Looking for information on CAPTEM treatment

What worked for you controlling the nausea?

Hello @jacb and welcome to the NETs support group on Mayo Clinic Connect. I'm glad that you found this forum. The sharing of experiences with NETs is so important. NETs are unlike other cancers that are well-known. Unfortunately, it is highly unlikely that you will meet friends and neighbors who have had this type of disorder so it is important to find a community such as this.

I see that you posted about controlling nausea. Is this a problem that you are experiencing now?

I look forward to getting to know you as you post here. As this is your first post, please share, as you are comfortable doing so, a little about your NETs journey. Are you new to this diagnosis? Are you in treatment now?

Hi Teresa. Thanks for the nice welcome! As a result of elevated Alk P in my liver last December, and many diagnostic procedures since (ultrasounds, MRIs, biopsies, Pet Scan) I was diagnosed with Stage Four, Grade Three NETs, well differentiated, and breast primary (making it REALLY rare, as if it was not rare enough already).

In February, I began a course of treatment with Letrozole pills daily and Lanreotide injections monthly. I had no symptoms, and no side effects from the meds at all. Last month I went to Mayo and had a PET/MR and met with a Neuroendocrine specialist. The fancy new test showed much more clearly the extent and progress of the NETs. My tumors did not have the right receptors to use the Lanreotide, so we’ve stopped that, as well as the Letrozole, which was also ineffective. This week I began with the Cap/Tem . I’ve just had four days of the Cap, and the second afternoon I was nauseous…that has continued through today…day four (of a planned year of both meds). I have Zofran to take when I add the TEM on day 10 of the cycle. I’m sleeping quite a lot, too!

I am (was) a VERY active 76 year old (walking 5 or six miles a day, water aerobics three times a week, weight lifting twice, biking, etc.) , but is is certainly going to have to change if I can’t control the nausea. Hence my request for hints, tips, or advice about that from those in front of me on this adventure.

I have the breast tumor, lots of NETs in my liver (and nowhere else in my abdomen), one on my shoulder, several in my spine, one on my left femur head, and a few tiny ones in various but few lymph nodes.

So there is my story so far. Thanks for any advice!

My nausea was horrible. I currently wear a scopolamine base 1 mg patch behind my ear 24x7. I change it every 3 days. I also take LORazepam as needed. I rarely use lorazepam now but they helped me get through some tough times. I am currently am on my 12th cycle. Once done, the doctor wants me to stop taking temozolomide and only take capecitabine. Since my side effects mostly come from the temozolomide, I am all too happy to stop it.

Hello @tomrennie

I appreciate your post and the suggestions that you gave to @jacb. I hope that your method for dealing with nausea may be helpful.

Your welcome. It is so nice to see CAPTEM helping others. It isn't for everyone, but it works for me. If anyone else has questions, please ask. There are so many knowledgeable people here willing to share.

My wife’s experience was also tough in the beginning, nauseous. The last 4 days of the cycle with the 2nd pill, bothered her the most. In our case though those symptoms subsided to at least not nauseous after the 2nd or 3rd cycle. Every one is different as @tomrennie mentioned above, let us know how we can help you in your journey, we all are on the same team.🙏🙏

Thanks for your reply, tomrennie, and some alternatives should I need to suggest them. I hope the TEM elimination brings you some relief, and I also hope the CAPTEM treatment has been effective in slowing or stopping your NETs progress!

Hello,
My husband has NETS “insulinoma” also very rare. Pancreas metastasized to liver. He is currently on round 2 of CAPTEM and no real stomach upset. He takes Odanestron on the TEM days and also takes Senna-Tine as we have found that the Odanestron causes severe constipation . One other thing, and i dont know if this is part of the reason he doesn’t have stomach upset is he takes Omeprazole daily and has from before he was diagnosed. Perhaps ask your doc about this.

Thanks for the very useful tips! I went ahead and started Zofran on CAP days (I haven’t gotten to TEM yet). It’s helped a lot, but I’m sure worried about the TEM nausea that might be coming up next week!