Hi Bridget – yes I did but I have to get into it. I am still pining for Wallander and The Killing and the female detective seems to have a permanent look on her face that leaves me desperately worried about her. I loved Lund in The Killing so I will have to stay with this one.

I noticed myeloma was mentioned in Waking the Dead but not very…[Read more]

Dear Ian – I had partial remission first time round which lasted 18 months. I was told I would get half the time for the second which happened.I know of only 1 person who had remission from his second SCT which lasted years longer than his first, but from which he has since relapsed. Definitely an exception to the rule.

It seems the info you…[Read more]

Dear Dai – I am so sorry that the bugger has come back and I well understand the feelings you both have right now. I know how I felt after my first remission and was devastated. You didn't move home for nothing and that fighting spirit will come back to you once you get the new treatment regime. I wish you good luck as you come to terms with…[Read more]

Dear Jean – this is why so many people do not get diagnosed soon enough because it can feel muscular when it is bone pain and GPs are not always aware of MM pain. I can only say from my bone pain experience is for Frank to take this seriously because it has all the hall marks of MM pain. He sounds afraid and I suspect a bit in denial. It's hard…[Read more]

Thanks for all your replies. I was with friends yesterday and we just couldn't stop laughing. I remember her introducing me to a student saying this wasn't a normal doctor/patient relationship. It was totally patient led! Before diagnosis I had never called any health professional by their first name but the department is very relaxed and first…[Read more]

Dear Friends – 4 weeks since having RT and still no relief from back pain. I am almost convinced it will not happen and beginning to despair. Help!

I eventually started my third cycle on pomalidomide this week in the evening at around 9pm but slept around to 9.15am. Is there a good time in the evening to take the tablets to get optimum…[Read more]

At last my month's supply of pomalidomide arrived on Friday evening round 8pm delivered by a rather lovely young man so I can now start cycle 3 tomorrow evening. At last. All that it takes to get our medication but at least it is here!

Love to you all. Gaye xx

Hello Pamela – thanks for your information and I am so glad your bone pain is now under control. Tramadol has long been ruled out as it contradindicates with my anti-depressant drugs. You win some you lose some! Thank you anyway Pamela.

Love, Gaye xx

Thank you for all of your lovely and positive replies and I shall digest them. It's not helped by the fact that I am sill waiting for the polmalidomide to be delivered to the hospital before it can be sent on to me. I have already missed one week of treatment and am not keen to miss a second one. Hopefully today.

Regarding pain relief I got…[Read more]

Dear Nigel – I will be starting my 3rd cycle next week having acquired it under 'special circumstances' . I would say be interested but not too interested at this stage as it still has to go through its third stage clinical trial, get its European licence and then no doubt go through the NICE torture before it hopefully will become generally…[Read more]

Dear Kath – As far as I know there are two of us on this board who are having pomalidomide – mine acquired from the drugs company under special circumstances. It is not part of a 3rd stage clinical trial which I believe is due to start in various hospitals around Easter. Your doctor should be able to find out where but it may not necessarily be…[Read more]

Dear David – I didn't get complete remission on my first transplant = it was quoted as 'traceable' but it was enough to give me 18 months remission and live an almost normal life. So, don't go there until they tell you. I know it is really hard this rollercoaster of an unwanted companion but you are a fighter and much loved and respected on this…[Read more]

On my first clinical trial with velcade in 2005 it seemed to be the standard of giving it twice a week but a lot of water has flown down the river since then and they now have a much better idea of side affects globally to show now that once a week delivers the same result without the some of the nastier side effects. I understand that a "son of…[Read more]

Dear Jet = when it first hit me with thalidomide I fell into more or less complete comatose state and your description of it just sounds about right if not downright creepy! I actually remember thinking the next morning that I had slept in that position the whole night not moving once. It's happening again with pomalidomide? The laugh is having…[Read more]

Debs – when you first started this thread I said that I took my pomalidomide in the morning and everything was fine. Well on Saturday night I slept from 10pm to 10am and that was half my day gone. I then had a sleep in the afternoon and early to bed in the evening. I think it's fair to say I haven't quite got the balance right! So my doc has…[Read more]

Now here's a suggestion to keep the bra thread 'uplifted' so to speak. My cleaning lady Debbie has just suggested we all wear sports bras (although where you stand with this one David I am not sure). Slightly concerned Min that we will be able to identify newly retired ladies if the boobs have gone south much quicker than normal. I could have…[Read more]

Hello Tina – Thanks for the update of Patrick. Yes I too have had a return of the night cramps since Pomalidomide but so far not as bad as Patricks. I do wish him well Tina.

Good luck Debs with your Revlimid – will be thinking of you.

Love, Gaye xx