Chemo has stopped working - update 2/26/14

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

Chemo has stopped working - update 2/26/14

Postby Ashlee H. » Thu Feb 13, 2014 12:50 pm

I know I haven't been around much lately. For those of us who are dealing with the end stages of this disease, the deaths of Gloria, Kathryn, plus so many others the last few months have really sucked out a lot of the hope. I know some newbies and NED posters get upset when bad news is posted. I wish everyone here could say they are NED and never have to deal with cancer again.
My chemo has stopped working. There is nothing else to try. I'll have a scan next week just to see where I'm glowing. I'm now preparing to quit work which was a very hard decision to make. The ONC gives me 6 months. I know he isn't God - I could be gone in 3 months or 18 months. From other friends I've known from this board, they had some pretty good months once they stopped treatment. That is my intention as well - to enjoy days without chemo in my body and just be in the moment of living. -Ashlee

Update 2/26/14 - This week I got together with my ONC and we looked at the scans. The Radiologist did not put in any SUV numbers - what's the deal with that??? So he will be doing another report - it was a PET/CT scan why would he think the numbers aren't an issue. Oh sure, he used slightly increased/decrease, greatly increased/decrease, and in one area "resolved", which I loved and want to see more of. So much is based on these scans, and if the reader is having an off day, we suffer. Anyway, ONC says chemo has worked on 80% of the cancer...that leaves the 20% that is laughing at the chemo and will kill me. My ONC is checking into all kinds of things to attack the 20%. But, it obvious the chemo has morphed and I think my only chance is a targeted therapy directed at this evil tumor. So, I am not out of the woods, and won't be. There is still no cure on the table for me. I am on a two month break from chemo and work. I just wasn't ready to turn in those papers yet that would make me a "former employee". So my only goal for the next few months is to work with my ONC on possible non-chemo treatments, and go to the gym to build up my strength and mobility. It was so great not having to wake up to an alarm clock this morning. The chemo has turn me into a 90 year old lady. Everything hurts when I move - getting out of a chair is no easy task these days. Today was my first day back at the gym. I'll go back this afternoon to enjoy the jacuzzi and steam room. I'm in no frame of mind to make permanent decisions right now. My ONC is really trying to find something I can tolerate that will let me continue to enjoy life. I've always stopped chemo when the joy had left my life. If I feel like I'm died, then I might as well just die. So my saga continues....
Last edited by Ashlee H. on Wed Feb 26, 2014 4:43 pm, edited 1 time in total.
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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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Chemo has stopped working

Postby BrownBagger » Thu Feb 13, 2014 12:59 pm

That's a shock, Ashlee. Seeing how you've coped with your situation over the years, I'm confident that you'll make the right choices and live out the rest of your life in the best way possible.

And, I sure hope your doctor is wrong.
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.

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

Re: Chemo has stopped working

Postby jeanette57 » Thu Feb 13, 2014 1:15 pm

how will you cope with out work to keep you sane? I quit work within weeks but you needed it for many reasons. Do the bucket list, eat as healthy as you can to get the energy, take time to smell the wind and flowers. Walk in a park and enjoy nature. That is my suggestion :D

Every second of freedom is welcomed and time slows down when you let it to enjoy life! Today I do break isolation and going red hatting with gang. yahoo. hugs and let the light in, you are the light of god, burn bright! Be happy till the end - or sad if you need. We are here for you.
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

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Chemo has stopped working

Postby ams5796 » Thu Feb 13, 2014 1:52 pm

Awful news, Ashlee. You've been a great source of knowledge and inspiration to me. I wish you the best going forward.





Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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

Re: Chemo has stopped working

Postby NWgirl » Thu Feb 13, 2014 2:06 pm

I've also heard that getting off chemo gives you some time to feel good again.

I'm sorry to hear this news Ashlee. It's something none of us wants to hear but for many it's just a matter of time.

I hope whatever time you have left you are able to enjoy it.
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

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: Chemo has stopped working

Postby so-scared » Thu Feb 13, 2014 2:10 pm

Sorry about the news. I really hope that you feel well quickly and can get out there and enjoy! I hope that your doc is off by a lot!
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Chemo has stopped working

Postby janklo » Thu Feb 13, 2014 2:15 pm

I'm sorry Ashlee. I'm glad it's going on springtime, even though I know you live in Southern Cali, but hopefully you can enjoy some nice weather outside and feel good with no chemo in your body. I will miss you and your knowledge, keep us posted on how things are going, ok?
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

Sharona
Posts: 187
Joined: Sun May 19, 2013 3:06 am
Facebook Username: Sharon Rauch

Re: Chemo has stopped working

Postby Sharona » Thu Feb 13, 2014 2:51 pm

I hate to hear this, Ashlee. I pray that you feel good and are able to enjoy you time off chemo. Do the things that you have always wanted to do and forget the expense,- you can't take it with you. Remember, drs are sometimes wrong. I'm proof of that because I am still here.
Hugs!
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
http://www.caringbridge.org/visit/sharonrauch

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: Chemo has stopped working

Postby Cherie » Thu Feb 13, 2014 2:56 pm

Ashlee this is terrible news. I wish doctors did not give time lines like this. In the time we all have left, thinking about a date or time is not the best way to live. I just want to say don't give up work if you enjoy it, work as long as you can. I believe participating in "normal" everyday activities and keeping your body moving will extend anyone's time. I have a dear friend who was told to go home and get ready to die. That was two years ago and she is still here complaining how boaring cancer is. It has been sad this year seeing so many pass, people we all know to be fighters. But you are here so just keep living and do what brings you joy. You have betten so many odds just keep doing that!
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

laneylou
Posts: 97
Joined: Tue Oct 09, 2012 8:25 pm

Re: Chemo has stopped working

Postby laneylou » Thu Feb 13, 2014 3:36 pm

Oh Ashlee, I hate to hear this. I hope you have many wonderful chemo-free days coming your way.
Laine, dx @ 39, 4/12
T3N0M0 Stage IIA
Emergency IVF, 4/12
Chemorad, LAR/temp ileo, FOLFOX (no oxi after #2)
DVT on chemo; IVC filter
Reversal/port out 5/13
IVC filter finally out 2/14
NED (clean CT, scope, CEA)

pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Re: Chemo has stopped working

Postby pukalania » Thu Feb 13, 2014 3:46 pm

Big hug dear Ashlee... Wish you happy and painfree joyful time ... And as Eric said hope doc is wrong ... You are a true inspiration! Thank you
Xoxo
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

Re: Chemo has stopped working

Postby Asterix » Thu Feb 13, 2014 3:53 pm

Sorry to hear this Ashlee. I hope you can make the best of whatever time you have.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: Chemo has stopped working

Postby raym » Thu Feb 13, 2014 3:59 pm

Ugh, not what I wanted to hear regarding your journey :(. I assume you have investigated clinical trials?
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

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

Re: Chemo has stopped working

Postby juliej » Thu Feb 13, 2014 4:02 pm

Ashlee, I wish this wasn't happening to you. You are bravely facing what all of us fear. I hope there is a clinical trial out there that tempts you, but I totally get it if you're emotionally and physically done with chemo and don't want to pursue it. Sometimes it comes down to choosing 300 110% days instead of (maybe) 500 10% days. Hugs and prayers of strength and courage are coming your way, as many as I can muster.
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

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: Chemo has stopped working

Postby tchan8888 » Thu Feb 13, 2014 4:06 pm

Ashlee,

Prays and thoughts with you. Know you will live to the fullest. Your spirit is inspiring.

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high


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