Thank you, I'm the same it took many weeks for the revlimid to wear off, much more than iwas expecting it to. Well I'm off to Kent now and maybe a teeny trip to France for a few bottles to keep the saintly hubby happy
Keep your chin up and hope the waiting to be ill is the worst thing you experience.
Helen

Dear Dai and other sufferers
What you say is all so true, My family read this site and get much from it, apparently more than they get from me! I feel I have known all of you forever and am sharing your lives, becoming better informed about mm and how to cope with it
Sarah you and all the other carers ( I know you hate the word but you do the…[Read more]

Hello Pam
What a sad time for you, no matter what he has or how long, hold his hand, he has and will know he is loved,
Helen

Hi Jet and Carol
It is a great help to have the 2 of you ahead of me.
Helen

Hello Jet
Good to hear you are well, hope this continues. I'm not sitting around either, going away for few days tomorrow . Plenty of fresh air and long walks while I can.
Helen

Hi Min
Mmmm I was hoping it might be the nurses who put the cannula in, they are pretty good. Yes I'm sure Catherine will oblige and as for the beds…….. We must hope for a quiet weekend before we go in, I wonder how many of us are booked
Helen

Hello Min
I thought the beach in the background might be familiar! Yes I spent all Tuesday am at frh and we will be racing for the beds together then!!! We've probably gazed at each other across the waiting rooms!! Those unbelievably long waits!' I've been told I can go home after the first couple of days if well and then to expect to return on…[Read more]

Hi Dai
I like the way you refer to it all as an adventure , it is how I have looked at it, not one I would have taken from choice but an adventure nevertheless and I view each stage now with interest and trepidation but funnily enough not fear. I am in Newcastle and if there is a bed will have high dose melphalan on 15th aug and stem cell rescue…[Read more]

Dear Helen
I think the side effects of the drugs are so many and varied it is really hard to work out which is doing what, I only had them for 4 cycles but they were terrible, my consolation was the lowering sflc each month, I don't know how i' d have reacted if it had not done that.
I still have shakey hands and certain foods still seem to…[Read more]

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]