Carcinoid worry and Rituximab failure make for painful joints and Flares.

[Tricia-P]

I haven't blogged for a while but I do answer a few questions here and there and I like to read all the news.

I had to blog today to get this out of my system....... I'm waiting for the results of a 24hour urine test for carcinoid tumours, this is a fairly rare form of possible cancer that is found in little tumours that form generally in the intestines of your body, it's rare in the way that you can sometimes live with it without knowing until you die. The test looks for a certain hormone and take 3 weeks plus to get results. It's like a noose hanging round my neck with a weight on it, I know that it's not a killer and you can live with it forever but it's that word.

Do you have it or do you know anybody that has it. The reason I'm being tested is I've suffered with hot flushes for the last 3 years I'm post menopause but these flushes are horrendous and by chance I had one when I was having my Rtx infusion which takes place in our Onocology unit. The nurses thought it might have been a reaction to the Rtx and called for the Drs I was given all the precautionary drugs for an allergic reaction, but kept telling them it was 'normal' for me, which was overheard by one of the cancer specialists and hey ho I had to keep a diary for 2 months then they decided to do the 5-HIAA test (hormones in your wee).

Then it seems that The Rituximab is not working I was having my second set of treatments in January 13, I think the steroid injections masked everything until the middle of April when wham bam the brain fog, Fatigay and pain pain, pain started, funny enough no red joints swollen but not too bad but my toes ankles both knees shoulders elbows wrists but not fingers until today, and wowzer they hurt.

I went and had bloods done last Tuesday and for some reason the GP didn't get a copy and we have a shortage of Rheumy staff due to illness and hols, so they missed the results until I emailed yesterday and wow I've got an appt this Friday to see a Rheumy nurse and a Dr if needed, I didn't take the phone call and Hubby didn't think to ask what the blood scores were but I'm thinking they must be high to get an appt so quickly. So what comes after Rtx, Humira worked for me until I had to come off it to have the ops on my spine. When I could go back on it again it didn't work for me hence Rtx. Last year was great on it so what goes wrong why do drugs stop working for you?, Ali that's a pharmy question how are you my friend?

Hello to any of you I met at the Solihull NRAS day I really enjoyed it. If you're wondering who I am I was the one with the naughty runaway stroller, now that's a funny story embarrassing but...........

Lots of gentle hugs Tricia P xx

[sylvi]

Who is the photo of as you don't say? You ar ehaving a hard time of it aren't you,i hope that when you get the results they are not as bad as you fear. We always think the worse don't we when things happen all of a sudden. Looking forward to the runaway stroller story.xxx

[Tricia-P in reply to sylvi]

Hi Sylvi, The lady in the photo was on one of those letters that get sent around this was one where the lady had a letter about bank charges and she felt they were holding her to ransom as the charges were going up more and more as she hadn't the money to pay. So she decided to rob the bank with a plastic gun, so she had the money to pay them it was the USA robbing Peter to pay Paul. Anyhow Iloved the picture and thought we're . all being held to hostage with this disease Lol xx

[sylvi in reply to Tricia-P]

So true Tricia,i find a lot of us would like to work and due to our illness we can't,but we are being hit the hardest and the first people to have a go at. They don't go after the reaaly sacroungers do they.xxx

[LavendarLady]

Hi Tricia quite agree. We are hostages to this wretched disease. Sorry to hear your problems - do hope you get some answers soon and a course of treatment to get rid of these little growths. It is that awful word isn't it beginning with a C. I have had it but mine was breast and had to have a mastectomy. Fine now thank goodness and no longer need regular checks.

I am on Enbrel as I had to come off Humira as came out in a rash and my Rheumy took me off to be on the safe side. Enbrel at the monent is working fine. If it stops, then it is the infusions.

I think we all get used to being on a particular drug and it then ceases to have the same effect as before.

I found when post menopause (although it can last for 20 years apparently! Oh Joy).that the herbal supplement Menopace was very good with the hot flushes and night sweats. However, don't take anything without checking with the Docs first.

Good luck with the results and will be thinking of you. LavendarLady x

[Hidden]

Im very sorry to hear your news Tricia and I HOPE it isnt that, it is so rare you have to tell yourself it cant be you!, thinking of you

Alison x

[sanje48]

So sorry to hear about your C scare. I'm posting this as it may be helpful to you considering how rare carcinoid cancer is and difficult to find info about. MY brother had this and by the time it was (accidentally) discovered it was very advanced and he was told that it was terminal. He was put in touch with a Professor Baum at a specialist clinic at Bad Berka in Germany who is an expert in this field and after three courses of treatment at the clinic he has

been told he has a good possibility of a normal lifespan ( he is 60) as the secondary tumours on his liver are now dead or dying. They have amazing results at the clinic, he has people coming from all over the globe who have been written off as untreatable and is able to help or cure many of them

I hope this is helpful and relieves your anxiety a little.

I too have RA and am hoping to receive anti TNFs.