Scan results not what I had hoped for ...

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Scan results not what I had hoped for ...

Postby Shana » Mon May 14, 2018 5:45 pm

My CEA is rising again, from 54 to 78, so something is stirring. I wasn't too surprised by my CT scan report since CEA had been trending up since March. CT showed one liver met shrunk and one remained stable, one that was only questionable on last CT is now 17mm and another one that wasn't clearly seen on prior scan is 7mm now. Kind of a mixed bag in my layman's mind so I am definitely glad to be so closely monitored.

I had the second higher dose infusion today and will recheck CEA in 2 weeks to see if new dose is more effective in keeping things in check. In the meantime I am also looking at clinical trials at UCSF and Stanford for some other options if the Irinotecan is no longer working. My oncologist doesn't recommend Avastin because of it's interaction with Cetuximab, evidently need to be off of Cetuximabe for 3-4 months before adminstering Avastin.

On the positive side, I feel really well and strong which is a blessing and which also makes me a more desirable candidate for clinical trials that I might not otherwise qualify for.

Just keeping it real but positive too!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

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CRguy
Posts: 9490
Joined: Sun Feb 10, 2008 6:00 pm

Re: Scan results not what I had hoped for ...

Postby CRguy » Tue May 15, 2018 12:13 am

Ya know homie ...
sometimes results just SUCK SHIT !!!!! :twisted:
BUTT I have also learned here that :
" Sometimes life is what it IS ... but may not always be, what it seems. "

Keep putting one foot ahead of the other, and YES !
I am definitely glad to be so closely monitored.
= WORD !!!!!
Just keeping it real but positive too!

and you have the whole crowd HERE sayin'
Backatcha sista'

Love Peace and Harmony
with you on the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Atoq
Posts: 187
Joined: Wed Oct 25, 2017 9:31 am

Re: Scan results not what I had hoped for ...

Postby Atoq » Tue May 15, 2018 12:29 am

I am sorry to read that, on the other side is good that you feel well and strong, and you can join trials. The most important thing, I am realizing, is not the cat scan result but how you feel. I did one one week ago and still waiting for the results...big hug!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal scheduled

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 12:51 am

CRguy wrote:Ya know homie ...
sometimes results just SUCK SHIT !!!!! :twisted:
BUTT I have also learned here that :
" Sometimes life is what it IS ... but may not always be, what it seems. "

Keep putting one foot ahead of the other, and YES !
I am definitely glad to be so closely monitored.
= WORD !!!!!
Just keeping it real but positive too!

and you have the whole crowd HERE sayin'
Backatcha sista'

Love Peace and Harmony
with you on the Journey
CRguy


Thanks CRguy! I appreciate your words and candor and your awesome sense of humor! :D
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

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O Stoma Mia
Posts: 1275
Joined: Sat Jun 22, 2013 6:29 am

Re: Scan results not what I had hoped for ...

Postby O Stoma Mia » Tue May 15, 2018 12:56 am

Shana wrote:...I am also looking at clinical trials at UCSF and Stanford for some other options if the Irinotecan is no longer working....

I'm very sorry to hear about the news from your scan. As you mentioned, though, you may be able to find some help in clinical trials.

You mentioned earlier that you had met Maia Walker at the Call on Congress event. She may be able to help you search the clinical trials database for appropriate trials specific to your tumor's genetic profile.

Maia has helped so many over the years. She recently received an award for her work on the Late Stage MSS-CRC Trial Finder. You were so fortunate to have had the opportunity to meet her while you were in Washington. She is such an exceptional person.

ANDREW GIUSTI MEMORIAL AWARD
María Cecilia Antúnez Walker (Maia)


When the Late Stage MSS-CRC Trial Finder launched last May, it was because of Dr. Tom Marsilje’s brilliant idea and because of the countless hours that his partner in crime, Maia (Cee Cee) Walker, invested into making his dream become a reality. Tom and Maia met on The Colon Club’s message boards and soon became fast friends, virtually. Tom had joined to meet other patients like himself and help them find trials; Maia had joined to help her friend who was fighting CRC and later passed away. With Tom in San Diego and Maia in Argentina, they quickly discovered cancer knows no bounds (and especially a love for cancer research). Maia jumped in to help Tom transform his Excel spreadsheet into a web-based application that more patients could use. This tool served as the starting point for the robust platform Flatiron built last May. Maia worked hand-in-hand with Tom to manually curate the trials, and even after Tom’s passing in Nov. 2017, she has continued to keep the trial finder up-to-date. In March, she traveled to the U.S. to personally train Fight CRC research advocates on the curation process, ensuring her and Tom’s work can be replicated. Since we launched the trial finder in May, close to 10,000 people have visited it and made over 17,000 searches – and this isn’t counting the thousands more who used the earliest tools Tom and Maia developed. Her passion for reach is impacting the world.

