems-type person by profession). If still not comfortable with it, you can use the 800 number available at the site.....your state may have it's own page for you to use. Anyway, I'm not trying to push you or anything, just trying to help.

Ashlee,

I was in the Zaltrap club with you and it was miserable, I was not unhappy at all when my 5FU issue forced me back to Avastin.
My new onc told me he isn't a Zaltrap fan. Even though Zaltrap targets 3 thingy-whatevers whereas Avastin targets only one, I think the medical community may have come to the conclusion that Zaltrap doesn't provide a good enough survival improvement over Avastin to justify the side-effect risks.

Regards,

Connie
Dx08@54,StgIV Colon,Liver,Lung, ColonSurg,FOLFOX+Beva
09 LiverSurg
10 FOLFIRI+Beva
11 FOLFOX+Beva,ox reaction
12 Bi-lat LungVATS
13 New mets L lung FOLFIRI+Zaltrap,5FU reaction
14 Return mets L lung SBRT,successful
15 Lung Spots, Irinotecan

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Guinevere
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Fri Mar 14, 2014 10:53 am

Ashlee,
I've noticed that folks aren't talking so much about Zaltrap too! I know it did a number on Kathryn and scared the crap out of me. My onc hasn't even mentioned it.

Somehow, I got a 24 hour bug! The good news is that I feel better today and I'm no longer constipated. :shock: I went through one skin barrier and two pouches before things subsided. Does anyone else feel offended that they can still get the everyday mundane stomach bug or cold or something else like that when they're already fighting cancer? I know I did! Like we're not dealing with enough! :roll:

God bless ~
Gwen
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

Sharona
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Sharona » Fri Mar 14, 2014 3:24 pm

Gwen, sure hope you get over the bug! You are right, we have enough to deal without ordinary bugs.

Connie, I am scheduled to have my second round of FOLFIRI + Zaltrap on Monday. So far I haven't noticed much difference from the Avastin, but it is probably too early to tell. Hopefully, my CEA will drop and the lung mets will decrease. Ashlee is the only one I know who has been on it and she did not like it.

Saw the neurosurgeon yesterday for a brain MRI. He is increasing my anti seizure meds and warned me that it may take a few weeks for my body to adjust and I will probably be fatigued. How much more fatigued can one get? I am beginning to feel like Rip Van Winkle!

It is finally beginning to look like spring here. Enjoy the weekend.

Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
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Candyys03
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Fri Mar 14, 2014 9:57 pm

I haven't been on Zaltrap but my oncologist said it's he same as Erbitux and irinotecan. What I heard about it from Kathryn I really don't need to go there.

Gwen,
I get colds or get sick a lot from my grand daughter. Unfortunately even with the killing chemo, vitamins, smoothies, etc... I still get sick.

Busy Ma Ma,
I have never heard of treatment at home unless you are on Palliative care or Hospice. Some people can get fluids t home but not chemo.
For me in California Social Security Disability will not cover home care unless you are no longer able to go or walk in to your medical facility.

Jane,
I did not keep my first surgeon but I got a better one that has been with me since right after the colon surgery in 2006.

As Ashlee said
[quoteHowever FOLFIRI was killing me fasting than the cancer.][/quote]
Toxic just means it can kill you instead of the cancer.

Webster's Dictionary
Toxic
1 containing or being poisonous material especially when capable of causing death or serious debilitation <toxic waste> <a toxic radioactive gas> <an insecticide highly toxic to birds
2 exhibiting symptoms of infection or toxicosis <the patient became toxic two days later

I have been on chemo of Erbitux and Irinoteacan many times and sometimes I have ended up I the hospital.
It just happens to work on me. I get a lower dose now. My oncologist is trying to find the best dose for me without sending me to the hospital.

Candy
DX8/0642yrIVCCmtsliver
9/06opcol+lymps
07oxy
08livernonop
08iri+erb
1/09opliver
NED11m
12/09lungmts
3/10livermts
NED7m
2/11lungmts
4/11NED3m
5/2Xel
9/26lungop
NED6m
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11/27avas+ox
7/13Stivarga
10/28irierb
1/17
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Ashlee H.
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Fri Mar 14, 2014 10:41 pm

Guinevere wrote:Somehow, I got a 24 hour bug! The good news is that I feel better today and I'm no longer constipated. :shock: I went through one skin barrier and two pouches before things subsided. Does anyone else feel offended that they can still get the everyday mundane stomach bug or cold or something else like that when they're already fighting cancer? I know I did! Like we're not dealing with enough! :roll:


I so agree. I got some sort of crud that most people get over in 3-5 days. I'm going on over 2 weeks and still coughing, but lungs are fine. I think it has something to do with the Avastin side effects and now that I'm off of it, it is just still trying to get out of my system.

