Octreotide rescue shots

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This topic contains 24 replies, has 7 voices, and was last updated by  lanemole 3 months, 3 weeks ago.

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  • #54321

    lanemole
    Participant

    I had my first rescue injection yesterday. It was really uncomfortable going in and sore for a couple of hours. I had bad wind all evening and during the night. Then diarrhoea during the night, which is unusual for me. Normal flushing this morning. What should I expect? As its called rescue I thought it would work straight away. I’m having sandostatin LAR 30 mg every 3 weeks but still flush a lot and have diarrhoea most days. Not sure about having another one. What do you suggest?

    #54322

    trishd
    Participant

    Hi, who gave the rescue shot as I give my husband 3 x 500 per day and he says it doesnt really hurt, just stings a little sometimes. They should work within half an hour or so. he also has 120mg lanreotide every 14days, he has a problem with gas from time to time.

    #54323

    lanemole
    Participant

    My husband. He gave me the anti clotting injections after surgery ok but this is bigger. I’m having 100s to start to see how I get on. I can have two a day if necessary. Tried another one today, in my leg instead of my stomach. The needle didn’t hurt but the liquid was really uncomfortable going in. Not as bad as my stomach though, the discomfort went off quicker. So far so good. If it lessens the diarrhoea and flushing it will be worth it. Hopefully I was just unlucky yesterday, kept me awake all night.Do you do it quickly or slowly?

    #54324

    trishd
    Participant

    I give them to my husband in the ‘love handle’ department or bum!
    We use quite a fine needle, you can use a slightly bigger one to get the liquid into the syringe then change to a smaller needle.
    I dont pinch his skin, just pop it in in 1 go fairly firmly, dont push in slowley.
    Hope that helps

    regards
    trish

    #54326

    jennyl
    Participant

    Hi, I gave my husband Dave his daily ones before going onto the monthly injections and he found the stomach was the most uncomfortable place, the thigh and arm being much better. Make sure you bring the liquid up to room temperature first otherwise it does hurt more and it’s then straight in, the quicker the better.I was also told to change the needle after drawing up and used a smaller one to actually inject. Hope things improve for you soon.

    Jenny

    #54328

    linkee
    Participant

    Morning Ladies,
    I have them in my stomach and was taught to ”pinch an inch” and put needle in and release steadily. Usually slowly so it all goes in.
    They do sting for several seconds and then reduces and then area is uncomfortable for a while.
    I always feel very tired afterwards but unsure whether that is caused by injection or the actual Carcinoid attack as that is the only time I have them.
    I have Lanreotide 90mg every 21 days and Octreotide rescue shots as necessary).
    Regards
    Lin

    Regards to All
    Lin

    #54332

    lanemole
    Participant

    Thank you for your replies. I take the injection out of the fridge an hour before I have it. It was a bit better in my thigh but the liquid made a bubble like lump near the skin. Perhaps it needs to go n further. The syringes come complete in blister packs, I’m not sure about the size of the needle. It’s definitely smaller than my 3 weekly one. Maybe my bum would be a good place to try. I’m pleased to say I had a better day today and didn’t need one.
    Linkee I get tired really quickly, I put it down to the carcinoid syndrome and possible weakness from the diarrhoea. Any exertion causes the flushing, even walking at my normal speed. What do you mean by carcinoid attack?

    #54334

    linkee
    Participant

    HI Lanemole,
    I dont have Octreotide on a daily basis but I have to carry them at all times in case of a Carcinoid Crisis (or attack) then they are used literally as a rescue shot. I keep them in the fridge but carry one at all times so it is always body temp. The injection has a life span of two weeks out of the fridge and then if unused it has to be disacarded. I dont have the ready prepared ones I have to draw off the solution into a syringe and then administer.
    I will do my best to describe a crisis.Suddenly I will get terrific heat flush from my toes to my head (I am told I go crimson) at the same time I experience terrific heart palpitations thatalmost feel my heart is about to explode! my lungs constrict to the point I cannot get air. Then when its over I feel like a limp rag. They are truly horrendous and very frightening. At its worse the diarrhoea problem was causing me to go to the loo 20 times a day ….that was a nightmare but fortunately the Lanreotide keeps it controlled.
    The constant tiredness is a problem. It is almost like you make a small limited amount of energy per day (sometimes non at all) and once you have used the days supply that is it gone. Leaving you exhausted to the point of muscles aching and brain-fogged. I dont think everyone suffers that as people like Carole (Dabber) and I do but others seem to be able to lead full and active lives even to the point of climbing mountains and fun-runs. So I assume we are all affected differently.
    Iam not quite sure what Surgery you had and when you had it but I know following my bowel surgery I experienced flushing and dreadful night sweats but these lessened once I got stronger.
    Hope things soon get sorted and please keep in touch.
    Lin

