Lonsurf Experiences

[crikklekay]

It has been a very hard few months. Long story short, second reoccurrence of his cancer that is currently inoperable because they would need to remove most/all of his colon to get it and they are worried about further spread than they can currently see. The plan is to do treatment, hope it shrinks the tumor we can see and that nothing else pops up. If both end up being true then they will remove the current tumor.

I accidentally saw the treatment plan last night, as it was already posted to the portal even though we don’t meet up with the oncologist until Friday. I had a sickening jolt when I saw his treatment has moved from “curative intent” to “managing disease”, and then when I read up on the chemo they are planning to use (Lonsurf) it seems to imply life expectancy is less than a year so I freaked out more.

Has anyone here been on Lonsurf? What can John expect as far as side effects go, were they better or worse than Folfolx? How long were you on it? Has anyone gone into remission on this? The website makes it sound like its only purpose is to extend your life a couple of months. John has maxed out his IV meds from the last two treatments and his genetic testing doesn’t show anything to target.

[beach sunrise]

Hi Crikklekay, don't give up hope! Maybe someone will respond soon here. You can also go to cancer survivors network site and read and maybe DM a guy that goes by NewHere. He has been battling CRC for 11 years or so. He was also on Lonsurf and from what I remember reading in his posts he was or is still on it for over a year.

[roarR40s]

Hi Crikklekay,

Have you tried seeking a second opinion of surgeons specialising in Peritonectomy/HIPEC/Cytoreductive surgery. My late husband had a a total colectomy - his entire colon was removed, along with a whole heap of stuff - under this specialised surgery. General surgeons often don't have the expertise to deal with peritoneal disease, or being able to disciper the disease burden, and so they often put it into the too-hard basket. This type of surgery is extensive, but I think it is worth seeking a high volume centre specialising in Peritonectomy/HIPEC, to understand your husband's situation & to determine whether he is truly inoperable. Also, if your husband's disease is contained to the abdomen and diaphragm, they may take on your case, striving for a potentially curative option.

Unfortunately chemo isn't generally effective for peritoneal disease. This was also true in my late husband's case; he was completely non-responsive but his cancer was also mucinous - a subtype that generally makes chemo much, much less effective . So it depends on your husband's specific cancer type - has past chemo generally been responsive so far? I have also encountered cases, where chemo (Folfox, Folfiri) did work to reduce disease burden in the peritoneum, prior to the peritonemy/surgery.

In terms of Lonsurf, I would say the treatment efficacy and experience is very individual. My late husband was hit really hard with Lonsurf, with overwhelming fatigue. However his oncologist had other cases where Lonsurf was effective. If you husband is undergoing Lonsurf, I would recommend he pairs it up with Avastin upfront because a) he has had it on maintenance chemo and b) the research for Lonsurf + Avastin seems to be much more promising.

I wish you and husband the very best of luck, and really hope some things go your way. Sending you much energy as one caregiver to another; and as Beach says, don't give up hope!

CL

[crikklekay]

Hi Crikklekay,

Have you tried seeking a second opinion of surgeons specialising in Peritonectomy/HIPEC/Cytoreductive surgery. My late husband had a a total colectomy - his entire colon was removed, along with a whole heap of stuff - under this specialised surgery. General surgeons often don't have the expertise to deal with peritoneal disease, or being able to disciper the disease burden, and so they often put it into the too-hard basket. This type of surgery is extensive, but I think it is worth seeking a high volume centre specialising in Peritonectomy/HIPEC, to understand your husband's situation & to determine whether he is truly inoperable. Also, if your husband's disease is contained to the abdomen and diaphragm, they may take on your case, striving for a potentially curative option.

Unfortunately chemo isn't generally effective for peritoneal disease. This was also true in my late husband's case; he was completely non-responsive but his cancer was also mucinous - a subtype that generally makes chemo much, much less effective . So it depends on your husband's specific cancer type - has past chemo generally been responsive so far? I have also encountered cases, where chemo (Folfox, Folfiri) did work to reduce disease burden in the peritoneum, prior to the peritonemy/surgery.

