8 November 2017 at 3:02 pm #55803
Good afternoon to you all.
I have just had my phone call from the HAH about my next delivery of lanreotide autogel, and they have told me they will not be delivering the lanreotide two weeks before the injection is needed but one week.. just wondering if anyone else has had this news dumped on them without any notice or forewarning?
I had got things sorted so that someone can be at home to receive the delivery, and now all has been changed.
I live in Luton Bedfordshire, so I would love to hear from anyone else that may have been told the same thing about their lanreotide delivery changing.
Chris Jackson9 November 2017 at 1:14 am #55806
Hello Chris, I have my injection delivered to my home, and only recently the Company my hospital use has been changed.
Normally they delivered the injection a week before I was due to have it then last month they said they preferred to bring it a couple of weeks before so that I had it available, but this time, it appears to be back to the one week before. They let me know, by phone and text, and give me a two hour slot, so it has not been a problem, so far, but I can see it could be difficult, as they will not leave it without my, or my husbands signature. The only downside I find, is the packaging, the box is over a foot square, with lots of polystyrene, and cold bags, which we have to dispose of. But, to have it delivered, is wonderful, and I am so grateful for this service, and perhaps it is not easy to find a Company to make these deliveries, I know the original people brought it direct, in a proper refrigerator so I didnt have the packaging to get rid of. Hope that helps, Carole.9 November 2017 at 5:04 pm #55819
Same here, Dave has his delivered around a week before it’s due. Just like Carole, there’s a tremendous amount of packaging to dispose of! We’ve only had it delivered a few times so we’re still getting used to the system. Friday is when we’re virtually always in but last time I was told they couldn’t do a Friday because it had to be kept cold! I think she was a little confused but had it delivered Thursday instead. Hope you can sort things out, a quick phone call to them might mean they can organise a different day for you.
Hope you’re keeping well.
Jenny9 November 2017 at 8:13 pm #55820
Thanks Carole & Jenny for getting in touch about HAH deliveries.
I have the lanreotide delivered to my house as my wife gives me my injection every 28 days.
They told me it would be two weeks before my injection was due to be given that I would receive the lanreotide, which has been the case for the last several months, but then they just changed their mind without warning.. the only reason it was a small issue really, was because like us all, we have other things we have to work around to be at home for the day to take delivery of the lanreotide.. but problem solved now as I will be getting 3 lots of lanreotide at a time from now on (as long as HAH get it right) so all should be smoother from now on fingers crossed.
As far as my treatment goes I am doing pretty good. like a lot of us I guess, it will always be palliative care and not a cure that is ahead, but due to the nature of the beast I hope to be around for a lot more years to come 🙂 But as they say, one day at a time :-))
The only problem I have right now is that I’m suffering with the flu, and yes, it’s real flu and not just man flu as I caught it from my wife.. Lol
Thank once again for getting in touch.
Chris9 November 2017 at 11:30 pm #55821
All your comments have been really helpful as far as I am concerned. Because all my treatment has been private thus far I have wondering about having my injections administered by my GP. I think I will continue with the private route ……10 November 2017 at 12:04 am #55822
A very good idea Catherine because your GP may well refuse anyway! So many people have tried including us and the doctors come back with excuses such as they’re not insured or who’s paying or not got the time. Our practice nurse at the time was more than willing but it was a big no from the GPs.
Hope you’re keeping well.
Chris – sorry to hear that you’ve got the flu. Please look after yourself and hope you soon recover.
Jenny10 November 2017 at 2:37 pm #55831
I’m feeling a tad better today, but I reckon a few more day’s before I’m feeling back to normal, whatever normal is :-))
I will be going to my first NET meeting at the Royal Free at the end of this month on the 28th. Hope to meet up with as many folk as possible for a good natter.
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