Carcinoid Syndrome

Hi all,
David and Gill you do sub cuts. I've just been given some but don't know really when to take them; originally they were incase of a crisis now it's take when need. I've done it twice but don't know if I'm doing it too gingerly as it's B!!!!! sore. My question is mainly when should I do it and what symptoms would I be having?
Gill it's the hospital that prescribed them.

Thanks all
Maureen

Hi Maureen

If you ever find out, let me know! I've asked consultants the same thing a few times, but although they seem to answer the question at the time, two days later I'm still not sure - doubtless you've experienced similar.

Sometimes I feel OK or even good & then its simple - no need for sub-cut rescue injections. And sometimes I feel so bad (heavily flushed and very weak) there's also no question - time for a sub-cut rescue shot.

Sometimes I'm a bit red and feel a bit lousy but if I'm at home and just reading or such, I just ignore it and don't bother with sub-cut - this can go on for hours with me paying it no attention, or the noidiness can just clear itself on its own. But when I'm like this I usually shoot up (=take sub-cut) if I've got to go out, or have visitors or have to do something more active than washing up. If this comes on when I'm already out, I usually find somewhere quiet to shoot up.

I've used many a supermarket toilet for injections but if at all possible I prefer sitting in the car. This works if you're wearing a shirt (or top) & trousers - easy to inject discreetly near the belly button, but I don't know how you'd go on wearing a dress - whip it up & inject in the top of the thigh? Watch out for parking inspectors & young lads wanting to wash the car!!

And sometimes I've taken a rescue shot just as a precaution before doing something more active - like canoeing (even though Pam was also in the boat to do most of the paddling, it would be most awkward to get noidy and weak miles from anywhere in the middle of a river).

The injections do sting - I've never managed to stick the needle right in all at once - but its only for a couple of seconds as the needle goes in. I've found it hurts quite a bit less in the fleshy part of the outer thigh at the top - though this means dropping your trousers which isn't always convenient. I've also tried injecting into the calf muscle - the medicine works fine but this really hurts and always bleeds as well. Love handles are OK, but seem to hurt a bit more than near the belly button. But its nothing like as bad as stubbing your toe or getting scratched by a bramble, just a bit awkward finding a bit of exposed flesh when you're away from home.

Welcome to the pincushion club!

Thanks so much David, at leas its a point of reference and so impressive that you canoe!

I've got the needle right in but havent pushed down at the same time - too cowardly to go again but if you feel it really works then deep breath!!!!!

Maureen

Hi Maureen,

Im much the same as David, and sometimes I annoy my husband because I try to save one for later. Know what I mean!

I do inject into my tummy, and whilst its not nice I just go for it! Sometimes the fliud stings a lot and sometimes I dont feel it.

David sometimes I feel as weak as a kitten, do you find that it helps with that symptom? Walking through treacle I call it.

Best wishes Gill

Hi Gill,
Sometimes its really hard to climb a flight of stairs, and sometimes a 5 mile walk in the hills (a bit slow) is no problem. And the weak spells don't always come with flushing - I think that sub-cut. injections only help a bit at such times. So its very important to 'catch the moment' and get things done during the good bits - can be awkward if you need to go shopping, feel OK, but its 9 at night and they're all closed, though!

bye for now

I really think the weakness and fatigue is all part and parcel of Carcinoid. I just have LAR30 three weekly and really dont feel I need Sub-Cut injections. I dont feel like that just when I have flushed, it can be anytime. I often wake up in the morning and know I am going to struggle for the day. I sometimes feel if I don't sit down I will fall down. This doesn't happen just when I'm getting near an injection, so think we have just got to face it that Carcinoid will play us up just when it wants to.

im soglad of the contact with this forum as it just puts things into persective. Even though it means others suffer the same as least I dont feel so alone and misunderstood.

As written above I can have all of those symptoms in one day sometimes changing quickly.

I sometimes wonder if its like that for others without the carcinoid syndrome in the general population. However I do see my peer group coping better than I do and do my best to cover it up. Anyone else doing that???

Regard to all

Gill

Yes Gill I really really do.

I want to be like everyone else, I want to be 'normal', and sometimes I do nearly feel it, then things go pear shaped and I end up so tired and weary.

I never plan a full day outing because I often just can't keep going.

Like you I often ask people my age 'what they have been up to', just to see if they are feeling like me.

Sad isn't it, but obviously normal for syndrome 'noids'.

Take care

Me also, whats worse is I'm now avoiding people and staying in a lot more. I just find meeting people etc too exerting, even my beloved garden is going beyond my care.
I have to set aside a day to do something then 2 days at least for recovery; I'm hoping thats part of the ytrium treatment. Tomorrow for example I have to go into our nearby town to the surgery for my bloods to be done then on to pick up bits for the holiday and I'm just hoping I wake up feeling okay, be able to get up early enough that I can go in and home prior to lunch, so I can eat then have a kip.
As my beloved man says, better that I'm here than not.

Maureen

Hi All
Not written for a while but just thought I should say the same really as you
Tiredness,fatigue or whatever you want to call it can come on any time in my experience and after you've tried to fight it,you just have to let it run its course.
I find the flushing is significantly reduced since my Ytrium treatment but we fight on and take every day as it comes!!!
Alan