Thinking outside the box

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Ashlee H.
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Thinking outside the box

Postby Ashlee H. » Tue Dec 11, 2012 5:34 pm

Saw my ONC today to hear possible options to dealing with these lymph nodes. Because my tests are still good, he is ok with me staying off chemo for another month. He did mention maintenance chemo. In looking at my history - I could be on maintenance chemo for 5 months before having to hit it hard again with FOLFIRI, or I could be off chemo totally for 3 months before the cancer gets active again. Usually, in this whack a mole game, as soon as the numbers creep up, we start back on the full chemo. He suggested, if I was comfortable with it, to kind of wait it out. He knew of a European study where they were getting good results with being able to have longer chemo breaks if you don't go in for the attack at the first sign of cancer growth. And then when you did do the chemo it was just as effective as if you started chemo when the cancer was first visible on the scan. Any European Clubbers hear of this study (no clue what Country did the study)? The thought of being off chemo for 6 months, and then the possibility of knocking it down again made me happy. Some of you know I was considering going off chemo for a few months, then going back on chemo for the same amount of time, then back off chemo. Onc thought this type of pattern would not be good. I asked him about what Kathryn mentioned about chemo being like antibiotics - and he said it is true. If you over use the chemo, it will eventually stop working.
I know I won't be cured. But the appt. today helped me feel better about living with cancer. Letting the cancer grow a bit probably wouldn't be wise for someone who is peppered with cancer. This may be a huge mistake on my part. But, I had pretty much decided to stop chemo due to my quality of life. I plan on using the next few months to get my health back and try to repair some of the damage done by chemo. Who knows, maybe this will work for a few more years. All I know is I couldn't continue with "Chemo for Life" - because for me, that is not a life worth living.
-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!

done
Posts: 197
Joined: Sat Jul 21, 2012 10:31 pm

Re: Thinking outside the box

Postby done » Tue Dec 11, 2012 5:42 pm

I took this course, Ashlee, as soon as I knew I was inoperable. I've been 7 months now without chemo and the cancer has grown just a bit (we monitor very closely with PET and my very reliable CEA). My onc, after I had opened this door, said he is seeing and hearing that chemo with breaks seems to be as effective as constant chemo; he must be referring to the study you mentioned. Don't know how it'll be for you if you go this route, but I don't have an ounce of regret no matter what. I have lived and lived this last 7 months in a way that I wouldn't have been able to with chemo. Hope you get some great time!

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WorriedWife
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Joined: Tue Jul 24, 2012 5:41 pm

Re: Thinking outside the box

Postby WorriedWife » Tue Dec 11, 2012 8:55 pm

So glad your appointment today made you feel so much better! Of course I do not know anything about this treatment, but to me it seems like it makes a lot of sense. (just my little opinion) :) Good luck to you in whatever you choose!!
Hubby
CC Stg. 2b
Dx 6/12
surgery & reconnect
opted out Folfox
Pet Scan Aug NED
abscess/fistula for over a year
ongoing Dec 2013
Praying for each and every one of you

livingbyfaith
Posts: 430
Joined: Wed Dec 31, 2008 5:06 pm

Re: Thinking outside the box

Postby livingbyfaith » Tue Dec 11, 2012 9:21 pm

Wow, that is so exciting to hear. My husband has been on a break since May I think, had gall bladder surgery and then the oncologist decided to wait as no significant change. My husband said also they told him chemo for life, however breaks are so appreciated. I am praying for all those afflicted with cancer and the caregivers, and praying for a cure. I know we appreicate every moment we have together.
Hubby 72 cc
Resctn colon 07 stage 3/11 15 cm liver met CEA 3000+
CPT 11, 12 xelox kras wild gall blddr rem 7-12 & abltn
liver stents bi-mo gilbert lng mets , cpt-11 3-13, 2 hernia surgeries2013 & liver abltn went to heaven 10-24-13

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chrissyrice
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Location: Atlanta, Georgia

Re: Thinking outside the box

Postby chrissyrice » Tue Dec 11, 2012 9:26 pm

Ashlee,
This news sounds hopeful and a good choice for you. I hope you continue to get a better quality of life this way.

Hugs!

