Y90 AND Captem Combo

Posted by laree @laree, 1 day ago

Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is a clinical trial stating it has worked well.

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

I have pnets pancreatic primary many liver tumors they are functional gastrinomas grade 2 ki67 7% based on your husbands grade it sounds reasonable to me. I started lanreotide injection immediately that only controlled symptoms! Then about a month later did 7 months of Captem which I did not respond to. Then had y-90 on both sides of the liver which worked very well! I am pretty sure it won’t be fun to get them together but 25% is fairly aggressive as far as I know so it needs to be treated accordingly. I would definitely agree to it. I assume you have a pnet specialist that is part of a multidisciplinary team? Where is he being treated?

REPLY

Yes, we are going to UCSD for treatment. It appears that it is a 5yr clinical trial. The percentage is what I am concerned about for KI67. But there hasn't been enough time to track how fast growing they are. He is stable right now. On the 4th cycle of Captem. Nonfunctional Pnets. I don't know if the pancreas will be able to receive surgery or not, in the body of the pancreas. For right now not eligible. But it sounds like Y90 is hopeful. It also sounds like sort of a whammy to have both done at the same time. I hope it all works out for the better. It will probably be in the 5th cycle.

REPLY
@laree

Yes, we are going to UCSD for treatment. It appears that it is a 5yr clinical trial. The percentage is what I am concerned about for KI67. But there hasn't been enough time to track how fast growing they are. He is stable right now. On the 4th cycle of Captem. Nonfunctional Pnets. I don't know if the pancreas will be able to receive surgery or not, in the body of the pancreas. For right now not eligible. But it sounds like Y90 is hopeful. It also sounds like sort of a whammy to have both done at the same time. I hope it all works out for the better. It will probably be in the 5th cycle.

Jump to this post

How is the captem being tolerated? I was on it for 13 cycles.

REPLY

Well, I had probably explained in another thread. He was fine the 1st 2 cycles and used 0 nausea meds. Which I wasn't thrilled about. 3rd cycle starting Tem he did get really sick It might of been a combo of stress at work, working in the sun and no nausea meds taken. I had to take him to ER. He experienced severe pain with Gastritis, colitis and esphogoitis It has taken some time to heal. Now, he is taking nausea meds as a precaution. We don't want to go through that again. So I am hoping he can tolerate it.

REPLY
@laree

Well, I had probably explained in another thread. He was fine the 1st 2 cycles and used 0 nausea meds. Which I wasn't thrilled about. 3rd cycle starting Tem he did get really sick It might of been a combo of stress at work, working in the sun and no nausea meds taken. I had to take him to ER. He experienced severe pain with Gastritis, colitis and esphogoitis It has taken some time to heal. Now, he is taking nausea meds as a precaution. We don't want to go through that again. So I am hoping he can tolerate it.

Jump to this post

Now I remember that he didn't take the nausea meds. Lesson learned. Most of us do get a little sick especially while taking temozolomide. The captem will make him tired. Is he making it a point to get plenty of rest?

REPLY

@laree
That sounds like a really interesting and promising 2 punch approach, especially considering 25% ki67. It sounds like the captem is starting out well with stability and y90 can be super effective on the liver. My husband had y90 done 12 years ago when he had a 50% tumor burden in his liver and it killed most all of them and kept the rest stable for several years. My husband has also done captem recently with good results. (Pnet primary)

REPLY
@tomrennie

Now I remember that he didn't take the nausea meds. Lesson learned. Most of us do get a little sick especially while taking temozolomide. The captem will make him tired. Is he making it a point to get plenty of rest?

Jump to this post

Yes, since this has happened he actually took a leave of absence from work right now. If he had a desk type job maybe he could keep working, but it is too much. Now it is summer and it is alot of the time in the 90's here. I hate to be selfish, but I wonder if we will ever have fun again. This is really the most I have seen him sit EVER. Thanks for listening.

REPLY
@lindabees

@laree
That sounds like a really interesting and promising 2 punch approach, especially considering 25% ki67. It sounds like the captem is starting out well with stability and y90 can be super effective on the liver. My husband had y90 done 12 years ago when he had a 50% tumor burden in his liver and it killed most all of them and kept the rest stable for several years. My husband has also done captem recently with good results. (Pnet primary)

Jump to this post

That is really amazing and promising that it has stayed stable or away from the liver so many years. Thanks for all your input on this.

REPLY
@laree

Yes, since this has happened he actually took a leave of absence from work right now. If he had a desk type job maybe he could keep working, but it is too much. Now it is summer and it is alot of the time in the 90's here. I hate to be selfish, but I wonder if we will ever have fun again. This is really the most I have seen him sit EVER. Thanks for listening.

Jump to this post

I know this wasn't directed at me, but after 17 years I can tell you that we have had a ton of fun over that time. Hang in there!! My husband did go on disability about 3 years into this because he was so fatigued and it was tough to handle all the time off for appointments while trying to hold down a stressful and long hours job.

REPLY
@laree

Yes, since this has happened he actually took a leave of absence from work right now. If he had a desk type job maybe he could keep working, but it is too much. Now it is summer and it is alot of the time in the 90's here. I hate to be selfish, but I wonder if we will ever have fun again. This is really the most I have seen him sit EVER. Thanks for listening.

Jump to this post

@laree
That is a fair question on fun. I have asked myself that question many times especially on a holiday weekend like this. What would a typical 4th of July fun weekend look like for you folks? Did you miss out on something you really enjoy? Did you appreciate anything a little differently this year?

REPLY
Please sign in or register to post a reply.