    #54338

    lanemole
    Participant

    Thank you Lin, that’s really helpful. I have heard of crisis but I didn’t know what it entailed. Every morning My whole body flushes bright red, my heart pounds and my blood pressure drops making me feel light headed. I sit or lie down until it passes. If I stay still for half an hour I can start to move about again. If it coincides with a sleepless night or bad diarrhoea, I end up sitting about all day. I do a desk job, 3 days a week, sometimes by lunchtime I feel exhausted. Luckily I have a day off in between to get my energy back. What you experience sounds far worse. I assume the rescue jab stops the crisis. I’ve only just been prescribed it, to help me through bad days. I was hoping it would stop the diarrhoea or flushing. I don’t want to take it if I don’t need to.
    I had a carcinoid tumour and two feet of my small intestines removed, 15 months ago, which contributes to the diarrhoea. I’ve also had my gallbladder removed because they thought that was the problem initially. I get anxious about going out in case I’m not near to a toilet. I take between 4 and 8 loperamide everyday to try and control things but nothing stops it. I’ve kept a food diary but can’t see a pattern. I cut out all serotonin foods for weeks but no change. It’s hard to know what to do.
    Keep well
    Elaine

    #54347

    Nikie Jervis
    Keymaster

    Here’s a link re subcutaneous injection – developed as a learning tool for nurses (I think) but still may be of interest : http://www.nottingham.ac.uk/nmp/sonet/rlos/placs/subcutaneous/
    Given at room temperature and at the right angle it shouldn’t hurt or sting. It may be – if you develop a small lump or “blister” the angle is too shallow and its actually gone in between skin layers (intradermally) rather than into the subcutaneous layer – and ouch! that does sting – as does injecting fresh from the fridge.
    For some people injecting into the tummy can give an increase in abdominal / carcinoid symptoms – so it may be best to use thighs or bottom (if you have someone handy to inject you)- others find no difference in injecting tummy or thigh.
    Dosage varies from person to person – some find 50 micrograms is sufficient, others need 200 micrograms is required. If there is no improvement in symptoms, despite good injection technique, it may be worth discussion with team about dosage.
    Nikie

    #54349

    lanemole
    Participant

    Thank you Nikie. From your description the injection was definitely to shallow. Unfortunately I can’t get the link to work. I’ve copied and pasted it and googled it but I get a blank page every time. If I have an injection regularly should it lessen the diarrhoea and flashing or is just to be taken when I’m suffering (which is most mornings)? I’m having the sandostatin injection on Friday. I think I’ll get my husband to come in with me and ask the nurse to show him the angle of injection etc.

    Elaine

    #54351

    Catherine McArdle
    Participant

    Can I be really thick here and ask what is a rescue shot?

    I have the 4 week injection but have not been offered anything else. Should I be asking more questions? Six months ago I did not know I had a NET – you learn quick but I feel I still have so much more to learn and question.

    #54355

    lanemole
    Participant

    Hi Catherine you’re not being thick. I hadn’t heard about it until a few weeks ago. My net nurse suggested I try it because I still get a lot of diarrhoea, flushing and tiredness. She said to give it a try on bad days to see if it helps. I had a rough day yesterday, 8 loperamide and still having diarrhoea. I had a rescue Octreotide injection and it stopped. Perhaps I should’ve had it sooner. I’m still getting used to using it. Stomach more settled today but it’s ached all day. Don’t know if it’s after effects of diarrhoea or the injection. Not normally like this. Linkee gives a good description of how she uses it.
    If you still have symptoms it might be worth you asking about it.

