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Ronny Allan
Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US).
I think after 163 injections (as of May 2023), I think it’s safe to say I’m now ‘at home’ with Lanreotide (Somatuline Autogel – Somatuline Depot elsewhere). I want to talk about Lanreotide here because that is where my experience is. However, below I have included a bit about how patients can get their long-acting Octreotide (Sandostatin LAR) at home too.
I was fortunate enough to have the injection ‘at home’ via an insurance policy for the first 4 years of my treatment. That was handy because it was informal, chatty, and I had excellent ‘continuity of service’ with the same nurse administering 80-85% of those 54 injections. I only had 3 other nurses over that period covering my local nurse’s holiday etc.
When I retired from work, I then had to travel to my local hospital and take my turn amongst the ‘great unwashed’. Don’t get me wrong, I have the greatest respect for the UK NHS. However, it’s also true to say my monthly ‘butt dart’ suddenly became more of a conveyor belt feeling, less chatty but in the main, the continuity effect I enjoyed previously was thrown right out of the window. I had some superb injections, but I also had some ‘not so superb’ ones. There was little continuity as my 33 hospital-administered injections were carried out by 17 different nurses.
If I had to list 6 common discussions between NET patients, issues with their injections of somatostatin analogues would be on the list. Common administration problems with Lanreotide include untrained administrators, fridge problems, incorrect injection sites, pinching instead of stretching, plunge speed, painful injections, and many others. All these issues can be linked to training and continuity. One thing NET patients like is an expert injection by the same person if possible. It’s also true to say that these issues can cause some anxiety among patients leading up to and during the procedure.
Boom!
I was therefore delighted to be added in July 2017 to a service in UK called HOMEZONE+ whereby a trained nurse will come to my house and administer my injection. Although it’s been available for some time, this element of the service has not been particularly well publicised. The drug will arrive a few days prior and be stored in my fridge ready for the injection day. For those worried about transport, the drug arrives by courier in a refrigerated vehicle. The service is provided by a third party via NHS, at no cost to the NHS or the patient, as it is a service funded by Ipsen Ltd. I also heard that some patients receive more than one injection at a time.
Now …… I got wind of this service 6 months prior to joining it but it took me some time to discover what it was all about, despite a lot of ‘digging’. I had previously heard of other elements of this service whereby the drug is delivered directly to patient’s house for self-injection, injection by a trained carer or for injection at a third-party site such as a local GP (PCP). However, the service I’ve signed up for is none of those, this is a service where a trained nurse will come to my house and administer the injection. Happy days. My subscribing hospital (Royal Bournemouth) is actively promoting the scheme to patients being administered Lanreotide. But ….. It was also suggested to me that not all hospitals are making the service available. If this of interest to other UK patients, I suggest you initially make contact with your specialist nurse or doctor and enquire (….. and if it was me, I would ask why not if they’re not making it available!). I’ve documented all I know but happy to chat more with UK patients about the scheme.
How’s it going so far?
On 14 April 2020, I had my 38th ‘HomeZone+ nurse administered injection and a permanent nurse was allocated to my area. It’s a first-class service from of the several UK providers – Sciensus (formerly Healthcare at Home (HAH)). I’m told which day it will arrive, and I receive two text messages with timings, so it goes from the window of a particular day to a window of 4 hours and then 2 hours, which allows me to get on with my life. The Nurse separately makes an appointment to come and administer the injection at an approximate time. This works excellently too. I set an alarm to get it out of the fridge (I allow 60 minutes for maximum flexibility. The injection is given very efficiently, and my next appointment is made ready 28 days ahead. I also found out that sharps box provision and collection is available through the programme, another bonus.
What about Lanreotide at home outside UK?
I researched to see if other countries have something similar for Somatuline (Lanreotide) – please note not all patients will be eligible so you need to check first. I’m thankful to the patients who provided me with the details – keep me updated please, I will add/update as required.
1. The Netherlands. I attended ENETS Barcelona and sat in on a presentation from a Nurse in The Netherlands who described a similar scheme. The presentation was entitled Home Injection Service for Somatostatin Analogues so may also include Octreotide. Contact is Wanda Geilvoet at the Erasmus Medical Centre in Rotterdam.
2. USA. Ipsen US appears to have a similar scheme through their Ipsen Cares program. It’s called “Home Health Administration (HHA)”. This is available for patients who are unable to receive their Somatuline Depot injections at the doctor’s office. Eligible patients can have a nurse visit their homes to administer their injections. There is no cost to the patient for this option. HHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES. The Nurse HHA Program is an additional offering of IPSEN CARES available via a doctor for all eligible patients prescribed Somatuline Depot.
• A physician must prescribe Somatuline Depot to be administered by Nurse
Home Health Administration for the patient.
• The program is available to most patients covered by commercial insurance
plans.
