Scanxiety: Anyone else having testing now?

Please feel free to read, share your thoughts, your stories and connect with others!
zephyr
Posts: 106
Joined: Thu Aug 18, 2016 7:31 am

Re: Scanxiety: Anyone else having testing now?

Postby zephyr » Thu Apr 12, 2018 12:32 pm

Thanks, Robin & Larry. It's so nice to be able to share good news with people who really get it.
Congrats to you too, Larry!
Robin ... hoping you'll be posting a good report very soon!
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016 Folfox
Jan-2017 Dropped oxaliplatin, continuing with 5FU, added Avastin
Aug-2017 Dropped Avastin, continuing with 5FU
Dec-2017 Chemo stopped working, lung mets growing but CEA stable, considering other treatment options
Jan-2018 Begin Folfiri & Cyramza (ramucirumab); also receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break

User avatar
Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Scanxiety: Anyone else having testing now?

Postby Robino1 » Thu Apr 12, 2018 1:29 pm

I won't know until next Thursday. That's when I go in for my next round and I will be seeing the oncologist then. My blood work shows on my 'Patient Portal' but that is the only thing that gets posted.

I might try calling the office and see if I can get the results sooner but a part of me wants to put it off for as long as possible. Such a conundrum.
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; 107; 119
BRAF V600e

User avatar
WriterGirl1969
Posts: 489
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Scanxiety: Anyone else having testing now?

Postby WriterGirl1969 » Thu Apr 12, 2018 7:49 pm

Long overdue hello, Diana. :)
Glad to hear that your numbers went back to normal. I'm due for my CT tomorrow, results next Tuesday, so I'm in full scanxiety mode. I try to deny it, but I know it's true. After all, here I be. <:- )

I'll keep praying for you, you keep praying for me.
Smiles, hugs and prayers.

--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Scanxiety: Anyone else having testing now?

Postby Robino1 » Fri Apr 13, 2018 7:04 pm

WriterGirl1969 wrote:Long overdue hello, Diana. :)
Glad to hear that your numbers went back to normal. I'm due for my CT tomorrow, results next Tuesday, so I'm in full scanxiety mode. I try to deny it, but I know it's true. After all, here I be. <:- )

I'll keep praying for you, you keep praying for me.
Smiles, hugs and prayers.

--Tracy



Thinking of you today!

Well I decided to call for my results. Doc hasn't reviewed them yet so I doubt she will get to them before the office officially closes to phone calls. I will call again Monday and the lady that I spoke to today said if I have any trouble getting to the other office, call her and she will help me facilitate getting the results. The best they can tell me over the phone is not good or (GOD I HOPE) Good News, from what I understand.

That's where I stand right now. I will try to enjoy the weekend :D

The one thing that keeps me more positive is that my CEA did go down even after a 5 week break. My hands surely needed that break. I was getting the hand/foot thing but not on the feet. That's with the 5FU. I didn't know that 5FU would do that also. I have read about Xeloda doing that to the hands. I was definitely not prepared for that side effect. Whew. Dropped the bolus of 5FU before hooking up to the pump. Helped a bit this round. We'll see going forward.

It is what it is... ;)
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; 107; 119
BRAF V600e

User avatar
Shana
Posts: 383
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Fri Apr 13, 2018 10:45 pm

Robino1 wrote:I won't know until next Thursday. That's when I go in for my next round and I will be seeing the oncologist then. My blood work shows on my 'Patient Portal' but that is the only thing that gets posted.

I might try calling the office and see if I can get the results sooner but a part of me wants to put it off for as long as possible. Such a conundrum.


I was thinking of you today and hoping you had your results. I had CEA drawn on Wednesday and will get results on Monday. I will be seeing one of the other oncologists on Monday so it will be interesting to hear her interpretation of the results whatever they might be. I hope we both get positive news! Have a good weekend and lets both try not to think about 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) 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: 383
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Fri Apr 13, 2018 10:58 pm

zephyr wrote:Just received my latest scan results. After 9 months of "bad" scans, I finally have a good one. All lung nodules have decreased by about 30% and there's no evidence of any new metastases! I'm thrilled but also overwhelmed by hope.