    Elaine

    #54357

    trishd
    Participant

    reading these posts has made me wonder, are you all seeing net specialists and what scans are you having.I ask as my husband (nearly 11 years since diagnosis) had surgery then was put on simple surveillance, a year later started having syndrome, however all his docs said, sunburn, stress, excema, blah blah until he had massive crisis during mri scan and had to be resuscitated 3 times, I searched and searched and fell across carcinoid crisis, went back to see his surgeon, insisted on 5h1aa tests etc and it came back as 1500 over a norm of 40! anyway after years of being messed about, he got an f18 dopa scan and he lit up like a xmas tree. You need to try and find the source of the flushing. don’t be fobbed off with well youre cured or even stable cos the CT, MRI, OCTREOSCAN says so, my husbands many many mets never showed up on those scans. The good news is he is still here 11 years on.It is a daily struggle. he has lanreotide 120 every 14 days as well as 500mg x octreotide x3 times daily. It doesnt really control hius syndrome. he has just finished 11 rounds of Interferon peg for symptom relief which didnt help.One good thing about this disease is that its different for everyone , for many the new injections work and control symptoms. for my husband he seems to have a very stubborn ‘strain’ which responds to none of the available treatments.

    #54359

    dabber
    Participant

    Good morning everyone I have read this thread with interest. A very informative chat. Yes, I suffer lke Lin with this acute fatigue, very much so, and it is excactly as Lin describes, it is just as if you wake up in a morning, with only a certain amount of energy and when it has gone, it’s gone!! Lin, I remember so well, your posting, back in 2012, and your decription was brilliant, I wrote it down, but can’t put my hand on it at the moment, but the foundation did a survey at about the same time, and it appeared that many of us suffer this acute fatigue – sometimes it is even too much of an effort to even bend down and pick something up that you may have dropped. I don’t concern myself anymore about this, I work hard when I feel fine, and when this energy has gone, I sit down, and do not feel guilty. After reading the postings this morning, I was a little concerned, because as I understand, mine is a non-functioning pnet, and it has never been mentioned, or discussed about having a carcanoid crisis, but [sorry a little story now ] I went to have my eyes checked last week, a little sooner than the annual check up, because my eyes have deteriorated very quickly since Christmas, yes, I knew I had cataracts forming, but, however, I was very concerned, when, as being tested, I could not see the top line with one eye!! – apparently my cataracts need doing, one is very bad – the bad news is the waiting is 18 months plus. After much discussion, I am seeing the specialist today, with a view to going privately, I don’t really have much choice – but the reason for saying all this is, it prompted me to ring my hospital, and managed to chat to the oncologist about my concerns having this surgery, as well as the fact that i have no spleen, so concerns about infection – she was brilliant, and put my mind at rest and she was quite happy that I would be fine, as my net was in the pancreas [well the bit that is left!!]
    Not really spoke to you Trish, but, hello! I chat to Sheila regularly, in fact, hope to see her soon, we are having a net natter meeting at the begining of May. She is still having trouble connecting to the internet and is also unable to access this forum, it is good that many of us have contact by phone, Carole.

    • This reply was modified 3 months, 3 weeks ago by  dabber.
    #54361

    dabber
    Participant

    Sorry, just seen a couple more typos, an extra C in exactly and no, it is not 18 months,!! goodness I hope not – it is eight months waiting, still too long, Carole.

    #54362

    dabber
    Participant

    I have found it Lin! hope you don’t mind me sharing it again – this is what you wrote, five years ago, when I first joined the forum, and it helped me, so much so, I wrote it down, and worried no more!!

    “Waking up with a limited amount of energy every day, and when it is used up I feel totally wiped out and drained. Even at it’s best the amount is small, and some days the amount is insignificant. Once the energy has gone, I get skeletal and muscle pain, and the old brain just doesn’t work at all.” These words helped me and I hope they help others, Carole

    #54367

    lanemole
    Participant

    Hi trishd I have over 40 mets on my liver which show up on MRI and apparently they’ve been able to see something on my latest ct scan. I assume this means they’re are growing despite the sandostatin injections. My surgeon will be pleased because he wants them all to grow to more than 1cm so that he can operate. He assures me that he can get them all when they’re big enough. Not keen on more surgery but if it means I can get back to normality and be cancer free I’ll follow instructions and have it done. My blood count was only just over 200 but it had increased last time. My consultant said it could just be a blip so,I’m waiting for results of a repeat test. The more I read about carcinoid crisis the scarier it is.
    Elaine

    #54368

    lanemole
    Participant

    Good to hear you can have your eye surgery dabber, my aunt had it done, she couldn’t believe the difference it made. That is a good description of Lin’s. I feel down when I plan to do something and can’t because I feel too tired or unwell to do anything. I missed my best friends 60th birthday party at the weekend 🙁 I try to be positive But my emotions and fears yo yo. I am so lucky to have an understanding family, my husband has been amazing, he makes it all more bearable.

