I once wrote a blog entitled “Four more years“. I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you now, it worked as I still get hits today from unsuspecting political buffs!
I’ve since written updates at the 11-year point and will update you each year. This year I wanted to recount my story about the events leading up to Injection 1 on 9th December 2010.
9th December 2010
I was at home recuperating from major surgery wondering what the next event in my surveillance and treatment would be. Before surgery, I had received around 61 daily octreotide self-injections (that was fun …..) and then during surgery, I was on an Octreotide drip 24 hours before and then for a day or two after the surgery. Following that, I was receiving daily octreotide administered by the ward nurses until discharge on 26th Nov 2010. My chromogranin A was still elevated after that surgery but my 5HIAA was back to normal range with little sign of carcinoid syndrome. In fact, the last sign was a small flushing episode whilst cleaning my teeth on the ward!
I knew I would be prescribed a somatostatin analogue, either Octreotide (Sandostatin LAR) or Lanreotide (Somatuline Autogel) and I was glad when they called on 8th December to say a nurse would arrive at my house on the 9th to administer the first one.
I remember this visit vividly. I was fairly strong at that point, but I knew I was still vulnerable. The visit of the nurse (Lisa) was a positive sign, a sign of progress. She arrived with the drug and suggested we go through the injection leaflet (instructions) together. That was a good idea because it was the first time for both of us! In the beginning, I was her only lanreotide patient, the others were receiving chemotherapy at home. We trained each other! In those days, I was living elsewhere at the time where the kitchen doubled up as a reception area. I opted to lean against one of my kitchen surfaces while Lisa did the injection. That worked for a while, but I later moved to a chair (one of those relaxer ones which adjusts). I did that for a few years before moving to my current position which works perfectly for me (lying face down on a bed).
As I was still under close surveillance, the nurse carried out opportunity surveillance by checking all my vital signs (BP,SATS, temp, etc) plus taking some blood samples. Lisa was actually living in the same town as me and she ended up being the main injection nurse for around 4 years before she moved on to pastures new. Having a continuity person is such an advantage in this type of injection.
In 2015, the system changed, and I had to go to the hospital for the injection – that was not as convenient, and the continuity was lost. I had no idea which one of a dozen nurses in the chemotherapy ward would be available – it was pot-luck. Lanreotide is not chemotherapy, but it was a convenient place in my local hospital. That lasted 17 injections before the system moved back to home injections (breath of fresh air).
In July 2015, home injections began again and by 9th December 2022, I am at 157. It’s been a long haul but happy to do it all again! My prescription is every 28 days so another 157 injections would make it 314 around December 2036 (….I just fainted).
Thanks for reading!
At Home with Lanreotide
Not everyone can have a monthly somatostatin analogue at home. In the main it can happen with Lanreotide (Somatuline) but less so with Octreotide (Sandostatin LAR). Some countries are bound by their own healthcare or insurance regulations on where the drug can be administered. Read more here.
My other related posts
Here we are exactly 12 years later, 157 injections later, the injection is now a ‘walk in the park’ and just another day in the office of life. And I’m still here.
For my Lanreotide experience, please see these posts:
Lanreotide: it’s calling the shots – click here.
Lanreotide vs Octreotide – click here.
I am not a doctor or any form of medical professional, practitioner, or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity. Please also note that mention of a clinical service, trial/study, or therapy does not constitute an endorsement of that service, trial/study, or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over-the-counter drugs, and supplements such as vitamins and minerals. My disclaimer also contains a Disclosure Statement – payments from Pharmaceutical Companies and Miscellaneous.
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