At home with Lanreotide

 

The Somatuline ‘reservoir’ forming in the deep subcutaneous tissue

I think after 101 injections (as at 7th August 2018), I think it’s safe to say I’m now ‘at home’ with Lanreotide (Somatuline Autogel – Somatuline Depot elsewhere).  I’m looking forward to celebrating my centenary ‘butt dart’ in a years time!

I was fortunate enough to actually have the injection ‘at home’ via an insurance policy for the first 4 of the years of my treatment.  That was really handy because it was informal, chatty, and I had excellent ‘continuity of service’ with the same nurse administering 80% 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 conveyer 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 very 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 almost definitely be on the list.  Common administration problems with Lanreotide include untrained administrators, fridge problems, incorrect injection site, pinching instead of stretching, plunge speed, painful injections and many others.  All of these issues can be linked to training and continuity.  One thing NET patients like is an expert injection by the same person if at all possible.  It’s also true to say that these issues can cause some anxiety amongst patients leading up to and during the procedure.

side view of Lanreotide with needle cap off but with plunge protector still on

Boom!

I was therefore delighted to be signed up this week for 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 couple of 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.

Now …… I got wind of this service 6 months prior but it took me sometime 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 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.  Royal Bournemouth Hospital is actively promoting the scheme to patients being administered with 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 probably documented all I know but happy to chat more with UK patients about the scheme – you can message me here:  Message Ronny Allan

What about 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:

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 home 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.

3.  Canada.  There is not enough detail on the Ipsen Canada site to say there is a scheme but worth asking.  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

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.

How’s it going so far?

On 17 April 2018, I had my 10th ‘HomeZone+ nurse administered injection and the same nurse for all 10. It’s a first class service  from the UK provider – Healthcare at Home (HAH).   I’m told which day it will arrive and I receive two text messages with timings, the second one is a more precise time allowing me to get on with my life.  The Nurse then makes an appointment to come and administer the injection. This works excellently too.  The Nurse calls me with some notice in order to get the injection out of the fridge ready for administration.  The injection is given very efficiently and my next appointment is made ready for 28 days time.  I also found out that sharps box provision and collection is available through the scheme, another bonus.

So far so good.

You may also appreciated my other blogs on Somatostatin Analogues and Lanreotide (Somatuline):

Lanreotide – it’s calling the shots

Lanreotide vs Octreotide

PoNETry – An Ode to Lanreotide

A video showing how Lanreotide works

Lanreotide trial for Lung NETs (SPINET)

Somatostatin Analogues and Delivery Methods in the Pipeline

Thanks for reading

Ronny

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Author: Ronny Allan

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27 thoughts on “At home with Lanreotide”

  1. 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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  2. 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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    1. 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.

    2. 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

  3. 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

  4. 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.

    1. 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

      1. 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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  5. 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

    1. 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!

  6. 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.

  7. 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.

    1. 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?

  8. 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

    >

  9. 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.

  10. 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!

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