Scanxiety, here we go again.

Please feel free to read, share your thoughts, your stories and connect with others!
orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Scanxiety, here we go again.

Postby orlar » Sat Jul 14, 2018 2:51 pm

Just had my 10th treatment yesterday on this regimen and ONC is currently planning on chemo holiday. I have a CT scan on Thursday (ins. wouldn't approve PET) and I have a lot more anxiety this time. April's PET showed tumors shrinking, but then I got a pretty severe cold during mid May that lasted well into June. One of May's treatment delayed 2 weeks due to high temps and the one right after delayed a week due to cold. These have been my only delays since starting chemo last July. My CEA bottomed out in May at 5.5 and has crept back up to 6.9 since. Hoping the CEA rise is due to that, but ONC is concerned chemo may have stopped working. We have already been talking about possible referrals and trials due to how aggressive the cancer has acted in the past. I normally get a call from the office when they get the results as a heads up. Call from the nurse is a good thing, call from the ONC is not. I have an office visit scheduled the week after the CT.

It's been a horrible week with my father-in-law passing. He led a very good life to the ripe age of 93 and will be terribly missed. As I sit here, the tears can barely form due to dryness in my eyes from the chemo. Some days I really do hate the chemo side affects.

After yesterday's treatment I visited my original chemo buddy upstairs in the hospital (we sat next to each other during my first 6 month regimen and had a lot of long conversions). She's been battling for several years now and is so very tired. I fear what may be coming next.

I normally don't spill my guts out, but after this week and when I think about the scan coming up I sure could use a boost of positivity.
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

User avatar
LPL
Posts: 410
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Scanxiety, here we go again.

Postby LPL » Sat Jul 14, 2018 5:50 pm

Hi orlar,
Some weeks are for sure worse than others!
And scanxiety is making things even worse - I do understand that ! even though I’m not the one in my family having the scans... I also get the scanxiety.
I wish I could do more but I am sending a Lot of positive vibrations for your upcoming scan!
Kind regards /LPL
P.S. I see that you have the same Kras mutation as my husband. I have not seen many of those..
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Lee
Posts: 5678
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scanxiety, here we go again.

Postby Lee » Sun Jul 15, 2018 4:25 pm

(((oriar)))

As LPL wrote, some weeks are worst than others. And I too am sending positive thoughts and prayers for you. Scanxiety are very stressful in themselves, butt add your FIL death, I am so sorry!

Please feel free to vent here all you want or need to, we do get it.

Good luck with your upcoming scan and keep us posted,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

DarknessEmbraced
Posts: 3126
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scanxiety, here we go again.

Postby DarknessEmbraced » Mon Jul 16, 2018 9:55 am

I'm so very sorry for the loss of your father in law and hope you get good news!*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

Beccaschocked
Posts: 30
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: Scanxiety, here we go again.

Postby Beccaschocked » Mon Jul 16, 2018 12:16 pm

I’m so sorry to hear about your loss and the hard week. I know a looming scan can heighten all of those feelings.

Sending positive thoughts and prayers your way! Let us know how it goes.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection followed by 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.
7/2018- Clear scan NED

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Scanxiety, here we go again.

Postby orlar » Fri Jul 27, 2018 12:45 pm

Hi Guys, thanks for the good vibes. I did get a call from the ONC last week so I knew the scan wasn't so good. I met with my ONC yesterday to go over the results. CEA up to 7.8, no new lung nodules but existing ones enlarged. Main liver lesion essentially stable in right lobe, but 2 new ones in each of the left and right lobes. Mild right side hydronephrosis and hydroureter (yeah, I had to google it) due to secondary interval growth in retroperi. Oh by the way, an aneurysmal dilatation which has never been mentioned before. The Irinotecan and Avastin unfortunately stopped working at some point.

ONC didn't think Lonsurf or Stivarga was the best option for me and suggested clinical trials next. I had been doing some research and ONC is checking on a few I had mentioned. Also, ONC is referring me to my 2nd opinion ONC so I can get their take on things. Waiting to hear from them on scheduling.

I don't want to upset anyone reading, but I always ask the question "How long if nothing works or no treatment". My answer is 3-6 months due to how aggressive it's been in the past. I'm sure I will try a trial if available, but weighing the choices of clinical trials and quality of life issues is another post altogether.

Anyways, already had a trip scheduled the first of Aug. and now working on a trip back to my home town in the Midwest (heat, humidity ugh!) to visit friends and relatives while on this short break. Thanks for all the knowledge and support this board and members provide!
Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

User avatar
WriterGirl1969
Posts: 493
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Scanxiety, here we go again.

Postby WriterGirl1969 » Sat Jul 28, 2018 8:11 am

Hopefully you'll find some trials with promise, Orlar. I've always been amazed at all the hope and encouragement this site can provide when doctors are all out. Will keep you in thoughts 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.”

DarknessEmbraced
Posts: 3126
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scanxiety, here we go again.

Postby DarknessEmbraced » Sun Jul 29, 2018 9:28 am

I hope you will be able to find a clinical trial which will help!*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

mhf1986
Posts: 148
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Scanxiety, here we go again.

Postby mhf1986 » Fri Oct 05, 2018 7:17 pm

Hi Larry, Check out my DH's timelime below...it's similar to yours. May I ask what trial you are considering? We are investigating them now.

Dr. is calling insurance company about Lonsurf and DH may try that while we decide what to do next. If the Lonsurf is terrible, we will move on.

Thanks,
M
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Scanxiety, here we go again.

Postby orlar » Sat Oct 06, 2018 9:55 pm

I just started my trial treatments last week. Feel free to PM me and I can go into a few details.

Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

User avatar
CRguy
Posts: 9612
Joined: Sun Feb 10, 2008 6:00 pm

Re: Scanxiety, here we go again.

Postby CRguy » Sun Oct 07, 2018 12:52 am

orlar wrote: I don't want to upset anyone reading, but I always ask the question "How long if nothing works or no treatment". My answer is 3-6 months due to how aggressive it's been in the past. I'm sure I will try a trial if available, but weighing the choices of clinical trials and quality of life issues is another post altogether.
....... Thanks for all the knowledge and support this board and members provide!
Larry

My apologies for not replying into your topic sooner buddy .... BUTT ....
what I quoted above IS the essence of this forum
we get the REAL DEAL details out there
we talk WHAT IS, not what if
WE are here for each other unconditionally
we pay it forward with knowledge, compassion, experience and understanding
we kick ass and take names

THAT is who you are ... WORD !

any time you want to make ANY post, "another post altogether" .... bring it
If you need to speak to us ... We need to hear you

Sending MEGA posi++++++ Vibes that the trial IS what you need

PM me anytime
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

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Scanxiety, here we go again.

Postby orlar » Mon Oct 08, 2018 12:21 am

Thanks everyone for the good vibes!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56


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



Who is online

Users browsing this forum: dragonpppoe, Google [Bot] and 40 guests