Tonight I got a call who wanted to talk to the "lady of the house". She heard me fine as I told her I was that lady. She started her spiel about Breast Cancer and asked if she could count on my financial support (isn't March COLON CANCER month?). I said, "No, I have Stage IV COLON cancer". Her response? "I can't hear you, I'll try to call back later." Boy, that's a new line. I know she heard me just fine. Just really irked me tonight. Can't the pink people let us have one month? -Ashlee
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!

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Guinevere
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Sun Mar 16, 2014 1:55 pm

Ashlee H. wrote:
Guinevere wrote:Somehow, I got a 24 hour bug! The good news is that I feel better today and I'm no longer constipated. :shock: I went through one skin barrier and two pouches before things subsided. Does anyone else feel offended that they can still get the everyday mundane stomach bug or cold or something else like that when they're already fighting cancer? I know I did! Like we're not dealing with enough! :roll:


I so agree. I got some sort of crud that most people get over in 3-5 days. I'm going on over 2 weeks and still coughing, but lungs are fine. I think it has something to do with the Avastin side effects and now that I'm off of it, it is just still trying to get out of my system.

Tonight I got a call who wanted to talk to the "lady of the house". She heard me fine as I told her I was that lady. She started her spiel about Breast Cancer and asked if she could count on my financial support (isn't March COLON CANCER month?). I said, "No, I have Stage IV COLON cancer". Her response? "I can't hear you, I'll try to call back later." Boy, that's a new line. I know she heard me just fine. Just really irked me tonight. Can't the pink people let us have one month? -Ashlee


That's another of my pet peeves now. What are they advertising during Colorectal Cancer Awareness Month? The 3 day walk... :evil: I have had family members and friends with breast cancer but, dadgum!, there's a pink table at the cancer center. NO PSAs on TV or radio about getting a stool sample tested for colon cancer. I think the population at large is aware of breast cancer and how to get tested, etc. More people don't know about colon, rectal and anal cancer and it's actually more prolific! End of soap box...
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

jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Sun Mar 16, 2014 9:59 pm

yes agree - they even have the undie tee shirt in pink not blue. oh boy is it a pet peeve. :shock:

I donated to a blood cancer cause and yicks all the cancers sites come begging. Not something I want but they even call and tell me they need my support. I ask them how they can support me and they hang up! darn it.

I am going to enjoy the bar tomorrow. I will have one sip of rattle snake beer and let the family enjoy the Irish stout - I enjoy the free corn beef and turnips. yum. :P

hugs to aLL HOPE YOUR ENJOY A LITTLE IRISH FUN - ORANGE OR GREEN. :shock:
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

janeandrea
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby janeandrea » Mon Mar 17, 2014 11:12 am

Candyys03 wrote:
Jane,
I did not keep my first surgeon but I got a better one that has been with me since right after the colon surgery in 2006.

Toxic just means it can kill you instead of the cancer.

Webster's Dictionary
Toxic
1 containing or being poisonous material especially when capable of causing death or serious debilitation <toxic waste> <a toxic radioactive gas> <an insecticide highly toxic to birds
2 exhibiting symptoms of infection or toxicosis <the patient became toxic two days later

I have been on chemo of Erbitux and Irinoteacan many times and sometimes I have ended up I the hospital.
It just happens to work on me. I get a lower dose now. My oncologist is trying to find the best dose for me without sending me to the hospital.

Candy



Candy, I know what the word "toxic" means. :) All chemo is toxic to some degree or another. What I meant is what does toxic look like to you? What happens to you and how long does it last?

Jane
12/07 dx RCA3C
2/08 FOLFOX
2/08 bad rad, ER ileo
4/08 LAR
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
11/12-10/13 break
10/13-1/14 xel/avast
1/14 irinotecan
2/14 Stop all

jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Mon Mar 17, 2014 12:41 pm

toxic is the same as 'general deteriation' which is what I feel on this Vectitux infusion/chemo. Not fun and my quality of life is a bit less. Oh well. Happy St Paddys day, going to a family bar for some corn beef and rattlesnake beer. A few sips as I don't think I can do a whole cup!

