mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

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janeandrea
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Location: Chandler, AZ (moved here Nov 2011 from Chicago, IL)

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby janeandrea » Wed Mar 12, 2014 3:15 pm

Thanks, Candy, for the encouragement, and I do still have hope. Still, I've never been NED, and there are no more treatment options for me... :?
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

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

Postby Candyys03 » Wed Mar 12, 2014 3:47 pm

Jane,
I have been with my oncologist since the beginning. He told me in September that there was nothing else for me yet its been 6 more months. I researched everything-clinical trials, surgery, radiation, etc... Then I got a second opinion. He put me back on Erbitux and irinotecan because it works. Yes I've had issues with it as it is toxic to me. I have good days and bad days just like everyone else. I know that your cancer is different. Did you get a second opinion? Did you personally talk to your surgeon? Did you check out new chemotherapy's and or tried everything you can?
If you call the National Cancer Institute
http://www.cancer.gov/
1-800-422-6237
They will send you the clinical trials in your area and anything else you need.
You aren't far from CA. There is a place near San Francisco called Second Opinions and all they do is Second Opinions for FREE. I got my second opinion at a different location still within my Kaiser network. I wouldn't have found out about the second opinions if I hadn't done research. I called all of the hospital cancer centers near me and got quotes.
If my cancer reduces in size I have the option of surgery or other procedures like possible radiation that may work for me.
They cannot refuse treatment if you want it and they cannot tell you that you can't take a break if you want do something or go on vacation.

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

janeandrea
Posts: 314
Joined: Wed Apr 30, 2008 6:47 pm
Location: Chandler, AZ (moved here Nov 2011 from Chicago, IL)

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby janeandrea » Wed Mar 12, 2014 3:56 pm

Candyys03 wrote:....Then I got a second opinion. He put me back on Erbitux and irinotecan because it works. Yes I've had issues with it as it is toxic to me. I have good days and bad days just like everyone else. I know that your cancer is different. Did you get a second opinion? Did you personally talk to your surgeon? Did you check out new chemotherapy's and or tried everything you can?

...If my cancer reduces in size I have the option of surgery or other procedures like possible radiation that may work for me.
They cannot refuse treatment if you want it and they cannot tell you that you can't take a break if you want do something or go on vacation.

Candy


Hi Candy -

I am on my 2nd oncologist, because I moved from Chicago to Phoenix. I don't have the mutation for Erbitux so it would do nothing for me, and irinotecan (which I was on for 2 rounds) put me in the hospital for two weeks. Xeloda and Avastin stopped working. I can't have surgery, as the lesions are too many and too spread out. I can't have radiation for the same reason, with the additional reason being my largest is right up next to my esophagus and radiation would burn that.

I am tired of being sick...my bad days were so much more numerous than my 'good' days...in fact, I would say my days were/are either bad or mediocre.

I'm not really giving up, or I would join a hospice. I am taking it a day at a time and trying to live the best I can in the circumstances.
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

User avatar
Candyys03
Posts: 1381
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Facebook Username: Candy Llamas
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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Candyys03 » Wed Mar 12, 2014 5:59 pm

Jane
Have you tried Stivarga? It works for some people just not me.
I didn't mean to imply that you have or are giving up I am just sharing some possibilities to explore.
When I heard the words nothing else for me it was devastating and depressing. My relationship with my oncologist changed but that happens with any relationship. Things are better between us now. I thought he was the one giving up. My second opinin encouraged to me and gave him some ideas so here I am today.Erbitux and Irinotecan are toxic to me. I have been in the hospital more than once when on them. My oncologist is trying to figure out the right dose for me. After 3 weeks on Erbitux and Irinotecan my large tumor in my lung decreased 1cm which is better than nothing.
I finished 4 weeks on 2/4 and I will start again on 3/26.
When I was diagnosed I was given 6months to live.

