Question about Lenvima: My father's... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Question about Lenvima

LAA21 profile image
LAA21Caregiver

My father's been on Lenvima for Stage 4 HCC for 6 months and has had two scans, both showing no change in the tumor size (was very large at, I believe, 12 cm?) and no further metastasis beyond a small spot on the adrenal gland, which has, upon this latest second scan, grown slightly.

His liver function and bloodwork are all good. His oncologist said he was surprised it has not shrunk in size, but said a good sign was he could not feel the mass by digital manipulation of his stomach on today's physical exam as he had felt it before. He said he and the panel of doctors are now going to discuss the next step, but are keeping him on the Lenvima for now because he has no intolerable side effects.

Wondering if anyone out there has had similar experiences with Lenvima, whereby no change has occurred after 6 months and, what would be among the treatment options for that next step?

My father said something about infusion but he will find out on his next appointment next month? He doesn't ask too many questions, and because of Covid, neither myself nor my mother are allowed inside, I am usually the one who goes back to the doctor with the questions, concerns and suggestions, so any input would be greatly appreciated. Thanks!

16 Replies
spazure profile image
spazureModerator

While I have no experience with this medication in particular, I do know that stopping and/or slowing down growth is a HUGE thing in the win column. These cancers move so fast that you often find you’re just begging for time — so glad this drug is giving y’all that.

No idea on what next steps would be unfortunately because we didn’t make it that far (wasn’t able to even try it). Hopefully someone else will have more insight for you.

LAA21 profile image
LAA21Caregiver in reply to spazure

Thank you for your reply. I agree that it's a win in that it has slowed down growth but my impatient father is already saying 'it didn't work' and unfortunately he's not the kind of person who would be willing to try new things, so we are hoping whatever the 'next' step will be will be something he is game to try! :)

spazure profile image
spazureModerator in reply to LAA21

Best wishes he gets something that works for all involved!

bwpickard profile image
bwpickardCaregiver

My husband had an 8cm tumor with portal vein invasion at time of diagnosis in March 2019. He was started on Lenvima and also had Y90 internal radiation treatment that puts beads directly into the liver.... which shrunk the tumor considerably. He has some small spots in the liver but has had good liver function throughout. Our oncologist kept him on the Lenvima until he showed signs of some progression 9 months later at which time Y 90 was repeated and he was switched to Opdivo, an immunotherapy drug which can have amazing results for a small percentage of HCC patients...my husband did not have dramatic response and was changed to Nexavar which he had trouble tolerating. He was changed to Avastin/Tecentriq infusions in August and has had minimal side effects and his last scans were stable to slightly improved. This med is a new first line standard for HCC and was just FDA approved end of May. Stable is good with this diagnosis and our MD said you stay with treatment that's providing it until it stops working. I know it must be frustrating for you not to be able to go in with your dad to talk to the MD as I am my husband's voice and ask all the questions. Would they let you listen in by phone so you can participate in discussion at time of appt? For my husband, the combination of a systemic therapy with the selective internal radiation therapy of Y90 has been a huge blessing so you might ask if he may be a candidate for that along with the Lenvima and what the next plan would be if they feel Lenvima no longer effective. Prayers and best to you and your dad!

LAA21 profile image
LAA21Caregiver in reply to bwpickard

Thank you so much for this and yes, we are going to ask to listen via phone next time. How long into the initial Lenvima did they start him on the Y90? Wishing your husband continued success with his treatment!

bwpickard profile image
bwpickardCaregiver in reply to LAA21

He had the Y90 within 2 weeks of starting the Lenvima. It was 2 steps...they had to "map" the liver to look at the vessels and make sure radiologist felt he could do the Y90 and then he calculated dosage needed and my husband had the procedure a week after that. We are blessed with a phenomenal interventional radiologist who has worked collaboratively with our oncologist though they are at 2 different facilities. It was an outpatient procedure though he had to stay most of the day. I couldn't sleep in the same bed for a couple of days and he couldn't hold our grandson. He had some flu like symptoms for a couple of days but that was all. Hope your dad's next visit goes well and gives you answers!

LAA21 profile image
LAA21Caregiver in reply to bwpickard

I finally got answers. They are recommending him to start ipilimumab & nivolumab. One of those is Opdivo. When your husband was on Opdivo, were the side effects tolerable?

bwpickard profile image
bwpickardCaregiver in reply to LAA21

That is Yervoy/Opdivo and was approved in March---2 immunotherapy drugs. Although there are a lot of listed potential side effects from Opdivo, my husband really had no problems with it. Our oncologist did discuss this combo as an option before our last change and said Yervoy has more side effects but they watch closely and they can be reversed with steroids. Since my husband is diabetic, preferred to try the Tecentriq/Avastin combo first to minimize any need for steroids. Keep me posted on how your dad is doing on this regimen and will keep you in thoughts and prayers for no side effects and great results!!!!

LAA21 profile image
LAA21Caregiver in reply to bwpickard

thank you! And to you too. Happy healthy Thanksgiving!

bwpickard profile image
bwpickardCaregiver in reply to LAA21

Same to you and your family!!!

LAA21 profile image
LAA21Caregiver in reply to bwpickard

I'm baaaack! Hope you had a nice Thanksgiving. So I was on the phone at the appointment today and the oncologist said that my dad's case was presented to the tumor board at the cancer center at the hospital and that, because the liver tumor didn't grow in almost a year, they are recommending he sees an IR to discuss those treatment options. They said Y-90 and TACE were two of the options but the IR will discuss. Because he tolerates the Lenvima so well, he will remain on that. They will also use ablation to remove or get rid of the small adrenal tumor that got slightly bigger but "of little concern." My dad was visibly shaking during this news, my mom said, so she point blank asked the oncologist if this is good news and he said it's absolutely good news. I read my dad your post about your husband's Y90 and IR etc, so thank you.

bwpickard profile image
bwpickardCaregiver in reply to LAA21

I'm so glad they are considering IR and that we can be an encouragement for your dad!!!! I believe my husband would not be here today if it weren't for the Y90 procedure in combination with the Lenvima. TACE is not as well tolerated from an I know there are others on the website who also had Y90. Please keep me posted on your dad!!! Happy to answer any questions I can! Prayers and best wishes!!!!

bwpickard profile image
bwpickardCaregiver in reply to bwpickard

sorry, part of the post went away... TACE not as well tolerated from after effects standpoint from what I understand but there are indications for it.

LAA21 profile image
LAA21Caregiver in reply to bwpickard

Hi there! How's everybody doing? I am sorry to bother you again, but I have one quick question: when they repeated your husband's Y90 for the second time, did they have to do the mapping part again? My dad had Y90 this past week and knock on wood he is doing well so far on day 4 post Y90. It was after the mapping that he had fever and felt awful. His IR said they may repeat Y90 in a month or so and I forgot to ask. Thanks!

bwpickard profile image
bwpickardCaregiver in reply to LAA21

Yes, our IR did repeat mapping---my husband's Y90 treatments were 9 months apart so they wanted accurate picture of the blood vessels and layout before putting in more Y90. Since your dad's sound like they may be closer together, may be different for him. My husband did not have issue with mapping afterwards so hopefully your dad won't either if they have to repeat. Prayers for good results from Y90!!

LAA21 profile image
LAA21Caregiver in reply to bwpickard

Thank you so much and all the best to you and your husband!

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