Lonsurf Experiences

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mozart13
Posts: 178
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Lonsurf Experiences

Postby mozart13 » Wed Apr 30, 2025 6:16 pm

Kafka wrote:Hi. My husband has finished four cycles of Lonsurf chemo. Tomorrow morning (yes, on a Sunday morning!) he is getting his first CAT scan since starting Lonsurf in January. I’m nervous. His CEA level is higher than it was back in December, but it may be due to a different infection that he currently has. At least, that’s what I keep telling myself. I hope others are doing well on this chemo treatment— I would like to hear from others about your experience is going.

Lonsurf can be a tough one, but I’ve seen people post about stable disease or even shrinkage after a few cycles, so fingers crossed for good news tomorrow. Wishing you both strength and calm until then
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Kafka
Posts: 4
Joined: Fri Jan 31, 2025 11:56 pm
Facebook Username: HollyWiseman
Location: Virginia Beach

Re: Lonsurf Experiences

Postby Kafka » Wed Apr 30, 2025 10:04 pm

My husband’s CAT scan results look very bad. We don’t see the doctor for another week, but the results were posted in MyChart about two hours after the test. We fed all the info into ChatGPT, and outlook is bleak. But we will just have to see what the doctor says about it. I have no idea what happens when Lonsurf fails. This sucks. Sorry for being so negative

utahgal7
Posts: 295
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lonsurf Experiences

Postby utahgal7 » Thu May 01, 2025 1:10 am

Kafka wrote:My husband’s CAT scan results look very bad. We don’t see the doctor for another week, but the results were posted in MyChart about two hours after the test. We fed all the info into ChatGPT, and outlook is bleak. But we will just have to see what the doctor says about it. I have no idea what happens when Lonsurf fails. This sucks. Sorry for being so negative


Kafka,

I know that seeing a bad CT result is hard. There may be additional treatment options for your husband. Fruzaqla (fruquintinib) and Stivarga (regorafenib) are additional medication options. Sometimes doctors will choose to re-try FOLFOX or FOLFIRI, depending how long ago the patient was treated with it. Also, I would look into clinical trials. I don't know if your husband is being treated at a NCI designated cancer center, but I would definitely consider getting care at one of these hospitals https://www.cancer.gov/research/infrast ... nters/find. Lastly, it would be helpful for you to create a signature for your husband on here so CT members could see what treatments your husband has received. It can increase the advice received from other forum members.

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

crikklekay
Posts: 157
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Lonsurf Experiences

Postby crikklekay » Thu May 01, 2025 8:35 am

Kafka wrote:My husband’s CAT scan results look very bad. We don’t see the doctor for another week, but the results were posted in MyChart about two hours after the test. We fed all the info into ChatGPT, and outlook is bleak. But we will just have to see what the doctor says about it. I have no idea what happens when Lonsurf fails. This sucks. Sorry for being so negative


Digital hugs, I'm so sorry his CAT scan wasn't what you hoped! Part of me hates being able to read the results before the doctor's appointment as it just increases my anxiety if they aren't obviously positive, but I write down all my questions for the appointment so I'm prepared. My only note is don't necessarily trust ChatGPT as it has shown to throw out errors. John's last scan sounded scary but my reading and Googling didn't get it quite right as the doctor said it showed nothing of serious note. I'm hoping you doctor can shed some better light onto the situation.

And like utahgal7 said, there may be other options. John's doctor said if he didn't respond to Lonsurf there were other things we could try, including redoing Folfox since he hasn't had it in 6 years. She also mentioned clinical trials, though the one targeting his kind of cancer is very early in its research so she wants to save it as a last resort. So don't lose hope!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2021 PET & MRI show 1 spot on liver
08/21 Liver surgery to remove spot, now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, more chemo
06/22 Scans show NED, on maintenance Avastin
09/24 Mesenteric mass found
02/25 Failed surgery and starting Lonsurf

626Patient
Posts: 20
Joined: Sun Mar 17, 2024 1:28 pm

Re: Lonsurf Experiences

Postby 626Patient » Fri May 09, 2025 9:21 pm

So we met with the onc today and he wanted to switch mum from Folfox + FUDR to Lonsurf + Avastin. About 2 weeks ago developed an issue with Folfox (Drop in Blood Pressure) which makes the ONC more hesitant to retry. Can anyone give some insight on Pros/ Cons with this specific treatment ? I was told adding Avastin is better.

crikklekay
Posts: 157
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Lonsurf Experiences

Postby crikklekay » Sat May 10, 2025 6:24 pm

626Patient wrote:So we met with the onc today and he wanted to switch mum from Folfox + FUDR to Lonsurf + Avastin. About 2 weeks ago developed an issue with Folfox (Drop in Blood Pressure) which makes the ONC more hesitant to retry. Can anyone give some insight on Pros/ Cons with this specific treatment ? I was told adding Avastin is better.


John's oncologist said the same, that adding Avastin helps Lonsurf do a better job. Even the promotional material mentioned that Lonsurf is more effective with Avastin. He just started adding Avastin so he hasn't had his levels checked to see if it is helping, but fingers crossed! He was on Avastin for maintenance and it helped him be in remission for two years before this new spot popped up.

As for pros and cons, all I can offer is what John has experienced so far. One pro is that there is no ball of chemo that must be attached and carried around for 2-3 days. The timing is a little annoying, but that's because John has other meds. He has to take his GERD meds an 30 mins before he eats, then he takes Zofran after breakfast and must wait an hour to take the chemo pills. It's a lot of timing we have to watch in the morning to make sure it's all done before he goes to work, but in the evening it's just dinner, Zofran, an hour wait then chemo. You do that during the weekday for two weeks, then a two week break.

Another pro so far is that he hasn't had too many side effects, but it sounds like some people are hit harder than others so that might be 50/50. He just finished his third round, and just has some fatigue and loose stools.

As for the Avastin, he will need to get that via IV and it takes ~2 hours. That's every other week. It just makes John feel a little tired after. I wish I could provide more info!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2021 PET & MRI show 1 spot on liver
08/21 Liver surgery to remove spot, now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, more chemo
06/22 Scans show NED, on maintenance Avastin
09/24 Mesenteric mass found
02/25 Failed surgery and starting Lonsurf


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