starting Lonsurf next week (very nervous)

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jep
Posts: 254
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

starting Lonsurf next week (very nervous)

Postby jep » Wed Apr 15, 2020 9:40 am

Hey, so I'm starting a new Lonsurf topic to see if anyone has any updated input or thoughts on this drug. My husband's oncologist presented his case to the tumor board AGAIN last week, and they all agree he should try Lonsurf. The reading I've done so far is not really making me feel very enthusiastic. They switched him off of his previous chemo regiment after his lymph nodes grew "slightly."

Looking for any knowledge of experience of this drug . . . thanks so much everyone!
jep
Wife of DH (47) Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -

stu
Posts: 1364
Joined: Sat Aug 17, 2013 5:46 pm

Re: starting Lonsurf next week (very nervous)

Postby stu » Wed Apr 15, 2020 6:17 pm

Hope he gets the response he needs . I don’t have any information on it but HOPE someone else with the right experience pops on .
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 .

jep
Posts: 254
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: starting Lonsurf next week (very nervous)

Postby jep » Wed Apr 15, 2020 7:48 pm

Thank you Stu! Yes, we're hoping for the best . . . thanks for your support <3
Wife of DH (47) Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -

Kathymyers
Posts: 2
Joined: Mon Jan 15, 2018 11:01 pm

Re: starting Lonsurf next week (very nervous)

Postby Kathymyers » Sun Jun 07, 2020 9:02 pm

Hi just checking how your husband is getting on with lonsurf? Mine started his second round last week. So far so good. First two weeks he slept a lot but got steroids for this time around and is up and about a lot more this month. Just comparing notes!

jep
Posts: 254
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: starting Lonsurf next week (very nervous)

Postby jep » Tue Jun 09, 2020 1:00 pm

Major change in plans . . . once my husband's docs realized that his disease was progressing more quickly, they switched gears to Folfiri + Avastin . . . he was never able to get Avastin due to surgeries, etc., and his oncologist really wants him to try it . . . so, Lonsurf is on the shelf for now . . .
Hope all is well with you!
jep
Wife of DH (47) Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -

Kathymyers
Posts: 2
Joined: Mon Jan 15, 2018 11:01 pm

Re: starting Lonsurf next week (very nervous)

Postby Kathymyers » Tue Jun 16, 2020 2:51 pm

That’s good, they’re giving him the best possible shot. My husband has pretty much used up all his other options of chemo. Docs suggested enjoying what times left but he wants to keep going on treatment. Doc says 4-6 months but he’s coping well on the lonsurf particularly since they gave him steroids. I’ll keep updating here every so often just for anyone else. I can’t find much info on lonsurf. Two months in, so far so good!

jep
Posts: 254
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: starting Lonsurf next week (very nervous)

Postby jep » Wed Jun 17, 2020 8:59 pm

I’m glad he’s doing ok on the Lonsurf....please keep us updated and take care of yourself as well...
jep
Wife of DH (47) Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -

johnj
Posts: 4
Joined: Fri Jul 17, 2020 3:39 pm

Re: starting Lonsurf next week (very nervous)

Postby johnj » Fri Jul 17, 2020 4:30 pm

Hi, I am new to the forum and many messages posted in the forum are very helpful. I am starting Lonsurf + Avastin treatment next week after 22 cycles of FOLFIRI + Avastin with slight progression. I am also a little bit nervous for the new treatment. I would like to have your input on your treatment experience in terms of side effect management and efficacy. Thanks, -John
47yr. IIIB (T3N2aM0) 3/2018
MSS/pMMR
KRAS G12D
CEA:5.0
radiation/chemo 4/2018-5/2018
Surgery 7/2018
FOLFOX6 8/2018-11/2018
lung recurrence + VATS 4/2019
MSS/TMB low
pelvic bone + lung mets 7/2019
pelvic radiation 8/2019
FOLFIRI + Avastin - slight progression 8/2019-7/2020
CEA: 6.1 7/2020
Lonsurf + Avastin 7/20/2020

jep
Posts: 254
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: starting Lonsurf next week (very nervous)