What wonderful news! I am so happy for you. We all gain positive feelings with your good news!! :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) 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
Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Scanxiety: Anyone else having testing now?

Postby Robino1 » Mon Apr 16, 2018 5:18 pm

Well, I call the office today. They have me come in to get the results. The ascites is back (I knew in my heart it was because of slight'ish bloating) and her words "It's a little bit not good". Some of the seeding is becoming active again. She didn't give me a copy of the results. Didn't even have them in her hand.

We are introducing oxaliplatin again on Thursday then I fly out right after to go on our mini vacation. Oh Joy. Going to where it is colder with the oxaliplatin cold hand syndrome. :shock:

On Thursday I will try to get my hands on the results. I Don't Get It. My CEA is dropping again but the ascites is showing its ugly head.

I had my little breakdown and hopefully got it out of my system. I sure as hell can't cry when I get back on that damned oxaliplatin. :roll:

Well that's it in a nutshell. I hope that the oxaliplatin knocks those cancer cells back into submission. I did take 5 weeks off (and the CEA dropped during that time!) to enjoy the kids and grandkids. We made some happy memories. Time to scratch Yellowstone off my bucket list. We are staying in a cabin just 5 minutes from the entrance. I finally get to see Old Faithful in real life. I have always wanted to see it since learning about Yellowstone in grade school. :D

Cancer won't break me and keep me from enjoying life. Dammit! :twisted:
Last edited by Robino1 on Mon Apr 16, 2018 6:57 pm, edited 1 time in total.
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; 107; 119
BRAF V600e

User avatar
Shana
Posts: 383
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Mon Apr 16, 2018 5:55 pm

Robino1 wrote:
Cancer won't break me and keep me from enjoying life. Dammit! :twisted:


(((Hugs)))

You were in my thoughts again today. That sentence above is the only part of your post that I want to think about :)

It always feels like a punch in the gut (literally and figuratively) when test results hit.You already know how strong you are and you'll do whatever you need to do and enjoy your life every single day.
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!

SoConfused
Posts: 1024
Joined: Mon Jan 30, 2012 2:40 pm

Re: Scanxiety: Anyone else having testing now?

Postby SoConfused » Mon Apr 16, 2018 7:44 pm

hi everyone - I had my scans today and have already received a copy of the report ... interesting, I had zero anxiety this time both leading up to and during the scans which was a change for me.

Unlike other times, the scans/report have picked up on a concern which requires further follow up by PET or colonoscopy. Well, I am a nervous wreck and having so man flashbacks to when I was first diagnosed.

Basically, today’s abdominal/pelvis scan (CT w contrast) is showing a new 13 mm nodular density along the posterior margin of the suture line from my original anastomosis - my colon resection surgery was on June 29, 2011 ... I’ll never forget.

This is concerning for recurrence of cancer ... but the report notes there is no evidence of metastatic cancer. This is the only change observed from my december 2017 scans.

My CEA last month was normal.

What are the chances this is something other than a recurrences? what are some of the other possibilities? if not a new tumor, what can it be?
Stage IV CC

User avatar
Shana
Posts: 383
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Tue Apr 17, 2018 3:28 am

SoConfused wrote:My CEA last month was normal.

What are the chances this is something other than a recurrences? what are some of the other possibilities? if not a new tumor, what can it be?



Im so sorry that you're facing uncertainty again after so many years. I hope that this new finding can be easily and successfully treated, whatever it might be. Maybe it's scar tissue... I don't know enough to speculate on anything more and I'm sure your doctor is the best to advise you. A normal CEA is a good sign, I hope you get more information soon!
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
WriterGirl1969
Posts: 489
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Scanxiety: Anyone else having testing now?

