Lonsurf - Anyone used it before?

debugy2k
debugy2k Member Posts: 85 Member

My mom was recommended Lonsurf pills.  We've been on 5Fu, Oxaliplatin, Leucovorin, Irinotecan, Avastin.  I've done some research on the pro/con of it and challenged my oncologist about it and they said that it's their last chemo med that they have to offer.  Then they recommend mom go to clinical trials at Memorial Sloan Kettering.  

So was wondering if anyone used it before with success?  Or used it with a combination of other chemo drugs.

Thanks!

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited October 2017 #2
    Sorry

    Sorry I've not heard of that but my regime was similar to your mom's except the Avastin.  Hope it goes well for her.

    Kim

  • Lolly1001
    Lolly1001 Member Posts: 9
    Lonsurf

    Hello Debugy2k,

    After 9 months on Stivarga before progressing, my husband (Stage IV liver mets) took Lonsurf for 4 months.

    He didn't have any nausea or diarrhea with it, which was good. Early on, it played havoc with this pre-existing afibrillation (erratic heartbeats), so his cardiologist upped his meds to keep it under control. One month it tanked his blood counts resulting in a blood transfusion (2 pints) and a couple Neupogen shots to get back to almost normal levels. Of course, he also had fatigue that seems to accompany all the treatments.

    My husband liked taking the pills instead of IV infusions and the side effects were manageable for him.

    Unfortunately, he progressed on Lonsurf (new liver lesions, spread to a lymph node, and possibly a two small lesions on his lungs).

    They now have him on Cetuximab+Irinotecan infusions every 2 weeks, plus Xeloda pills (7 days on/7 days off). We'll know in a couple of weeks with the next CT if this cocktail works.

    Praying it works for your mom if she starts it.

    Take care,

    Lolly

     

  • debugy2k
    debugy2k Member Posts: 85 Member
    Lolly1001 said:

    Lonsurf

    Hello Debugy2k,

    After 9 months on Stivarga before progressing, my husband (Stage IV liver mets) took Lonsurf for 4 months.

    He didn't have any nausea or diarrhea with it, which was good. Early on, it played havoc with this pre-existing afibrillation (erratic heartbeats), so his cardiologist upped his meds to keep it under control. One month it tanked his blood counts resulting in a blood transfusion (2 pints) and a couple Neupogen shots to get back to almost normal levels. Of course, he also had fatigue that seems to accompany all the treatments.

    My husband liked taking the pills instead of IV infusions and the side effects were manageable for him.

    Unfortunately, he progressed on Lonsurf (new liver lesions, spread to a lymph node, and possibly a two small lesions on his lungs).

    They now have him on Cetuximab+Irinotecan infusions every 2 weeks, plus Xeloda pills (7 days on/7 days off). We'll know in a couple of weeks with the next CT if this cocktail works.

    Praying it works for your mom if she starts it.

    Take care,

    Lolly

     

    Mom has Stage 4 Colon and

    Mom has Stage 4 Colon and liver mets.
    We spoke with our oncologist today and she gave the option of either Lonsurf OR Stivarga OR Clinical Trials.  What was the reason that your husband stopped using Stivarga?  Was the Stivarga working?

  • Lolly1001
    Lolly1001 Member Posts: 9
    edited October 2017 #5
    Lonsurf vs Stivarga

    Hi Debugy2k,

    My husband began Stivarga after progressing on FOLFOX, FOLFIRI, and FOLFIRINOX. He was on Stivarga for 4 months and (with a liver ablation) became NED, so they gave him a chemo break. After 4 months, he developed new liver mets, so they put him back on Stivarga for another 5 months until he progressed again. So, they put him on Lonsurf, which as described above did not work.

    I believe the Stivarga, which my husband tolerated well, gave him several more months. I know others have had serious side effects, but thankfully he didn't. The only problem he experienced on Stivarga was fluctuations with blood pressure and heart rate, which was controlled by starting heart medication (Metoprolol).

    My husband is KRAS Wild, the oncologist wanted to try the Cetuximab+Irrinotecan+Xeloda combo he is on now. If that doesn't work (we'll know by next Friday), the oncologist says she'll switch out the Cetuximab with Avastin.  If that doesn't work, it will be clinical trials.

    Of the two, my husband felt Stivarga was easier on his body and worked for quite a while. Lonsurf was tougher for him because of the severe fatigue.

    Hope my answers helped a little bit. 

  • debugy2k
    debugy2k Member Posts: 85 Member
    Lolly1001 said:

    Lonsurf vs Stivarga

    Hi Debugy2k,

    My husband began Stivarga after progressing on FOLFOX, FOLFIRI, and FOLFIRINOX. He was on Stivarga for 4 months and (with a liver ablation) became NED, so they gave him a chemo break. After 4 months, he developed new liver mets, so they put him back on Stivarga for another 5 months until he progressed again. So, they put him on Lonsurf, which as described above did not work.

    I believe the Stivarga, which my husband tolerated well, gave him several more months. I know others have had serious side effects, but thankfully he didn't. The only problem he experienced on Stivarga was fluctuations with blood pressure and heart rate, which was controlled by starting heart medication (Metoprolol).

    My husband is KRAS Wild, the oncologist wanted to try the Cetuximab+Irrinotecan+Xeloda combo he is on now. If that doesn't work (we'll know by next Friday), the oncologist says she'll switch out the Cetuximab with Avastin.  If that doesn't work, it will be clinical trials.

    Of the two, my husband felt Stivarga was easier on his body and worked for quite a while. Lonsurf was tougher for him because of the severe fatigue.

