Neuroendocrine Lanreotide (Advanz Pharma) Problems

Posted by fckcancer94 @fckcancer94, 1 day ago

So, I'm writing this on behalf of my mom. She was first diagnosed with pancreatic neuroendocrine cancer in Sept/2019, because of the extent of the cancer it was considered inoperable. She was put on a treatment of Lanreotide (Ipsen) injections, then in 2022 it was decided that because it had slowly grown and they were concerned with a small branch that had been slowly travelling down her portal vein, she should have PRRT treatment in London. This treatment went really well, it showed a good amount of necrotic tissue and also shrinkage, meaning the treatment had started to kill parts of the cancer and caused it to shrink. Last year (2024) we were told by my mom's cancer nurse that the patent on the Lanreotide being used (Ipsen) had ended and so the hospital was then able to shop around for other brands. The brand of Lanreotide they then began using was Advanz Pharma. Immediately after first having this treatment my mom started to exhibit severe symptoms such as, redness and severe soreness around the injection site (it also caused previous injection sites to swell and become irritated and sore), severe abdominal pain, her body stopped being able to process and digest her Creon tablets, Steatorrhoea, severe adverse effects to her diabetes and thyroid, racing heart, nausea, dizziness, vitamin deficiencies, problems with kidney and liver functions and just weeks after first being administered with this drug my mom's cancer went haywire. Her Chrom A blood results went from 5 to 19. After being brought in for an emergency scan and blood tests, her scan results showed a sudden and dramatic change in growth rate from 5% to 25% so it was decided that she would be put on chemotherapy tablets (Everolimus). This caused her Chrom A to lower slightly from 19 to 11. However with continued use of the Advanz Pharma Lanreotide her Chrom A went from 11 to 26 and three weeks later from 26 to 30. At this point we were told by my mom's oncologist that if they weren't able to get the cancer under control she would only have 12 months left to live. In Sept/2024 we arrived for my mom's treatment and the nurse patted the box of treatment, this being now Ipsen again, and were told "we're back on the good stuff again". Immediately after receiving Ipsen her Chrom A results dropped substantially from 30 to 4 and the scan after having Ipsen again showed a decrease in growth. In the consultation with her oncologist we spoke about our suspicions that it had been the change in treatment that had caused her cancer to react this way, in which her oncologist told us he had been completely unaware of a change in the brand of Lanreotide but suggested there was a good possibility that the brand change was the reason, however the only way to test this theory would be to have her take the Advanz Pharma Lanreotide again and see what happened, which was denied as my mother did not want to go through the same stress and hell that she had been going through previously. During the time in which my mom had been receiving the Advanz Pharma drug we had expressed our concerns many times to her cancer nurse and were always told that no one else is having issues, even though at one point he claimed there was when he read my mom's blood results and told her that other peoples had gone up a lot too. She was constantly gaslit and made out to be paranoid. Yet during the consultation with her oncologist the cancer nurse stated that he believed it very well could have been because of the brand change. My mom sought help through Neuroendocrine UK and was informed that she had not been the only one who was going through these issues with this brand and that many others had been in contact with the same complaints. Her oncologist did an inquiry but concluded that they couldn't be completely sure of it being the change in brand without testing the theory. Since then she has only been given Ipsen and things have gone smoothly. Until she turned upon to her appointment this month and was greeted with the box of Advanz Pharma Lanreotide on the desk of the cancer nurse. My mom was understandably upset after everything that had happened last year and stated she didn't know what to do, to which she was rudely told "well just don't have it and the cancer will get worse", he then claimed she just had an "issue with brands" and told her that if he "put the Advanz Pharma in to the Ipsen box she wouldn't know any different". At being treated so rudely my mom came home sobbing and terrified to ever go back for treatment again. She wrote an email to her oncologist in which it was headed "Private and Confidential" and asked explicitly that it be kept private between her and her oncologist, in which she was told that it absolutely would. We have been contacted by her oncologist today, who not only has put my mom's letter on the system so anyone can read it and told her that Advanz Pharma is substantially cheaper than Ipsen and so that is all the hospital will order in. We are truly so stuck and distraught and do not know where to turn. It is blatantly clear that my mom has a severe brand intolerance to the Advanz Pharma Lanreotide and yet is being forcefully told this is all she will get. Doctors and healthcare professionals have a duty of care and I believe this has been completely broken and is negligent. We would really appreciate any advice and/or confirmation that there are others who have experienced the same problems with this drug. I am currently left watching my mom have horrific panic attacks because she believes she is going to die and doesn't even want to return to the hospital to continue treatment as she has lost all trust in them.

Any help or advice would be greatly appreciated.

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

What an ordeal! I'm so sorry that your mom is going through this. It's understandably way too stressful and frustrating and scary.
We're in the US and my husband who has stage 4 pnet has also been receiving a generic version of lanreotide. The main difference he has experienced is that it hurts more when it is administered. He will have stomach issues sometimes but again this seems determinate on how it's administered by the nurse. However, there hasn't been a negative impact on the cancer itself.
In the US, if a patient can't tolerate or a certain drug doesnt work, they can switch to a better alternative. I'm not that familiar with the UK health system but I think it may be more restrictive. But I'm not sure. I pray your mom finds a solution.

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I’m not familiar with UK meds but wondering if Octreotide injections would be an available alternative?

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