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