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My husband will start taking Lonsurf.

Posts: 172
Joined: Aug 2015

Folfori is not working anymore and since they removed his port Lonsurf is next in line.  He will start Monday.  Anyone have experience with this treatment?  Also, Dr. upped his bloodthinner due to all the bloodclots but he is still swollen.  Sure hope something gives, he sure needs it!

Trubrit's picture
Posts: 5424
Joined: Jan 2013

I am sorry for your hubby's continued complications.  He has battled on, and I pray with you that he gets a the break he needs. 

I hope the Folfori works for him, and that his swelling lessens and goes away. 


Annabelle41415's picture
Posts: 6694
Joined: Feb 2009

So sorry that the first treatment didn't work.  I'm hoping that the Lonsurf works for him.  I'm not able to give you any knowledge on it.  It seems like he has been dealing with this for quite some time so I'm hoping that he does well with it.


Posts: 38
Joined: Oct 2017

we Might have to decide soon on lonsurf for my mother.

thanow for perspective and wishing you all the best!

Posts: 172
Joined: Aug 2015

So far he doesn't have many side affects.  He does get dizzy, lightheaded, but he has had that with any treatment.  As far as the cancer, it is growing.  We will go to see his Dr this Tuesday to go over the scan.  Look for a post afterward.  I don't think it has traveled anywhere else but it is in both lungs.

Posts: 38
Joined: Feb 2018

vtspa6, I'm sorry to here that you're husband is in such a position.  However, just beware that life expectancy survival on Lonsurf only improved patients life expectancy by about 3 months-- with a ton of harmful side effects.  Is it really worth it?  I've got in be honest, you may want to consider doing almost anything else, kale smoothies, sunshine therapy, or whatever-- I can't imagine it wouldn't be better then Lonsurf.  Just my two cents, and sorry again for what you are going through.  If you want tradional western chemotherapy, I would suggest trying a trial at a large research hospital like MD Anderson.  But Lonsurf-- no way. 

Posts: 1
Joined: Sep 2018

hi there,  I am new here.  Lonsurf has been offered to my husband as an option after having tried Folfox, Folfiere and a clinical trial at Johns Hopkins.  He has not been on any treatment since July and is currently experiencing leg swelling, extreme jaundice, fatigue and nasuea like crazy and is being treated by palliative care. He is stage 4 mets to liver and lungs, diagnosed May 2017.  I am trying hard to understand the advantage of Lonsurf as I just want him to be comfortable. 

Any guidance/ experience you can provide is appreciated. 

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