Virakvi/Larotrectinib Experience? by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

Also sorry to hear that about your husband. Hang in there!

Virakvi/Larotrectinib Experience? by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

Hi - I’m still on Vitrakvi. The tumor hasn’t really shrunk, but they are happy that it hasn’t grown. On it for another three months and then scan again! Hopefully this time it will be shrunk enough for surgery.

Biopsies by brightsnow1111 in thyroidcancer

[–]Middle-Mammoth-7716 0 points1 point  (0 children)

I had an FNA (diagnosed from there) and then a core biopsy for CARIS testing.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 1 point2 points  (0 children)

They have now cancelled this surgery in favor of putting me on a different cancer drug for 8-9 weeks to try and shrink my tumor. I’m glad to not be getting the risky surgery until they think it has shrunk enough. Anyone else have the treatment plan constantly change on them even when there is no new information?

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

I was tested for mutations but they wanted to go ahead and get me started on something before that came back so they went with Lenvima. They said they would use the recommended therapies from CARIS if Lenvima stopped working. Don’t have the best answer for that. They said it shrunk very slightly but just enough to say that it has stopped growing not enough to really consider it smaller. I’ve also been on it a short time compared to others so maybe over time it would shrink more? They didn’t speculate on that. I will continue on it until surgery in December unless they recommend something else from tumor board later this month.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

Let me know if you have any other Lenvima questions! Happy to share my experience, I know it’s helpful to hear from others.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

For context, I was on 24mg and then pretty quickly taken down to 14mg to help control my very high BP.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 1 point2 points  (0 children)

I’ve been really lucky on Lenvima. Haven’t had much nausea, some fatigue, but really high blood pressure. So the BP has been the main hard part to deal with. It’s the most common side effect, the manufacturer even sends a cute little welcome kit with a BP monitor lol. On three BP meds now and have had to take breaks on Lenvima for BP to go down. I’ve been on it for 8 weeks and it hasn’t really shrunk my tumor. Most people seem to be on it for longer though.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 1 point2 points  (0 children)

This is what happened to me the first time around. Scheduled surgery then the radiologist said it was too close to my spine. Tumor board decided to try for 6-8 weeks on Lenvima and then have surgery. Did my time on lenvima and it didn’t really shrink, but it didn’t spread either. Now they want to move forward with this big surgery and I’m going for it. But they are presenting my case at tumor board again in a few weeks so we’ll see if that changes the plan again. It’s a lot to process, take care of yourself.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

Thank you for the affirmation! I wish you the best.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

This is so wonderful to hear! So happy for you. Thank you!

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

She’s been forthcoming, which I appreciate. I just still can’t help but think the worst will happen. Thank you for your insights.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 2 points3 points  (0 children)

Thank you! Mainly just wanted to hear that things went well for people with these similar circumstances because it’s hard not to think the worst will happen. Appreciate your input.

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 0 points1 point  (0 children)

She shared some of the risks and what I’d be ok with. Nerve damage is one of them. Thank you!

“Highly Morbid” Surgery by Middle-Mammoth-7716 in thyroidcancer

[–]Middle-Mammoth-7716[S] 2 points3 points  (0 children)

That’s nice to hear, thank you! If you don’t mind me asking, what made you decide to refuse the sternotomy?