I don't know if one is better than the other, my Oncologist is recommending either I try the CAPTEM or the PRRT. Just so I am clear I am high-grade neuroendocrine cancer (3). How is the CAPTEM working for you?
I don't know if one is better than the other, my Oncologist is recommending either I try the CAPTEM or the PRRT. Just so I am clear I am high-grade neuroendocrine cancer (3). How is the CAPTEM working for you?
I don't know if one is better than the other, my Oncologist is recommending either I try the CAPTEM or the PRRT. Just so I am clear I am high-grade neuroendocrine cancer (3). How is the CAPTEM working for you?
Well, let me know if there is anything that I can do to help. I just did some homework and your cancer is more aggressive than mine. i knew that I had some time. I had been sick for about 3 years before someone tested for cancer. I am stage 4 pancreas to liver. Finally got that confirmed with Mayo Phoenix on 8/22/22. I started CAPTEM about a week later. The side effects are pretty typical: aches, pains, nausea, vomiting, diarrhea, really itchy, and just feeling sick. I take CAP pills from day 1 - 10 and both the CAP and TEM pills on days 11 - 15, I have two weeks off, then start again. I am currently on my 7th cycle. The first two cycles were hard. i was sick most of the time. But, through some trial and error with my wife and care team, we have come up with a cocktail that is greatly limiting the side effects. For example, the chemo hasn't made me vomit in months. I have an appetite back and have gained some weight. The main tumor no long blocks my portal vein and smv. i feel so much better. I am told that my cancer is never going away and is inoperable. So, I wanted to find something that I could take for the long haul. The Dr. only presented CAPTEM. He was pretty confident it would work. I am so glad that he was right. Please let me know, if there is anything else that I can do to help Sean. OK?
Well, let me know if there is anything that I can do to help. I just did some homework and your cancer is more aggressive than mine. i knew that I had some time. I had been sick for about 3 years before someone tested for cancer. I am stage 4 pancreas to liver. Finally got that confirmed with Mayo Phoenix on 8/22/22. I started CAPTEM about a week later. The side effects are pretty typical: aches, pains, nausea, vomiting, diarrhea, really itchy, and just feeling sick. I take CAP pills from day 1 - 10 and both the CAP and TEM pills on days 11 - 15, I have two weeks off, then start again. I am currently on my 7th cycle. The first two cycles were hard. i was sick most of the time. But, through some trial and error with my wife and care team, we have come up with a cocktail that is greatly limiting the side effects. For example, the chemo hasn't made me vomit in months. I have an appetite back and have gained some weight. The main tumor no long blocks my portal vein and smv. i feel so much better. I am told that my cancer is never going away and is inoperable. So, I wanted to find something that I could take for the long haul. The Dr. only presented CAPTEM. He was pretty confident it would work. I am so glad that he was right. Please let me know, if there is anything else that I can do to help Sean. OK?
Just to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her mass on pancreas and too numerous lesions on liver and and reduced them by around 80%, to allow surgery on both. Not cured, but greatly reduced down to grade 1, with many options left it it reoccurs. Hope it helps you also.
Just to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her mass on pancreas and too numerous lesions on liver and and reduced them by around 80%, to allow surgery on both. Not cured, but greatly reduced down to grade 1, with many options left it it reoccurs. Hope it helps you also.
Just to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her mass on pancreas and too numerous lesions on liver and and reduced them by around 80%, to allow surgery on both. Not cured, but greatly reduced down to grade 1, with many options left it it reoccurs. Hope it helps you also.
Unfortunately, I was not accepted to the trial study (COMPOSE). In addition to neuroendocrine cancer in my liver I also have a skull base meningioma, the benign mass is not uncommon for those of us with neuroendocrine cancer according to my NET specialist. Looking at PRRT and CAPTEM. In the meantime, I am cramming as much fun as I can into whatever time I have left.
I appreciate the update regarding the trial study. I sense that you are disappointed not to be included in the COMPOSE study. Was the determination based on the skull base meningioma?
