Questions for November net meeting

I was wondering if it would be a good idea to get some advance questions in, for discussion at the November net meeting in St Albans. Cathy Bouvier says its OK; so noids reading this might like to post some questions here, & Cathy will take them along to the meeting.

If we come up with hundreds of questions we might have to figure out how to summarise them as well!

My main question for the speakers would be about carcinoid heart disease (CHD):

"What's the chance of getting CHD in your experience? Are there any sub-set of symptoms (such as frequent flushing despite lanreotide) that you associate with a higher risk of developing CHD?"

David

I would like to know how common Aneamia (low iron and iron store) is. I have spoken to many 'noids' that suffer low iron and know one seems to know why it happens, but it can cause very many problems.

Hi

Good questions already suggested. Relevant to myself, also what are the "normal " CgA levels. Does anyone know?

Also how does episodes of low blood pressure affect someone. Im sure its knocking off my ability to think!!

Just add that I always had low iron levels before I was diagnosed, usually needed treating with tablets

Hi
I'd like to ask whether pins & needles in the hands at night is related to CHD or just poor circulation.

Hi CaroI get pins and needles in my feet and hand at night which keep me awake. I mention it to the doctors but they dont seem to relate it to anything that Ive got. !!!

Maybe thats a good question at the meeting in November

Hi All

re pins and needles in feet and hands I have noticed when this happens and it is definately improved in the middle of monthly injection. I shall keep a close eye on it in future to see if this is what is happening.

Trying to "get on" with life I sometimes find it hard to see these patterns that run through. Keeping a daily diary can be counter productive, only listing aches and pains. Anyone else with these denial tendancies,this can also lead to ignoring stuff that could be sorted out !!!

Good for you Sally, having a good day at the charity shop.

Best wishes Gill

I would like to know if it is ok to have the Flue Injection when I have the 30mg sandostatin every 4 weeks..

I can answer that for you Pat as I have it every year and have sando every 3 weeks 30mg, no side effects for me.
Take care

Pat

I have been having Sandostatin LAR injections for nearly 9 years now and every year I get my flu jab with my Sandostatin and have had no problems.

Roy

Hi Sally and Roy Thank you I will ring the GP and get one done Hope you are both as well as poss Regards Pat

Hi all, site has gone rather quiet, hope all well.

I would love to go to the meeting on 30th Nov but find the travelling rather nerve wracking these days. I dont think that its my husbands driving!!! he is good.

I think its worst when I'm due injection, does anyone else notice this. Is it a question for the meeting? Has adrenalin anything to do with it maybe ?

Interested to hear if there is others with this problem.

Best to all who post

Gill

Hi All,

Gill we would love to see you at the meeting! If you can get to us, you could always travel up with us if you like from here I know it is a long way for you. .

The site has been a bit quiet by the looks of things. I am a bit of a culprit, but it is largely just life busying up with the approach of Christmas. I hope there are lots of people coming on Sunday, we hope to meet you.

Love Sam.

I hope I'll be permitted to post in this section.

Yep...seems to work now.

I would like to know, purely in the absence of any interest from the medical profession locally, whether it is possible to develop a heated area of skin adjacent to the carcinoid. I have an area ( rapidly enlarging) below my lrft collarbone whc=ich becomes very hot and itchy...I have also today "grown " three bumps about the size of a small pea under the skin on that side of my chest....is this a sign of something under the surface or maybe one of the learned people at the meeting can advice how I grow three more on the right side so that it looks like they're meant to be there...a matching set.

Hi All There is not much on this site about the meeting at Harrow School on Sunday the 15th November 2009. If you are going I will see you there Best Regards Pat