I started on 40mg of cabometyx but I was nonfunctional so my dr took it down to 20mg that I’ve tolerated for 2 years.
How much cabometyx were you taking?
I started on 40mg, and I was so sick. They lowered it to 20mg. But after my scan the kidney cancer was still spreading. So now they switched me to Lenvima which I just started. Prayers for you!
I’ve been on Lenvima for 7 months, first at 24 mg for two months, now at 12. My thyroid cancer, after 3 surgeries and RAI metastasized to my lung. The 24 mg nearly killed me: BP was out of control, no appetite, joint pain, fatigue, etc. A different oncologist took me off of it after I ended up in the hospital for 3 days. 12 mg is tolerable and I had a clean PET scan in mid-May, no growth, no new nodules. Does anyone survive this metastasis? Or is it a death sentence.
Sorry if I’m being negative! It’s not my intention, but you guys are kindred. We’re all dealing with it. Most days are good and I love my life as all of do. I’m simply scared every moment of it.
I’ve been on Lenvima for 7 months, first at 24 mg for two months, now at 12. My thyroid cancer, after 3 surgeries and RAI metastasized to my lung. The 24 mg nearly killed me: BP was out of control, no appetite, joint pain, fatigue, etc. A different oncologist took me off of it after I ended up in the hospital for 3 days. 12 mg is tolerable and I had a clean PET scan in mid-May, no growth, no new nodules. Does anyone survive this metastasis? Or is it a death sentence.
So glad to hear that your PET scan came back clear! I think that could be a sign of complete remission. If you don’t mind me asking, which oncologist is currently treating you? Are you on Lenvima 12mg alone, or is it combined with any other therapy?
Make no mistake, the nodule in my lung is still there, just hasn’t grown or spread since October 2024. Even after the PET, my oncologist wrote an additional script for more Lenvima. Dr. Aderonke Ajala. She practices at the Shaner Cancer in State College, PA, a part of Hershey Medical Center.
I am on just the Lenvima and miscellaneous drugs to control my BP which has spike since taking it. Major side effect of Lenvima.
I also have a BRAP mutation which is apparently a good and a bad thing. From what I understand that while it signifies a more aggressive disease, it also provides more treatment options.
One day at a time, don’t waste your time wondering “why me” or “how long do I have”. I did that at first! Feel blessed by whatever higher being you believe in and enjoy your life! I’m pretty much doing everything I always did prior to diagnosis, although my joints and muscles hurt a little more from the various BP drugs I’m on. I still work, clean my house, do laundry, walk the dog…etc. I intend to LIVE!
My Husband just started Lenvima 20 mg once a day. He is experiencing high bp He was just start on a small dose of losartan which does not seem to keep it in normal parameters. The doctor recommended holding it once and the headaches and high BP resolved so it resumed. Three days later same symptoms so bad he goes to bed to chair. I am afraid of this drug. He has combination therapy with Keytruda 400mg every six weeks. It is so difficult seeing him unable to function as he once did .
I am so sorry to hear he’s having issues similar to mine. I asked my Dr. once why she started me out on the highest dose possible; she said it was because I was in such good health. Lenvima put paid to that these past 7 months. I am on Carvedilol, Atorvastatin, and Valsartan for blood pressure but none of it seems to have any effect. My BP is morning was 174/115. They consider my condition as Resistant Hypertension and I see a nephrologist next Wednesday; apparently they are very good at designing treatment plans for BP. Kidney health plays a big role in blood pressure.
I wish the very best for your husband and you are a wonderful person for trying to help him via this site. My husband refuses to discuss my cancer, side effects, or treatments. I’m kind of on my own. Please be vocal with the doctor. I was pretty docile early on, but I read ALOT and I ask questions now, a lot of them! I was reading about mRNA yesterday. Maybe useful in the future.
Hei, I have thyroid cancer with lung metastasis. I live in Norway. The doctors suggested Lenvatinib. I'm scared because of the sideeffects. Can somebody share their experiences on this medicine? Thank you
I had a horrible time with Levatinib. My blood pressure went sky high to the point I was on 4 blood pressure meds. Aches and pains all over. Loss of hair in small bunches all over my head. When I stopped it, it took a long time for my pressure to go down again. I also got an inflammation in my small intestine that was incredibly painful. The pain went away after stopping drug, but not sure about inflammation. Still acts up occasionally. They started me aggressively at 80mg and dropped me to 60, then 40mg. Hope you have better luck. Personally, I'll never take it again.
Hei! I understand that you will not take Levatinib again. What are your treatments now. I have thyroid cancer med lung metastasis. I am about to start Levatinib and I am scared of the side effekts.
