starting Lonsurf next week (very nervous)

[jep]

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

[stu]

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

[jep]

Thank you Stu! Yes, we're hoping for the best . . . thanks for your support <3

[Kathymyers]

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]

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

[Kathymyers]

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]

I’m glad he’s doing ok on the Lonsurf....please keep us updated and take care of yourself as well...
jep

[johnj]

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

[jep]

Hi johnj . . . my husband ended up not taking Lonsurf, but did start Stivarga this morning
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

[claudine]

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

[johnj]

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

[johnj]

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

[claudine]

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.

[Cookie19]

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?