Octreotide for Carcinoid Tumor User Reviews
Brand names: Sandostatin, Mycapssa, Sandostatin LAR Depot, Bynfezia Pen
Reviews for Octreotide
- jus...
- Taken for 1 to 6 months
- June 15, 2019
Octreotide "Is it Sandostatin?! It's impossible. After about two years of dealing with HCC (hepatocellular carcinoma), I had my first dose of Sandostatin LAR IM every 4 weeks. Now I'm going to have my fourth dose. But... The FDG PET scan and DOTA PET scan both showed no more liver tumors, no more multi-bone metastasis, and also lungs are clear, the whole body has no lesions, no metastasis. I have to wait, it's impossible to believe that grade 4 liver cancer is gone in just 2 months."
- Bru...
- Taken for 10 years or more
- September 9, 2021
Octreotide "Been on Sandostatin LAR for 19 years now and has definitely kept me going. Side effects were almost non-existent, a bit uncomfortable being administered due to the thickness of the needle and consistency of the mix, but over quickly. In the last 18 months, it's battling to hold back my markers (Chromogranin). Last 12 months, up'd the dose to every 3 weeks (from every 4 weeks), with little change. You'd think after 19 years, Novartis would drop the cost and also develop the next level... sadly not!"
- Bee...
- Taken for 5 to 10 years
- April 16, 2017
Octreotide "After about 18 months of 28-day LAR injections, I started having joint and back pain. I believe this is actually fairly common. I've asked who has this on various support group websites... lots of people! One person had it start up after their first injection. However, more respondents had it start after a year or more. The main location of my pain is in the hips. I've been to several ortho doctors who say I do not have but a slight bit of arthritis in my hips-certainly not enough to warrant hip replacement and in the range of an average amount for my age... the lower back pain started prior to the hips. It has been deduced that the pain must be a side effect of the Sandostatin-after x-rays, bone scans, MRIs, CT, etc... nothing looks abnormal."
- Bar...
- Taken for 2 to 5 years
- April 30, 2021
Octreotide "Has slowed tumor progression, covered by insurance, and Novartis has a copayment program that made my $50 copayment $25. Haven’t really had any side effects that I can say were caused by this drug. My life feels pretty normal to what it was before getting cancer."
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Your review helps others make informed decisions.- sic...
- May 3, 2018
Octreotide "I lost weight over the period this medicine was taken. I also needed to make too many trips to the bathroom. I can't regain the lost weight or strength. I'm very tired. The doctor can't tell me if it helps the tumors' secretion, or if I will ever be right."
- Bee...
- April 11, 2020
"Octreotide helps with watery stools. After the second monthly injection, I am pretty miserable. I have loose, pale, foul, chemical-smelling stools that float, bad pain at the injection site which makes it difficult to climb stairs or walk, exhaustion, abdominal cramping, strange pain throughout my body that comes and goes, some nausea that comes and goes, a bad, lingering headache, depression, and heavy anxiety. I hate it. I think I would rather just have the diarrhea."
- lip...
- December 17, 2009
"I was started on octreotide for 2 weeks, did not have carcinoid syndrome before taking the short-acting octreotide, but as I continued to give myself the injections, the diarrhea began and got worse. No other complaints except for slight itching at the injection site. The oncologist was having me take them to keep tumors from growing and metastasizing. She did, however, take me off of them because they were causing more problems than she thought it was worth for me."
- jus...
- Taken for less than 1 month
- April 1, 2019
Octreotide "I have liver cancer HCC with a high level of CgA, and I just started my Sandostatin LAR therapy yesterday! As I heard, Sandostatin LAR Depot is so effective, and it will help to control both liver tumors and bone metastasis. I hope so."
- gth...
- August 10, 2009
Octreotide "This medicine has been a lifesaver for me, nothing else worked. In a couple of days, I felt improvement - no uncontrollable diarrhea."
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Sandostatin, Mycapssa, Sandostatin LAR Depot, Bynfezia Pen
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Octreotide "I agree with the other review. This product has been a lifesaver for me. It has completely taken away my other symptoms. The only drawback for me is fatigue, but honestly, I can live with it considering everything else that I am dealing with prior to taking this medication."