• Patients may not participate if prescriptions are eligible to be paid in part or
full by any state or federally funded programs, including, but not limited to
Medicare or Medicaid, VA, DOD, or TRICARE.
• Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not
eligible.
Click here for more details. Go to “For Patients/Caregivers” and then “Additional Resources” and then scroll down to see “Injections at Home”. For those having difficulty, this is what you will find:
At this link it currently (May 2023) says “Nurse Home Health Administration (NHHA) is available for patients who have difficulty receiving their Somatuline Depot injections at their doctor’s office. Eligible* patients can have an IPSEN CARES nurse visit their site of choice to administer their injections. There is no cost to the patient for this option. NHHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES. A form needs to be completed Download Now
*Patient Eligibility for Nurse Home Healthcare Administration: A physician must prescribe Somatuline Depot to be administered by Home Health Administration for the patient. The program is available to most patients covered by commercial insurance plans. Patients are not eligible if prescriptions are paid in part or fully by any state or federally funded programs, including, but not limited to, Medicare or Medicaid, VA, DoD or TRICARE. Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not eligible.
Note site also contains more than just injections at home, it also provides other benefits such as help with copay.
Note: Ipsen briefly opened up this program to all during the Covid pandemic, but I believe it’s now been withdrawn.
3. Canada. The Ipsen Canada site is spare but according to one local patient, it’s possible to arrange for delivery and administration of the injection. There may be differences between provinces so always ask what’s available. Click here
4. Australia. There seems to be a programme called ‘Assist’. Click here for more details.
5. Republic of Ireland. They have the same service as UK, also called HomeZone. They will send a trained nurse out to your home monthly to do the injection for you free of charge. To arrange, the number is 01 4291820
6. Germany. HOMEZONE service is available in Germany. Most doctors are not aware of it, you will need to contact Ipsen Germany and ask them to arrange the service with your oncologist.
I will add other locations as and when I find out.
Let’s share data!
I’m sure there must be more countries involved so please let me know. In fact, would UK patients let me know if you are on the ‘Homezone’ scheme where a nurse comes to your house and administers the drug, and via which hospital was this arranged? I’ll update the blog so we can all find out about it.
SANDOSTATIN LAR (OCTREOTIDE) PROGRAMMES
In USA, the Mobile Administration Program offers administration of Sandostatin® LAR Depot (octreotide acetate) for injectable suspension by a registered nurse at a time and place convenient for your eligible patients* so they continue to receive the correct prescribed dose at the right time. †
For more information, call 1-800-282-7630 or download the enrollment form.
*Limitations apply. Available only for patients with commercial insurance. Program not available for patients with Medicare, Medicaid, or any other federal or state program. Program not available for residents of Massachusetts, Michigan, Minnesota, or Rhode Island.
†The program does not replace your care or the authority of the prescribing physician. Patients still keep their regularly scheduled physician checkups. First dose must be administered by prescribing physician.
In countries other than USA, please click here to see how this program works and a list of national offices where you can find out if it is available where you live. click here.
Australia – 2nd June 2023. Anecdotal update from an Australian patient. “Australia’s home program for Octreotide has stopped, from end April 2023. Patients now have to source their own way of getting their injection – either at GP, specialist, etc. Novartis decided that with some generic brands being introduced, it wasn’t in their best interest to continue with the program, which was unfortunate for the recipients/patients.“
Related reading:
You may also appreciate my other blog posts on Somatostatin Analogues in general and Lanreotide (Somatuline):
12 years of Lanreotide – click here
Lanreotide – it’s calling the shots – click here
Lanreotide vs Octreotide – click here
PoNETry – An Ode to Lanreotide – click here
For a video showing how Lanreotide works – click here
Somatostatin Analogues and Delivery Methods in the Pipeline – click here
Disclaimer
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.
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.
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Hi Ronny
I used to travel 360km round trip to hospital for butt dart, but my neighbour is a clinical nurse and does them for me at home, what a relief. I have also had countless nurses perform the injection, all in different ways, the worst is when they pinch the skin to inject like a normal sub cut. Hard to pull away and tell the nurse they need to read the instructions and you must not squeeze the injection site 😭. I did on 3 occasions and actually was apologised to by one nurse who had given “hundreds” of injections and did not have a clue. Even the clinic manager had a discussion and looked a bit lost. Luckily my neighbour offered 2 years ago and the consistency is good, her neice even fills in when she’s on holiday, needless to say I’m not moving unless she moves😀
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Great story!
Sorry Ronny did not see this of course you can use the story
I was going to ask if you noticed any difference in the new delivery system, also had 3 but way more painful, the site is sore for 2 or more weeks and itch, cor blimey….
