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Lonsurf costs and is it worth it?

kittersue
Posts: 3
Joined: Dec 2014

The doctor wants to put my mom on Lonsurf but it is apparently around $12,000 per month?  Not sure if Medicare or the drug company will cover any of it, she is going to see about completing paperwork tomorrow.  How much are most people paying for it?

Second, is it even worth it?  I saw studies only showed an extra 2 months of life.

She is 77, diagnosed 2015 stage 3, has had 47 rounds of different chemo, had half her liver removed fall 2017, and currently is showing no signs of cancer on scans but her CEA continues to be over 100, so I guess it's somewhere.

This is apparently the only thing left to try.  She had the liver surgery after the camptosar quit working.

$12,000 a month will bankrupt my parents.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

We have managed mCRC with 5FU and mild adjuncts, and renew the CRC's 5FU sensitivity with mild drugs and high potency supplements.

What we have done to slow down growth and spread, was to use  daily oral 5FU chemo (you have capecitabine/Xeloda) with IV vitamin C, megavitamin D3 and K2, lot carefully selected high potency supplements, along with cimetidine and/or celecoxib.   We have  destroyed a lot of cancer tissue and mets this way.  It is milder and less burdensome than typical chemo; done best, it kills cancer cells better too.

We spend a few hundred dollars a month, you could probably do it for $1500 per month over the capecitabine costs (insured?) in the US and have much better quality of life.

optimist777
Posts: 38
Joined: Feb 2018

Kittersue, I'm stage4 CRC and I've been battling this disease for 9 years, and was given less then two weeks to live upon diagnosis.  All other chemo drugs are no longer effective for me.  I spoke with my oncologist about lonesurf, and we both decided it was not worth it.  For me it was not about the money, as my insurance covered it.  However, it appears to have ton of side effects, and really didn't appear to help patients very much in terms of extended life spans.  I'm just trying natural remedies now, as my CEA numbers climb steadily.  Its sad nothing appears available for me, but at least it is nice not being on any type of chemo at the moment.  I wish I had more positive things to say to you, but I do think it is smart to avoid lonosurf for your mother.  Just not worth it-- in my opinion-- and it not the money. 

Tanstaafl, I love your approach, but for me Xeloda simply stopped working after a few years.  Not to be negative, but I don't think you can renew sensitivity of this drug.  Once it is no longer effective, its not effective (at least for me).  I've asked numerous doctors if this is possible-- and they all stated no.  Of course they could be wrong, but in this case I believe them.  I'm just curious, how do you possibly renew sensitivity of a drug like Xeloda?  Maybe you are doing well do to the supplements, vitamin C, etc.  Best wishes to you.  I hope you continue to do well.     

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

When you think about it, even mainstream "re-lights" 5FU treatments.  After folfox, folfiri.  Before moving Avastin treatments forward to 1st and 2nd line treatments, Avastin was used to re-invigorate both 5FU-LV and Folfiri tx.   You have to attack molecular weakness(es) somewhere but the 5FU backbone is pretty flexible, additive and useful.  Immunostimulation counts too.  The oncs hit the wall in part because of toxicity and max tolerability, and institutional inertia partly for lack of trying variations of promising ingredients mentioned in the literature, in a bigger/better cocktail.  Lin successfully re-treats some burnt out mCRC patients with Xeloda + Celebrex. 

Natural ingredients and off-label drugs actually form a much broader set of tools.   With my wife's extended bloodwork and marker responses, it is easy to tell.  The doctors don't even argue with me about it because they don't really believe in solo 5FU fighting serious mCRC for over 7 years (usually less than 6 to 12 months) either.  Some papers mention it in several circumstances, like Riordan clinic papers with IV vitamin C and other supplements.  Mainstream papers in  Pubmed  mention re-sensitization more frequently now, too. 

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Hi,  My mom is starting Cycle 3 of Lonsurf.  She's stage 4 colon cancer mets liver.  Been on other chemo drugs since Oct 2015.  Also did a Y90 on the liver tumors.

Usage of Lonsurf is easy since you just take the pills twice a day for 2 weeks and then you get 2 weeks off.  Only thing is you still have to get bloodwork done to check on your counts.

Costwise....$0 for us.  We're on United Healthcare.  Got mom on one of the best plans they have on it.  Didn't even have to pay for the copay on this.  

Meds get shipped from a specialty pharmacy.  

Effectiveness....not sure...starting cycle 3 shortly but of course we won't know anything until we get another CT scan done.  But at this point, something is better than nothing.  

Lovinglife1
Posts: 2
Joined: Oct 2019

I have been on lonsurf for 18 months. My main side effects have been the low blood counts and n/v. I am still working,traveling, and enjoying life. Hope this helps.

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