Lukewarm to positive?

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Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Fri Apr 24, 2020 9:51 am

Thanks everyone! As you can imagine, DH would rather avoid another trip to the cutting board, but there really is no alternative - without surgery, he'd end up paralyzed. It cannot come soon enough! We're lucky in MT to have very few COVID19 cases so other medical issues can be treated without delay.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Fri Apr 24, 2020 11:58 am

Brilliant news on the cancer front , so pleased for you both .
But I do feel for him , I can totally understand it’s depressing to face more surgery .
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 .

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Thu Apr 30, 2020 2:07 pm

Huh. Got the PET report today and it's not as "clean" as I thought:

"There remains abnormal radiotracer uptake along the right lateral margin L4/medial margin of the right psoas the corresponds to abnormal postcontrast enhancement on the 4/7/2028 MRI. This is most concerning for residual malignancy but has improved compared to the Jan 17 2019 exam. Maximum SUV measures
5.6 (prior 17.2)". We never heard anything from DH's onc regarding this. From what I've read, SUV above 2.5 is definitely concern for malignancy...

Then I read the surgeon's notes for tomorrow and they say:

"Recommedation: I have recommended that [the patient] get resection of the tumor and clearance of compression involving the L3 and L4 nerve roots dorsal lateral are delayed fusion using BMP there is no room for structural interbody cages pedicle screw rod construct for spinal reconstruction from L3-5."

I wonder if this means that there is residual tumor and that the surgeon will take it out? I guess I should ask directly, or call the oncologist... But surgery is tomorrow so hopefully answers then? Meanwhile I post here, just to get it out of my head :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Fri May 01, 2020 1:29 pm

And surgery is DONE! I was correct - they did remove some remnant tumor by DH's 4th lumbar vertebrae; the surgeon was confident he got everything, and he was also able to create lots of space for nerves, as well as fuse L3-4-5 for stability. Phew, I'm so relieved, that bit about uptake in the psoas muscle had me really worried. DH should be NED for a while now :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Fri May 01, 2020 4:14 pm

Well that’s a very well earned “ Ned” . Hope he has a smooth recovery and you can both definitely relax for a bit now !
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 .

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Fri May 01, 2020 4:38 pm

Thanks, Stu! It is a long and winding road, that's for sure...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Gravelyguy
Posts: 348
Joined: Thu Jul 05, 2018 6:03 pm

Re: Lukewarm to positive?

Postby Gravelyguy » Fri May 01, 2020 5:26 pm

That is great news, Claudine!

After he gets out, time to celebrate!!

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 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Wed Jun 10, 2020 3:43 pm

Well, this morning DH had both a control scan for cancer and an X-ray to check on his spinal fusion surgery, and the title of this post is still very much appropriate...

The lukewarm (copied from the scan report - I'm starting to know the technicians, this one is the "anal" one)":

+ Interval placement of posterior fusion hardware within the L3 and L5 vertebral bodies with extension of the L4 lytic defect with possible involvement of the right psoas muscle and the central canal. Findings are compatible with an expanding osseous metastasis.
+ Ill-defined retroperitoneal soft tissue fullness in the upper abdomen adjacent to the origins of the SMA and celiac trunk. This may be postsurgical in nature in a patient status post resection of the left adrenal mass. Possibility of retroperitoneal metastatic disease is not excluded.
+ Somewhat rounded, 2 cm in diameter hypodense mass associated with the tail of the pancreas interposed between the tail the pancreas, spleen and upper pole of the left kidney. This was present on the PET-CT 4/22/2020 but does not appear hypermetabolic and is new in comparison to the prior CT scan of 12/6/2019. Question if these changes reflect sequela from a prior episode of pancreatitis. This could also be postsurgical in nature status post resection of the left adrenal gland. Possibility of primary pancreatic or metastatic neoplasm is less likely but not entirely excluded and attention to this on follow-up imaging recommended.

