Freaking Out a Little

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crikklekay
Posts: 33
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Freaking Out a Little

Postby crikklekay » Thu Jul 19, 2018 11:14 pm

Okay so we’ve been planning, we’re so close to the end of his 12 rounds of chemo that we have been planning the future. Just two more treatments is our current mantra. Plans to go on a short trip, plans to find him a better job, looking forward to a life without chemo and being NED.

Tomorrow he’s going to a concert (Oncologist approved) and I was writing down his prescriptions just in case, and googled his chemotherapy regimen since I can pronounce the drugs but not spell them. Second link on the page was about a woman talking about her husband who went through all 12 rounds but found out the chemo had done nothing and it had progressed without slowing. The thread was filled with other people with similar circumstances. I’ll admit, I freaked out a little. I mean, I know reoccurrence is a possibility I just figured it would crop up in a year or so, not immediately after treatment is over.

So of course right after this we get his CEA report and his number went up from 3.6 to 4.7. I’m seriously freaking out. They scheduled for it to be retaken on July 30th and I’m trying not to have a meltdown. Is there anything that could cause a jump other than more cancer??
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

TerryC
Posts: 8
Joined: Mon Jul 09, 2018 12:48 am

Re: Freaking Out a Little

Postby TerryC » Fri Jul 20, 2018 12:20 am

Crikklekay,

How the CEA numbers turn out?

Hope the concert was fun.

~terry
4/17 Diagnosed CRC Stage IV with met. to liver 30+ tumors
4/17 - 3/18 Folfox-Avastin 23 rounds, every other week
4/17 -2/18 CEA 123 to 446 down to 5 for many months climbing slowly beginning in December to 57 ~ 2/18
3/18 Folfiri-Avastin
3/18 - 6/18 CEA dropped to 12 started climbing to now, 42.7

User avatar
CRguy
Posts: 9567
Joined: Sun Feb 10, 2008 6:00 pm

Re: Freaking Out a Little

Postby CRguy » Fri Jul 20, 2018 12:23 am

crikklekay wrote: They scheduled for it to be retaken on July 30th
Doing their job = the standard of care

crikklekay wrote: and I’m trying not to have a meltdown
SO..... DO NOT
“Do or do not. There is no try.” - Master Yoda


crikklekay wrote: Is there anything that could cause a jump other than more cancer??
MORE than you can shake a stick at
CEA is very prone to elevations due to ANY inflammation in the body,
especially in the chest = smokers have a higher "normal" range because of this.

The docs are doing their job

Take the trip
enjoy the concert

Life should not always be about cancer

In Harmony
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

AppleTree
Posts: 189
Joined: Fri Mar 18, 2016 8:16 am

Re: Freaking Out a Little

Postby AppleTree » Fri Jul 20, 2018 5:50 am

The good news is that your signature lists scans being good so far. CEA has never been a good marker for me. I finished my 12 rounds of Folfox in late April. Had CT scan in mid-June which was questionable. My PET scan is scheduled for next week. In the meantime, I booted it over to Europe with my 15 year old son for 2.5 weeks. Take the trip! Probably plan something low key. I could not do EVERYTHING I wanted to do, but we did a lot. I am hoping to bring him on another trip this summer too (shorter and more local!)
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

NHMike
Posts: 1550
Joined: Fri Jul 21, 2017 3:43 am

Re: Freaking Out a Little

Postby NHMike » Fri Jul 20, 2018 5:11 pm

crikklekay wrote:Okay so we’ve been planning, we’re so close to the end of his 12 rounds of chemo that we have been planning the future. Just two more treatments is our current mantra. Plans to go on a short trip, plans to find him a better job, looking forward to a life without chemo and being NED.

Tomorrow he’s going to a concert (Oncologist approved) and I was writing down his prescriptions just in case, and googled his chemotherapy regimen since I can pronounce the drugs but not spell them. Second link on the page was about a woman talking about her husband who went through all 12 rounds but found out the chemo had done nothing and it had progressed without slowing. The thread was filled with other people with similar circumstances. I’ll admit, I freaked out a little. I mean, I know reoccurrence is a possibility I just figured it would crop up in a year or so, not immediately after treatment is over.

So of course right after this we get his CEA report and his number went up from 3.6 to 4.7. I’m seriously freaking out. They scheduled for it to be retaken on July 30th and I’m trying not to have a meltdown. Is there anything that could cause a jump other than more cancer??


Mine went from 3.2 to 4.5. 3.2 was the last round and 4.5 was one month so I have some idea as to how you feel. I should probably get it taken again soon. But, as others said, it could be something else.