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

SkiFletch
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Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: Thinking outside the box

Postby SkiFletch » Tue Dec 11, 2012 9:46 pm

Sounds good to me Ashlee. I'm sure you'll be watching bloodwork and scans while you wait. Quality is just as important as quantity, so I'm glad this sits well with you
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

simon031003
Posts: 553
Joined: Mon Jan 17, 2011 10:17 pm
Location: Central Texas

Re: Thinking outside the box

Postby simon031003 » Tue Dec 11, 2012 10:10 pm

I am hoping and praying that it works out for you. I am thinking that is what dh onc was going for also. We are now back to full chemo. He has been off all chemo since August. Before that he only had maintence chemo since May. So he has gotten some time off. The weird thing for him is that he always feels better on chemo than off. He has really been able to endure chemo very well.
Michelle wife of Esteban
T3N1M0 12/31/10
Folfox 2/22/11
9/19/2011 confirmed cancerous lymph nodes via biopsy; started FOLFIRI with Avastian turned into FOLFIRI with Ebritux now FOLFIRI w Vectibux 12/12 mets to liver and pancreas
2/17/13 resting in Heaven

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: Thinking outside the box

Postby Laurettas » Tue Dec 11, 2012 10:26 pm

Totally support thinking outside the box. go for it, Ashlee. Also, have you looked into metronomic chemo? Or the possibility of Celebrex/Xeloda for maintenance?
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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Maia
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Re: Thinking outside the box

Postby Maia » Tue Dec 11, 2012 10:45 pm

Laurettas wrote: have you looked into metronomic chemo? Or the possibility of Celebrex/Xeloda for maintenance?


Yes... remember there is a third option (between chemo or not chemo) -low dose/ metronomic chemo. (Like 500 to 1000 mg of capecitabine, continuous. It doesn't matter if you had a bad reaction to Xeloda or 5-FU, or if it stopped working -at low doses, in many cases, the 'resistance' results overridden. And it doesn't suppress your own immune system, at that dose (au contraire -it generates like a self-vaccination with the dead cancer cells)).
It's for other cancer and 'just' a 'case report', but in this article/letter there is a really good explanation about the logic of metronomic chemotherapy: Successful treatment with low-dose capecitabine for disseminated esophageal adenocarcinoma http://informahealthcare.com/doi/pdf/10 ... 0701203560

I totally support QOL-oriented decisions! Hope the break, or other path you choose, works wonderfully for you :D

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lepperl
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Re: Thinking outside the box

Postby lepperl » Wed Dec 12, 2012 1:21 am

Ashley, I am so happy for your positive onc visit. I stand by you and whatever decision you make. We all need to do what is right for us. We all have differing opinions but have all seemed to find the same information. How we interperet that information and what we chose to do with it is our own call. It is a decision between ourselves and God.There have been lots of debates here recently and I think that is wonderful. But I also think since one thing we know for sure that there is no definitive cure for stage 4 that no one should judge anything we chose. We simply need to support eachother. Thank you so much for sharing your jouney and thoughts with us. I keep the faith that one day someone is going to find the recipe to beat this aweful thing and all of us exchanging information is the beginning of that. Your strength and courage are amazing.
Lori
8/11CRC Stage 4 Nodes KRAS+ Signet Cells
10/11xelox
irinotecan
Folfiri,avastin
10/12 xeloda,avastin
"It will be said that she stood in the storm, and when the wind did not blow her way, and surely it had not, she ajusted her sails" Liz Edwards

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Lara239
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Re: Thinking outside the box

Postby Lara239 » Wed Dec 12, 2012 2:07 am

I like the way this idea sounds and I love your attitude and strength about it. The plan also ,ales more sense to me than chemo for life. I wish I could write a longer reply but I am tired but I am so happy for your good visit today.
wife of DH (age 41) DX 8/3/2012 with 10 cm tumor in decending colon
pre-surgery CEA 4.4, no spread to other organs
8/22 - resection DX stage 3c 9/44 positive nodes
10/3/2012 CEA 1.3
Lynch test negative, tumor IS MSI-H
Folfox 10/3/2012 w/Yance protocol

