Scanxiety

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Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Scanxiety

Postby Shana » Thu Mar 01, 2018 5:08 pm

Hi all,

I'm scheduled for my quarterly CT tomorrow afternoon. My last one was in December and showed improvement from the prior one in September. I am hoping for a good one but can't help but feel anxious about what else might show up or signs of progression.

What do you do to lessen that anxious feeling? I don't expect to get my results before next Monday when I see my oncologist so it'll be a long weekend!

Thanks!
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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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Scanxiety

Postby Robino1 » Thu Mar 01, 2018 5:14 pm

Try to think positive thoughts. Get immersed in something that takes most of your attention. Doing puzzles or playing games on the computer works for me. I just got done with a 3,000 piece puzzle. Took me about 3 weeks and the loss of the dining room table to get it done. ;)

You got this!!! {{{{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; 107; 119
BRAF V600e

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Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety

Postby Shana » Thu Mar 01, 2018 5:26 pm

Robino1 wrote:Try to think positive thoughts. Get immersed in something that takes most of your attention. Doing puzzles or playing games on the computer works for me. I just got done with a 3,000 piece puzzle. Took me about 3 weeks and the loss of the dining room table to get it done. ;)

You got this!!! {{{{hugs}}}}


Thanks Robin!

I haven't done a puzzle in years! I'm wondering if the cat will allow it! I've been playing scrabble online vs the computer, it's only beaten me once so far. I slept a lot the past few days, couldn't figure out why or what was going on and then realized I was trying to escape thinking about tomorrow.

Staying positive as best as I can :)
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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: Scanxiety

Postby Caat55 » Thu Mar 01, 2018 7:34 pm

How about some binge watching of Jane the Virgin, The Crown or Crazy Ex-Girlfriend? I find a good escape calms my nerves.
Good luck!
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: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety

Postby Shana » Thu Mar 01, 2018 9:17 pm

Caat55 wrote:How about some binge watching of Jane the Virgin, The Crown or Crazy Ex-Girlfriend? I find a good escape calms my nerves.
Good luck!
Susan


I am checking Netflix and Hulu now, thanks for the suggestions, I definitely need an escape! It's finally raining so a good time for some binge watching!

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!

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: Scanxiety

Postby Caat55 » Thu Mar 01, 2018 9:19 pm

We are expecting snow tonight, this weekend here in Murphys. Funny, my Bay Area doctors always confuse Sonora with Sonoma.

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

User avatar
Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety

Postby Shana » Thu Mar 01, 2018 10:29 pm

I used to manage a hotel in Sonoma and people often confused us with Sonora when they were booking reservations so I'm sure it's pretty common. My doctors are in Marin and UCSF and always comment on how lovely the wine country is.

Murphys is beautiful! Stay warm!

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!

zx10guy
Posts: 174
Joined: Mon Jan 07, 2013 12:54 pm

Re: Scanxiety

Postby zx10guy » Fri Mar 02, 2018 5:56 am

There's no reason you have to wait all weekend for the report. Depending on when you have your scan done, you can most certainly get the results the same day. All you have to do is call the radiology office a couple hours after having the scan done and ask if the radiology report is ready. This is the same report your doctor is going to get anyways. Even if you have your scan done later in the day chances are good the report will still be done by end of day depending on how busy the radiologist is. I always try to schedule my scans to be done first thing in the morning. And call just after lunch time to see if the report is ready. All the times I've done this, the report was ready.

If the report isn't ready on the same day, there's a good chance it will be ready the next day. If the radiology office is open on Saturday, I would call back then if your report is not ready by the end of today.

Scanxiety for most people is totally unnecessary and you're putting yourself through undue stress for nothing. All it takes is for people to be proactive and pick up the phone.

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susie0915
Posts: 840
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Scanxiety

Postby susie0915 » Fri Mar 02, 2018 7:35 am

Hi Shana,
I totally get it. I get minor panic attacks when I get close to scan time. I'm generally a pretty calm person until I had to deal with this stuff. It is quite stressful. I can usually get my results by email by the next day. Sometimes it good and bad to have the results before you talk to oncologist. I know it is so difficult to relax. I'll be praying for good results.
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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Atoq
Posts: 306
Joined: Wed Oct 25, 2017 9:31 am

Re: Scanxiety

Postby Atoq » Fri Mar 02, 2018 1:04 pm

How is it going? I read a good book and cuddle the cat to avoid anxiety :)

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
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
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety

Postby Shana » Fri Mar 02, 2018 6:22 pm

zx10guy wrote:
Scanxiety for most people is totally unnecessary and you're putting yourself through undue stress for nothing. All it takes is for people to be proactive and pick up the phone.


susie0915 wrote:Hi Shana,
I totally get it. I get minor panic attacks when I get close to scan time. I'm generally a pretty calm person until I had to deal with this stuff. It is quite stressful. I can usually get my results by email by the next day. Sometimes it good and bad to have the results before you talk to oncologist. I know it is so difficult to relax. I'll be praying for good results.


Atoq wrote:How is it going? I read a good book and cuddle the cat to avoid anxiety :)

Claudia


Thank you for the advice and suggestions!

xz10guy, the best laid plans don't work out when the office is closed on Saturday, will make sure that my next scan is scheduled Mon thru Thurs!