I will be praying for you.
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

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Guinevere
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Location: NE TX

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Guinevere » Wed Mar 12, 2014 9:46 pm

Well thank God I wasn't given a time limit when I was diagnosed!! In fact, it was like pulling hen's teeth to finally get her to say the median survival rate is 2.5 years. I know I'm on my last chemo option because I refuse to kill myself on Irinotecan and the hateful Oxaliplatin. I've been Oxali before and it almost did me in. I'm not a candidate for surgery and don't have insurance so my choices of places to go are limited and I'm fine with that. I don't qualify for anything and am afraid to put my personal information on the Obama are site. All this is to say, sometimes, there's nothing more to be dine or the choices are so bad that you'd rather take your chances with the cancer. At least that's what I've come to.

Candy, it was a blessing to know you & Allie got to have such a wonderful trip! I was living vicariously through you guys. :mrgreen:


I love the new song "Happy"! I've already told DH that I want "Amazing Grace (My Chains Are Gone) by Chris Tomlin, Mercy Me's "I Can Only Imagine" and Bette Midler's "The Rose" at my funeral. I'm working putting pictures in a folder for the funeral video as well as songs for that. I do a little at a time. Sometimes, it's way too emotional for me. I may use the "Happy" song on the video.

On that cheery note, I'll sign off for tonight. Hope everyone who's going to get bad weather doesn't have to get out in it!

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

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Mar 12, 2014 9:54 pm

FYI
http://www.cookforyourlife.org/ --THIS IS THE CORRECT WEBSITE - SORRY

I am sorry, high on steroids, had chemo today and not thinking. I couldn't even figure out how to get there. So this is Colon Cancer month and they have great things. check it out for eating for cancer. Great site and supports us in this journey,

On chemo days, I use a soup they made it so easy and so good. 4 yellow squash, 1 large onion chopped in 4 sections, 5 garlic pieces, chicken or veggie stock. basic.

dump in pot bring to a boil for no more than 4 minutes. Cover and set aside for hour to cool, then toss in blender - I will add a bit of green chilies in the blender or little milk, have done curry lightly to change flavor. The basic is so good easy to hold down. the limit on cooking means you get all the nutrition. reheat it and yum- :P
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

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

Postby jeanette57 » Wed Mar 12, 2014 10:19 pm

Fantastic, cut and paste to minister. LOVE IT AND BELTED IT OUT SCARING DOG - SHE IS STILL HIDING :P :) :lol:
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

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Mar 12, 2014 10:27 pm

Fantastic, cut and paste to minister. LOVE IT AND BELTED IT OUT SCARING DOG - SHE IS STILL HIDING :P :) :lol:
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

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Mar 12, 2014 10:28 pm

darn chemo brain--- someone see my brain running around, lost the music some sent...send brain back .... :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

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Wed Mar 12, 2014 11:32 pm

thanks - even with chemo brain - found this song on YouTube

Listen to the words, so beautiful for those we know we leave behind.

Robin Harris Jones's video What's it like in Heaven? I listen the 3 time with my eyes closed. The words are wonderful. :D

also sent my minister "this light of mine" link. belting it out and scared the dog, but I cleared my lungs - Hope the neighbors were not around, as I am going to belt it another time tonight before bed. I need what it offers for Wednesday! FAITH
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

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby jeanette57 » Thu Mar 13, 2014 12:05 am

oh the other song was

I hope you dance by lee ann wormac (spell).

Mom and I were in Berlin Germany visiting friends and family. We had not see rain in almost 5 months so that day we got caught in the rain. We DANCED laughing in the park in the rain. Everyone else was under shelter and we just danced laughed and laughed harder when they called us crazy!

At the end of my life I feel sad but when my parents wanted to dance with me as a teen I ran! Now I would treasure those memories. I would have danced in many of my life's hardest moments. I hope those of you with children, dance with them! Drive them crazy - laugh and love! :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 » Thu Mar 13, 2014 1:27 am

Jeanette,
You are too funny!!! :lol: :lol: :lol:
If I do find a brain running around does it have your name on it?