Reference: https://fightcolorectalcancer.org/blog/awarding-amazing-advocates-2018/

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 12:59 am

Atoq wrote:I am sorry to read that, on the other side is good that you feel well and strong, and you can join trials. The most important thing, I am realizing, is not the cat scan result but how you feel. I did one one week ago and still waiting for the results...big hug!

Claudia


Thank you Claudia!
Hoping your scan is good and I agree that feeling well is important. I also feel like since the progression is small that hopefully there is time to stay ahead of it
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

User avatar
Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 1:26 am

O Stoma Mia wrote:
Shana wrote:...I am also looking at clinical trials at UCSF and Stanford for some other options if the Irinotecan is no longer working....

I'm very sorry to hear about the news from your scan. As you mentioned, though, you may be able to find some help in clinical trials.

You mentioned earlier that you had met Maia Walker at the Call on Congress event. She may be able to help you search the clinical trials database for appropriate trials specific to your tumor's genetic profile.

Maia has helped so many over the years. She recently received an award for her work on the Late Stage MSS-CRC Trial Finder. You were so fortunate to have had the opportunity to meet her while you were in Washington. She is such an exceptional person.

ANDREW GIUSTI MEMORIAL AWARD
María Cecilia Antúnez Walker (Maia)


When the Late Stage MSS-CRC Trial Finder launched last May, it was because of Dr. Tom Marsilje’s brilliant idea and because of the countless hours that his partner in crime, Maia (Cee Cee) Walker, invested into making his dream become a reality. Tom and Maia met on The Colon Club’s message boards and soon became fast friends, virtually. Tom had joined to meet other patients like himself and help them find trials; Maia had joined to help her friend who was fighting CRC and later passed away. With Tom in San Diego and Maia in Argentina, they quickly discovered cancer knows no bounds (and especially a love for cancer research). Maia jumped in to help Tom transform his Excel spreadsheet into a web-based application that more patients could use. This tool served as the starting point for the robust platform Flatiron built last May. Maia worked hand-in-hand with Tom to manually curate the trials, and even after Tom’s passing in Nov. 2017, she has continued to keep the trial finder up-to-date. In March, she traveled to the U.S. to personally train Fight CRC research advocates on the curation process, ensuring her and Tom’s work can be replicated. Since we launched the trial finder in May, close to 10,000 people have visited it and made over 17,000 searches – and this isn’t counting the thousands more who used the earliest tools Tom and Maia developed. Her passion for reach is impacting the world.

Reference: https://fightcolorectalcancer.org/blog/awarding-amazing-advocates-2018/


Thank you so much Mia!
I was very happy to meet Maia and tell her how much I appreciated her contributions to Late Stage MSS-CRC Trial Finder. I wish she had been able to meet Tom in person... I'm so happy to see the honor and recognition that she received, I wasn't aware of it.

Hopefully she will have some trial suggestions to offer :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

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susie0915
Posts: 759
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Scan results not what I had hoped for ...

Postby susie0915 » Tue May 15, 2018 7:50 am

Hopefully you will qualify for a clinical trial Shana. I'm sorry to hear your scan results were not totally positive but glad you are feeling good and strong. I'll pray your CEA will come down in two weeks. Keep fighting, I am always inspired by your positive attitude.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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Robino1
Posts: 434
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Scan results not what I had hoped for ...

Postby Robino1 » Tue May 15, 2018 8:29 am

Shana, my thoughts and prayers are with you!

I too have not gotten the best news with my latest scan and CEA.

Oxaliplatin has been reintroduced. Two new spots have showed up and my ascites is back. Because I knew the ascites was rearing its ugly head, I knew that something was going on. Granted the ascites is not as bad as when I got the initial news of recurrence but still could tell just by looking in the mirror.

We have to keep fighting and looking for new ways to fight.

{{{{{heartfelt hugs}}}}}}}
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5
BRAF V600e

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 11:38 am

susie0915 wrote:Hopefully you will qualify for a clinical trial Shana. I'm sorry to hear your scan results were not totally positive but glad you are feeling good and strong. I'll pray your CEA will come down in two weeks. Keep fighting, I am always inspired by your positive attitude.