Susie, I know you and I share that scan time feeling. Hopefully I will continue to get good results like you have had! I'll report back on Monday after I see the doctor

Claudia, I haven't started that book yet but I downloaded several Kindle ebooks to my iPad so I'm good to go! Our adorable bengal kitty is laying on the heating pad at the foot of my bed, she does wonders for me and I can tell her anything and she doesn't tell a soul! ;)
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!

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: Scanxiety

Postby Basil » Fri Mar 02, 2018 9:17 pm

Before cancer (2017 dx) I had never taken an anti anxiety med before. For scanxiety or other random cancer issues, I lean on Xanax. It works, at least for me. Only issue is it makes me really tired about three hours later.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

User avatar
Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety

Postby Shana » Sat Mar 03, 2018 1:29 pm

Basil wrote:Before cancer (2017 dx) I had never taken an anti anxiety med before. For scanxiety or other random cancer issues, I lean on Xanax. It works, at least for me. Only issue is it makes me really tired about three hours later.


I have Ativan left over from all the anti nausea drugs I got last year. I never liked taking it at home but I did ask for it in the hospital because it helped me sleep. Sometimes I'd just like to have a couple of margaritas and get silly but I've avoided alcohol except for a few sips of champagne at my daughter's wedding :) What have you heard about occasional very moderate alcoholic drinking?
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: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: Scanxiety

Postby Caat55 » Sat Mar 03, 2018 1:46 pm

Shana wrote:
Basil wrote:Before cancer (2017 dx) I had never taken an anti anxiety med before. For scanxiety or other random cancer issues, I lean on Xanax. It works, at least for me. Only issue is it makes me really tired about three hours later.


I have Ativan left over from all the anti nausea drugs I got last year. I never liked taking it at home but I did ask for it in the hospital because it helped me sleep. Sometimes I'd just like to have a couple of margaritas and get silly but I've avoided alcohol except for a few sips of champagne at my daughter's wedding :) What have you heard about occasional very moderate alcoholic drinking?


Well, I am part owner of a winery so I say it's all good. I haven't been told to avoid alcohol except right after surgery and now after port installed for a few days. I can't say that it has been appealing though, a few sips usually are enough. My husband did make a tasty old fashion one night which I njoyed. It is sad as I know our wines are good and they dont do anything for me. I understand wanting to be silly though, seems like it's been so long. Can't remember what we did the other day and I laughed so hard my gut hurt, only a few weeks out of surgery. Not enough of that these days.

We made a cannabis salve for sore muscles, aches. I am thinking it might be good for HF syndrome when I start chemo again. Oncologist didn't have a problem with that, wrote a recommendation for me. We have several friends who have legal commercial grows, offer me stuff but I am reluctant. Anyone with thoughts? It's all legal here in California.

S

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

User avatar
Shana
Posts: 399
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Scanxiety

Postby Shana » Sat Mar 03, 2018 6:39 pm

Caat55 wrote:
Shana wrote:
Basil wrote:Before cancer (2017 dx) I had never taken an anti anxiety med before. For scanxiety or other random cancer issues, I lean on Xanax. It works, at least for me. Only issue is it makes me really tired about three hours later.


I have Ativan left over from all the anti nausea drugs I got last year. I never liked taking it at home but I did ask for it in the hospital because it helped me sleep. Sometimes I'd just like to have a couple of margaritas and get silly but I've avoided alcohol except for a few sips of champagne at my daughter's wedding :) What have you heard about occasional very moderate alcoholic drinking?


Well, I am part owner of a winery so I say it's all good. I haven't been told to avoid alcohol except right after surgery and now after port installed for a few days. I can't say that it has been appealing though, a few sips usually are enough. My husband did make a tasty old fashion one night which I njoyed. It is sad as I know our wines are good and they dont do anything for me. I understand wanting to be silly though, seems like it's been so long. Can't remember what we did the other day and I laughed so hard my gut hurt, only a few weeks out of surgery. Not enough of that these days.

We made a cannabis salve for sore muscles, aches. I am thinking it might be good for HF syndrome when I start chemo again. Oncologist didn't have a problem with that, wrote a recommendation for me. We have several friends who have legal commercial grows, offer me stuff but I am reluctant. Anyone with thoughts? It's all legal here in California.

S

Susan


Hopefully you will be able to enjoy your wine once you're feeling better. I had a hard time with tastebuds after my two sessions of Folfox. Is that what you'll be starting with?

I tried CBD spray last year and not sure if it helped or not with my nausea. I got a prescription for Marinol to help stimulate my appetite but I only took one, it made me sleepy and the rest of the bottle is still in the fridge. I think I would go with ingestibles now if needed. My doctor was perfectly fine with me trying anything as long as I didn't smoke it so I'd go for it if you're comfortable and at least you know the source is good.

I am going to be in Wash D.C in 2 weeks for Call on Congress and it will be ST. Patricks Day so I bought some shiny green shamrock beads and might just go for some Irish themed drinks. I'm looking forward to being with so many other people who understand what we are going through, many of them forum members who I haven't met online yet.

Keep on laughing, it's the only way to get through some days :)

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!


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