The Colon Club

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

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 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

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!

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.

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!

It’s been insanely stressful these past few weeks. Here’s a brief update: My husband’s CT scan after four rounds of Lonsurf was very bad. Lonsurf was discontinued, and we were faced with three choices. 1. Regorafenib (bad side effects, little benefit) 2. Rechallenge FOLFOX (terrible neuropathy hasn’t gone away since first time) 3. Merck trial of immunotherapy (not passed by FDA). At first, we were all excited about the immunotherapy, but we decided to go to UVA in Charlottesville to get the opinion of our “second opinion” doctor that is also familiar with husband’s case. He said that the Merck trial was a very bad idea, and wouldn’t help at all in my husband’s situation, which was a letdown, but so glad we went to him for the information. He said that there were better options out there, and he is contacting Johns Hopkins to see if he can get husband in one of their trials. It will be super difficult logistically (we live 4.5 hours away), but we will figure it out somehow. The UVA doctor said that some people live “years” on the treatments offered at Johns Hopkins. Sounds good to me!

I hope your trip to Johns Hopkins goes well! Remember to check if they have some kind of hospitality house, that way you can drive up the night before and have a cheap place to stay, instead of trying to do that all in one day. We did that a lot when going to UVA.

John gets a PET scan next month to see how Lonsurf is going, though his Signatera showed a decrease in floating tumor cells so hopefully that's a good sign. If it looks good his Oncologist also floated sending him to a different hospital for surgery as UVA isn't able to handle it.

John is in the middle of his third round and just started adding Avastin back in. He's tolerating it well, just some tiredness and fatigue, and his CEA has dropped twice so hopefully that is a trend and not a fluke. Not sure when he will get another scan, but she just sent off a signatera test to see how his tumor markers are doing.[/quote]


You mentioned his CEA dropped but also his CEA went up first few cycles? Mum just finished one cycle and her CEA shot up really high. The Oncologist did not seem to concerned but we were all shocked it would go up that high. Over she's tolerated the first cycle well. She's gained a few pounds, eating very well and very little fatigue. Sometimes we wonder if the medicine is actually working. LOL.

626Patient wrote:You mentioned his CEA dropped but also his CEA went up first few cycles? Mum just finished one cycle and her CEA shot up really high. The Oncologist did not seem to concerned but we were all shocked it would go up that high. Over she's tolerated the first cycle well. She's gained a few pounds, eating very well and very little fatigue. Sometimes we wonder if the medicine is actually working. LOL.

His CEA was already high, and it did go up a little for a round or two before it came down. John's oncologist isn't impressed by the dip in CEA as "it isn't very accurate", but his Signatera results DID decrease and she was happy about that. John didn't show any real symptoms until recently; he had horrible diarrhea after the last cycle that is just starting to clear up right before his next cycle. At first I felt the same, but I just reminded myself that things will probably slowly get worse as it builds up in his system.

crikklekay wrote:

626Patient wrote:You mentioned his CEA dropped but also his CEA went up first few cycles? Mum just finished one cycle and her CEA shot up really high. The Oncologist did not seem to concerned but we were all shocked it would go up that high. Over she's tolerated the first cycle well. She's gained a few pounds, eating very well and very little fatigue. Sometimes we wonder if the medicine is actually working. LOL.

His CEA was already high, and it did go up a little for a round or two before it came down. John's oncologist isn't impressed by the dip in CEA as "it isn't very accurate", but his Signatera results DID decrease and she was happy about that. John didn't show any real symptoms until recently; he had horrible diarrhea after the last cycle that is just starting to clear up right before his next cycle. At first I felt the same, but I just reminded myself that things will probably slowly get worse as it builds up in his system.

Interesting. Prior on Lonsurf did he take a chemo break ? We had about a 2 month break due to an ostomy bag being placed. That trigged the CEA to go up a lot since she did not have chemo and even more after 1 cycle of Lonsurf + Avastin. We have to delay cycle 2 by a week to make sure her white cell and absolute neutrophil go back to within normal range. They said this is very common.

After he became stage 4 and finished his chemo cycle (plus some extras), he was on maintenance Avastin until he suddenly became severely anemic. Assuming he had internal bleeding, he went off Avastin and was off for months as his health deteriorated and we finally figured out he had a new tumor causing issues in his small intestine. Then there was a failed resection surgery, an emergency surgery due to complications, then some complications during wound healing before he FINALLY got onto Lonsurf. So his CEA was rising the whole time we were trying to find the source of his anemia.

crikklekay wrote:After he became stage 4 and finished his chemo cycle (plus some extras), he was on maintenance Avastin until he suddenly became severely anemic. Assuming he had internal bleeding, he went off Avastin and was off for months as his health deteriorated and we finally figured out he had a new tumor causing issues in his small intestine. Then there was a failed resection surgery, an emergency surgery due to complications, then some complications during wound healing before he FINALLY got onto Lonsurf. So his CEA was rising the whole time we were trying to find the source of his anemia.

Sounds like a lot! Hopefully we see a drop in her CEA next month after cycle 2 of Lonsurf! Is he getting a scan soon?

626Patient wrote:Sounds like a lot! Hopefully we see a drop in her CEA next month after cycle 2 of Lonsurf! Is he getting a scan soon?

He just got a PET scan on Friday, fingers crossed the results are good. At least we only have to wait until Tuesday to get the results.

sending you good positive vibes!