Thank you Brian, I was thinking I should say yes. I was on an insurance comparison site and as soon as I answered that question they said they couldn’t provide me with any quotes so I guess I will try the companies direct.

Nettie

Hi
Just a quick question regarding travel insurance – when faced with the question “have you been given a ‘terminal prognosis’ how do you answer? I was given a terminal prognosis of 5 years when I was first diagnosed and that was over 11 years ago.
Nettie

Hi
Just a quick question regarding travel insurance – when faced with the question “have you been given a ‘terminal prognosis’ how you you answer? I was given a terminal prognosis of 5 years when I was first diagnosed and that was over 11 years ago.
Nettie

Hi Jill
This is an interesting question as I have been on Revlimid + Dex since August last year and it has the opposite effect on me!
I started on 25mg of Revlimid for 21 days with 7 days rest + 40mg Dex on days 1 to 4 of each cycle. I am now on 15mg Revlimid for 21 days and 20mg of Dex for days 1 to 4 of each cycle. I have never taken…[Read more]

Hi David

Happy New Year to you!

I suffered with really bad leg cramps at night when I started on Rev + Dex. I was prescribed quinine tablets but they caused severe headaches so I stopped taking them. I do drink a lot of tonic water but I don't like too much salt in my food (usually buy plain crisps with the 'little blue bag'!).

The…[Read more]

Hi
I have been through two SCTs and would recommend you going for the second one. As you may have realised, this disease is very individual, everyones experience is different.
My first SCT was in 2005 and I achieved a 'good partial' remission until 2009. Fortunately they were able to harvest sufficient cells to freeze enough for the second…[Read more]

Hello Marlene
I went on the Myeloma X Trial in 2009 when I relapsed the first time following my first SCT in 2005. I tolerated the PAD chemo very well and as I already had enough stem cells frozen from the first SCT did not need to have them harvested again which can sometimes be a problem if you have already had one SCT.
Although I was told…[Read more]

Hi David

I have a very similar history of urinary tract infections being the first indication of Myeloma. When I was first diagnosed it was because of these recurring infections that my GP heard the alarm bells and sent me for tests.
Each time I have relapsed the first sign has been a urine infection and I have had two this time so was not…[Read more]

Hi All

Same question as before – has anyone heard from Dai? did he manage to walk his daughter up the aisle?

If you are looking into the forum Dai, I hope you are getting on ok and putting up your best fight against this awful disease – we miss you!

Nettie xx

Thank you all for your comments. I shall stay away from our local pool but hope to get back into the water if the sea is warm enough next summer! I agree that the Dex factor makes it very difficult to know when there is an infection on the way especially as I do not feel particularly well at any time now I am on the Revlimid!!
Nettie

Hello Dai
I am so sorry to hear you have been through so much lately. Like you, I was totally devastated when we lost dear Bridget and did not visit the forum for quite a while. When I did return the first post I read was to hear that Stephen was also gone.
Now that I have relapsed I do visit more often and today your news has also greatly…[Read more]

HI Penny
Your post is very reassuring. I am about to start cycle 3 and I am still getting just about all the side effects – especially the cramp!!! I had never had cramp in my hands before, really weird!:-/
I have tried quinine but they give me bad headaches and no one has ever suggested calcium tablets. I will ask my haematologist for some…[Read more]

Hi Tom
The L'Oreal oil would give your head an 'Extraordinary' shine!!!!!! 😀
Nettie

Hi Jen
Thanks for this tip, I have bought some L'Oreal Extraordinary Oil and it is great. I am also on Revlamid and Dex and my hair has suffered but it is beginning to look much better already. The oil smells devine too!
Nettie

Hi
Have you tried the Evolife products that are designed especially for people with cancer? They sell a product called Evocapil Shampoo which may be worth a try. The Evonail is excellent for brittle nails but I have not used the shampoo yet but as I am also having similar problems with my hair I will order some and let you know how I get on…[Read more]

Hi
Although I live much further north, in Dunnet Thurso, I was sent to ARI for my second SCT. No complaints at all, the staff were fantastic and the food wasn't bad either! I was able to take my laptop in with me and they even provided me with a Wii Sport to keep me active. The level of cleanliness and hygiene was excellent and the housekeeping…[Read more]

Dear Siobhan
I do not visit this forum very often now, I have difficultly coming to terms with losing 'cyber' friends, although we never meet this is a close community. Bridget was special, she always had the right words and understanding for everyone who needed reassurance in their battle with this b****y* disease . Your mum and I relapsed at…[Read more]

Dearest Bridget, you were a comfort and an inspiration to us all even through all the pain you endured. My thoughts and prayers are with your family at such a sad time, you will be greatly missed by so many. Rest in peace my friend. Nettie x

Hi Bridget
I haven't looked in on the forum for a while but just been reading this thread and I am devastated to hear you are going through such a tough time.
I want to add my very best wishes to the long list from your 'cyber' friends and hope and pray you will regain your appetite and start to feel a bit better soon.
You are such a a great…[Read more]