    Good luck with th surgery.
    Elaine

    #54369

    jennyl
    Participant

    Hi Everyone

    Carole – pleased to see you’re going to see a specialist privately for your eyes. At least if you can get the worst one done I’m sure it will open up a new world for you!

    The fatigue that comes with Nets is difficult to get used to because it never seems to get better. Dave suffers badly at times, even more so on the first few days after his injection. His flushing has never been under control completely but then he can’t have any surgery for his tumours so that doesn’t help. We’re nearing the next consultant appointment so we’re both very anxious at the moment although he has his scan to get through first!
    Testing times as they say!

    Regards to all
    Jenny

    #54374

    Nikie Jervis
    Keymaster

    Hi Elaine – try this – click here. If not email me and I’ll see if I can send you link that way !
    With any of the symptoms it is sometimes useful to keep a diary – just for a couple of weeks – score each symptom but also note things like medications, food and exercise – this can be invaluable – not just for you but also your NET team – as it may identify patterns and or triggers . . .an example is a chap I used to see in clinic – he’d been on the monthly injections for a few years- his diary revealed a worsening of symptoms, no matter what he did or ate for 6-10 days before his monthly injection. We gave him some rescue shots to take when he felt symptoms were at their peak to see if that would help – for the first day or 2 it made the symptoms worse, but then things improved. We then rescheduled his monthly injection to 3weekly – and he didnt require any further rescue shots!
    If you have recently started monthly injections it can take 3-4months before a real improvement may be noticeable – others may get a more immediate benefit (and it does depend on monthly dose!)
    nb A very small percentage do not gain benefit from the injections but it can take 6 months to prove non-response (based on scans, biochemistry AND symptoms).
    Nikie

    #54379

    lanemole
    Participant

    Hi Nikie
    It was my iPad blocking it. I’ve seen it on my PC at work, it’s really helpful thanks, l’ll measure the length of he needle. I’ve been having sandostatin injections for almost a year. Started off every 4 weeks but changed to every 3 weeks about 6 months ago. I always have a bad day after the injection. I’m due for another MRI so we’ll be able to see if there is any growth. I’ve had a few bad weeks, needing more loperamide and rest. I think the flushing has got worse, the slightest exertion starts it off. I feel I should get fitter but it’s difficult with the flushing.
    I have kept a food/symptom diary for several weeks but I couldn’t really see a pattern. I try to be careful about the food I eat, avoiding serotonin foods, difficult when eating out because lots of food contain tomato.
    Is there a recommended list of foods anywhere? I’ve looked it up on line and found sites that talk about amines. Is this something I should be aware of when I’m eating. If I can do more with my diet, I will.

    Elaine

    #54380

    dabber
    Participant

    Hello Elaine,
    Have you got a copy of the new handbook, you can purchase this from the net shop, click on shop at the top. There is quite a lot about diet etc. and on the pages 101 to 103 it covers foods that can trigger carcinoid syndrome. It is a very useful handbook, and the fact that it has a ring binder, you can add your own pages – I have a booklet, I bought from the foundation a few years ago, and it is a ‘food diary’, so a good idea to add this to the handbook as you go along, [it is a terrific booklet anyway, very usual, and covers everything – and I will b able to read it better when I have had my cataracts done, I have great difficulty with this turquoise type!!!! Carole.

    #54387

    Nikie Jervis
    Keymaster

    This is the link to the section Carole has mentioned : https://www.netpatientfoundation.org/wp-content/uploads/NET-Patient-Foundation-Handbook-section-5-Web.pdf
    Yes Elaine – amines can sometimes affect flushing – also for those who also experience headaches/migraines alongside this symptom limiting foodstuffs high in amines can help. They have been linked with certain intolerances also. AMINES come from protein breakdown or fermentation. Large amounts are present in cheese (the mature kind – young/soft cheeses are usually ok), chocolate, wines, beer, yeast extracts and fish products(again this is mainly those preserved rather than lovely fresh oily fish). They are also found in certain fruits and vegetables, e.g. bananas, avocados, tomatoes and broadbeans.
    Nikie

    #54392

    lanemole
    Participant

    Brilliant, thank you Nikie and Carole. I didn’t know there was a handbook. I’ll get one and have a good read and see if there’s anything I’m eating that could be triggering my symptoms. I’ve had migraines for years. I had a lot less for a couple of years before I had the tumour removed but they’re back again!
    I’m not keen on the turquoise print either Carole, especially the text when writing a post before posting. I can always see black on white better.

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