:D
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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pollo65
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby pollo65 » Mon Mar 17, 2014 4:03 pm

Çt this morning and I immediately read results online. Unremarkable, what is there hasn't grown or shrunk...only problem is that my spine is degenerating. I should be doing a happy dance but I am just plain fatigued.
Anyway I have no reason to gripe (sorry.) By the way do you ev er think about how many times you ha ve been stuck (with a needle) since you began this journey? I always bated needles but now they are just a way of life. I have had blood draws x4 this month and Ct contrast and apparently I wince when stuck so everyone apologizes and I alway wind up apologizing for being a baby. I don 't think your average person can even imagine what we go through (not my family or friends anyway.)
Enough of this, miss you all and sorry for the whining.
pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

Badass
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Badass » Mon Mar 17, 2014 4:14 pm

Pollo, that's ok, I am doing the happy dance for you!! :lol:
And yes, it's those moment by moment less dramatic parts of the cancer routine that can really, really get to you.

Jane
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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Candyys03
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Mon Mar 17, 2014 9:48 pm

Pollo,
Dong the Happy Dance for you!

Jane,
Sorry, I have a bit of chemo brain and it throws me off sometimes.

If you have just started on your first or second chemo it takes about 3 weeks for the chemo to get out of your system. When I get Erbitux and Irinotecan it takes 3 months or more to get out of my system because I have been on it so many times. I get all of the side affects and when I get them they are worse/stronger on me than other people that have the side affects. Basically the chemo takes over my body. Erbitux gives me an upset stomach, vomiting, a rash everywhere- head to toe, dry skin and dehydrated. If I don't schedule or go in for dehydration (extra fluids/ hydration) I end up in the hospital getting hydration due to low blood pressure, low white blood cell counts and or low potassium. To add to its the severe diarrhea (literally green liquid) from the Irinotecan .The lomitil and Imodium together don't work for me anymore.You lose everything-fluids (dehydration), food, vitamins, weight, energy, hemorrhoid's, etc... I am taking some new diarrhea medicine now but even on a low dose I got severe diarrhea the 4th week. I am also on Coumadin warfarin, blood thinner and my blood will get really thin which can bleed out in the toilet also making the hemorrhoid's bleed more. I have many issues.
I did 3 weeks of regular dose of Erbitux and Irinotecan in November and I ended up hospital for 4 days because of neutropenia (low white blood counts) and diarrhea.( I waited too long to get hydration.) The chemo reduced my large tumor in my left lung 1 centimeter. Its better than nothing-I'll take it. I did a low dose in January for 4 weeks but I scheduled hydration. My oncologist wanted me to do six but I have a wound on my leg, and after the 4th week severe diarrhea and all of the other side affects took control of me even on half the dose.I still have the rash in places and my skin is very dry. It is toxic, poison to me but it still works. I asked for time off so I will start again on the 26th. I will do at least 4 weeks. After 3 or 4 months I will have a CT scan. Sometimes I go to ER to get hydration and get to go home other times a am admitted to the hospital sometimes for a few days and sometimes longer.


Candy
DX8/0642yrIVCCmtsliver
9/06opcol+lymps
07oxy
08livernonop
08iri+erb
1/09opliver
NED11m
12/09lungmts
3/10livermts
NED7m
2/11lungmts
4/11NED3m
5/2Xel
9/26lungop
NED6m
3/12lungmtsirierb
11/27avas+ox
7/13Stivarga
10/28irierb
1/17
caringbridge.orgcandyllamas

jeanette57
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Tue Mar 18, 2014 1:54 am

I did an Irish jig for you today. I had a sip of beer and family came and ate turnips and corn beef and cabbage. Oh yum. Got so much teasing that I had no hair in a light hearted way. They were adding green stipe's on people but not me. Not even some fuzz yet.

Great music, good food, family happy, lots of kisses and hugs (tried the mask but failed) so hope no bugs! Still high at midnight. May the roads be smooth this week and golden hearts treat you kindly! :D
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Candyys03
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Tue Mar 18, 2014 2:23 am

Jeanette,
LIKE!
:lol: :lol: :lol:

I'm glad you had a Happy St.Patricks Day!!!

Candy :wink:
DX8/0642yrIVCCmtsliver
9/06opcol+lymps
07oxy
08livernonop
08iri+erb
1/09opliver
NED11m
12/09lungmts
3/10livermts
NED7m
2/11lungmts
4/11NED3m
5/2Xel
9/26lungop
NED6m
3/12lungmtsirierb
11/27avas+ox
7/13Stivarga
10/28irierb
1/17
caringbridge.orgcandyllamas

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Bev G
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Bev G » Tue Mar 18, 2014 7:08 am

Jeanette, you are simply an incredible woman! Sending you love and hugs.

xox

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now


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