Hi Andy

I do wish you all the very best on your new trial. You deserve it.

Best wishes

susie

Hi there. MGUS doesn’t always become active myeloma, but a few do. It took 3 years for it to happen to me. Most people go many years as MGUS if it progresses at all.

So don’t be worried. You will be monitored regularly for any disease progression.

Best wishes

susie

Hi Jan

Thanks for that. I must have missed it. I’ll have a look. It’s good to know its there.

susie

Hi Jan

Sorry to butt in here, I noticed you said Pomalidomide has now been approved by Nice. I thought they had taken it off the CDF and was only available on a trial. Can you tell me what their recommendations on it are ?

Thanks and best wishes

susie

annlynn

That doesn’t sound too bad. So you’re going on holiday in the middle of your treatment then.
I hope you have a lovely time. Sounds as though the velcade has worked well for you, without too many side effects.

Best Wishes

susie

Thank you so much for your kind words, they really help. I’m sure after a few days I’ll feel more positive, like all of us, I have no option really.

annlynn, How did you get on having the Velcade ? side effects etc.

Best wishes

susie

Hi

I’ve been on Zometa for the last two and a half years. I’ve been trying to persuade my consultant to stop it, but all he’s agreed to is to have it every 8 weeks.

I’ve now got an abscess on a tooth root in my upper jaw. The gum is extremely swollen, very very red, and my dentist is referring me to the hospital to have it removed. I dread that…[Read more]

Hi Stanley, Yes I am well until I hear otherwise – next appointment 1st Feb. I am almost forgetting my exact months of remission but now it’s over 3 years do feel a tad tetchy about how much longer I will have so have decided to really go for it this year in doing new things etc. Perhaps in doing so it may play a small part in keeping at bay – who…[Read more]

Hi Stanley, glad to hear everything appears reassuringly okish – well at least not sinister. MM really is a very interesting study if it wasn’t so pertinent and close to home! It is so complex I fear I would not do well in an exam but hey I am living well with it and that’s suffice! Wow 25 months..time flies scarily so but it’s all a celebration…[Read more]

HI Richard, this all sounds very encouraging and positive so well done to you. It does get easier as time goes on although when diagnosed it seems impossible to imagine. I am glad you are trying new things, the more the merrier, and trust me you will takes bits from each and they will help you through the inevitable down times. As an example of…[Read more]

Hi Pepz, This is one hell of a shock diagnosis and a very complicated cancer – learn all you can if it helps you and so you can pass good snippets etc but do not bombard him with info but be ready if he asks. This is very important as imparting knowledge needs to be at a pace/when your father wants it – so make sure everyone respects this.…[Read more]

I know a lot of people have moved to facebook. I don’t have an FB account and neither do I really want one. It will be such a shame if this forum disappears.

Hi susie, yes I am on health unlocked for kidney issues – don’t use it much and doesn’t have the same feel as this forum – shame if that is the case as i feel it will “dwindle” considerably in participation. Oh well, guess we’re adept at coping with change – albeit reluctantly! Happy New Year x

Hi, I think they’re looking to move this forum to Health Unlocked aren’t they. I had a message from Kyle a while ago, telling me about it and when I told him I’d prefer to stay on this forum, he told me they’ll keep it for the time being and review in 6 months. Hope I’ve got that right.

I’ve had a look at Health Unlocked and don’t particularly…[Read more]

Hi Andy, Great idea. I would also like to throw in the mix that I would like to be able to “follow” members so I am alerted to new posts so I don’t miss their progress and also want to support. Probably a big ask but it would be nice.

Hi Richard, I should have said in my post I am now just over 4 yrs since diagnosis. Regards work I did 2 x 12 hr night shifts and then 6 days off. I never went back to nights as I could not afford to knowingly drag my body down and changed hrs to days and a different shift pattern. I had 6 months off since diagnosed in hospital because :- kidneys…[Read more]

Hi Richard, I was 50 when diagnosed at a critical stage of kidney failure – shock diagnosis etc – had 8 cycles of velcade/dex followed by SCT at xmas just over a year since diagnosis and currently still in remission and drug free. Kidneys took a big hit gfr now 32 but do not hinder my life tho will be problematic with further treatments and…[Read more]

Hi Greg

The only thing my hospital does is, if you’re on the haematology/cancer unit for more than 2 hours, you can pay £3 and get a password and they let you out of the car park.

I must sound awfully mean and I don’t mind paying for the clinic appointment, but my point is with 2 visits for bloods together with the appointment would cost £8. N…[Read more]