Bad MRI results...

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

Bad MRI results...

Postby BeansMama » Tue Nov 15, 2016 10:38 am

Well, surgery is on hold. Tumor grew with folfiri and they won't do the surgery unless it is shrinking.

We are starting folfirinox plus Avastin today. We are throwing everything but the kitchen sink at it hoping for shrink.

It's upsetting, I was hoping to hear it shrunk and I was going to get the surgery. Now that damn expiration date is in the back of my mind. This new cocktail better work!
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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Marejenny
Posts: 65
Joined: Sat Aug 20, 2016 11:30 am

Re: Bad MRI results...

Postby Marejenny » Tue Nov 15, 2016 11:09 am

Hey BeansMama,

So sorry to hear your results. You have always been so positive and this has affected the whole group immensely. We are behind you and will be praying even more that the new treatment will shrink the tumor. Wish you the best!

Mare.
62f, Blessed with a wonderful husband and 2 sons
Diagnosed 6/2016, Adenocarcinoma, Colectoral primary, chemo lifer
Stage 4b, liver mass 7.0 x 4.8 cm and additional lesions, multiple lung nodes
CEA 40.9
7/12 began Folfox, Neulasta, Avastan
CT 9/12 tumor shrunk 4.4 by 3.3
CEA 9.6
Continuing Folfox, CT scheduled 12/12.
MSS, neg lynch
Put Oxiliplatin and Neulasta on hold.
CT 12/12 Hepatic dome mass shrinks to 2.9 x 2.5, other lesions shrink, no new.
CEA 3.3

Tnguyen
Posts: 127
Joined: Wed Aug 24, 2016 6:47 pm
Facebook Username: Natalie Nguyen

Re: Bad MRI results...

Postby Tnguyen » Tue Nov 15, 2016 11:16 am

So sorry to hear that beansmama! i really hope your tumor shrink with the new treatment. Folfori didnt work well for my mom either, I think it's not as effective as folfox. Im praying for you!
Mom Diagnosed with CC stage iv with mets to liver and lung
16 rounds of folfox - failed
folfori- some growth, some shrank
folfori+vectibix- failed after 4 months (scans came back with some growth)
currently- (oct12/16) stivarga (2 pills a day)

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Bad MRI results...

Postby mypinkheaven » Tue Nov 15, 2016 11:20 am

Damn!! Yes, this is upsetting! But, I have a good feeling that the Avastin will work. Love ya, Sally
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Bad MRI results...

Postby Maia » Tue Nov 15, 2016 12:20 pm

Sorry, BeansMama.
You're Lynch positive, which means you're MSI. Even if MSI low, Haven't you consider an immunotherapy trial, instead of chemotherapy, given the already good results of immunotherapy for MSI?
(similar to the trial Stephen is taking. viewtopic.php?f=1&t=51990 )

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Bad MRI results...

Postby teri3 » Tue Nov 15, 2016 1:15 pm

I'm sorry about your bad news. I'm praying the avistin gets in there and kicks some ass. You are a warrior, praying for you.
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Bad MRI results...

Postby macpudd » Tue Nov 15, 2016 2:26 pm

Hi Beansmama,
So sorry to hear of this setback, you have always struck me as a very positive person from your posts and I am sure that attitude will help you get over this, please God the new treatments will work. Sending you positive vibes from the Emerald Isle.

Regards
Macpudd
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Bad MRI results...

Postby behconsult » Tue Nov 15, 2016 4:05 pm

Hey Beansmama, I am sorry you have to deal with this hurdle. I know it a big disappointment for you. I know how hard it is when cancer seems to be in the drivers seat. I will personally keep you in prayer as you search and find what is to be a new normal; and hopefully one that is much better and healing for body, mind and spirit. B
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

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

Re: Bad MRI results...

Postby Wonderfullymade » Tue Nov 15, 2016 4:08 pm

I am so sad to read this for you beansmama! This battle is a hard one but you have the prayers of many warriors and we will keep praying and fighting for you! I will continue to pray for you and may this next treatment be the one to bring you to NED!
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

stu
Posts: 1394
Joined: Sat Aug 17, 2013 5:46 pm

Re: Bad MRI results...

Postby stu » Tue Nov 15, 2016 4:21 pm

Oh I am sorry to read that. You have responded before and here's to that happening again.
We are here to prop you up until you find your feet again.
There were bumps on the road for my mum too. Seven and a half years later I have found her once again up ladders on the garage roof scrapping it clean. Take the time to reload .
I think the point about looking at immunotherapy is worth starting to investigate .
You take care.
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 .

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

Re: Bad MRI results...

Postby BeansMama » Tue Nov 15, 2016 4:26 pm

Marejenny wrote:Hey BeansMama,

So sorry to hear your results. You have always been so positive and this has affected the whole group immensely. We are behind you and will be praying even more that the new treatment will shrink the tumor. Wish you the best!

Mare.


Thank 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

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

Re: Bad MRI results...

Postby BeansMama » Tue Nov 15, 2016 4:29 pm

Maia wrote:Sorry, BeansMama.
You're Lynch positive, which means you're MSI. Even if MSI low, Haven't you consider an immunotherapy trial, instead of chemotherapy, given the already good results of immunotherapy for MSI?
(similar to the trial Stephen is taking. viewtopic.php?f=1&t=51990 )


Yes I am Lynch positive, in the beginning per my first onc I did not qualify for any of the trials, my current onc is looking at trials that are running now or slated to start to see if I qualify for any of them. He stated though that he fears I will not get one because of how many treatments I have had. He is also going to try to convince my insurance company to approve an immunotherapy drug that has show promise in Lynch patients even if not fda approved for it.
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 MRI results...

Postby BeansMama » Tue Nov 15, 2016 4:31 pm

stu wrote:Oh I am sorry to read that. You have responded before and here's to that happening again.
We are here to prop you up until you find your feet again.
There were bumps on the road for my mum too. Seven and a half years later I have found her once again up ladders on the garage roof scrapping it clean. Take the time to reload .
I think the point about looking at immunotherapy is worth starting to investigate .
You take care.
Stu


Thank you so much. Right now we are hoping the immunotherapy comes through or my tumor shrinks again which will put the surgery back on the table. That is the biggest concern with all these different treatments, making sure my liver is still viable for the planned surgery as it can make me NED.
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 MRI results...

Postby BeansMama » Tue Nov 15, 2016 4:32 pm

Wonderfullymade wrote:I am so sad to read this for you beansmama! This battle is a hard one but you have the prayers of many warriors and we will keep praying and fighting for you! I will continue to pray for you and may this next treatment be the one to bring you to NED!
Wonderfullymade


Thank you so much
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 MRI results...

Postby BeansMama » Tue Nov 15, 2016 4:32 pm

behconsult wrote:Hey Beansmama, I am sorry you have to deal with this hurdle. I know it a big disappointment for you. I know how hard it is when cancer seems to be in the drivers seat. I will personally keep you in prayer as you search and find what is to be a new normal; and hopefully one that is much better and healing for body, mind and spirit. B


Thank you so much, hoping I am back on the road to surgery in no time.
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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