Thanks for the cooking website and the songs.
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

Busymamaof3
Posts: 193
Joined: Fri Sep 07, 2012 1:37 pm

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Busymamaof3 » Thu Mar 13, 2014 7:06 am

I am wondering if any of you have consulted expert oncologists and then had treatment at home? I am setting appointments with 2 but am unsure how it will work. With limited time I am not willing to move somewhere for a trial - being with my kids is much more important.
Dx Stage IV CRC 8/12, 40yrs old
3 kids under 10
10/5/12 1 met to liver
folfox w/avastin 4 rds
Folfox alone 4 rds
HIPEC/CRS 2/13/13
PT3N1cM1
Back on Folfox 3/12 - 4/23/13
It is back 8/23/13
FOLFORI 9/13-1/14 cea up
Folfox 1/13
Hipec w crs #2 2/27/14

janeandrea
Posts: 314
Joined: Wed Apr 30, 2008 6:47 pm
Location: Chandler, AZ (moved here Nov 2011 from Chicago, IL)

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby janeandrea » Thu Mar 13, 2014 10:06 am

Candyys03 wrote:Jane
Have you tried Stivarga? It works for some people just not me.
I didn't mean to imply that you have or are giving up I am just sharing some possibilities to explore.
When I heard the words nothing else for me it was devastating and depressing. My relationship with my oncologist changed but that happens with any relationship. Things are better between us now. I thought he was the one giving up. My second opinin encouraged to me and gave him some ideas so here I am today.Erbitux and Irinotecan are toxic to me. I have been in the hospital more than once when on them. My oncologist is trying to figure out the right dose for me. After 3 weeks on Erbitux and Irinotecan my large tumor in my lung decreased 1cm which is better than nothing.
I finished 4 weeks on 2/4 and I will start again on 3/26.
When I was diagnosed I was given 6months to live.

I will be praying for you.
Candy



Hi Candy -

My onc mentioned Stivarga to me (although he called it by its chemical name, regorafenib). He is reluctant to try it on me, and I am reluctant to try it, because of the side effects. My goal is a better quality of life, and from my history, I believe he thinks the side effects would hit me hard. He also said that it would lengthen life in terms of months, not years. To me and for my life, that isn't a good risk/reward ratio. We discussed how I can always try it if I change my mind. I'm just not willing to "live at any cost." If I had children or a husband or significant other, I might take a different path, but I don't.

Honestly, I don't really buy the whole 6-8 months thing. My cancer and body have never gone the course they were "supposed" to on this journey (both to my benefit and detriment). So I am going to live as if that is true, doing things that bring me happiness - which is mostly spending time with people I love - but hope that it isn't and I'm here in another 6 1/2 years. :)

You say Erbi/iri is "toxic" to you - what does that mean? And do you have to be on it forever?

I will take your prayers, and send mine to you - here's to beating the odds!!

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

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Ashlee H.
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Location: Southern California

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Postby Ashlee H. » Thu Mar 13, 2014 1:16 pm

Jane, I've been refusing the "R/S" drug now for a year. However FOLFIRI was killing me fasting than the cancer. My ONC has a 70 year old lady on R/S and after the first few months, she is stable and doing well. I met with one of the Researchers with R/S and told him of my concerns. He told me the liver issue happens more in Asian patients - they really don't know why. Also, testing needs to be done weekly, so side effects can be dealt with immediately. I've heard from a few people if you can get through 2-3 months, the side effects ease up. Many feel people give up too quickly on this drug. The biggest side effects seems to be the hand/foot problems - blisters and such. But again, if at that first sign it is addressed, it should not get so bad. "Cheesehead" went on it, had some problems and went off of it. He is now back on chemo and hanging in there. I still haven't decided to try it, but I am leaning in favor of an attempt. I figure I can always stop it whenever I want. For so many people, by the time they go on R/S it is a last ditch effort and their health is pretty poor. Health-wise, I'm still doing pretty well - so I wonder if that will make a difference. If I do go on it in the next few weeks, I'll post the process.
I did the Zaltrap - and although it brought down the cancer markers, my joints hurt so bad I felt like I was 100 years old. After I got off Zaltrap, my cancer grew very quickly. You don't hear much about Zaltrap anymore, and I think that is one of my fears that R/S will be like Zaltrap.
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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