Hi Vicki
Welcome, I was diagnosed age 56 in feb, like Dai with light chain myeloma and teeny weeny pp level, but caught very early by blood bank when they rejected me because I was too anaemic for them to take blood. It had been slowly dropping for several years and I thought I was just getting arthritis in my back.
I have just a few days until…[Read more]

Hi carol and eve
My last post seems to be on the revlimid topic, doing things without the glasses is not advised, it took me about 5 weeks to recover from the effect of the revlimid fully
Helen

Hi Carol
We do the ice thing up at our hosp too in fact the advice here is to make your own flavoured cubes and take them with you as they taste better than hospital water and you choose what you prefer, I thought i'd try champagne and White wine!!! Seriously though I've been quite laid back about the sct but having signed the consent form 'no…[Read more]

Hi Jet
Thanks for this, I think this bed thing is vile, I was supposed to have chemo before stem cell mobilisation but because there were no beds I had to wait a week, go on the large dose of gcsf and keep fingers crossed that I produced enough cells, fortunately I did so i' m still on the right time scale and all is to start on15 th, are you…[Read more]

Hi Carol
I'm also in myeloma xi was on revlimid arm, sct in a couple of weeks time
Helen

Hi Carol
I'm just back from sct work up this morning and asked about the revlimid follow up bit on the myeloma xi trial which I too am in, the next phase for me is still over 3 months away, so is this the section you are at? The trial people seem to think that you need a few months to get used to it and it will settle down, I clearly didn't reach…[Read more]

Hi Carol
Not sure if you were speaking to me but I'm answering anyway!!! I have light chain myeloma so the pp level was low and the sflc's were not too high, I've been lucky to be picked up relatively early. They like the levels to drop and plateau not rise again so everyone is going to respond differently i think. I asked what they were hoping…[Read more]

Good luck Jet
I'll be thinking of you over the next few weeks,
Helen

Hi Dai
They build you up and then dash you down, so hard to bear, is it worth speaking to your consultant on Monday?
Helen

Hi Ivan
Glad yesterday went ok.
Re treatment I took a few apricot kernels before they gave me the chemo, then gave them back to my mate, decided to toe the line and follow instructions to the letter as this is best chance.
I took all drugs at exactly the same times every day- as already said, take dex and anticoag in morning cyclophos after…[Read more]

Hi Ivan
Hope you got on ok today, not too shell shocked with all the information thrown at you.
In reply to the energy question, I feel as though I have more energy though I'm only just starting to try and get fitter again since all the induction therapy stopped.
I thought i was slowing down with arthritis or the menopause, hot sweats, joint…[Read more]

Dear Ivan
I was diagnosed in February and also was fairly fit, bit anaemic and tired so the shock was overwhelming, even checked that it was my name on all the sample tubes! I've been at work all through the induction chemo, some good days some bad days and everything in-between, I'm off sick now as i head off for my stem cell transplant next…[Read more]

Hi Helen
Hope today goes alright, fingers crossed for your mum, I'm going away for a few days today before the next hosp visit next week.
Stay strong
Helen

Hi Helen
The drugs are really hard to get used to, I'm glad I only had a few months- I was really responsive to them and my sflc dropped from 750 to 11 at the end of the fourth, the pp level went from 5 to 4 and has been untraceable since, and my anaemia resolved quickly, in fact I'm probably physically better than I have been for about 5 years…[Read more]

Hi Helen
Thank you I'm booked for 15th if there is a bed free, our unit is very busy at the moment.
I have had a very different course to that of your mum by the sound of it, I had an early diagnosis as I was found to be very anaemic with joint pains and have no obvious bone or kidney problems but the treatment is all a bit arduous and we all…[Read more]

Hi Elizabeth
Thanks for your post, I'm much improved, clearly a few days can be as long as a week!!
Helen

Hi Helen
I've been diagnosed for 5 months now and had 4 courses of revlimid on the myeloma xi trial, it has been an emotional nightmare and I have only just found the energy to even look for, let alone contribute to, the forum. But I'm doing ok and on target for sct next month.
I had no rashes with revlimid but suggest go to hospital for…[Read more]

Hi Gill
Thanks, I'm still not back to normal but slow improvement continues, the trouble is that ' a few days ' to recover is hard to judge and i'm clearly impatient!
Helen

Hi Dai
Improving now, headache gone, just the back pain to settle down to pre gcsf levels, still unbelievably tired. SCT going to be mid August.
Thanks for your help
Helen

Thanks, I've had the collection, it finished yesterday, and they got good numbers too, so was worth the gcsf pain over the weekend. I am unable to move today with muscle pain and exhaustion, just hope it goes soon. H