Bad news yesterday

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 5:10 am

Well, I typed this once and it seems to have disappeared. Let's try it again.

I have now officially failed every chemo there is. They did a CT scan on me in the hospital. My oncologist decided to use that one instead of sending me for another one next week. My tumor is so aggressive it grew on the folfirinox + Avastin cocktail.

I am now receiving immunotherapy, my insurance company has approved 13 cycles (26 treatments) with Opdivo. From what I understood it works for 60% of CRC patients. I'm hoping I am part of that 60%. There is still a glimmer of hope left after all of the bad news. I of course will be checking those odds (me who usually says screw the odds they are just a number!) and add whatever I can to increase those odds. First addition is frankenscence oil.

Started making a bucket list and the lists of things we need to take care of (should have taken care of long before now). Going to start writing letters to the girls for their important occasions just in case. I figure if I am part of the 60 - bonus its already done!

My gut feeling isn't good, I learned long ago my gut is usually right. Not going to stop fighting though. At the very least I pray I stay stable until there is a cure.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

drw
Posts: 51
Joined: Sun Mar 30, 2014 4:43 am

Re: Bad news yesterday

Postby drw » Wed Jan 04, 2017 6:44 am

I'm sorry. I hope you are part of the 60 percent too.
4/14 dx rectal cancer at 45 yoa
4/14 transanal excision
6/14 lar - 2 positive lymph nodes stage 3
8/14 started radiation and xeloda
1/15 completed chemo
2/15 Ned :)
3/15 reversal

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

Re: Bad news yesterday

Postby ams5796 » Wed Jan 04, 2017 7:08 am

You have a great attitude . I agree, don't stop fighting. You very well could be part of the sixty percent. My best to you.



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

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: Bad news yesterday

Postby radnyc » Wed Jan 04, 2017 7:33 am

Is there anyway you can get seen at Memorial Sloan? If your tumors are only in the liver their HAI protocol might help.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 7:38 am

drw wrote:I'm sorry. I hope you are part of the 60 percent too.


Thank you Drw
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 7:38 am

ams5796 wrote:You have a great attitude . I agree, don't stop fighting. You very well could be part of the sixty percent. My best to you.



Ann


Thank you, I don't plan on stopping the fight yet :D
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

stu
Posts: 1461
Joined: Sat Aug 17, 2013 5:46 pm

Re: Bad news yesterday

Postby stu » Wed Jan 04, 2017 7:47 am

I am holding out for the 60% for you too. It's the group for you.
I really am sorry for you to have to go through this though .
Holding you in our hearts,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 8:03 am

radnyc wrote:Is there anyway you can get seen at Memorial Sloan? If your tumors are only in the liver their HAI protocol might help.


MSK logistically just won't work for us. We cannot afford to maintain 2 households yet again. Also it would be me going by myself and with my husband's work demands we would need to hire in home help for both homes as he would have the kids and I need physical help quite a bit. We don't have anyone who could commit that much time.

I am at one of the top cancer centers in Charlotte. They also refer to Duke if they feel Duke has a better treatment. I believe the HAI may be available where I am but I am not sure. I need to talk to my liver surgeon about that. She has a number of liver targeted treatments in mind last we spoke, I need to make another appointment with her to find out options.

My oncologist said that a fellow team there is starting a new clinical trial he may try and get me into. The only thing that may exclude me are the sheer number of treatments I have had.

The other issue is size and placement of my tumor. It's not your standard liver met. It is between the lobes of my liver and over 10 cm x 8 cm. Can't remember the exact measurements. The biggest issue is that all of my hepatic veins and my hepatic artery are inside the tumor. They actually just told us that it is beginning to crush my bile duct. It's not time for a stent yet as my numbers are still good but it could be needed in the future.

I wish it was in one side or the other instead of both and easily removed.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 8:04 am

stu wrote:I am holding out for the 60% for you too. It's the group for you.
I really am sorry for you to have to go through this though .
Holding you in our hearts,
Stu


Thank you so much Stu. How is your mother doing? Well I hope.

Keeping you and your mother in my prayers.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Bad news yesterday

Postby Wonderfullymade » Wed Jan 04, 2017 8:43 am

Darn! I was really praying that awful concoction would get you to resection!
Traditional chemo failed me too...I have been on the Pembro for over a year now and am still hanging in there, just started getting nasty side effects a couple of months ago(research says that I am in the 1%) but... I have felt really good for the past year so praying this treatment will grant you the strength to enjoy your family and get out and live some life!
And sister...I am praying we both, no we all here can get ourselves through to that cure!!!
I am sending mega hugs, prayers and love your way!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Bad news yesterday

Postby fumaros » Wed Jan 04, 2017 9:37 am

BeansMama,

I am sorry about the news. But like you said there is still hope, you could be in that 60% and please don't stop believing that. You maintain such a good spirit and grace despite all the difficulty you have endured. I mention you in my prayers, and will continue to.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 9:56 am

Wonderfullymade wrote:Darn! I was really praying that awful concoction would get you to resection!
Traditional chemo failed me too...I have been on the Pembro for over a year now and am still hanging in there, just started getting nasty side effects a couple of months ago(research says that I am in the 1%) but... I have felt really good for the past year so praying this treatment will grant you the strength to enjoy your family and get out and live some life!
And sister...I am praying we both, no we all here can get ourselves through to that cure!!!
I am sending mega hugs, prayers and love your way!
Wonderfullymade


Thank you Wonderfullymade. I can say it is nice to not be dragging the pump around with me all the time! Aside from some fatigue I am feeling pretty good. It's nice to not feel sick for once :D

Hugs prayers and live right back at you!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Bad news yesterday

Postby peanut_8 » Wed Jan 04, 2017 10:02 am

Sorry to hear the nasty chemo didn't help.

Don't know if you're a math geek at all, butt 60% is actually 50% more than 40%. I know, lots of stupid numbers, butt I do have a good feeling that YOU will be in that 60%.

Best Wishes for success and few side effects,
Terri
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 10:10 am

fumaros wrote:BeansMama,

I am sorry about the news. But like you said there is still hope, you could be in that 60% and please don't stop believing that. You maintain such a good spirit and grace despite all the difficulty you have endured. I mention you in my prayers, and will continue to.


Fumaros,

Thank you so much for the prayers. I am trying very hard to continue believing I am in that 60%. I will continue to talk with God about hopefully being in that 60%.

I am sincerely trying to maintain a positive attitude, it gets difficult when you continually get knocked down. But such is the nature of this disease and that is what I need to keep reminding myself.

Keeping you and your family in my prayers.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 04, 2017 10:16 am

peanut_8 wrote:Sorry to hear the nasty chemo didn't help.

Don't know if you're a math geek at all, butt 60% is actually 50% more than 40%. I know, lots of stupid numbers, butt I do have a good feeling that YOU will be in that 60%.

Best Wishes for success and few side effects,
Terri


Thank you Terri. I was a math geek before chemo fried my brain, now I'm lucky if I can remember my pin number lol.

It is kind of surreal sitting here realizing that in the long run none of the chemo worked. I'm really still trying to wrap my head around it.

Praying I'm in that 60%.

Keeping you and yours in my prayers.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016


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