Postby jep » Sat Jul 18, 2020 7:26 am

Hi johnj . . . my husband ended up not taking Lonsurf, but did start Stivarga this morning :shock:
We are pretty nervous about how he will respond . . . I remember searching for info on Lonsurf and not finding much. It sounds good that you will combine the Lonsurf with the Avastin . . . we have always wanted my husband to have Avastin consistently (as it works for so many), but due to his several surgeries and complications, he's only had 2 doses in the past 3 years and those 2 doses were years apart :(
Wishing you all the best with this new treatment, and keep us posted as to how things are going . . .
Take care,
jep
Wife of DH (47) Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -

Claudine
Posts: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: starting Lonsurf next week (very nervous)

Postby Claudine » Sat Jul 18, 2020 9:33 am

Johnj, since you are KRAS mutated, has your oncologist mentioned Onvansertib? It’s new but fast tracked in the trials so I think oncologists can request it. It’s given in complement to Folfiri and Avastin and is specifically for KRAS MSS patients, and quite promising.
Another weapon in the arsenal, should lonsurf have too many side effects or not be as efficient as hoped.
Good luck to you and jep’s husband with the new treatments XXXXXXXX
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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

johnj
Posts: 4
Joined: Fri Jul 17, 2020 3:39 pm

Re: starting Lonsurf next week (very nervous)

Postby johnj » Sat Jul 18, 2020 11:02 am

Hi, jep ... thanks much for your notes. As your husband is starting to use STIVARGA® (regorafenib), did your oncologist mention the immunotherapy drug Opdivo (Nivolumab)? The combination of the Rego +Nivo sounds like a promising treatment (for MSS) though Nivo is an off-label drug which would need to get approval from a pharmaceutical company. Wish all is the best with your husband's new treatment.
-John
47yr. IIIB (T3N2aM0) 3/2018
MSS/pMMR
KRAS G12D
CEA:5.0
radiation/chemo 4/2018-5/2018
Surgery 7/2018
FOLFOX6 8/2018-11/2018
lung recurrence + VATS 4/2019
MSS/TMB low
pelvic bone + lung mets 7/2019
pelvic radiation 8/2019
FOLFIRI + Avastin - slight progression 8/2019-7/2020
CEA: 6.1 7/2020
Lonsurf + Avastin 7/20/2020

johnj
Posts: 4
Joined: Fri Jul 17, 2020 3:39 pm

Re: starting Lonsurf next week (very nervous)

Postby johnj » Sat Jul 18, 2020 11:11 am

Hi, Claudine, thanks much for your information about Onvansertib. I googled and it does sound very promising in the Phase 1b/2 clinical trial in KRAS-Mutated mCRC.

https://pipelinereview.com/index.php/20 ... ponse.html

I will ask my oncologist in next visit to see if this new drug is available or not.

Thanks again,

-John
47yr. IIIB (T3N2aM0) 3/2018
MSS/pMMR
KRAS G12D
CEA:5.0
radiation/chemo 4/2018-5/2018
Surgery 7/2018
FOLFOX6 8/2018-11/2018
lung recurrence + VATS 4/2019
MSS/TMB low
pelvic bone + lung mets 7/2019
pelvic radiation 8/2019
FOLFIRI + Avastin - slight progression 8/2019-7/2020
CEA: 6.1 7/2020
Lonsurf + Avastin 7/20/2020

Claudine
Posts: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: starting Lonsurf next week (very nervous)

Postby Claudine » Sun Jul 19, 2020 9:20 am

Please let us know what he’s got to say about it! My husband is off chemo for now but as much as I wish it were forever, I doubt it’s going to be the case... And since he’s KRAS mutated and has had good results with Folfiri and Avastin, I’m keeping a close eye on the onvansertib trial.
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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Cookie19
Posts: 1
Joined: Tue Jul 28, 2020 10:59 am
Facebook Username: Cookie Conetta

Re: starting Lonsurf next week (very nervous)

Postby Cookie19 » Tue Jul 28, 2020 11:11 am

Hi, my Mom is on her 3rd cycle of Lonsurf and Avastin, she has ascites when she started this new treatment. She is very sleepy, loss of appetite, - after her next avastin treatment, we will be going for cat scan. Anyone out there with The Ascites?


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