Experience with Yervoy/Opdivo for HCC... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Experience with Yervoy/Opdivo for HCC? MD's watching scans when new area appears rather than changing treatment? MD's using a prior med?

bwpickard profile image
bwpickardCaregiver
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My husband has been on Avastin/Tecentric q3wks since August 2020 with stable scans and AFP dropping from 600 to 262 until this week when there's a new area of uptake 2.5-3 cm that both oncologist/IR thinks is new area of cancer outside of portal vein but not well defined yet. They both rec repeat scans in 2 months rather than changing tx yet as has had good quality of life and response to Avastin/Tecentriq. Avastin had to be held this week due to concerns of interfering with healing of a surgical drainage of an abscess which makes us more nervous since it is the tumor inhibitor. We will meet with oncologist next week to discuss when can resume. IR thinks Y90 will be needed but responds better if a little larger as more vascular and is in an area that is easy to get to with Y90 and he thinks needs to "declare itself." IR sees us after every scan so very familiar and always discusses with oncologist so feel we have an excellent team who think outside the box though not a major cancer center. Questions: 1- anyone else experience with MD's taking watch/wait approach as this is the largest area to appear since dx 2018 so making us nervous. 2-Anyone with experience with Opdivo/Yervoy? discussed Opdivo/Yervoy in past but due to known high side effects wanted to postpone this option 3-Anyone with MD going back to a treatment that worked for awhile but stopped working---in our case Linvema which worked for 9 mos.

History: Diagnosed March 2018 inoperable HCC 8cm with portal vein involvement -- treated with Linvema and Y90 that killed the tumor in the portal vein and shrunk the main tumor. other small nodules present but stable AFP 64 went to normal. January 2020 scans showed live tumor around the rim of the dead main tumor and smaller ones had started growing. Switched to Opdivo, repeat Y90 and had irritation of liver with fluid accumulation that had to be drawn off but no recurrence of ascites since. AFP started increasing with no correlation on scans, added Sorafenib to Opdivo at half dose as couldn't tolerate full and AFP kept increasing to over 600 though minimal change in scans. MD's concerned there was something occurring so changed to Avastin/Tecentriq in August and has done well until current scan. Our MD's have been proactive with using systemic and locoreg treatment together. We are just having a hard time with watch/wait since this is biggest area to appear since diagnosis though not yet fully delineated so any input/experience appreciated!! Thankyou!!!

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bwpickard
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reddog88 profile image
reddog88Patient

Hey! I think we've crossed paths on here before, I'm Wendy's husband, Dave. Your husband's and my cancer seem a lot alike and started about the same time, too. I was on the nexavar for about 8 months and then switched to Stivarga, which I've been on about 16 months. I also have PVTT.

My hcc metastasized to my lungs and I had about 6 tumors there and 3 in the liver. The latest scan in January showed no tumors in the lungs and only the original tumor in the liver, less than half its original size.

They have never been sure if the PVTT is a tumor or blood clot. The last scan showed that it had progressed into the, well I'll copy & paste it: Redemonstrated tumor thrombus in the right portal vein

which extends into the main portal vein. New soft tissue mass in

the superior mesenteric vein that measures 4.5 cm.

Like your husband, they are going to wait for the next scan in March to see if changes need to be made with the medication, seeing as how the Stivarga is working.

It seems when PVTT is involved, things just get messy.

Hope you guys get some good news soon!

bwpickard profile image
bwpickardCaregiver in reply to reddog88

Thankyou Dave!!! Yes, I've talked to your wife on here and followed you!! Amazing that all the tumors resolved except original one. Sounds like Stivarga has worked really well for you!!! Have you had any side effects? Feel better knowing this is standard practice with not jumping the gun! And will keep Stivarga in mind if we have to switch meds. Will keep you in prayers for good news on your March scans!!!

reddog88 profile image
reddog88Patient in reply to bwpickard

Thanks!

I've not had a lot of bad side effects with the Stivarga...I think it's very similar to the nexavar but I only lasted about 8 months on that.

The Stivarga is 3 weeks on, 1 week off and just once a day. There is some nausea later in the cycle for me but it is very tolerable.

My big question is: why is the Stivarga working so well against the other tumors but not affecting the PVTT?

I guess we'll talk about that next visit.

Good luck and hang in there!

bwpickard profile image
bwpickardCaregiver in reply to reddog88

That is the million dollar question....hope you get an answer!!! If you have to go to a different med at some point, since I think I recall immunotherapy was not a good option for you, Lenvima worked well for my husband for 9 months---he did have some stomach issues and increased blood pressure managed with med with overall good quality of life...Take care and thanks for this info!!!

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