The positive: neither oncologist nor neurosurgeon appear particularly worried. Onc did not even mention the retroperitoneal fullness or hypodense mass when he spoke with DH; and he says it's too early after spinal fusion to say anything about L4. He just told DH to come back for a control scan in September. The neurosurgeon spent a great deal more time poring over the scan results with DH, and he thinks that the L4 thing may be related to surgery. Said that scan techs are really worried to miss something so they report anything out of the ordinary.

I'd much rather that DH's scan was 100% "unremarkable" (thinking of you AmyG!), but it is what it is. At least, there's no progression of the remaining tiny lung nodules, and DH gets to have a chemo-free summer. And the fusion seems to be progressing well based on X-rays. Bummer we can't travel to our house in France because of that damn virus!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Wed Jun 10, 2020 3:56 pm

Got their back well covered there ! Sounds more to the positive to me and to be fair I would be a back covering kind of person in the world we live in .
If two Doctors who are visually used to seeing these areas are happy I would go with it .
My mum has had so much work done in there the radiologists don’t have an easy time with all the scar tissue and odd shaped organs , that’s if they get a clear image . I think the more surgery the less clear it becomes .
He still is heading in a good direction.
2020 has not been kind at all . It has a lot to do to transform itself !
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 .

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Wed Jun 10, 2020 4:28 pm

I love your encouraging posts, Stu! The adrenal glands are quite close to the SMA (superior mesenteric artery) and the celiac trunk, and what DH had in February is called a Laparoscopic retroperitoneal adrenalectomy... So it would make sense for the retroperitoneum to be "upset".

I'll try to stay away from Dr Google for the next 3 months and enjoy life as it is :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

boxhill
Posts: 662
Joined: Fri Apr 06, 2018 11:40 am

Re: Lukewarm to positive?

Postby boxhill » Thu Jun 11, 2020 1:42 pm

Sounds like a good plan, Claudine. I hope it all turns out to be surgery-related changes.

BTW, scans are read and reported on by radiologists, not scan techs. The latter just take the pictures. :)
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 and 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
Stop Key
8/20 MRI NED

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Thu Jun 11, 2020 1:55 pm

BTW, scans are read and reported on by radiologists, not scan techs. The latter just take the pictures.


Ha, my mistake! Thanks for the correction :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Thu Jun 11, 2020 5:30 pm

Sorry you can’t get to your house in France . Some travel is opening up if you don’t mind quarantine! I have enjoyed some great holidays in France .

In the early days the lists of possibilities on her scans just went on and on . Including a breast lump , an aneurysm in her kidney , thrombosis in one of her arteries, then the difficult to interpret bits post surgery ! Eventually it did settle .
One time I could tell she had a recurrence as they did something slightly unusual after the scan . I knew right there and then she had a recurrence. All they did was ask her to wait and not change until they were sure of the quality of the image . I knew they meant a clear view of an area of concern . I was not wrong either !

It’s so stressful at times . However it’s your turn to compartmentalise your next three months and enjoy it . Stuff everything to do with cancer and the break away from it will give it time to heal .
I trust that the surgeon/ oncologist have a feel for it .

Have an abundance of rest and relaxation.

Stu ( one mum enjoying her boys during lockdown , it’s so good to have them around )
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: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Fri Jun 12, 2020 10:47 am

Thanks Stu, we will do our best to put this whole cancer thing in parentheses for a few months! As French citizens we could travel there this summer, but would have to quarantine 2 weeks (I certainly don't want to risk bringing it to my aging parents), and since DH will be in the thick of PT/spinal recovery, it's probably better to stay in the US. Which is ok - Montana is beautiful in the summer :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby Claudine » Thu Sep 24, 2020 6:57 pm

Quick update. DH had his control scan on Tuesday and met with the onc today. All clear! Huge relief, now we can continue with our lives for another 3 months, until the next bout of scanxiety.
His right quadriceps is still only about 20-25% of normal, but he’s making progress, with PT twice a week. He’s been able to resume bike commuting, which is huge (especially since he still can’t drive).

And we adopted two 5-month-old kittens on Saturday, after saying goodbye to our old cat Gali who was 16. Life could be much worse. One day at a time!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report


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