Lonsurf - Anyone used it before?

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

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, 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,

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.

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 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/