Scan results not what I had hoped for ...

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DarknessEmbraced
Posts: 3044
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Wed May 16, 2018 8:43 am

I'm sorry it wasn't better news and hope your chemo shrinks your tumors!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

lovelife789
Posts: 97
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Wed May 16, 2018 11:00 am

I'm sorry the result isn't what you had hoped for, but when there's life there's hope!! next result will be better, fingers crossed for you!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Wed May 16, 2018 7:26 pm

DarknessEmbraced wrote:I'm sorry it wasn't better news and hope your chemo shrinks your tumors!*hugs*


Thank you DE! I'm hoping for shrinkage and appreciate the hugs :)
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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Wed May 16, 2018 7:32 pm

lovelife789 wrote:I'm sorry the result isn't what you had hoped for, but when there's life there's hope!! next result will be better, fingers crossed for you!


Thank you lovelife! I agree, hope is always there! I have an appointment at UCSF next Wednesday with the same oncologist I saw last year to review my current status. He's smart, kind and funny and I know he'll help guide me towards the best path.

Thank you for the encouragement, it means a lot. Keeping my fingers crossed 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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Caat55
Posts: 434
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed May 16, 2018 10:25 pm

Shana,
I am very sorry you got this news. Strength in mind and body have to count for something. Your posts of support mean a lot to all of us. Hope me can do the same for you.
American Cancer Society got us inexpensive rooms when we went in for doctor's appointments as the traffic makes it so hard to get into the city or down the Pennisula. It was so much easier to be just 15 minutes away, not nearly as stressful as the 3-4 hour trip. I wonder if they pay for airfare? I can message you the contact number if you would like.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Thu May 17, 2018 7:59 pm

Caat55 wrote:Shana,
I am very sorry you got this news. Strength in mind and body have to count for something. Your posts of support mean a lot to all of us. Hope me can do the same for you.
American Cancer Society got us inexpensive rooms when we went in for doctor's appointments as the traffic makes it so hard to get into the city or down the Pennisula. It was so much easier to be just 15 minutes away, not nearly as stressful as the 3-4 hour trip. I wonder if they pay for airfare? I can message you the contact number if you would like.
Susan


Thank you Susan, I appreciate your support and kind words. I'd love to get the contact number from you, please message me when you have time. San Francisco isn't too bad, about 90 minute drive but Stanford would be closer to 3 hours I think.

Today was a rough day... we attended a memorial for my daughter’s mother in law. 12 yrs of battling breast cancer, it was so hard not to visualize myself there. Trying so hard to remain positive in spite of my fears. Maybe everyone feels their own mortality more during times of grief.

The sun will come up tomorrow and so will I and I'll move forward and regain my spirit because it's how I cope :)
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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Caat55
Posts: 434
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu May 17, 2018 10:04 pm

https://www.cancer.org/treatment/suppor ... tners.html

For more information or to request hotel lodging, please contact the American Cancer Society at 1-800-227-2345

Lodging support from ACS.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Fri May 18, 2018 10:07 pm

Thank you Susan! :)
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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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

Postby Phuong » Sat May 19, 2018 7:49 pm

Sorry you're going through this Shana. Have you had genetic testing done? It may help you out with narrowing the scope of which trials you want to look at. I think it usually takes a couple of weeks, so you might want to ask your onc about it.
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Sat May 19, 2018 8:32 pm

Phuong wrote:Sorry you're going through this Shana. Have you had genetic testing done? It may help you out with narrowing the scope of which trials you want to look at. I think it usually takes a couple of weeks, so you might want to ask your onc about it.


Hi Phuong and thank you!

I had the UCSF 500 genetic testing July 2017. It showed no mutations... MSS and KRAS wild. I don't know if there are more tests that I should have but I will definitely ask.

I have an appointment with Dr. Michael Korn who is the principal investigator at UCSF on clinical trials for gastric cancers. Interestingly he is also now chief medical officer for Caris Life Science which is focused on Precision Oncology. I want him to review my last four scans and my treatment since I saw him last year. I am hoping he will have some fresh ideas.

Keeping my fingers crossed and feeling thankful that overall I feel great. I hope you're doing well 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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

benben
Posts: 268
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Tue May 22, 2018 11:30 pm

Shana,

My thoughts and prayers are with you.
You're such a kind soul and solid warrior.
I hope a plan of action finds its way to you soon.

much love!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR! - NED

Caat55
Posts: 434
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed May 23, 2018 3:28 pm

Hoping this gorgeous spring day finds you well.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Wed May 23, 2018 10:19 pm

benben wrote:Shana,

My thoughts and prayers are with you.
You're such a kind soul and solid warrior.
I hope a plan of action finds its way to you soon.

much love!


Thank you Ben! I'm hanging in there and will post the latest!

Love, Hugs and Rainbows to you
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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

User avatar
Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Wed May 23, 2018 10:21 pm

Caat55 wrote:Hoping this gorgeous spring day finds you well.
Susan


Thank you Susan, I think you must have the good weather today, it's like a day in March down here! Hope you are doing well today too!

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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

User avatar
Shana
Posts: 379
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scan results not what I had hoped for ... Update with UCSF

Postby Shana » Wed May 23, 2018 10:36 pm

I met with Dr. Korn at UCSF this morning. He was very reassuring and said the new CT is not a confirmed progression in his opinion but definitely a heads up and gave me a game plan. He thinks my timing is good to look ahead especially since I’m healthy otherwise and would make a good trial candidate. He connected me with the UCSF Immunotherapy team.

They will contact me regarding a clinical trial which is looking for patients with a particular biomarker which I haven’t been tested for as yet. I wish I had remembered to ask for more info about the bio-marker but I thought he’d notate the trial in his notes. He also recommended that I make an appointment with Stanford regarding 2 of their trials which he thinks I would be eligible for. Unfortunately I’m not a candidate for the UCSF trial that includes Xeloda due to my toxic reaction to it last year.

In the meantime we will continue and monitor with repeat CT in 10 weeks and he told me not to freak over CEA numbers alone. Thank you everyone for the well wishes and prayers, I am feeling less anxious. I think it went well overall, just hoping the next scan is stable but feeling good about getting a plan in place. I know there's going to be some humongous scanxiety for my next one which will tip the scales one way or the other. Keeping fingers crossed and doing whatever I need to do to stay ahead of this.

You are all in my thoughts and prayers when I read your struggles. I cheer for you when you get good news. This place gives me hope and it's because of the kindness of my fellow warriors. :)
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) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!


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