The oncologist ordered a CT scan which was clean.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

CLD
Posts: 192
Joined: Fri Mar 27, 2015 7:16 pm

Re: Freaking Out a Little

Postby CLD » Fri Jul 20, 2018 5:49 pm

After 3.5 years on Colon Talk I'm still not sure how to do links but I recommend Googling "Go live your life" a song by Wade Hayes, a stage 4 colon cancer survivor (who beat a lymph node recurrence in his diaphram and originally presented with liver spread). His story is amazing and I just watched his video again for inspiration and to keep focused on LIFE.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes involved
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX
N.E.D until June 2018
CT June 2018 Shows "micrnodular densities in lungs {treated for possible infection}, enlarged "possible reactive" lymph nodes in paraaortic area"
PET Scan 6/18
Biopsy confirms cancer in 2 Paraaortic lymph nodes / tons of testing scheduled
Folfiri to begin Aug 1
CEA:1

crikklekay
Posts: 33
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Freaking Out a Little

Postby crikklekay » Fri Jul 20, 2018 8:40 pm

It’s not that I think our life might have to be on hold should something be wrong, it just felt like as soon as I start to look forward to life without cancer we get what I assume is a bad test result. Like...the universe is telling me not to get cocky. I hope it is something else and not something sinister brewing. The last seven months has been brutal for both of us and we see the light at the end of the tunnel, so the thought of the tunnel getting longer is devastating.

I’m glad to hear an increase in CEA doesn’t automatically mean more cancer because that was my impression. He’s having a protein deficiency right now, maybe that has something to do with it?
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

User avatar
GrouseMan
Posts: 750
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Freaking Out a Little

Postby GrouseMan » Sat Jul 21, 2018 1:02 am

Generally speaking these small bounces around in the normal range for CEA are pretty meaningless. One shouldn't worry until there is sustained trend upwards out of the normal range. People for which CEA is a good marker will find it will move into the teens and 20's maybe even thirties and still nothing show up in CT scans. My wife's Peri mets were difficult to see, but eventually one got large enough to press on her ureter and her bowels enough that it caused a blockage, preventing anything to pass. She couldn't at that point get any nutrition, and wasted away. I think people obsess too much on a marker that might not mean anything in their particular case. My wifes started out at over 110 when diagnosed stage IVb. Chemo brought it down to as low as 2.2, but the Mets were still spreading in her abdomen even thought her spleen and liver mets were shrinking away. The Spleen met disappeared. The Peri Mets didn't produce as large of a CEA signal as the Primary and Liver mets did. I think her last CEA test was in the mid 30's after CT showed the Peri Mets continuing to grow and the clinical trial she was on she failed and was no longer a candidate for it going forward.

So everyone stop obsessing with these little number changes in the normal range. Enjoy your life rather than be miserable, as you never know how long you might have. Enjoy your time together rather than obsessing on what may turn out to be nothing.

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

stu
Posts: 759
Joined: Sat Aug 17, 2013 5:46 pm

Re: Freaking Out a Little

Postby stu » Sat Jul 21, 2018 7:15 am

Of course you are scared it’s only reasonable to feel frightened when illness shakes your world . I used to do exactly what Grouseman said and examine all my mum’s readings and it was really exhausting and they bounced about too so that made it even more exhausting . When they went up a point or two it did not equal a met and the next test it would drop down. Apparently someone said you might not even get the same reading if you took two on the same day . Somewhere along the process I must have stopped and wait now on scans .
But you are human and anxiety is horrible so be kind to yourself too .
My mum was always a stage 4 patient but sometimes I feel really sorry when I see people with lesser staging getting terrified when they read something .
It is just an anxiety trigger not a reality for your husband at this point in time and nothing to suggest it is either so you can go and enjoy his company in the full knowledge that today is a good day for you both.
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

crikklekay
Posts: 33
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Freaking Out a Little

Postby crikklekay » Sun Jul 22, 2018 10:04 pm

I’m sorry, I must sound awful freaking out over a tiny thing when things seem to be going okay. I didn’t really think before posting, I was just scared and needed to reach out. The Oncology nurse wasn’t returning my calls about his CEA number and when it finally popped up online and I saw that it went up I panicked. All I knew was an increase in CEA was bad, I didn’t know it could fluctuate in the same day or for it to go up and down is normal. I’m feeling better now after a little time to calm down and everyone’s posts, we had a nice weekend away and my DH enjoyed the concert. We’re still saving for another mini getaway, unfortunately a real vacation isn’t possible as neither one of us has any vacation days. Life goes on, and I’ll try not to focus so much on all the little things that could go wrong.

Thank you everyone for your advice <3
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

hawkowl
Posts: 109
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Freaking Out a Little

Postby hawkowl » Mon Jul 23, 2018 3:06 am

My oncologist didn't check mine when I was on chemo because he said it often fluctuates a lot during treatment
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

stu
Posts: 759
Joined: Sat Aug 17, 2013 5:46 pm

Re: Freaking Out a Little

Postby stu » Mon Jul 23, 2018 6:50 am

Great to hear you had a nice weekend and as you so rightly say when you get some knowledge it lessens the anxiety.
Hope all goes well for you both ,
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared


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