Lonsurf

This is not the forum people are rushing to join. 

We have had folks here on Lonsurf, and I'm sure they will be here soon to share their experience. 

I just wanted to welcome you to our little home away from home. 

Tru

we (my hubby) started Lonsurf the 1st week of may (on 5 days, off two, on 5, off until next cycle). the first few days were "ok" but then the fatigue (extreme), naseau and loss of appetite set in. it was rough .. i was REALLY worried.
last week at our dr visit, his white blood count was too low to start the second cycle (on time) so it was held and we check labwork again this week to possibly start again Monday. The dr also may lower his dosage for this next cycle.
My hubby was diagnosed at stage 4 with mets to liver and lungs now. we did 2 years of chemo infusion and were given the next option of the pills when the infusion stopped in march (not working any longer). our dr has stated there could be possible trials if the pills will not help mantain however.. his platelettes have always been low and alot of the trials will not take him because of that.

(((((hugs)))))

He just finished 2 weeks worth.  So far he says he is more lightheaded than before but that is the only side effect.  His appetite is good, eats all the time.  I don't think this med will remove the cancer, but hope it slows it down.

debugy2k said:

You're right.  According to

You're right.  According to my research, Lonsurf DOESN'T kill off the tumors compared to the traditional chemo infusions.  Lonsurf is used to slow cell division...all cell division...both good cells and bad tumor cells.  The key word being "slow".  We're going on the 5th cycle of Lonsurf now.  Still no trials are available for my mom yet.  Good luck to everyone on Lonsurf.

Hi All:  Well I finished the 11th Round or Cycle of Lonsurf about 3 weeks ago...had a ct scan July 3- My wonderful oncologist did not give me the results- had to go online at BIDMC site to find the scan results and onclogist would not let me order Lonsurf for round 12- all this without looking at my scan!!!! Am infurinated with this person-has no buisness being an oncologist-

  Anyway, results showed liver stable, but omental thickening increased and area around  hernia bellybutton region increased-some difuse mass in pelvic area...I AM STILL SO MAD - after almost a year on Lonsurf with fairly good results, to be treated like this just is too much for me to handle.  I am sure they (my oncologist et al) will not allow me to continue the Lonsurf.....my insurance pays 100% so cost is not an issue.  Dont think I have any other options at this point...

Well I hope to be here for a while longer and for those of you on Lonsurf earlier cycles, hang in there it can slow things down and give you some  more time if you can stand the side effects- would I be here if I had not done the Lonsurf??  I dont know....

optimist777 said:

Personally, I think anyone is crazy to use Lonsurf

I understand the desperation we all feel.  I am a stage4 colon cancer patient myself who has exhaused the firstline chemotherapies as well.  But, serously, Lonosurf possibly only extends life expectancy by as much as 3 months, with many side effects.  That is just not worth it.  I was at the point where it was all my oncologist had to offer, I've done no chemo and have lived 5 very happy months on no chemo since then.  So much better then being sick on Lonosurf.  Just my two cents.  Don't underestimate how well you will do if you can get yourself in a low stress environment, and stick to a mostly plant based diet.  I sure you will do better, than being on Lonosurf.  Just my two cents.  I sincerely wish everyone the best. 

I am faced with the decision of taking Lonsurf or continue with diet and natura therapy. How is it working for you? I hope you are still with us, and enjoying a decent quality of life

I have been on lonsurf with avastin for a few months. My first scan showed it was working, and I really hope to get at least a year out of this drug. I do have fatigue, but knock on wood, doing okay so far. This one actually has in the fact sheet that the side effects are less for under a certain age. I think it was 55. I also have lung and liver tumors. Please don't listen to negativity on this forum. We all get down at times, so don't let other's blanket statements scare you. Make sure your oncologist or their nurse takes the time to go through all the possible side effects, and help you to make an informed decision. For me, I do what it takes to keep going and hope that as I continue on, other drugs are approved, or trials come around. In fact, I believe the protocol I am on lonsurf with avastin is from a recent study that was small but had good results.

Hi i have to start lonsurf with avastin very soon. Can I ask what your side effects were and how you coped on it, did you loose your hair. I've managed 4.5 years without loosing it and hoping that I'm okay now.

This is an old thread but felt I should mention my husbands experience with Lonsurf. First couple rounds were fine, but the last round almost killed him. Weight down to 150…supposed to weigh about 175. Extreme bloated feeling also occurred with the inability to eat. Also extreme constipation was one of the worst issues. Fatigue was also an issue along with low blood counts. I think one should think hard before trying this drug. I noticed a couple on this thread could tolerate it, but not my husband. We had to discontinue it before the 4th round.