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How to get a second opinion for an international patient??
Neuroendocrine Tumors (NETs) | Last Active: May 10, 2021 | Replies (38)Comment receiving replies
Hi all
My daughter had a CT scan last week
It showed that there is a progression unfortunately
Her doctor wants to give her Everolimus
Anyone have an experience with Everolimus
Please share your story with us
Many thanks
Replies to "Hi all My daughter had a CT scan last week It showed that there is a..."
@hopeful33250
Hi dear
Many thanks for the useful links.
Appreciate your reply and your caring
Actually there are new points on the liver
And there are some tiny nodules on the lung.
Although we are giving her support and positive energy to fight and survive.
Hi Amani79,
My doctor prescribed Afinitor (Everolimus) and I took it for about 4-5 months a few years back after it was approved for NET patients. Unfortunately, I had to stop taking it because I developed bleeding problems which was a result of the Afinitor with other meds I was taking at the time. I cannot comment on whether Afinitor made a difference or not with the NETs since I was only on it for a short time, but while on it I did have side effects common to chemo patients: lost of appetite, weight loss, taste changes for most food and unable to eat.
Mary
Many thanks appreciate your reply @tresjur
My daughter start feeling the side effects you had mentioned (loss of appetite and unable to eat)
Which kind of chemotherapy your doctor prescribes for you??
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Hello @amani79
I am so sorry to hear of your daughter's progression of cancer. I can't imagine how difficult this must be for you!
Until someone posts about their experience with Everolimus, I thought it might be helpful to read about this drug from the Mayo Clinic website, https://www.mayoclinic.org/drugs-supplements/everolimus-oral-route/description/DRG-20072842
I also found some references to this drug on the following websites, cancer.gov website., https://www.cancer.gov/about-cancer/treatment/drugs/everolimus and https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm488028.htm.
As you can see this drug was recently approved for use in the United States.
If you are comfortable sharing more information about your daughter's condition, has your daughter's progression included different areas of her body (different organs) or are the tumors in the same areas but just larger?
Teresa