Lukewarm to positive?

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Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Lukewarm to positive?

Postby Gravelyguy » Fri Sep 25, 2020 6:14 am

That is great news. Enjoy the next 3 months!

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!
12/16/21 CEA 1.2 still NED!

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Sat Sep 26, 2020 3:12 pm

So , so pleased to read this !
Delighted for you both and you are getting well adapted at living the good life from scan to scan .
Long may it continue,
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: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Sun Sep 27, 2020 9:41 am

Thanks! I’m following closely the outcomes of Onvansertib treatment. It really seems to reverse the KRAS mutation. That would be a terrific addition to DH’s treatment, should his next scan be more worrisome than this one.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Mon Dec 21, 2020 12:25 pm

Well, here we go, another good scan but CEA values continue to rise - from 4.4 in June to 24 in September to 51 now!! The oncologist told DH that there's nothing to do yet - they're not going to resume chemo when nothing shows on the scan. I guess we'll trust his judgment (plus it's not like DH is looking forward to chemo anyway, ha). Maybe we should ask for a PET next time instead of a regular scan? In a way it's not too surprising that CEA values are abnormal, since the lytic tumor in DH's L4 is still there (albeit not expanding).
Meanwhile, we'll take the good news of no new tumor/no expansion and enjoy the holidays, I really hope you can all do the same - I haven't been here much lately but saw that Gina also got good news. One day at a time, that's the motto these days!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Thu Mar 18, 2021 3:24 pm

Scan result already posted (it took place this morning at 7am, DH hasn't seen the oncologist yet and won't until Monday). No change! I'm amazed given the rise in CEA (although we won't know this one until it's measured on Monday). I'm so freaking relieved :D :D :D

"Stable CT scan of the chest, abdomen and pelvis. No findings to suggest the presence of new or progressing metastatic disease."

Still some tiny lung nodules, but they've been unchanged for over a year. Same with a few other "weird" things such as a 2cm hypodense mass near pancreas, but that's stable as well. As for the lytic lesion in L4, the report says "Mixed lytic and sclerotic defect within the L4 is
stable. No new osteolytic or blastic bone lesions."

Now I wouldn't mind a PET scan in the near future if CEA still on the rise, but in the meantime, we'll get to enjoy visiting our daughter in SoCAL early April, then take a road trip/road biking trip to Utah! Woop!!!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Thu Mar 18, 2021 3:45 pm

Could not be happier for you both . Enjoy your trip and long may it last .
I came to the conclusion there are indeed lots of lumps and bumps inside the body particularly after treatment. As long as the radiologist is happy and they are not doing anything you can happily ignore them all .
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 .

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Lukewarm to positive?

Postby catstaff » Fri Mar 19, 2021 7:28 am

Wonderful news! His case makes me a little more optimistic since it has some similarities to my DH's -- KRAS G12, failed folfox (equivalent). One major difference is that my hubby's primary was far from unknown. But folfiri+bev worked for your DH so I'm hoping it will work for mine.

I noticed that onvansertib came up in this thread earlier. We tried to get DH into that trial but he was rejected due to his progression being a month too long after the end of first-line treatment. Apparently the progression in the primary while on folfox didn't count. They also seemed, shall I put it, unwelcoming of his atypical spread. I found a comment at, of all places a stock-tips site suggesting that the drug is unlikely to be the miracle treatment the company is touting. (For one thing, they don't take into account patients who dropped out of the trial.) PLK1 inhibitors also do not have a good track record so far; one has already failed a Phase III trial. But perhaps we'll have better information fairly soon.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Fri Mar 19, 2021 9:40 am

Yes, I'm not counting on a miracle new drug - I'm glad that Folfiri/Avastin worked so well on my husband, and he was able to stop before developing resistance so my assumption is that he would get back on it should something pop up. But there's definitely a lot of research aimed at the KRAS mutation, so hopefully something gets good results soon!
Good luck to your husband; mine found Folfiri/Avastin a lot easier to tolerate than oxaliplatin.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Fri Jun 18, 2021 1:24 pm

Well, DH had a CT scan with contrast yesterday. Given the significant rise in CEA value over the past 12 months (from 4 to 75), we were expecting the worst, but this is yet another stable scan:

Impression
1. Stable mixed lytic sclerotic lesion L4 vertebral body*
2. No new abnormalities are noted.

*Bones: Stable mixed lytic sclerotic lesion involving the right aspect of the L4 vertebral body. The patient has had prior posterior lumbar fusion at L3 through L5. No new bony abnormalities are noted. The margin with the thecal sac remains indistinct but this is unchanged.

He'll get his CEA measured again on Monday; I expect that it will be even higher, so maybe this time his oncologist will suggest a PET or MRI in the near future, but in the meantime, we can enjoy our 5 weeks in France (we're leaving on the 29th). I haven't seen my family and friends in two years, it'll be a joyful reunion!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Lukewarm to positive?

Postby Green Tea » Fri Jun 18, 2021 5:49 pm

Claudine wrote:...In the meantime, we can enjoy our 5 weeks in France (we're leaving on the 29th). I haven't seen my family and friends in two years, it'll be a joyful reunion!

Claudine -
Just a quick note to say that the trade unions in France have declared a national strike in the transportation industry for July 1, 2021. Here's hoping that you manage to reach your final destination in time.

Upcoming Transportation Strikes in France [2021]: Info & Best Tips
https://worldinparis.com/transport-in-france-strike-news-tips-for-traveling-to-paris

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Fri Jun 18, 2021 6:27 pm

Hahaha they always do that! Well we’re actually flying into Geneva and my brother is picking us up to take us to our mountain house so we should be fine, but thanks for the warning!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Sat Jun 19, 2021 3:07 am

Oh that’s fantastic news so far and lines you up for a good summer with your family. Enjoy every moment !
So pleased for you both !

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: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lukewarm to positive?

Postby claudine » Sun Jun 20, 2021 10:03 am

Thanks Stu! We celebrated with a 30 mile bike ride yesterday. DH is well on his way to reach his goal of 600 miles for this month :D :D :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lukewarm to positive?

Postby stu » Tue Jun 22, 2021 5:59 pm

That’s amazing ! He is super fit !
So good to read ! A real advert for treating this like a chronic condition !
Are you going to tackle the French mountains on bike ?
Only been to them when the snow was thick on the ground !
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 .

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Lukewarm to positive?

Postby Sunnycd » Wed Jun 23, 2021 7:30 am

Have a great trip! So glad to hear good news! I’ve been trying to learn French for the longest time, but I think I should just live in France for about 3 months to really pick it up. I will be here in NJ, living vicariously through you!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant


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