Hei! I understand that you will not take Levatinib again. What are your treatments now. I have thyroid cancer med lung metastasis. I am about to start Levatinib and I am scared of the side effekts.
After taking Levatinib, I developed hypothyroidism, which is stated that it's a Common side effect of the drug. I'm on Levothyroxine for the rest of my life probably. I'm not a doctor, but I would definitely get a 2nd and 3rd opinion before taking it. God Bless!
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I started on 40mg, and I was so sick. They lowered it to 20mg. But after my scan the kidney cancer was still spreading. So now they switched me to Lenvima which I just started. Prayers for you!
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1 ReactionI’ve been on Lenvima for 7 months, first at 24 mg for two months, now at 12. My thyroid cancer, after 3 surgeries and RAI metastasized to my lung. The 24 mg nearly killed me: BP was out of control, no appetite, joint pain, fatigue, etc. A different oncologist took me off of it after I ended up in the hospital for 3 days. 12 mg is tolerable and I had a clean PET scan in mid-May, no growth, no new nodules. Does anyone survive this metastasis? Or is it a death sentence.
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Like -
Helpful -
Hug
1 ReactionSorry if I’m being negative! It’s not my intention, but you guys are kindred. We’re all dealing with it. Most days are good and I love my life as all of do. I’m simply scared every moment of it.
So glad to hear that your PET scan came back clear! I think that could be a sign of complete remission. If you don’t mind me asking, which oncologist is currently treating you? Are you on Lenvima 12mg alone, or is it combined with any other therapy?
-
Like -
Helpful -
Hug
1 ReactionHi!
Make no mistake, the nodule in my lung is still there, just hasn’t grown or spread since October 2024. Even after the PET, my oncologist wrote an additional script for more Lenvima. Dr. Aderonke Ajala. She practices at the Shaner Cancer in State College, PA, a part of Hershey Medical Center.
I am on just the Lenvima and miscellaneous drugs to control my BP which has spike since taking it. Major side effect of Lenvima.
I also have a BRAP mutation which is apparently a good and a bad thing. From what I understand that while it signifies a more aggressive disease, it also provides more treatment options.
One day at a time, don’t waste your time wondering “why me” or “how long do I have”. I did that at first! Feel blessed by whatever higher being you believe in and enjoy your life! I’m pretty much doing everything I always did prior to diagnosis, although my joints and muscles hurt a little more from the various BP drugs I’m on. I still work, clean my house, do laundry, walk the dog…etc. I intend to LIVE!
-
Like -
Helpful -
Hug
2 ReactionsMy Husband just started Lenvima 20 mg once a day. He is experiencing high bp He was just start on a small dose of losartan which does not seem to keep it in normal parameters. The doctor recommended holding it once and the headaches and high BP resolved so it resumed. Three days later same symptoms so bad he goes to bed to chair. I am afraid of this drug. He has combination therapy with Keytruda 400mg every six weeks. It is so difficult seeing him unable to function as he once did .
Cure2025 -
I am so sorry to hear he’s having issues similar to mine. I asked my Dr. once why she started me out on the highest dose possible; she said it was because I was in such good health. Lenvima put paid to that these past 7 months. I am on Carvedilol, Atorvastatin, and Valsartan for blood pressure but none of it seems to have any effect. My BP is morning was 174/115. They consider my condition as Resistant Hypertension and I see a nephrologist next Wednesday; apparently they are very good at designing treatment plans for BP. Kidney health plays a big role in blood pressure.
I wish the very best for your husband and you are a wonderful person for trying to help him via this site. My husband refuses to discuss my cancer, side effects, or treatments. I’m kind of on my own. Please be vocal with the doctor. I was pretty docile early on, but I read ALOT and I ask questions now, a lot of them! I was reading about mRNA yesterday. Maybe useful in the future.
Bless you and take care.
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Like -
Helpful -
Hug
1 ReactionHei, I have thyroid cancer with lung metastasis. I live in Norway. The doctors suggested Lenvatinib. I'm scared because of the sideeffects. Can somebody share their experiences on this medicine? Thank you
Hei! I understand that you will not take Levatinib again. What are your treatments now. I have thyroid cancer med lung metastasis. I am about to start Levatinib and I am scared of the side effekts.
-
Like -
Helpful -
Hug
1 ReactionAfter taking Levatinib, I developed hypothyroidism, which is stated that it's a Common side effect of the drug. I'm on Levothyroxine for the rest of my life probably. I'm not a doctor, but I would definitely get a 2nd and 3rd opinion before taking it. God Bless!