Thank you Susie! I appreciate your support and I think attitude is part of staying strong, it also helps me cope with the inevitable stress and wandering thoughts!

From what I am hearing many patients wait too long to apply for clinical trials and are too sick to be accepted and tolerate side effects so I feel like I am in a good place right now and hopefully I will qualify for the right one.

Thinking of you on scan day, your CEA is stable and I bet the CT will be good too! :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 11:43 am

Robino1 wrote:Shana, my thoughts and prayers are with you!

I too have not gotten the best news with my latest scan and CEA.

Oxaliplatin has been reintroduced. Two new spots have showed up and my ascites is back. Because I knew the ascites was rearing its ugly head, I knew that something was going on. Granted the ascites is not as bad as when I got the initial news of recurrence but still could tell just by looking in the mirror.

We have to keep fighting and looking for new ways to fight.

{{{{{heartfelt hugs}}}}}}}


Robin, thank you for the positive thoughts and prayers. I know you are dealing with progression too and I keep you in my prayers. I asked about Oxaliplatin but my oncologist said that it's not administered alone and I can't tolerate 5FU. The Oxy side effects are no fun as you well know but if it helps then that's what matters.

We keep on fighting because we must for ourselves and our loved ones!

((( Hugs back attacha)))
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

orlar
Posts: 51
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Scan results not what I had hoped for ...

Postby orlar » Tue May 15, 2018 12:50 pm

Shana, I know your latest scan wasn't what was hoped for, but with the increased Irinotecan I'm hoping that may push things back on the right track. I would be interested on what you find out concerning potential clinical trials and that process since you are feeling strong. Positive thoughts heading your way! Larry
56yo male DX 5/15/17, Right Hemi colectomy 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D
2/18 PET=liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-7.2
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 5:45 pm

orlar wrote:Shana, I know your latest scan wasn't what was hoped for, but with the increased Irinotecan I'm hoping that may push things back on the right track. I would be interested on what you find out concerning potential clinical trials and that process since you are feeling strong. Positive thoughts heading your way! Larry


Thank you Larry! I hope the Irinotecan increase helps too. Love those positive thoughts and sending same back to you!

Life is a journey with detours, this is on heck of a detour but hoping eventually to get back on track. I will update any news I receive on Clinical trials once I find out more. I do know that Stanford requires a referral from oncologist to get started with their navigator. I am going to UCSF first since I am already established there.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

Geoman
Posts: 16
Joined: Sun Apr 29, 2018 8:48 pm

Re: Scan results not what I had hoped for ...

Postby Geoman » Tue May 15, 2018 7:59 pm

Hi Shana

This may be a long way from home for you but md Anderson has a trial starting for mss crc. Durvalumab in combo with trametidib.

Fight crc.org has links to many clinical search sites that you can subsribe to and they will match you with current trials and email clinical trials that develop.

I pray for your success. Stay hopeful.

Mitch
Dx @ 44, rectal cancer-stage 4 with Mets to liver 8/16
CEA 19
Kras g12d; Braf
Ypt3,ypN1a,ypM1
5 rounds 5fu with avastin (4) 9/16-11/16
PVE/Liver Resection 12/16
28 days rad/xeloda 2/17-3/17
APR-4/17
Clear Margins
7 rounds 5Fu with avastin- 5/17-8/17
CEA-1.2
NED-12/17, 1/18,
Multiple spots in lungs-5/18

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Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ...

Postby Shana » Tue May 15, 2018 10:15 pm

Geoman wrote:Hi Shana

This may be a long way from home for you but md Anderson has a trial starting for mss crc. Durvalumab in combo with trametidib.

Fight crc.org has links to many clinical search sites that you can subsribe to and they will match you with current trials and email clinical trials that develop.

I pray for your success. Stay hopeful.

Mitch


Thank you so much for your prayers and encouragement Mitch!
I copied and pasted the drug combo you listed and saw that I must have looked at it earlier since it was highlighted on google. Thank you for the links and yes I subscribe to fightcrc.org as well as numerous other groups and publications. It can be overwhelming at times but knowledge is powerful and the best way to self advocate and navigate this disease.

I am going to UCSF first and then possibly Stanford since both are closer to me in the SF Bay Area but my oncologist also suggested MD Anderson so it's definitely on the radar. I will travel anywhere in the USA if needed to get potentially life saving treatment.

Praying for your success too, I know you have a lot going on as well!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18


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