1. < Neuroendocrine Tumors (NETs)

Looking for information on CAPTEM treatment

Posted by bnjncrew @bnjncrew, Jun 21, 2023

My husband is about to start CAPTEM treatment and I am wondering what to expect for side effects to this treatment. He has had 5Fu in the past for 6 months and effects were neuropathy of hands and feet and metallic taste of food. Will this treatment cause the metallic taste as well? Doctor said it should not cause more neuropathy.

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

bnjncrew | @bnjncrew | Jun 29, 2023

Yes so far. His NET is insulinoma so the symptoms tend to be different than a lot of other Nets. He is experiencing lower than usual sugars but no real stomach upset yet. He doesn't start the second part of the treatment until Monday and it sounds like that part may have more effect on how he feels. Thank you for reaching out.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 30, 2023
In reply to @bnjncrew "Yes so far. His NET is insulinoma so the symptoms tend to be different than a..." + (show)
@bnjncrew

Yes so far. His NET is insulinoma so the symptoms tend to be different than a lot of other Nets. He is experiencing lower than usual sugars but no real stomach upset yet. He doesn't start the second part of the treatment until Monday and it sounds like that part may have more effect on how he feels. Thank you for reaching out.

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@bnjncrew

I wish you and your husband the best as he continues on with the second part of the treatment. Is it expected that this part of the treatment might help with the blood sugar problem?

Look forward to hearing your updates and questions as you continue on with this NET journey.

REPLY
1 reply
bnjncrew | @bnjncrew | Jun 30, 2023
In reply to @hopeful33250 "@bnjncrew I wish you and your husband the best as he continues on with the second..." + (show)
@hopeful33250

@bnjncrew

I wish you and your husband the best as he continues on with the second part of the treatment. Is it expected that this part of the treatment might help with the blood sugar problem?

Look forward to hearing your updates and questions as you continue on with this NET journey.

Jump to this post

We are hopeful that the treatment will help reduce the size of the tumors again. These tumors release insulin and cause his blood sugars to drop dangerously low.(30’s & 40’s) prior to the first treatment. The folfox/5Fu and monthly OCTREOTIDE treatment that he had for 6 months had shrunk his tumors by more than 50 % and his sugars were very stable as a result. Unfortunately his latest scans showed substantial regrowth causing lower sugars. We are hopeful that this new treatment will reduce tumor size again.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 30, 2023
In reply to @bnjncrew "We are hopeful that the treatment will help reduce the size of the tumors again. These..." + (show)
@bnjncrew

We are hopeful that the treatment will help reduce the size of the tumors again. These tumors release insulin and cause his blood sugars to drop dangerously low.(30’s & 40’s) prior to the first treatment. The folfox/5Fu and monthly OCTREOTIDE treatment that he had for 6 months had shrunk his tumors by more than 50 % and his sugars were very stable as a result. Unfortunately his latest scans showed substantial regrowth causing lower sugars. We are hopeful that this new treatment will reduce tumor size again.

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I will "hope" with you that this new treatment works. Is he still taking the Octreotide injections monthly?

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bnjncrew | @bnjncrew | Jun 30, 2023

Yes he has been on the OCTREOTIDE monthly injections for 12 months now

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bnjncrew | @bnjncrew | Jul 8, 2023
In reply to @rose4jim2417 "My husband has been on CAP and TEM and also a monthly injection of lanreotide for..." + (show)
@rose4jim2417

My husband has been on CAP and TEM and also a monthly injection of lanreotide for the past nine months. He was diagnosed in October 2022 with inoperable neuroendocrine tumor cancer, with a large tumor on his pancreas and inumerable spots on his liver, also on his spine and some lymph nodes. He takes olanzapine 5 mg for his nausea from the 5 days on TEM. His cancer has shrunk 40% so far. He experienced a metallic taste the first few months, and it disappeared on its own. He feels great.

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Finished first CAPTEM yesterday. Only mild stomach upset so far. Best news is sugars are seeming to normalize already . Feeling this is a good sign.

REPLY
2 replies
rose4jim2417 | @rose4jim2417 | Jul 8, 2023
In reply to @bnjncrew "Finished first CAPTEM yesterday. Only mild stomach upset so far. Best news is sugars are seeming..." + (show)
@bnjncrew

Finished first CAPTEM yesterday. Only mild stomach upset so far. Best news is sugars are seeming to normalize already . Feeling this is a good sign.

Jump to this post

Great news! My husband had a very similar experience. Sounds like he will be feeling much better! My husband has been able to have good quality of life while on CAP/TEM. Wishing him and you all the best!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 8, 2023
In reply to @bnjncrew "Finished first CAPTEM yesterday. Only mild stomach upset so far. Best news is sugars are seeming..." + (show)
@bnjncrew

Finished first CAPTEM yesterday. Only mild stomach upset so far. Best news is sugars are seeming to normalize already . Feeling this is a good sign.

Jump to this post

So glad for the improvement in your blood sugars, @bnjncrew! Such good news.

Looking forward to updates from you as you continue this new treatment.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 9, 2023
In reply to @rose4jim2417 "Great news! My husband had a very similar experience. Sounds like he will be feeling much..." + (show)
@rose4jim2417

Great news! My husband had a very similar experience. Sounds like he will be feeling much better! My husband has been able to have good quality of life while on CAP/TEM. Wishing him and you all the best!

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I appreciate you sharing such encouraging news, @rose4jim2417! That is great that CAP/TEM has improved your husband's quality of life.

I'm so glad that you found this forum and that you continue to share your experiences.

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