I can only guess they are not doing it correctly if the new one is more painful than the old. The same rules apply:
1. Get out of fridge at least 30 mins before administration
2. Site is upper outer quadrant, alternate buttock every inj
ection
3. Stretch skin, do not pinch
4. Inject slowing for around 20 seconds
5. Keep plunger depressed when removing (that’s a new tip for the new syringe)
6. Do not vigoursly rub injection site after needle withdrawal.
Hi John – would like to use your story, anonymous of course. I think people will really like this! Let me know if that is OK
Jan, I was told last week I may need to start taking Everolimus. How have you gotten along with that chemo pill and are there many side effects? I’m in the US, and getting shots of Octreotide. I asked about Lanreotide, and the hospital does not carry it, and told me it was like coke & pepsi, no difference. I do not think that is right.
not used everolimus but people in my private group have used it.
Octreotide and Lanreotide are similar but there are some huge differences in the method of administration and the FDA approvals. https://ronnyallan.net/2016/12/28/lanretotide-vs-octreotide/
Hi Jimmy, you ask about Everolimus. I was prescribed it post-op after secondary NETS in my liver from a primary in my bowel which had already metastasised when I was diagnosed – 7 years ago. So Everolimus is, am told, a ‘serious drug’. I started with 10mg/day but after a few months I was really not tolerating the side effects. Itchy skin, a head cold for 6 weeks, nails disintegrating and my hair became dry and curly from sleek and smooth! Upside I didn’t loose it. After say 6-9 months my dosage was reduced to 5mg/day which is completely tolerable but most importantly my specks of NETS in my mesentry and left in my liver (not accessible in surgery) have been suppressed and no notable tumours have developed. Alongside the monthly Sandostatin, I believe I am stable. I have monthly ‘bloods’ and a yearly PET Gallium scan (clearer than the Otreotide scan) which over 6 years has not shown any NETS requiring removal. I have had a non-related abdominal hernia op (on scar tissue) and my gall bladder removed. Stones are a side effect of Sandostatin. At the time of both ops, a year apart, a few minor ‘developments’ were removed as the surgeon ‘rummaged’ whilst I was in surgery. I can’t comment on Sandostatin/Octreotide injections but in my limited knowledge I do think they might be the same. Ronny is our expert on this. In conclusion – my meds are keeping me stable and after taking my pill and monthly ‘stab’ am getting on and forget I have nasties within. Am living 9 months of the year in Barbados and having a ball, then 3 months in UK summer. Two wonderful ‘lives’; I appreciate how fortunate I am. I wouldn’t hesitate to recommend taking Everolimus but be honest if you find the side effects debilitating. Wishing you all the very best. Jan.
Congratulations and thank you Ronny on reaching out to share and inform us all re Nets etc.
Am interested to know if you/others have blood tests each month as I do and have had for the last 5 years whether in UK or away. The results indicate if I am within an acceptable range for dozens of tests to receive the 4 weekly Sandostatin ‘stab’. Thankfully not yet had a problem although Hb diminishes and I have had ‘top-up’ blood transfusion. Spending considerable periods overseas, my local GP emails the blood results to my oncologist in UK which he approves, before we go ahead with treatment. I am also on a daily Everolimus pill – anyone else having this combination? For interest…my meds are dispatched by the hospital pharmacy via UPS to Barbados with courier charges at my cost. It is a lifestyle choice which I am more than happy with.I return to UK for scans and surgery. This year the removal of my gall bladder which is a known side effect of Sandostatin I believe. Thanks for reading. All best to you with thanks Jan.
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I get mine every 6 months, similar to many. I get others for other issues as and when (thyroid etc). Which bloods are connected to Sandostatin? Not heard of that. Probably better off joining my facebook private group to speak to others.
Hi Jan, I don’t have monthly blood tests. I have testing done prior to and following each PRRT treatment which are every six months right now and also about half way in between, so basically every three months. I have never taken of Everolimus. Had my gall bladder out long before NETS was diagnosed, so I guess that’s one thing I won’t have to deal with! Elaine
Rerally interesting to read and will be a useful reference documents for other suffers of this terrible illness. Thinking of you and your family. Well done Ronnie. A leading light in this complex field.
cheers Jim! (p.s. did you know I was better than you at snooker?)
I administered my husband’s injection for the first time today and although slightly nervous it went well. The nurse said I did well so really pleased with myself.
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Well done Gail!
