Y90 AND Captem Combo

I'm glad that you found the link helpful, @zacharycat. Do you mind sharing which clinical trial piqued your interest? I would be interested in hearing if you get a response to your inquiry.

Teresa-
Was responding to Alpha PRRT with Ac-225 in GEP-NETs, seeking " patients with inoperable, advanced, SSTR+ well-differentiated GEP-NET that has progressed following treatment with 177Lu-DOTATATE/TOC". That was posted in 2023, so I don't know if it's still open. Sent an e-mail yesterday, asking where the trial was located and if they had openings.

There were other Alpha PRRT trials on the page, but they wanted patients with no previous PRRT treatment.

I hope that you get a response soon, @zacharycat.

UPDATE. Still waiting on the result for Y90. Finished cycle 5 with captem and Y90 at the same time. Tolerated it pretty well considering. Lots of fatigue still, it's been about 3 weeks. Dr said to use captem till progression or until not tolerated. Not sure about shrinkage yet. But would anyone do more than 12 cycles? I would think 12 or around that would be the limit. Also the Dr. mentioned at shot for maintenance not sure which one. He is nonfuntional. I am hoping we are at least at the halfway point. But it will be ongoing it sounds like. It is so hard to watch his energy levels being so zapped. Some pain after Y90 but it is getting better. Do you know of what kind of shot for maintenance? We will see the Dr. Soon actually on our Anniversary this year. All the best, looking forward with good results.

@laree I would assume the maintenance shots are Octreotide or Lanreotide injections done on a monthly basis for hormone secreting tumors. I’ve taken Octreotide for a year for stage 4 GI NETS w/mets. Only side effect is fatigue & pain at injection site. I use lidocaine cream or patches prior to the injection & it helps tremendously.

Thank you. My husband is nonfunctional nets. It makes sense for the monthly shot if we ever get to that point. I am just wondering how many cycles of Captem do people normally tolerate. I know everyone is different. Dr said until intolerance or progression which ever cones first. Then if it progresses then my mind is wondering what is next? I am really trying to stay positive

@laree I had 13 cycles of captem. For me, it got easier to tolerate the longer I was on it, but my capecitabine was reduced about six months in. How many milligrams of capecitabine does your husband take a day? How frequently does he take it?

@laree Will the results of the Y90 be visible on a scan or through another method? I hope you will be able to see the results soon, as they will help you understand what comes next. Other than the fatigue, does your husband have other symptoms?

@laree
Typically, net specialists will only allow approximately 12 cycles of captem because Temodor has a risk of causing secondary blood cancers. Thats why they monitor your bloodwork monthly. My husband had 14 cycles of captem. He is now on a maintenance dose of capcetibine only, due to that risk.

Hello, my husband has stage 4 Neuroendocrine Tumor Cancer. He had a large tumor on his pancreas, and innumerous tumors in his liver. He used cap/tem for 12 months and experienced 40% shrinkage of all his cancer. He did experience nausea, which was controlled by taking olanzapine. His doctor recommended the Y 90 treatments six months after his cap/tem treatments ended. After one practice run to make sure he was a candidate for the Y 90 treatment, he received a Y 90 treatment to each half of his liver on separate occasions. The Y 90 treatments caused even more of a reduction of the tumors in the liver and some even disappeared. Good luck to your husband. Hopefully he will also experience good results.