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Bowel cancer treatment and side effects

1wiggle1

LONSURF

Hey all! It’s been a while since I’ve posted anything, but as usual, since there is so much experience here among you all, once again, I turn to you for help! 😄

For some reason, I’m unable to update my profile, and a lot has happened since my last update.
To cut it short, I have multiple tumours on both lungs ,significant spread within the peritoneal cavity. A large tumour at the bottom of my bladder, which nearly finished me off just after Christmas. I went into renal failure due to the fact that that the fluid was unable to get past the tumour and I blew up like a balloon with toxic fluid. My electrolytes were totally out of whack and I had my own emergency doctor (complete with full resuscitation kit on his back) chaperone me wherever I needed to go within the hospital, as they were worried that I was going to arrest 🤭

Anyhoo, four weeks in hospital and multiple ops, procedures and drugs later and luckily (I am so, so, so grateful as this could’ve easily gone the other way), they’ve patched me back up and so far, so good.

So, I’ve not had any active treatment since 2015. Because my disease has never responded well to Chemo (I’ve had FolFox, FolFiri plus Cetuximab, radiotherapy etc), and the tumours aren’t growing super fast, my Onco has preferred a watch and wait approach.

Anyway, I had an appointment with him on Tuesday and he has said that although conventional chemotherapy is out of the question as the regular chemos attack the gastrointestinal tract, and my guts can’t take any more abuse, he thinks it would be appropriate to try Lonsurf.

Having no knowledge at all about this treatment, I was wondering if anyone out there was using it and (of course) some positives would be a bonus. The side effects seem minimal compared with the other bunch of nasties, or is that just wishful thinking?

Anyway, thanks in advance for any advice that you may be able to give,

With all the best wishes for your journeys,

Wiggle :x::x::x:

Bear G

Hi @1wiggle1
Wow you’ve been through a lot!
It really sounds like you’ve got a fab team looking after you And you have super hero levels of positivity to come through it as strong as you’ve done!
Lonsurf is starting to get used more but it’s still a fairly new drug. I’ve heard some good responses from people who haven’t responded to their treatments so fingers crossed this happens for you!
Big hugs
Bear
:x::x:

Bear G

PS. You could PM ‘Richard Staff’ about not being able to update your profile.

determinedjoan

Sooo v soz that you’ve been so poorly; v well done 👍 u for getting through everything & continuing to fight on now with Lonsurf. Hv no experience of it myself i’m afraid but really hope it works magic for u. Wishing u all the v best & sending love 💗, hugs 🤗 & healing vibes :x:

Lizalou

Hi @1wiggle1

I have just read your profile and am desperately trying to think of your original name....please tell us. I suspect I have been worrying about you!

I really hope you can move forward with the latest treatments....sending positive vibes and hugs :x::x:

Elisa76

Hi @1wiggle1
I must admit it I am shocked about your story.
I never thought that cancer could grow so slowly , especially in a young patient.
Have you ever had a proper genetic screaning of your mutations?
I am just wandering if you have some rare known mutation so that you could maybe find some tailored clinical trial?
I know chances are small but I am sorry I don’t have any other idea.
I hope you can somehow find an option.:x:

1wiggle1

Thank you all for your replies and your kind words.

I’ve been trying to read up on Lonsurf, but because it is so new, there doesn’t seem much in the way of “real life" information.

Has no one on this site tried it yet? I’m holding out for a success story! 😂

1wiggle1
Quote from @Lizalou:
Hi @1wiggle1

I have just read your profile and am desperately trying to think of your original name....please tell us. I suspect I have been worrying about you!

I really hope you can move forward with the latest treatments....sending positive vibes and hugs

Hi @Lizalou ! My online user name has always been '1wiggle1'!

1wiggle1
Quote from @Elisa76:

Have you ever had a proper genetic screaning of your mutations?
I am just wandering if you have some rare known mutation so that you could maybe find some tailored clinical trial?

Hi @Elisa76 and thank you for your reply. I have been tested for the 'known' mutations, e.g Lynch syndrome, as I was told at the time that this would have a bearing on the type of chemotherapy I’d be offered.
Unfortunately, nothing showed up for the genetic defects. They said that there will be more genetic defects as time goes by, but for the moment, they only know of about four.

1wiggle1
Quote from @Bear G:
Hi @1wiggle1
Wow you’ve been through a lot!
It really sounds like you’ve got a fab team looking after you And you have super hero levels of positivity to come through it as strong as you’ve done!
Lonsurf is starting to get used more but it’s still a fairly new drug. I’ve heard some good responses from people who haven’t responded to their treatments so fingers crossed this happens for you!
Big hugs
Bear

Hi @Bear G ! I remember your very first post when you joined the forum, so it’s nice to see you here again! 😊. You too are always a fountain of positivity and this is so helpful to others who need a boost.

P.S I’ve managed to update my profile now; it was just me being a bit dim 😂. It had been a long day.

Lirio345

Hi @1wiggle1, my goodness you have been through it, and having your own doctor follow you around is very impressive. I just want to keep one in a cupboard so I can ask questions whenever I think of them!
In relation to Lonsurf, if you search for it using the box in the top right hand corner (🔍) you will be able to read past posts and PM people if you wish. I really hope things go well for you, Kim :x::x:

1wiggle1

Thanks Kim @Lirio345 , I’ve messaged one lady that I think is taking Lonsurf. Just looking at the other posts now...

Marcus

I have just been put on Longsurf. My main oncologist said she has had someone on it for over a year. I was warned side effects could be worse than what I had been on. I'm afraid I don't know anymore as only did the first 5 days as then/ still in hospital after blocked stent.
Would be interested to hear others experience of it on longer.

determinedjoan

Best of luck with Lonsurf guys :x:

natalie

Hi I am due to start on lonsurf this week as Two previous chemo treatments haven’t worked either I would be interested to know how you are getting on x

Quote from @1wiggle1:
Thanks Kim @Lirio345 , I’ve messaged one lady that I think is taking Lonsurf. Just looking at the other posts now...
Quote from @1wiggle1:
Thanks Kim @Lirio345 , I’ve messaged one lady that I think is taking Lonsurf. Just looking at the other posts now...
Quote from @1wiggle1:
Thanks Kim @Lirio345 , I’ve messaged one lady that I think is taking Lonsurf. Just looking at the other posts now...
Quote from @1wiggle1:
Thanks Kim @Lirio345 , I’ve messaged one lady that I think is taking Lonsurf. Just looking at the other posts now...