Hi Tanya your poor dad is having a hard time and of course you as well When myeloma is first mentioned its always a huge shock and it takes a bit of time before all the information starts to make sense, so take it one day at a time and be wary of searching the internet as information is very often out of date This site is brilliant ,if you have…[Read more]

Hi Min I bet that feels great now its more official and the time will fly!! Before long you will be having leisurely lunches and long shopping trips , dont forget spa days too Sorry just teasing Icant imagine you are the sort of person who would enjoy that sort of lifestyle!! You will love being retired though and I bet Peter is looking forward to…[Read more]

Hello Bridget

I am well at the moment get PEP results on the 1st of march so fingers crossed I next go to UCH on thursday 24th Feb when will you be there.I
have a support group meeting this friday I believe we have a speaker from McMillan so should be interesting I will let you know all about it I am so glad your pain is getting a bit better…[Read more]

Dear Gaye of course you are entitled to feel sorry for yourself , you have been going through h**ll lately!! Tomorrow I will be willing your rt department to get you sorted as quickly as possible , all my fingers and toes crossed too Mind you they must have decided you were a lady not to be messed with today if they are sending your meds out by…[Read more]

Hello Kay

good luck with the CDT it really worked for me I also had a rash we diScovered it was the Anti B they put me on ( CIPROFLOXIN)it looked like a german measles rash

Keep Well love jO X:-D

Hi Kay glad to hear treatment is going ok. Poor you gout is very painful isnt it, the last thing you need. I am fairly certain it is dex that makes me feel sore and tender, but it is my first curse of revlimid too. I finished my dex pulse last Thursday and the tenderness was at its worst on Sunday, so the timing is right. I think your description…[Read more]

hELLO Gaye

so sorry you are feeling so unwell at the moment you have every rite to feel sorry for yourself I hope the RT treatment goes well and it will soon help with your pain

Love JO XXX

Hi Jo that image set me off with a fit of the giggles!! Perhaps we could record the dex song ? Then they would have to interview us all on breakfast tv, trouble is none of us would have the patience if it was a dex day !!! Haha Radiotherapy certainly seems to have done the trick for me , the pain does come and go but for only a few hours at a time…[Read more]

Hello Bridget

I did laugh I could imagine Dai conducting us in a chior I would be the one he would tap on the head a say mime it. Dex Dex Dex we should write a song perhaps Dai could, I know what you mean about fat face I am only on a small dose but still have a fat face! hope you feel much better soon have you had any relief from your RT…[Read more]

Hi Debs be interesting to hear what your docs say Have you noticed a need for saltier foods? I realised last night why peanut butter wasnt right , couldnt taste the salt . Have you mentioned the bruising feeling to your doc? I dont think it is that common I mentioned it to my consultant once and she looked at me as if I was nuts!! Just had a…[Read more]

Morning Sharon great news !!Bet you cant wait to get home Take it easy love Bridget x

hi Bridget
Just to give another idea Im starting to think it could be the coproximol….took it again twice test and the horrid taste came back this afternoon. Got appt today to pick up cycle 4 drugs so will ask the question!
Debs x

Good Morning everyone thankyou for your support , it always makes me see the better side of things. I am going to ask why there seems to be a delay in my finishing the dex pulse last week and feeling so rubbish 4 or 5 days later. Debs my money is on dex for the crappy taste thing , it always does it to me!! Pam I really admire how you are so…[Read more]

Oh Bridget,

So sorry you're feeling so rubbish. It can be awful can't it. I have my sister in laws 30th on saturday….evening wear only…and I'm going to look like a hamster faced heffalump!!!

I didn't realise it was a common side effect the feeling of bruising, but I get that every now and again (can't decide whether it's dex, rev or…[Read more]

Hi Gill

I got two out of three pepperpot skull and Dexatude this word should make its way to the oxford dictinary
Love J0 x

Hello Sharon

I am sorry to hear about your spine I hope things get better soon could you please let me know what the nice guide lines are forwarn is for armed

Thank you Jo

Hi Min and Gill the article on steroids which was in the press last week said that steroids deposit body fat in specific areas These are the base of the neck and the tummuy area I know I now have a humpty tumpty tummy now whereas before I had a waist no matter if I was overweight What joy !! love Bridget x

Hi Bridget

I am so sorry to read that you are having such a rough time. The only thing I know about Dex is what I read here – and it seems to be really unpleasant. Your family and friends know the real you, so will understand that it is the "dreaded Dex". You listen to all our rants, so carry on as much as you like.

Hope you start to…[Read more]

Hi Clara how disappointing to hear your dad wasnt given his results, you could do without that sort of mix up I am sure .Sorry but I am not up to speed with AL but I am sure you will get answers from others who do know Most of us with myeloma have weakened bones and it is standard treatment to give monthly infusions of drugs such as Parmidronate…[Read more]