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Lonsurf

Grantlynn
Posts: 3
Joined: May 2018

My husband was diagnosed with stage stage 4 signet ring cell colon cancer January of 2018, he has had chemo folfox along with other chemo meds. His cancer has spread to the lymph nodes around his spine and his neck area. He started lonsurf a few days ago . He has done nothing but sleep and he has no appetite.  The Dr said after this there were only trials left . Is  there  anyone on here that has taken lonsurf ? hubby said he can't take anymore.

Trubrit's picture
Trubrit
Posts: 4857
Joined: Jan 2013

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

Grantlynn
Posts: 3
Joined: May 2018

Thank you, I hate that I'm here also, but I need support. 3 days he's been in bed , no shower and basically all he eats is cereal . I'm scared . Also it was 2017 when he was diagnosed 

phuckcancer
Posts: 61
Joined: Apr 2016

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)))))

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debugy2k
Posts: 83
Joined: Oct 2017

My mom has stage 4 colon cancer mets liver.  Been on a few chemo cocktails and finally switched to lonsurf this year.  Last month they gave her a surgery to remove the main colon tumor, appendix, part of the colon and fix the hernia.  Now she's back on lonsurf for the 4th cycle.

No side effects on the first 3 cycles of lonsurf before the surgery.  She started on the 4th cycle last week and we noticed some grade 1 oral mucositis.  Oncologist says hold off on the lonsurf for a few days while she uses "magic mouthwash" (yes that's a thing) to rinse a few times a day to see how it goes.

But no fatigue or appetite lose so far on the lonsurf.  There's a few forum threads here that we started on lonsurf.  Check it out.  You can message me directly if you have any questions.

vtspa6
Posts: 172
Joined: Aug 2015

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's picture
debugy2k
Posts: 83
Joined: Oct 2017

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.

beenbetter
Posts: 14
Joined: Mar 2017

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
Posts: 38
Joined: Feb 2018

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. 

Chris14108
Posts: 2
Joined: Oct 2019

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

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