    Hope my answers helped a little bit. 

    Hope you guys have good news!

    Hope you guys have good news!!

    May I ask what stage of cancer he has?

    My mom did 48 cycles of chemo.  Combo 1 - 5Fu, Oxaliplatin, Leucovorin / Combo 2 - 5Fu, Leucovorin / Combo 3 - Avastin, Irinotecan
    Now deciding between Stivarga and Lonsurf.  Read about many people having bad reactions to Stivarga so unsure if I should start mom on that one.  But also unsure about Lonsurf because it's so new and most people say they're only on it for like a month or so.

    Will probably start on Stivarga and then get mom on clinical trials.

  • Lolly1001
    Lolly1001 Member Posts: 9
    edited October 2017 #7
    Stage

    Debugy2k, my husband is stage 4 colon cancer. By the time of his colon resection in April 2015, it had spread to his liver. He now has multiple mets on his liver and one lymph node by the liver. Plus, we are watching a couple small spots on his lungs to see if they are mets. At this point, he's inoperable.

    Praying that your mom responds well no matter which treatment you choose.

  • debugy2k
    debugy2k Member Posts: 85 Member
    Y90 and Lonsurf

    Just came back from the hospital.  Looks like oncologist will start mom on Lonsurf while she does her Y90 procedure for the liver tumors.  I'm really not too happy with what I'm reading about Lonsurf.  Definitely going to try clinical trials since that option seems to give a more positive "feeling" than what I'm reading of Lonsurf.

  • Lolly1001
    Lolly1001 Member Posts: 9
    Kras status?

    Debugy2k,

    After Lonsurf failed, my husband was put on Cetuximab (brand name Erbitux) +Irrinotecan+Xeloda combo. We just had a scan and his liver and lymph nodes decreased by about 50% after 4 infusions (2 months)! His worse side effect has been an ugly, irritating rash and some diarreah. Note: Irrinotecan and Xeloda by themselves did nothing, but the Cetuximab seems to make a difference.

    So, if your mom is KRAS Wild, you might ask the oncologist about trying Cetuximab. I've read where Cetuximab doesn't work on KRAS mutant.

    I wish your mom all the best with the Y90 and Lonsurf.

  • Ace13
    Ace13 Member Posts: 17
    Lolly1001 said:

    Kras status?

    Debugy2k,

    After Lonsurf failed, my husband was put on Cetuximab (brand name Erbitux) +Irrinotecan+Xeloda combo. We just had a scan and his liver and lymph nodes decreased by about 50% after 4 infusions (2 months)! His worse side effect has been an ugly, irritating rash and some diarreah. Note: Irrinotecan and Xeloda by themselves did nothing, but the Cetuximab seems to make a difference.

    So, if your mom is KRAS Wild, you might ask the oncologist about trying Cetuximab. I've read where Cetuximab doesn't work on KRAS mutant.

    I wish your mom all the best with the Y90 and Lonsurf.

    KRAS status

    It's worth looking into IMO. My wife did two cycles of panitumumab (same effect as Erbitux/Cetuximab) with irinotecan. After the first cycle the scan showed no change but CEA dropped. Second cycle one liver met resolved, other mets were stable or showed reductions. We are on a break now because the onc says she doesn't have the energy for chemo right. 

    The rash went away after a few treatments. But has been replaced with very dry skin and some hair growth. 

  • Mikenh
    Mikenh Member Posts: 777
    Lolly1001 said:

    Kras status?

    Debugy2k,

    After Lonsurf failed, my husband was put on Cetuximab (brand name Erbitux) +Irrinotecan+Xeloda combo. We just had a scan and his liver and lymph nodes decreased by about 50% after 4 infusions (2 months)! His worse side effect has been an ugly, irritating rash and some diarreah. Note: Irrinotecan and Xeloda by themselves did nothing, but the Cetuximab seems to make a difference.

    So, if your mom is KRAS Wild, you might ask the oncologist about trying Cetuximab. I've read where Cetuximab doesn't work on KRAS mutant.

    I wish your mom all the best with the Y90 and Lonsurf.

    When you’re getting

    When you’re getting chemotherapy, it’s reassuring to know that the drugs you’re given have a chance of working. That reassurance is what the KRAS test provides to metastatic colorectal cancer (mCRC) patients being treated with the epidermal growth factor receptor (EGFR) blockers cetuximab (Erbitux) or panitumumab (Vectibix).

    The buzz about KRAS (pronounced KAYrass) testing started at the 2008 American Society of Clinical Oncology annual meeting. Five randomized controlled trials concluded that mCRC patients whose tumor tissue had KRAS gene mutations (between a third and half of patients tested) do not benefit from cetuximab or panitumumab, whereas some patients with “wild-type” KRAS do.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2816163/

  • debugy2k
    debugy2k Member Posts: 85 Member
    Lolly1001 said:

    Kras status?

    Debugy2k,

    After Lonsurf failed, my husband was put on Cetuximab (brand name Erbitux) +Irrinotecan+Xeloda combo. We just had a scan and his liver and lymph nodes decreased by about 50% after 4 infusions (2 months)! His worse side effect has been an ugly, irritating rash and some diarreah. Note: Irrinotecan and Xeloda by themselves did nothing, but the Cetuximab seems to make a difference.

    So, if your mom is KRAS Wild, you might ask the oncologist about trying Cetuximab. I've read where Cetuximab doesn't work on KRAS mutant.

    I wish your mom all the best with the Y90 and Lonsurf.

    Asked and it seems like my

    Asked and it seems like my mom is KRAS mutant.  So that specific chemo won't work on her.