In terms of Lonsurf, I would say the treatment efficacy and experience is very individual. My late husband was hit really hard with Lonsurf, with overwhelming fatigue. However his oncologist had other cases where Lonsurf was effective. If you husband is undergoing Lonsurf, I would recommend he pairs it up with Avastin upfront because a) he has had it on maintenance chemo and b) the research for Lonsurf + Avastin seems to be much more promising.

I wish you and husband the very best of luck, and really hope some things go your way. Sending you much energy as one caregiver to another; and as Beach says, don't give up hope!

CL

No, not yet. We are already working with a surgical oncologist, and he isn't saying we can't take it out eventually but he wants to make sure there isn't more significant spread. His thinking was John will need to get into treatment ASAP and need to be in the best health to do so, and proceeding with such a large operation might be a hindrance. But I haven't ruled out maybe looking for another opinion if that changes down the line. Thank you for giving me the specific terminology!

We saw the oncologist on Friday and the plan is to add Avastin on to the Lonsurf once John's incision has fully healed. Hopefully it works, and doesn't make John feel too sick. He starts it in about a week so we'll see!

[catmc]

I’m sorry it has been a hard few months. I can relate as I’m currently undergoing chemo treatment after another recurrence. In the fall of 2022 shortly after being diagnosed with stage 3 rectal cancer, I started taking Lonsurf as part of a trial. I was told that it was usually given to stage IV colon cancer patients, and I had an understanding that it was going to be intense. I took Lonsurf in conjunction with radiation (28 days). I’m sure it was the combined treatments, but the side effects hit me hard. Super nauseous, diarrhea, severe fatigue, and I lost most of my hair. I went on FOLFOX six weeks after stopping Lonsurf. I experienced a slew of side effects with FOLFOX, but the nausea seemed worse with Lonsurf. After the completion of both chemo treatments and radiation, a complete response was declared. I hope that Lonsurf is very effective for your husband!

[crikklekay]

I’m sorry it has been a hard few months. I can relate as I’m currently undergoing chemo treatment after another recurrence. In the fall of 2022 shortly after being diagnosed with stage 3 rectal cancer, I started taking Lonsurf as part of a trial. I was told that it was usually given to stage IV colon cancer patients, and I had an understanding that it was going to be intense. I took Lonsurf in conjunction with radiation (28 days). I’m sure it was the combined treatments, but the side effects hit me hard. Super nauseous, diarrhea, severe fatigue, and I lost most of my hair. I went on FOLFOX six weeks after stopping Lonsurf. I experienced a slew of side effects with FOLFOX, but the nausea seemed worse with Lonsurf. After the completion of both chemo treatments and radiation, a complete response was declared. I hope that Lonsurf is very effective for your husband!

Did they have you take Zofran before you took the Lonsurf? His instructions are to take it an hour before the Lonsurf, so I was hoping that would help with the nausea. They did talk briefly about radiation, but I think the location makes that difficult as it would also damage the surrounding small intestine.

John had an awful response to Folfox, to the point where solid food would make him vomit. He lived on smoothies (that tasted like glue paste he told me) for 6 months. Hopefully the nausea doesn't get that bad on Lonsurf, fingers crossed. He didn't have that issue with Folfiri for some reason.

I hope your new treatment goes well, reoccurrence is such a gut punch. Sending good vibes and well wishes your way! <3

[Kafka]

Hi. I am new here, and have never posted. But I have been looking at other members’ posts to get information from others going through similar experiences. I “friended” Crikkelkay because I was hoping to send a direct message, but the site won’t allow that (I need to make a couple of posts first).
My husband started Lonsurf at the beginning of January, and has just finished his second round. He was initially diagnosed with CRC IIIb in March 2021. After his surgery and chemotherapy (Folfox), he was clear until November 2023. His second chemo (Folfiri+), controlled it for almost a year. Now he has started Lonsurf, and it’s pretty scary.
By the way, we are in Virginia Beach.
Since I am unable to contact anyone, I will definitely be checking for more updates that may guide me on how others are experiencing Lonsurf, and what I might expect. Thanks so much!

