Lukewarm to positive?

Please feel free to read, share your thoughts, your stories and connect with others!
Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Lukewarm to positive?

Postby Claudine » Thu Mar 12, 2020 2:59 pm

This morning, DH had the first CEA test since mid-January (when it had crept up to 10.2). This is post-adrenalectomy. His oncologist considers him "cancer free", that's at least how he worded it, which I found a little strange knowing that he still has a lytic tumor in his L4 (hopefully under control) and based on the December 9th scan, a small lung nodule. Well, the value today is 7.6. Not as good as we could have hoped for, but not that bad either, especially (as you all know) how CEA values can be... Unreliable. The onc has prescribed a spinal MRI for April 10; it will be good to get a better view of the tumor, all we've had since January 2019 is CAT scans which I don't think capture precisely what's going on in there.
Overall I'm relieved, after two months without chemo I wasn't sure what to expect but feared CEA in the double-digits.

With this out of the way, we're getting ready to fly to SoCal to visit our daughter and help her move out of her form, which is being closed on the 23rd. We will self-impose a 2-week quarantine upon our return. I couldn't imagine anything worse than being asymptomatic and contaminating the oncologist... We still don't have any diagnosed cases in Montana (but that's only a matter of time, IMO).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Thu Mar 12, 2020 3:21 pm

That’s positive news . Slowly but surely the tumour burden is going. He has been quite remarkable, and so have you .
All the best with helping your daughter . It is a confusing time . Made home made sanitizer today . Never saw this coming to be honest .

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
Oct 2018. Another clear scan .

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Lukewarm to positive?

Postby AlexandraZ » Thu Mar 12, 2020 4:20 pm

Amazing news!! I've heard the CEA often rises after surgery due to inflammation in the body, so it's great news that his is coming down!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Thu Mar 12, 2020 8:14 pm

Thank you both! Ive learned to appreciate every moment. Looking forward to another month of « normal » life before the MRI... As normal as things can be these days!!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Lukewarm to positive?

Postby Siti » Fri Mar 13, 2020 6:17 am

Same here Claudine, I’ve learned to appreciate what’s given to us even if it means living life 1 scan at a time. I promised to him that we’d celebrate each time we get a good scan (which we did 10 mins ago!). The both of you are remarkable and I hope the both of you will continue to celebrate love and life for a very long time to come! Take care :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Fri Mar 13, 2020 6:40 am

Excellent news . Delighted for you both .
Living a good life one scan at a time .
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
Oct 2018. Another clear scan .

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Fri Mar 13, 2020 10:05 am

Siti wrote:Same here Claudine, I’ve learned to appreciate what’s given to us even if it means living life 1 scan at a time. I promised to him that we’d celebrate each time we get a good scan (which we did 10 mins ago!). The both of you are remarkable and I hope the both of you will continue to celebrate love and life for a very long time to come! Take care :)


That's fantastic! Enjoy the between-scan time :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Wed Apr 08, 2020 1:46 pm

Rather positive today. DH had a lumbar MRI yesterday, following several weeks of debilitating pain in his right leg (and several falls when it suddenly "gave out", none with bad consequences fortunately). Turns out it's not the cancer growing again in his vertebrae, but what is called a lumbar foraminal stenosis - a narrowing of the space causing nerves to get pinched. From a slipped disk, itself a consequence of his weakened vertebrae. But PHEW! Big relief anyway! He's got some pretty strong pain killers, and PT would help (once life returns to normal and we can have PT appointments again...). If nothing helps surgery is an option, but he's already had quite a bit so his onc would like to see if this can be resolved without it.

Next CT scan early June... We can enjoy cancer-free life another couple of months! We'll celebrate with a long bike ride this afternoon, an activity we both love and that's safe for the back :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Thu Apr 09, 2020 4:25 am

Gosh no stress there ! :D So delighted it is something that can be worked on once this is over . That must have given you both a terrible fright . But good news is always welcome and I am so happy for you .
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
Oct 2018. Another clear scan .

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Thu Apr 09, 2020 1:06 pm

Thanks, Stu! Yes, anything that's not cancer is SO much better. And I guess all those years of me having overuse injuries count towards something - my PT still sees occasional patients and can take DH for an appointment tomorrow already!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

stu
Posts: 1345
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Fri Apr 10, 2020 6:12 am

Brilliant. Let the therapy begin !
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
Oct 2018. Another clear scan .

Claudine
Posts: 356
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Wed Apr 22, 2020 9:55 pm

Next episode of this saga... After two weeks of PT, it became clear that it wasn't going to cut it. DH's leg would suddenly "give out" on him and he'd fall. He couldn't drive - too dangerous. So we made an appointment with a neurosurgeon, who requested a PET scan to complement the MRI and make sure there was no active cancer. This was done this morning, and the awesome news is, there isn't! Not only in the spine, but anywhere in DH's body (from what the neurosurgeon could read; he did say that he's not a cancer specialist, but still, he's got to have a pretty good idea). Huge relief!
Unfortunately, the examination of DH's spine showed that he's in for quite the surgery... Next week Friday, he will get posterior fusion of lumbar vertebrae 3, 4 and 5 - his 4th (which contained the tumor) is too compromised for a lighter microsurgery, which could cause instability and result in a bigger surgery later on... So let's get that done right away instead.
It's a bit of a blow to DH's morale, he'd just started feeling like he could start cycling quite a bit again; recovery from the upcoming surgery will take a while (at least 3 months without activity, maybe a little PT after 6 weeks).
BUT IT'S NOT CANCER. IT'S NOT CANCER. I feel like a huge weight has been lifted off my chest, every since DH's back/leg started bothering him I was so worried! And with lockdown everywhere, it's not like we were planning to travel anywhere in the near future.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Gravelyguy
Posts: 300
Joined: Thu Jul 05, 2018 6:03 pm

Re: Lukewarm to positive?

Postby Gravelyguy » Thu Apr 23, 2020 9:54 am

That is so awesome, Claudine, that it is not a cancer surgery! Praying for great results.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Lukewarm to positive?

Postby Siti » Fri Apr 24, 2020 7:24 am

Looks like any other surgery is better than cancer! It’s strange how it has come to this. Sending positivity your way :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

boxhill
Posts: 527
Joined: Fri Apr 06, 2018 11:40 am

Re: Lukewarm to positive?

Postby boxhill » Fri Apr 24, 2020 7:36 am

No cancer is tremendously good news!

Hope he comes through the surgery with flying colors, and that the recovery period is tolerable and productive.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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



Who is online

Users browsing this forum: csfl and 20 guests