I am glad to hear that you are a candidate for the PRRT and CAPTEM. I look forward to hearing from you again.
Will you provide an update when you know which med you will be taking?
I appreciate the update regarding the trial study. I sense that you are disappointed not to be included in the COMPOSE study. Was the determination based on the skull base meningioma?
I am glad to hear that you are a candidate for the PRRT and CAPTEM. I look forward to hearing from you again.
Will you provide an update when you know which med you will be taking?
I was rejected because of the skull base meningioma. I was hoping to get on the trial program, it's being studied for those of us with grade 2 and 3 neuroendocrine. In my case, I would have been randomized for either the trial drug which is delivered in six doses, or CAPTEM. I'll stay in touch Im certain my Dr will be prescribing CAPTEM here shortly.
I was rejected because of the skull base meningioma. I was hoping to get on the trial program, it's being studied for those of us with grade 2 and 3 neuroendocrine. In my case, I would have been randomized for either the trial drug which is delivered in six doses, or CAPTEM. I'll stay in touch Im certain my Dr will be prescribing CAPTEM here shortly.
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I don't know if one is better than the other, my Oncologist is recommending either I try the CAPTEM or the PRRT. Just so I am clear I am high-grade neuroendocrine cancer (3). How is the CAPTEM working for you?
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1 ReactionI am a grade 2.
Well, let me know if there is anything that I can do to help. I just did some homework and your cancer is more aggressive than mine. i knew that I had some time. I had been sick for about 3 years before someone tested for cancer. I am stage 4 pancreas to liver. Finally got that confirmed with Mayo Phoenix on 8/22/22. I started CAPTEM about a week later. The side effects are pretty typical: aches, pains, nausea, vomiting, diarrhea, really itchy, and just feeling sick. I take CAP pills from day 1 - 10 and both the CAP and TEM pills on days 11 - 15, I have two weeks off, then start again. I am currently on my 7th cycle. The first two cycles were hard. i was sick most of the time. But, through some trial and error with my wife and care team, we have come up with a cocktail that is greatly limiting the side effects. For example, the chemo hasn't made me vomit in months. I have an appetite back and have gained some weight. The main tumor no long blocks my portal vein and smv. i feel so much better. I am told that my cancer is never going away and is inoperable. So, I wanted to find something that I could take for the long haul. The Dr. only presented CAPTEM. He was pretty confident it would work. I am so glad that he was right. Please let me know, if there is anything else that I can do to help Sean. OK?
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Like -
Helpful -
Hug
1 ReactionJust to add on CAP/TEM, it in conjunction with Lanreotide injections, helped my wife reduce her mass on pancreas and too numerous lesions on liver and and reduced them by around 80%, to allow surgery on both. Not cured, but greatly reduced down to grade 1, with many options left it it reoccurs. Hope it helps you also.
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3 ReactionsThank you both for the support and feedback. I'll know more about my options here next week.
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3 ReactionsPlease share as your able, you can do this! Technically, we are stage 4, but we have knock it way down, you can also. Let us know how we can help. 🙏
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2 ReactionsWow. I didn't know that. Thank you so much for the information kim.
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1 Reaction@ssf
Hello Sean,
I appreciate the update regarding the trial study. I sense that you are disappointed not to be included in the COMPOSE study. Was the determination based on the skull base meningioma?
I am glad to hear that you are a candidate for the PRRT and CAPTEM. I look forward to hearing from you again.
Will you provide an update when you know which med you will be taking?
I was rejected because of the skull base meningioma. I was hoping to get on the trial program, it's being studied for those of us with grade 2 and 3 neuroendocrine. In my case, I would have been randomized for either the trial drug which is delivered in six doses, or CAPTEM. I'll stay in touch Im certain my Dr will be prescribing CAPTEM here shortly.
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2 ReactionsWishing you all the best, @ssf. I look forward to hearing from you again, once you start the treatment.
Will you post and let me know how you are doing?