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

Re: Thinking outside the box

Postby Ashlee H. » Wed Dec 12, 2012 2:34 am

To answer a few questions - yes, we will continue to monitor the blood markers since they have been good for me, especially the CA 19-9. Right now, both are in the "high normal" zone, so the cancer is ready to break out again. We've started chemo when the CA 19-9 has been in the 60's, the 80's....and while on maintenance chemo it went up to 300 (normal is under 34). All times, FOLFIRI (last with Avastin) brought the numbers back to normal. So, although we are keeping an eye on the numbers, there is going to be no urgency as the numbers start to go up. At DX, my CA 19-9 was almost 2,000 - so I think 300 is a good number for me when I have to reconsider the chemo. Scans will be done, but not as often as long as I still don't want to go back on chemo.
As far as other options - I'm so tired of researching right now. Look at the disappointing results with the "R" drug. My ONC did bring up that drug and I told him I knew of no one who has had success with drug. He told me he only had one patient on it so far, and she did not do well. I guess they have to give us all the options. I trust my ONC and know that he is on top of a lot of the breaking news and he is always open to things I bring up to him. But, after almost 4 years, it's difficult to continue to chase the magic combination if I don't have actual people who have experienced the treatment to talk to about their results. The "R" drug has been a prime example of this - we have had no one come forward on the board with amazing results - and this is the drug we've all been waiting for to get the FDA approval. It was such a big disappointment to see members' results.
Thanks for all your input. I do hear you. Right now, I'm happy with my decision to sit back and see if the cancer is going to be wimpy or strong. I'm hoping for wimpy. But either way....I know how much better I'm going to feel with a long chemo break.
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!

pog451
Posts: 799
Joined: Thu Oct 13, 2011 6:11 am
Facebook Username: andrew.morgan

Re: Thinking outside the box

Postby pog451 » Wed Dec 12, 2012 3:57 am

Ashlee H. wrote: He knew of a European study where they were getting good results with being able to have longer chemo breaks if you don't go in for the attack at the first sign of cancer growth. And then when you did do the chemo it was just as effective as if you started chemo when the cancer was first visible on the scan. Any European Clubbers hear of this study (no clue what Country did the study)?

Ashlee, I just did a quick Google search in German and came across the OPTIMOX1/2 studies which looked at maintenance chemo with 5FU after FOLFOX versus observation but seem to result in a slightly better result for maintenance chemo (these are only phase II studies and no overall survival stats were available). These were done in France. There is also a GISCAD study looking at pausing FOLFIRI being done in Italy.

I may have time later to take a closer look.
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: Thinking outside the box

Postby jjlist » Wed Dec 12, 2012 7:40 am

I support your decision. you are one very tough brave woman, and i am proud of you.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

Fede

Re: Thinking outside the box

Postby Fede » Wed Dec 12, 2012 8:49 am

Ashlee H. wrote:Saw my ONC today to hear possible options to dealing with these lymph nodes. Because my tests are still good, he is ok with me staying off chemo for another month. He did mention maintenance chemo. In looking at my history - I could be on maintenance chemo for 5 months before having to hit it hard again with FOLFIRI, or I could be off chemo totally for 3 months before the cancer gets active again. Usually, in this whack a mole game, as soon as the numbers creep up, we start back on the full chemo. He suggested, if I was comfortable with it, to kind of wait it out. He knew of a European study where they were getting good results with being able to have longer chemo breaks if you don't go in for the attack at the first sign of cancer growth. And then when you did do the chemo it was just as effective as if you started chemo when the cancer was first visible on the scan. Any European Clubbers hear of this study (no clue what Country did the study)? The thought of being off chemo for 6 months, and then the possibility of knocking it down again made me happy. Some of you know I was considering going off chemo for a few months, then going back on chemo for the same amount of time, then back off chemo. Onc thought this type of pattern would not be good. I asked him about what Kathryn mentioned about chemo being like antibiotics - (I DONT UNDERSTAND ASHLEE, Kathryn mentioned that if you stop antibiotics/chemo for awhile after the a period the resistant will finish ??? or the resistant will continue despite of the rest??? and he said it is true. If you over use the chemo, it will eventually stop working.
I know I won't be cured. PERHAPS, but win time here is buy possibilities... But the appt. today helped me feel better about living with cancer. Letting the cancer grow a bit probably wouldn't be wise for someone who is peppered with cancer. This may be a huge mistake on my part. But, I had pretty much decided to stop chemo due to my quality of life. I plan on using the next few months to get my health back and try to repair some of the damage done by chemo. PERFECT ONE KEY... We are working on... in this period TRY to design a plan to rebuild the immune system without glucose (if it is necessary with bsl inducted controlled, we are woriking on it yet. ADD IT...hiperbaric oxygen therapy... if you want, I can send you the links, despite We have not the plan yet... Who knows, maybe this will work for a few more years. All I know is I couldn't continue with "Chemo for Life" - because for me, that is not a life worth living.
-Ashlee


REALLY, amazing... you have surprised me, we have sometimes differences, but I LOVE THE THREAD, I love your change, and I am available to help... that s what I wanted to hear.

A kiss for you

Fede


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