Husband will be starting CapTem

Posted by nickswife @nickswife, Sep 28 6:18pm

Hello. My husband has NETS that’s started in the intestine and has since metastasized throughout his body. He has been in monthly lanreotide since 2015, and underwent PRRT in 2023. Finished 11 months on Cabo with no improvement. CapTem is next and I’m terrified of the side effects. He’s so drained from the Cabo, I can’t see his body handling more. Are the side effects as horrible as I have read?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

rddogg | @rddogg | Sep 29 10:10am

was the PRRT Lutathera? Also, what is Capbo & CapTem?
Rddogg

nickswife | @nickswife | Sep 29 10:25am

In reply to @rddogg "was the PRRT Lutathera? Also, what is Capbo & CapTem? Rddogg" + (show)

@rddogg Yes, sorry. PRRT was Lutathera. Cabo is Cabometyx (cabozantinib), and CapTem is a combination of Capecitabine and Temozolomide.

Turkey, Volunteer Mentor | @tomrennie | Sep 29 10:27am

@nickswife Hi and welcome to Mayo Connect. I started on CAPTEM, short for capecitabine and temozolomide, for 13 cycles a little over four years ago and have been living on just capecitabine since. The side effects can be challenging and different for each person. They key factors driving side effects on capecitabine are how many milligrams will be taken daily, how long is each cycle, and how long the break is between each cycle. Do you happen to know this information? I can elaborate more on my experience and what I have learned from others, but the cycle information will really help. Thanks.

nickswife | @nickswife | Sep 29 10:39am

In reply to @tomrennie "@nickswife Hi and welcome to Mayo Connect. I started on CAPTEM, short for capecitabine and temozolomide,..." + (show)

@tomrennie We are meeting with his oncologist tomorrow to discuss the dosing. I do know however that each cycle will be 14 days on, and 14 days off, with the TEM being taken on days 10-14.

rddogg | @rddogg | Sep 29 10:46am

So was your lutathera treatment effective? Did it provide any improvement?
Thanks

nickswife | @nickswife | Sep 29 11:14am

In reply to @rddogg "So was your lutathera treatment effective? Did it provide any improvement? Thanks" + (show)

@rddogg His Lutathera treatment did shrink some nodules and lessened the activity of others, but unfortunately the stability didn't last that long.

Turkey, Volunteer Mentor | @tomrennie | Sep 29 11:36am

In reply to @nickswife "@tomrennie We are meeting with his oncologist tomorrow to discuss the dosing. I do know however..." + (show)

@nickswife That is the cycle that I was on and the most common for people with NETs. I started off with 2500mg of capecitabine daily. I took three 500mg pills in the morning and two at night. The temozolomide part of the cycle seems to be standard. I don't know the actually dosage that I took at the moment. Have you talked to the doctor about potential side effects yet? Searching on the internet or using AI can be terrifying. I try to stick with reputable medical resources. Since I get treated at Mayo in Arizona, I tend to start my information gathering on their website https://www.mayoclinic.org. Though not specifically listed to treat NETs, here is information on capecitabine. As you can see, it also can treat various kinds of cancer.
https://www.mayoclinic.org/drugs-supplements/capecitabine-oral-route/description/drg-20062501
At this point, what are you most concerned about CAPTEM?

Turkey, Volunteer Mentor | @tomrennie | Sep 29 11:48am

In reply to @nickswife "@rddogg His Lutathera treatment did shrink some nodules and lessened the activity of others, but unfortunately..." + (show)

@rddogg As @nickswife has experienced, Lutathera doesn't work for everyone. Lutathera can have amazing long term results for most people with minimal side effects, but everyone's body is different. Unfortunately, the same treatment for people with the same cancer might have completely different results and side effects. You don't know until you try the treatment. That is why cancer is so hard to treat. That is also why I have been on capecitabine for over four years. It works for me. I will quote my NETs specialist doctor, "If it ain't broke, don't fix it."

ronjake | @ronjake | Sep 29 1:00pm

Just like everything else, everyone reacts differently. I took CapTem 5 cycles only, because of the hand foot side effect started for me. I was fortunate enough that only day 10 when adding Tem was the only night/day I had issues with nausea, day 11 and after I was fine. So after the first time I just took nausea medication before taking the pill on day 10. Also, some doctors prescribe the Cap to take one pill a day, my doctor split my dosage to one pill twice a day, which I think made it easier without all the side effects. When it starts spreading again I will ask for CapTem before switching to something else. I was fortunate and had outstanding results with only taking it 5 cycles. I had over 20 tumors in my liver and 4 in other spots. MRI is no longer able to pick up any tumors. PET scan still picks up low activity. My doctor was in disbelief of my MRI results until he saw the PET. I'm now a star patient, hopefully lasts a few years.