Hi to you all

Well done Sally, it does make John and I feel better and hope that he can do something like that in the future once his heart is sorted out.He goes to see the cardiologist on the 8th July at Southampton, we are lucky that not only is Southampton a Net hospital but also one of the top hospitals for heart problems.

Sheila

Hi Sally, well done from me too! That's a large amount of money to raise - how fantastic. Hope you continue to feel well - bet you were surprised to be able to do that in such heat. Any news about your further treatment?

Regards to all
Jenny

Hi Jenny

Yes it was so hot , trust me to do 'Race For Life' on the hotest day of the year.

Went to hospital today and being refered to Royal Marsden, a lady doc (sorry funny name begining with 'L'). She will have chat, study scans and suggest what and when I should do it. I said I was not in a hurry as I am well but my doc feels I should get on her books, so to speak. Hopefully will enjoy summer and think about it later in the year.

Regards
Sally

Hello, just wondered where everyone was, seems ages since I last posted and now one since. Lets hope you are all feeling good and enjoying the lovely summer, however knowing Carcinoid, I can't think we are all well.
I have the final total of 'The Race For Life' that my daughter and I raised which was £1140.
I have felt well over last few weeks, trying to reduce my steroids which is VERY DIFFICULT, because when I try I don't feel very well and get more pain, but I keep trying and am now on 9 reducing to 8 a day soon, which is the least I've been on in years, so watch this space.

Hope we will get some of you back on line soon.

Sally

Hi Sally, It has been quiet on the forum lately. Like you say, it would be nice to think that everyone was well, but that's probably not the case. Still, hopefully everyone has enjoyed the fine weather of recent weeks, as well as the football and tennis. That was a really good sum of money to raise Sally - well done and glad to see that you are still feeling well. I believe steroids are difficult to reduce - one of those things that the body gets used to having I think. At least you have managed to reduced some of them so that is a good sign.

I think Sheila Cawte is in need of some support - her husband John has got to have his heart valves done. She posted just before that silly usershop person took over the forum. Hopefully someone will be able to help her with her questions.

Dave is keeping ok - although not quite as well as in the previous couple of months . His confusion has been worse this last week, but there again today he seems ok again. It seems to vary hour to hour sometimes - I have to admit I find it very difficult sometimes. Still, off to the hospital again on Weds for his next Sando, so things will improve again next week hopefully.

Keep well Sally and hopefully the good weather will return to everyone.
Bye and Regards to all
Jenny

Hi all,
Jenny I didn't realise your husband was becoming confused, is that part of our symptoms or drugs? I'm forgetting words and freaking about it!
It really is so difficult for our nearest ones, the carers, I think sometimes its worse for them than for us. I wish I could lift the weight off my husband, between work and me. We're going on holiday, saying to hell with the money plus health insurance!!!!!!!!!! !!!!!!!!!!!!!!!! Just to do nothing but R&R.

Hope Sheila your husband is okay and that everyone else is coping.

all the best
Maureen

Hi all

Thank you Maureen for your concern for John, we are still waiting for his appointment for two procedures before his heart surgery, I am ringing up tomorrow to see when it might be. He seems to have recovered from his crisis when he had his Embolisation in March, He has to have his Lanreotide injection on Wednesday, he hates this as it really hurts.

Jenny we had a lovely weekend away last week,it certainly helps John, meeting our friends and being in the open air.

Best wishes
Sheila

Hi Sheila, Maureen and everyone.

We've had a dreadful weekend. I had to call an ambulance for Dave in the early hours (2.30am) of Saturday as he fell out of bed having a serious seizure (fit). He used to suffer regular epileptic episodes after having his brain tumour removed, but he has had none for about 10 years. This is the first major one he has ever had and I am still in shock from it all. He is thankfully at home now, a bit battered and bruised but he was oblivious to it all until he woke up in hospital, which I suppose is good from the carcinoid syndrome point of view. I am just so grateful to have him here with me as I thought I was losing him.

By coincidence we go to see his consultant a week on Tuesday when the results of all his tests will be back. We are just hoping it doesn't happen again. He didn't seem himself on Friday evening but insisted he felt ok, little did we know what was going to happen.

Maureen - Dave's confusion is more like that he can't take information in. He asks questions but doesn't understand the answers and then asks several times over. Or he doesn't understand TV programmes and keeps asking about words etc. Quite frustrating for both of us really. He is taking Vitamin B Tablets Strong Compound which do definitely help but some days he is worse than others. It all started at the same time as the symptoms of the then undiagnosed carcinoid, so I think there might be a link. It's all those hormones!! There are articles about it - it's something called Palleagre I think.

Sheila - good to hear from you. Keep the hospital on their toes and hopefully you will get some dates sorted out. Keep in touch.

Must go, it's late. Bye for now.
Regards to all
Jenny

So sorry you and Dave have had such a rotten weekend, I hate to mention it, but is anyone looking into the possible return of the brain tumour, could this account for the confusion, as I have not heard of 'noids' suffering with this.

Glad your both home again - no place like home.

Keep us in touch with Daves progress and consultants results.

Hugs to you both
Sally

Hi Sally
Thank you so much for your kind words.

Fortunately the CT scan they did on Saturday showed no change in the brain so that was good news and means no return of the brain tumour. They are thinking along the lines of the octreotide may be interfering with his epilepsy medication that he takes at a very low dose . Or it could be low sodium and high potassium (due to his blood pressure pills), or the scar tissue in his brain might have changed or it could be the effects of the carcinoid. Or.... it might never happen again! I'm not sure which diagnosis would be the best to have - but a reason would be nice. Dave is much better in himself today and we are keeping things as quiet and restful as possible.

As far as the "confusion" is concerned, I know a couple of people on the forum posted a while ago with similar symptoms - of course everyone is different - but it can be a symptom due to the lack of Vitamin B3 because the NETs gobble up this vitamin (I think I read about it in one of Dr Ramage's papers). But not everyone can tolerate the supplement.

Perhaps our fellow forum friend David might be able to enlighten us - David is so knowledgeable and thank you to David for your recent very informative posts.

Regards to all
Jenny

Jenny/Dave,

It must seem so affair, bad enough to have NET but to add epilepsy. Keep on fighting.

Maureen