[crikklekay]

Hi. I am new here, and have never posted. But I have been looking at other members’ posts to get information from others going through similar experiences. I “friended” Crikkelkay because I was hoping to send a direct message, but the site won’t allow that (I need to make a couple of posts first).
My husband started Lonsurf at the beginning of January, and has just finished his second round. He was initially diagnosed with CRC IIIb in March 2021. After his surgery and chemotherapy (Folfox), he was clear until November 2023. His second chemo (Folfiri+), controlled it for almost a year. Now he has started Lonsurf, and it’s pretty scary.
By the way, we are in Virginia Beach.
Since I am unable to contact anyone, I will definitely be checking for more updates that may guide me on how others are experiencing Lonsurf, and what I might expect. Thanks so much!

Your husband has had a similar regimen I see! John seems to be able to only manage remission for two years, at least that has been the pattern. He finished his first week of Lonsurf, just some fatigue so far. He starts the second week tomorrow, hopefully the side effects stay mild; I know it will start to build up in his system eventually. And you aren’t too far from us! We are in the Richmond area. I hope your husband’s treatment goes well and kicks the cancer to the curb for good!

[Kafka]

How is your husband doing with his Lonsurf schedule? My husband is starting his third round today. His WBC count was very low when he went in for blood test on Friday, so the gave him injections for the past three days and now it’s at an acceptable level. Here are the biggest problems that he has been experiencing so far: 1. fatigue is insanely high. 2. a lot of abdominal pain 3. nausea, vomiting, and lack of appetite 4. I don’t know how to describe this, but a strange type of “fuzzy” headedness.
Iwonder how long before it starts affecting his job.
He works from home, so that’s good, and they pretty much give him all the time off that he needs, but at what point does it become too difficult to keep up? He worked through his first two chemo treatments, but how long before it becomes impossible? Do other people continue working while on Lonsurf?

[crikklekay]

He just finished his first round, which he weathered pretty well with only some fatigue. I know that will build up as the treatments go along, but I'm glad it's not too bad yet. His blood work looks OK considering (still has anemia, but it doesn't look worse which is good), but his CEA is still going up which I'm unhappy with. (And now they are testing him for pancreatic cancer markers?? Is that a Lonsurf thing?) But I guess it would be too much to hope for instant results haha. He's supposed to restart Avastin next week so hopefully that will help.

I'm sorry to hear your hubby is feeling so poorly. John also worked through his prior two chemo treatments, but he works as an electrician so I'm always worried about him going to work feeling poorly. But our health insurance comes from his job so he doesn't have much choice. I'm the one who works from home, and my boss gives me as much time off as needed to care for John which I'm truly grateful for. I just wish he also worked from home to make this a little easier for him.

I've done a lot of looking around, and I can't get a consensus on Lonsurf. Some people said it hit them like a mack truck, and others say they had barely any symptoms at all. It's weird how all over the place it is. I hope your husband levels out, or even better starts to get some relief. <3

[626Patient]

May I ask why Avastin was not part of the treatment plan ? My moms situation at the moment is waiting for a Guardant test to check for mutations and then proceed with possibly rechallenging Folfox + Vectibix or Lonsurf + Avastin. CEA has also been a good indicator for her as well

[crikklekay]

May I ask why Avastin was not part of the treatment plan ? My moms situation at the moment is waiting for a Guardant test to check for mutations and then proceed with possibly rechallenging Folfox + Vectibix or Lonsurf + Avastin. CEA has also been a good indicator for her as well

John had two surgeries, one in December (the failed tumor removal) then an emergency surgery in January for a blocked small intestine. Unfortunately he developed an infected pocket in his incision and it just stopped draining last week. You can’t be on Avastin when you have wound healing so she’s going to add it on in a few weeks to make sure everything is 100% healed. So it’s part of the plan, we just can’t use it yet safely.

[Kafka]

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.

[thephotoguy]

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.

I hope you get good results!

[crikklekay]

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.

Good luck!! Scanxiety is real, I hope you get great results!

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.