Great fun is n’t it. Two fingers to NETs & get on with living 👍🤗👏🎉
I’ve self injected from the first one. Was sent home after my 6 week check up post liver resection surgery with prescription via home delivery arranged. Once it came I followed instructions and have done them myself since then, May 2014. A drug company nurse did visit to check on me but I’d done 2 by then. As a 42 year veteran of type 1 diabetes I did not feel I needed to be educated on injecting myself! 😂x
you’re braver than me Alison. Good luck with everything
Hello Ronny. My name is Zigor Nuere and im from Spain and this year started with the Somatuline Autogel 120 mg threathment after been diagnosed multiple endocrine neoplasia. Men 1 syndrome. i am now need to travel 1 month in a long flight to China and bring one autogel injections. What´s the best solution? Cant find anything but the insulin cooler which is clearly not big enough.
difficult one. I’ve heard these stories before though. It’s real issue for NET patients. I tend to organise my holiday around the injections, perhaps shifting the date by a few days. You can actually delay the injection if that suits? I’ve gone 5 weeks without when I went to USA. It didn’t really have any effect, I guess it depends on your situation. Planes have fridges (but they may not accept it to avoid any responsibility) and I know people buy ‘cool bags’ at the size required and then put it in hotel fridge on arrival. You may also have issues at customs. One lady went to Australia for 6 weeks and arranged for her injection to be provided by a local hospital but I guess in China that is an unknown! If I was you I would try to arrange my injections before you go and then get one as soon as you get back. Good luck
Hi
I brought my injections from Boston to Peru
Bought a Cooler back pack and filled it with ice packs. (Do not use dry ice, the airline advices to use it but then I got the technical explanation that dry ice could actually freeze the content). I informed the airline and took the prescription and invoice with me. They noted that on their system. The medicines did not go thru x rays by my request
During the flights I explained about my condition and refilled the back pack with ice , they carry on board.
Hope this helps
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Hi Ronny. I just got diagnosed with a Net at páncreas with Metastasis to liver. Today I took my first shot of lanreotide depot at 3 pm. I got lots of gas and stomach cramp after dinner and vomited (dinner). Are these side effects typical on the day of the shot or do they prevail during the hole time. Where can I find information about this. Thanks in advance
NET experts say it takes 3 or 4 injections to settle down. I don’t have these issues on the day of injection and gas and stomach cramps seem to be common problem, perhaps tied into diet. Vomiting is unusual. I do know some people have issues at the beginning of their treatment. Gas and stomach cramps don’t seem to bother me too much nowadays, perhaps my system has learned to live with the new plumbing and I’ve adjusted accordingly. Difficult question!
Thanks for the quick response. Let’s hope is a temporary thing. When you say the “Net experts” who are you referring to ?
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Seems to be a common comment but the one that springs to mind because I’ve read him saying it several times, is Dr Gene Woltering.
I’m back from holiday and catching up on posts I missed! Here in Canada, I order my monthly Sandostatin from my local pharmacy. Fortunately, at this point, it is paid for by my benefit plan. That expires this fall when I turn 65, but the drug will then be paid for by the government under special authorization which my doctor has to apply for on my behalf. As health care is handled provincially, that may be different in other parts of Canada. A nurse who is employed by the pharmaceutical company comes to the house to administer the injection even though I live in a rural area. It is the same nurse each time and it is, as you described, an informal, chatty time. I am able to easily arrange to have the injection given anywhere else in Canada by simply making a phone call to the Access Sandostatin office. I have had it done multiple times at the homes of my grown children in Edmonton, Calgary, and Vancouver. When it is given out of province, I have to see a doctor in that province first as a nurse cannot administer medication prescribed by an out of province doctor. That’s definitely a hassle, but it’s doable.
Ronnie, I have self injected from day 1 in the US. The drug comes home from the pharmacy associated with my medical Insurance.
I like the tissue thickness in the butt area so I was taught to pinch abdominal skin and inject sideways. It has worked well fir over two years.
Michael – yes we have a self inject service for Lanreotide in the UK too. I’m slightly confused by your comment as you mentioned “pinch abdominal skin” but a monthly long acting injection for Lanreotide or Octreotide would NOT be in the abdominal skin, these are buttock injections. Would you mind amplifying the comment please?
Hi Caryn, which hospital is your husband having PRRT at please?
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Hi Ronny Just a quick note to say hi as Ian and I didn’t get to Southampton due to traffic issues. Are you speaking at any other events please? Ian going onto PRRT in July (on my birthday)! 🙄 taking a cake to he hospital to celebrate I think. Regards Caryn c
>
Cardiff in October! The Southampton thing was only a 10 minute blurb 😃
Ah Ronnie well reminded I was speaking to a drug rep about this recently andl intended to follow it up. I never got to the reasons why some hospitals/health boards sign up and others don’t. Will let you know how I get on.
Hi Ronnie! My husband started on lanreotide last year in April. I have been giving his injections at home since July last year. I have only really had one or two dicky moments thankfully!! I. Rears a sigh of relief when he tells me it was not a painful jab (left side seems more sore than the right for some reason). It can be done at home quite easily and I am not a nurse – but the ‘jabber’ needs to be confident – and stretching the skin is the most important part! I also like to sing the theme to countdown as I am injecting!
Agree on the confident thing! Every time i hear the Countdown tune, I’ll think of you now 😃😃