Postby WriterGirl1969 » Tue Apr 17, 2018 3:56 pm

Robino1 wrote:Cancer won't break me and keep me from enjoying life. Dammit! :twisted:


Sorry to hear you have to deal with more. Hopefully things will settle down for you soon. I haven't been to Yellowstone, but I've been to the Theodore Roosevelt National Park, and it was A-MA-ZING! You're going to love Yellowstone. Here's to hoping old man winter finally lays down and lets us have some warm weather! :)

Sending some virtual hugs and prayers your way.

--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
WriterGirl1969
Posts: 489
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Scanxiety: Anyone else having testing now?

Postby WriterGirl1969 » Tue Apr 17, 2018 4:00 pm

Robino1 wrote:Thinking of you today!


I just got home from doctor's, and I'm all clear. Now officially 2 years NED. Although my blood-pressure in the doctor's office before he came in was 185 / 110. Yeeks. Thanks Robino and everyone for your thoughts and prayers. They are always appreciated. I know I haven't been around too much since Beans left us. I think I was still kind of in shock over that for a while. But I fully plan on sticking around for a long, long time. Here and just in general. ;-)

Smiles, hugs and prayers,
Tracy
(aka WriterGirl)
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
Shana
Posts: 383
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety: Anyone else having testing now?

Postby Shana » Tue Apr 17, 2018 4:09 pm

WriterGirl1969 wrote:
Robino1 wrote:Thinking of you today!


I just got home from doctor's, and I'm all clear. Now officially 2 years NED. Although my blood-pressure in the doctor's office before he came in was 185 / 110. Yeeks. Thanks Robino and everyone for your thoughts and prayers. They are always appreciated. I know I haven't been around too much since Beans left us. I think I was still kind of in shock over that for a while. But I fully plan on sticking around for a long, long time. Here and just in general. ;-)

Smiles, hugs and prayers,
Tracy
(aka WriterGirl)



So happy to hear your good news Tracy! I appreciate all of your support and contributions to everyone on this forum. Beansmama is forever in our hearts.

Wishing you NED forever!

Hugs,
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
Robino1
Posts: 461
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Scanxiety: Anyone else having testing now?

Postby Robino1 » Tue Apr 17, 2018 5:24 pm

WriterGirl1969 wrote:
Robino1 wrote:Thinking of you today!


I just got home from doctor's, and I'm all clear. Now officially 2 years NED. Although my blood-pressure in the doctor's office before he came in was 185 / 110. Yeeks. Thanks Robino and everyone for your thoughts and prayers. They are always appreciated. I know I haven't been around too much since Beans left us. I think I was still kind of in shock over that for a while. But I fully plan on sticking around for a long, long time. Here and just in general. ;-)

Smiles, hugs and prayers,
Tracy
(aka WriterGirl)


Excellent news!!! :D

I've started packing for the trip. Tomorrow is pampering myself day. Thank goodness the humidity is very low. I'll be able to straighten my hair and not the frizzies. :P

Thursday I go to the oncologist and thanks to the airline moving our flight up by a few hours, we leave for the airport as soon as I get home.

Can't wait to just do something fun. ;)
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; 107; 119
BRAF V600e

zephyr
Posts: 106
Joined: Thu Aug 18, 2016 7:31 am

Re: Scanxiety: Anyone else having testing now?

Postby zephyr » Wed Apr 18, 2018 10:12 am

Robino1 wrote:Cancer won't break me and keep me from enjoying life. Dammit! :twisted:


Enjoy your mini-vacation ... the time away from doctors, from infusions, and from scan reports.
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016 Folfox
Jan-2017 Dropped oxaliplatin, continuing with 5FU, added Avastin
Aug-2017 Dropped Avastin, continuing with 5FU
Dec-2017 Chemo stopped working, lung mets growing but CEA stable, considering other treatment options
Jan-2018 Begin Folfiri & Cyramza (ramucirumab); also receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Yahoo [Bot] and 36 guests