1. < Colorectal Cancer

Lonsurf (trifluridine/tipiracil) effectiveness

Posted by chuckmii @chuckmii, Jun 17, 2024

I have searched and read through the available threads on here but there doesn't seem to be a lot of information and consensus on Lonsurf. My research shows that it is the last resort in treating stage 4 MCRC. I have also read the effectiveness might give us 2 months of stability but not really any reduction in tumors. It really is just to give you some more time before the inevitable. Anyone have any experience with it or know anyone that has seen any positive results. Obviously concerned about side effects as it seems they save the drugs with the worst ones for last which makes sense. Talk to doctor on Wednesday but definitely scared based on where we are. I am waiting for the dreaded "T" word to drop.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

ollevins55 | @ollevins55 | Jun 17, 2024

I'm taking Lonsurf chemo tablets also. Do you know for a fact that this is the last medicine they have for stage 4 colon cancer. The side effect is very bad.

REPLY
chuckmii | @chuckmii | Jun 17, 2024

Based on everything I have researched and read it is. Our oncologist implied it at our last appointment, we could go back to FOLFOX, which had bad side effects for her or do this and everything in her notes essentially says when all other options are no longer effective, we will try Lonsurf. What side effects are you having and when did they start?

REPLY
1 reply
ollevins55 | @ollevins55 | Jun 21, 2024
In reply to @chuckmii "Based on everything I have researched and read it is. Our oncologist implied it at our..." + (show)
@chuckmii

Based on everything I have researched and read it is. Our oncologist implied it at our last appointment, we could go back to FOLFOX, which had bad side effects for her or do this and everything in her notes essentially says when all other options are no longer effective, we will try Lonsurf. What side effects are you having and when did they start?

Jump to this post

I've been on them for at least 2 months. I have bad stomach pain, and nausea. It just have me feeling bad.

REPLY
tiredofbeingtired | @tiredofbeingtired | Apr 30 6:49pm

My father has stage 4 metastatic adenocarcinoma of the gastroesophageal junction and this was the 3rd chemo he tried and it is killing him more than anything else. He’s been on it a month and his kidneys have completely shut down, he’s been so nauseous and he had a stroke. The cancer is still spreading and they let him put this poison in his body. I think his oncologist is a complete dumbass. He didn’t even care about my dad. Just getting his money. If you are thinking about it, my recommendation is to skip it. At this point, live out the rest of your life the best you can. The statistics he was given said, “only 50% of people make it to 3 months on it. WTF. Cancer sucks.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 30 9:04pm
In reply to @tiredofbeingtired "My father has stage 4 metastatic adenocarcinoma of the gastroesophageal junction and this was the 3rd..." + (show)
@tiredofbeingtired

My father has stage 4 metastatic adenocarcinoma of the gastroesophageal junction and this was the 3rd chemo he tried and it is killing him more than anything else. He’s been on it a month and his kidneys have completely shut down, he’s been so nauseous and he had a stroke. The cancer is still spreading and they let him put this poison in his body. I think his oncologist is a complete dumbass. He didn’t even care about my dad. Just getting his money. If you are thinking about it, my recommendation is to skip it. At this point, live out the rest of your life the best you can. The statistics he was given said, “only 50% of people make it to 3 months on it. WTF. Cancer sucks.

Jump to this post

@tiredofbeingtired, it sounds like the treatment is wreaking havoc on your dad's body. It must be so hard to watch him suffer. Whether to continue treatment or to stop should be the patient's choice. Quality of life should be consider as much (perhaps more?) as quantity. In my dad's case, he was told he was in charge and could stop chemo whenever he wanted either temporarily or permanently. When he stopped, he was told that it was likely he would have about 6 months. He was with us for an additional 13 months and kept comfortable by the palliative care team.

Has your dad been able to discuss the pros and cons of continuing treatment vs palliative (comfort) care? Has he been given the option of taking a treatment break? Do you accompany your dad to his appointments?

REPLY
1 reply
tiredofbeingtired | @tiredofbeingtired | Apr 30 10:31pm
In reply to @colleenyoung "@tiredofbeingtired, it sounds like the treatment is wreaking havoc on your dad's body. It must be..." + (show)
@colleenyoung

@tiredofbeingtired, it sounds like the treatment is wreaking havoc on your dad's body. It must be so hard to watch him suffer. Whether to continue treatment or to stop should be the patient's choice. Quality of life should be consider as much (perhaps more?) as quantity. In my dad's case, he was told he was in charge and could stop chemo whenever he wanted either temporarily or permanently. When he stopped, he was told that it was likely he would have about 6 months. He was with us for an additional 13 months and kept comfortable by the palliative care team.

Has your dad been able to discuss the pros and cons of continuing treatment vs palliative (comfort) care? Has he been given the option of taking a treatment break? Do you accompany your dad to his appointments?

Jump to this post

He was actually placed on hospice today so he will no longer be on the chemo. He is bleeding internally and the doctor said his kidneys are not working so his body is not cycling out toxins. The weird thing about this cancer is it causes mucus build up around your lung cavities and stomach so he has a never ending cough. I did attend a few doctor’s appointments with him but I found out later my dad was not being honest about how bad his condition had become. It’s extremely hard to see someone you love suffer and you can’t help them, just try and make them comfortable. He can no longer stand or walk so he is now bed ridden.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 1 7:16am
In reply to @tiredofbeingtired "He was actually placed on hospice today so he will no longer be on the chemo...." + (show)
@tiredofbeingtired

He was actually placed on hospice today so he will no longer be on the chemo. He is bleeding internally and the doctor said his kidneys are not working so his body is not cycling out toxins. The weird thing about this cancer is it causes mucus build up around your lung cavities and stomach so he has a never ending cough. I did attend a few doctor’s appointments with him but I found out later my dad was not being honest about how bad his condition had become. It’s extremely hard to see someone you love suffer and you can’t help them, just try and make them comfortable. He can no longer stand or walk so he is now bed ridden.

Jump to this post

@tiredofbeingtired, while I know being put on hospice means the end is near, I am relieved to hear that he will be in the care of kind, compassionate professionals who can keep him as comfortable as possible. It's hard to lose a parent. I send you peace and courage as you walk this part of the path.

REPLY
nrdl2879 | @nrdl2879 | May 1 6:41pm

My husband was on Lonsurf for 7 months before it stopped working. Side effects weren’t that bad. Now he is on Fruzaqla. This makes him sleep. Need a Pet scan in a month to see if it is working. Stage 4 colon spread to both lungs

REPLY
Please sign in or register to post a reply.