Dear Dia

sorry you are still feeling under the weather I had hoped you would be clear now I was speaking to a lady at my support group about revlimid she has been on it for four years the side effect she used to get an upset tummy she was always on the Loo her consultant gave he a drug similiar to immodium and this has solved the problem hope…[Read more]

Hi Keith
this sounds like good news as soon as you are off DEX the sugars will level out how are you getting on with the insulin did you know once the sugar levels are down and stay down you can come off insulin the diabetic team are always keen for you to stay on it but you will find one or two tablets will do i came off for ages until they…[Read more]

hello Jacquie

S0 Sorry you have had to join this forum the diagnosis must have been such a shock for you which I dont think anyone truly gets over
the tingling in his hands can happen to a lot of people when having the chemo is he on Dex if so that is what cause the sleeplessness its a very common side effect if it gets too bad he must tell…[Read more]

Dear David
so sorry to hear your news you sound a strong person so i am sure you will come out the other side
love jo x

HI Scott
so sorry to hear you have relapsed already that a bit of a blow I have been reading about bendamustine i think you are lucky to be on a trial they have had really good results in America so it all sounds hopeful fingers crossed for you dont let it interupt your golf try and keep well
love jo x

Hi Ali
welcome to the site sorry you have had to join it must have been a terrible blow to you both this site is wonderful for help and advice and as for the DEX we have invented a new word here for it DEXITUDE I think most people find this drug hard to deal with but at least it usually has the desired effect on the beast called Myeloma good…[Read more]

Thank you Ann Tom Alison Scott and Helen
for your replys it sounds quite easy so hopefully I will get on with it
I go to clinic every month so they will not need to blood check me it will done on each clinic visit

Love Jo x

Hi Keith
sorry you are feeling so unwell, When I was first diagnosed i was already a type 11 diabetic but very well controlled only two small tablets a day as soon as dex kicked in it was insulin for me as it shot the sugars though the roof coming of of dex and a sugar high feels like the worst thing going but the insulin did help control it a…[Read more]

hi Ann
thanks for the reply they gave me a demo and it all looked straight forward it seems it can only be delivered to the house i dont know if it is expensive or not i hope it works better for me than keep having transfusions
love jo

Good luck Tom

we know you are a star any way even if you dont get on it
Big hugs Jo x

Hello Elfriede
I have travelled a bit since being diagnosed in Jan 2009 I do not have bone damage but my kidneys are only about 15% We have been to Jersey Ibiza
grand Caneria and Skiathos I always get doctors permission to travel and full health insurance from MIA travel and take some anti B's with me I am always careful while on holiday we have…[Read more]

Hi Nicola,

Definitely do the skydive….I did one about 18 years ago (!) and absolutely LOVED it! I would do it again, but I'm not sure anyone would sponsor me now as they know I can do it. I didn't stop smiling from the minute I jumped until about an hour after I'd hit the floor (standing 🙂 )

Go for it!

Debs x

Hi Judd,
I don't live in London, but in High Wycombe and have family and friends in London.
I would definitely recommend the Under 50 that Scotty and Phil run, but I'd stay on here too…they both have lots to offer!
Not everything is inevitable so try to keep positive – though I think that is harder when you are first diagnosed, it becomes…[Read more]

Hi Charlie,

I think everyone has pretty much covered things and I even wondered about not replying! But I thought I would say good luck with the Myeloma XI trial and tell you how well it has worked for me.
I got randomised to revlimid and had 4 cycles of that which brought my pp levels from 50 down to 28 – then I plateau'd. I was gutted. I…[Read more]

Good luck with it Nicola!!!

I know how hard it is to organise these things so well done to you for doing it and I hope that you raise loads and have a great time at the same time.

Debs x

Dear Gill,

I am really sorry that you are reaching this difficult time for you and Stephen. Like Tina has said, I hope that you are able to make the most of every minute with him (and that the short temper isn't too horrendous).

Thinking of you
Debs xx

Good luck ANdy….really hope you get some answers and a good plan for you.

Will keep an eye out on fb for how it goes!

x

Chris, that is amazing news and like the others say, thank you so much for sharing your great story.
I don't think any of us find it easy to think that we have 20 years ahead of us….I try to be positive, but at the back of my mind is that it is very unlikely. But stories like yours are so important for us to hear so that we start to REALLY…[Read more]