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LONSURF Suggested By My Oncologist

Bulldog2's picture
Bulldog2
Posts: 2
Joined: Sep 2021
Bulldog2's picture

Posts: 1
Joined: Sep 2021

Sep 29, 2021 - 6:50 pm

New

Hi. My oncologist suggested I start on the Lonsurf regimen in a few weeks. Been reading the posts here and it looks like Longsurf only works for 10-12% of patients who take it. Some get terrible side effects, others hardly any.

I was diagnosed with stage 4 colon cancer in 2008. Have had over a dozen surgeries, multiple radiation and chemotherapy rounds over the years.

The cancer has spread to my esophagus and trachea over the past 2 years. I have to use a G tube for feeding. I was/am a foodie. I can drink some liquids a little at a time, but no solid food.  

Anyway, just wanted to ask the folks here who have been on Lonsurf, how has your experience been? How long does one take it? Did your insurance cover the cost? My insurance, Aetna, wants $3155 for the 1st month of pills, then $900/month thereafter. I think that's outrageous! I haven't made the decision to take the pills yet. Hoping for some good info from the group!

Thanks for your replies!

Trubrit's picture
Trubrit
Posts: 5534
Joined: Jan 2013

I am sorry you have found yourself here. 

I cannot answer your questoin about LONSURF, but someone will come along eventually, and share their knowledge.  I just wanted to say hello and welcome. 

Tru

flutemon's picture
flutemon
Posts: 41
Joined: Jan 2019

I was on lonsurf for about 5 months.  I could never have afforded it, but the company that makes it has a program..  Look for patient assistance on their website.  Get the oncologist involved.  The oncologist's office should be able to file for assistance.

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