Starting Sorafenib soon

[Blocko]

Hi, I’m new to the forum. I’m a 69 y/o single( lost my wife 5 years ago to cervical cancer) man. I had a decades long history of HCV, until successful treatment to vanquish virus 2 years ago. HCC first appeared in 2015. I’ve had one RFA, 2 TARE’s and several TACE procedures. Last year the cancer invaded the portal vein and became metastatic. I’m now being treated by the Oncology service and will be starting on initial dose( 200mg po bid) of Sorafenib on 3 June. Any tips on dealing w/ side effects?

[reddog88 Patient]

Welcome!

I've been taking Nexavar since Jan of this year, 800mg @ day. The latest tests show a 20% shrinkage of 2 tumors in the liver and slight mixed changes in 4 lung tumors.

Side effects can vary a lot depending on the person. Diarrhea is the most constant for me. Imodium is your friend. I get some hand cramps. Some nausea, I take ginger chews for it.

AFP came down from 3868 to 2580.

Nexavar can be a mixed bag but I seem to be benefiting from it.

[AndreaWilson_Founder Partner Editor Caregiver]

Hello reddog88 & Blocko ,

The side effects vary with sorafenib. I've seen some patients tolerate it well, others not at all. If you do have trouble with the side effects, there are many other options available now including

+Cabometyx

+Lenvima (I've seen many patients tolerate this drug well; the main side effect is fatigue)

+Stivarga (regorafenib)

+Keytruda (pembrolizumab) approved for 2nd line only

+Opdivo (nivolumab) approved for 2nd line only

Check with insurance as some may not cover the newer drugs; Medicare should but it's good to double-check. If not covered, email me. Most of the drug companies have patient access programs that are not advertised.

~Andrea

[e-mail]

[Blocko Patient in reply to AndreaWilson_Founder]

Thanks Andrea!

I’ll report in after 3 June when I start taking Sorafenib

Peace...Rob

[Curly_Girl Caregiver in reply to Blocko]

Just checking in to see how the Sorafenib is going for you, Rob. Dave's been on it for almost 6 months now at the full dose. They are now having him come in for weekly labs to keep an eye on a couple of things (his phosphorus level and one of the liver enzymes) and may be dropping him to a lower dosage if the numbers don't get better. So far his main side effect is diarrhea. Next CT scan is in the next couple of weeks and we'll see what they want to do after that.

Wishing you the best!

~ Wendy in Michigan