Hi Jan

Thanks so much for your reply. I found it somewhat reassuring.

My PP’s were 64 when I first started treatment. I had been monitored for MGUS for about 3 years with a PP of around 30, when suddenly it shot up and I developed excruciating leg pain (sciatic type) from what turned out to be a large sacral plasmacytoma. My bloods have been…[Read more]

Hi Tony and Finnish

That’s interesting. I’m in biochemical relapse, have no symptoms and feel well. My PP’S have risen very slowly since I finished treatment over 2 years ago. They were at 48 some 2 weeks ago and the hospital has been saying all along when they get to 50 they will do imagining and maybe a bone marrow.

I can’t understand them…[Read more]

Hi Michael

Welcome to this site and sorry you’ve had to join us.

I had Revlimid and Dex as part of the Myeloma X1 trial. That was in 2014/15. With the first two cycles I did find it made me feel rather rotten although I’m sure a lot of it was down to anxiety. I knew little about Myeloma and its treatments, or what side effects were common.…[Read more]

Sorry my post was in wrong thread. Apologies.

Hi,

I will be starting Velcade in the coming months. Can anyone tell me whether bloods have to be done before each injection ? Does anyone get their bloods done at their GP surgeries to save a hospital visit.

Thanks and best wishes to all

susie

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]

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, 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 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]

Have just seen your update Andy and was about to reply.

My, you have been through the mill. You’re an inspiration Andy, especially to the newly diagnosed. I remember your help to me at the start of my journey.

I wish you the very best. Keep up the good fight.

Take care xx