1. < Neuroendocrine Tumors (NETs)

Post Lu177 PRRT Treatment

Posted by markmark007 @markmark007, Jun 19, 2023

Do any participants have personal experience or know of someone who were treated with other therapies following unsuccessful Lutathera treatment ?
If so, what was used?
What were the results?
Many thanks,
Mark

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firepowr | @firepowr | Jun 20, 2023

Hi, Mark! I started PRRT with Lutathera in December 2022. I had three treatments. Scans in late May (just before my 4th tx) showed significant enough progression of two tumors in my liver and one on my pancreas to cancel the 4th treatment. I had a new liver biopsy the next day, and started cabozantinib the next week. I’m about 3 weeks in, doing okay. Main side effects have been abdominal pain/cramping and constipation. We are working to fix that!

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1 reply
markmark007 | @markmark007 | Jun 20, 2023

Many thanks for your informative response !!
Mark

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 4, 2023
In reply to @firepowr "Hi, Mark! I started PRRT with Lutathera in December 2022. I had three treatments. Scans in..." + (show)
@firepowr

Hi, Mark! I started PRRT with Lutathera in December 2022. I had three treatments. Scans in late May (just before my 4th tx) showed significant enough progression of two tumors in my liver and one on my pancreas to cancel the 4th treatment. I had a new liver biopsy the next day, and started cabozantinib the next week. I’m about 3 weeks in, doing okay. Main side effects have been abdominal pain/cramping and constipation. We are working to fix that!

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Hi @firepowr

As it has been a while since you last posted I was wondering how you are doing? When you posted in June you were going to begin a new medication, cabozantinib. How you are feeling with that medication?

REPLY
firepowr | @firepowr | Aug 4, 2023

It’s an interesting med. I started at 60mg, but due to side effects, the dose was reduced to 40mg after a week break in mid July. On the higher dose, I had constipation and then diarrhea, nausea, headaches, fatigue, and lack of appetite. My feet also started callousing and getting very red and painful, so walking became difficult, and my fingers felt like they had been burned on a hot surface. I also began having splinter hemorrhages in all of my fingernails. Pain in abdomen, cramping. WBCs reduced, low platelets. Oncology at Mayo-Rochester suggested the break and then started again on 40mg end of July. I’ve been on the new dose for about 17 days. WBCs are still a bit low, but not enough to stop med right now. I have scans in mid-August.

The weirdest side effect—this med is making all of my hair grow in blonde. I naturally have very dark brown/reddish hair. So that’s interesting!

REPLY
markmark007 | @markmark007 | Aug 5, 2023
In reply to @firepowr "It’s an interesting med. I started at 60mg, but due to side effects, the dose was..." + (show)
@firepowr

It’s an interesting med. I started at 60mg, but due to side effects, the dose was reduced to 40mg after a week break in mid July. On the higher dose, I had constipation and then diarrhea, nausea, headaches, fatigue, and lack of appetite. My feet also started callousing and getting very red and painful, so walking became difficult, and my fingers felt like they had been burned on a hot surface. I also began having splinter hemorrhages in all of my fingernails. Pain in abdomen, cramping. WBCs reduced, low platelets. Oncology at Mayo-Rochester suggested the break and then started again on 40mg end of July. I’ve been on the new dose for about 17 days. WBCs are still a bit low, but not enough to stop med right now. I have scans in mid-August.

The weirdest side effect—this med is making all of my hair grow in blonde. I naturally have very dark brown/reddish hair. So that’s interesting!

Jump to this post

@firepowr
Many thanks for the update -
Mark

REPLY
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