Dear Bridget & Tom

Thanks for your lovely replies. Bridget, I have started using a hot water bottle for my back. I know it doesn't treat the bones but it does make it more comfortablr for a while. I hope your RT is going well.

Tom, I have looked at your local hospice and am so glad you are supporting it in such a practical way. Fair…[Read more]

First day of pomalidomide didn't exactly go off with a bang. There I was having breakfast with a pile of pills and the 20 dex staring at me. Everything was fine until I tried the dex and began a heaving fit. Battling to keep the b*****s down only succeeded in making it worse and a quick dash to the bathroom realised my worst fears. As they…[Read more]

Oh no. I can feel a resurrection of the greenhouse, wine making and cucumbers only this time with a band in it ………!

Gaye x

Dear Min & Phil

Firstly Phil – I am so sorry that you have relapsed. You seemed to be doing so well and now it has reared its ugly head again. I imagine they are preparing you for a second SCT using velcade. Good luck Phil and please keep us informed. Now it's you and Keith.

Min – yes I feel I do have the T shirt having gone through…[Read more]

Hi all,

Just to confirm these aren't emails that have originated from Myeloma UK.

It seems that those who have registered with myelomaforums are getting this email and it may be worth making sure your anti-virus software is on and up-to-date… just in case.

Kind regards
Andy (Myeloma UK)

Hello Sue – thank you for your good wishes. I hope to start treatment tomorrow and I think Patrick will do so in a few weeks. Pomalidomide is the latest of the 'lidomide' drugs starting with thalidomide, lenalidomide (revlimid) and now pomalidomide. I do not know too much about it but I think it is orally taken along with dex like the other…[Read more]

Well done Shirley and I am so glad you are safely back home. I wish you a good and hopefully speedy recovery. Your sister is great but then you already knew that!
Take care, Gaye xx

Dear Bridget – really glad you are getting your RT next week. Brilliant and I hope that pain soon responds to the therapy. You are right about pain being so draining. I actually felt the tears welling up today as I couldn't find a comfortable place and then I got an MRI appointment for 27 January at my local hospital. If they get a…[Read more]

Dai- what can I say to those lovely words – simply thank you.
Love, Gaye x

Hello Keith – Oh you old smoothy Geordie with all your lovely compliments. How can a girl resist them! And then that Luton Minx who masquerades as a ciggy-smoking mother whale just waltzes in between us, without any by your leave. I mean Keith what on earth is this world coming to – tsk, tsk!

My experience with velcade and platelets has been…[Read more]

Hi Michelle – sounds like your Mum is doing well with Revlimid so let's hope she continues for a long time with it. I was interested that Mum has been recommended an iv bone strengthener. I am going for my first one today but it is called pamidronate or something similar! Let's hope it reduces the pain for both of us! I really wish her well.…[Read more]

Dear Tina – thanks so much for your post. I am sorry that Patrick has had a relapse from Bendamustine and now he too is going on Pomaldomide. It seems we will both be working with it and I hope it brings good things for us. It's strange to look back to my diagnosis in 2004 and realise that I was on clinical trials for both Velcade and Revlimid…[Read more]

Dear Keith – I have been following your posts and really am sorry you have relapsed. The b****r always manages to catch up on us however long it takes. So you will be on velcade and dex. Keep an eye on the likely peripheral neuropathy. After my first treatment with Velcade of 4 cycles I had no neuropathy but on my second course of Velcade it…[Read more]

Now stop this girls – worrying about where Wills has got to. He's getting married in the Spring so no wonder you can't find him – he is in the arms of another. Put this wanton lusting away and tell Wills to sod off back to Katie. Winter is for gorging and putting on the blubber – Spring is for prancing around in the daisies, sylph-like along…[Read more]

Hello Sean – Get on to MacMillan as soon as you can and get all the advice you need. As for the Blue Badge I applied for one and got it very quickly with the help of Macmillan. For a long time I didn't use it because I was still mobile enough but I am so glad that I have it now. Also I have been registered as disabled for some time and receive…[Read more]

Thanks David and Bridget. I will keep you up to date. David, Pomalidomide is a derivative of Revlimid (Lenalidomide) and is taken orally along with dex. Although it is in use in America it has still to receive its licence in Europe but I think third stage trials are going on soon so hopefully it will be available in the not too distant future.…[Read more]

Dear Keith – yes I have experienced that before and am now. My main pain was in my lower back and now it is in the left ribs. Also my back just aches most of the time. Apart from that I am fine ……………….!

I'm down to have some RT wich I imagine you will too Keith. Oh happy days!

Good luck with your tests and hope you have a…[Read more]

Dear Jayne – I too am a patient at Barts and it's likely that we have been at the same clinics but not known it! They have a very good day unit which will certainly be open tomorrow morning as well as a myeloma nurse specialist who you can contact. Failing that go to your consultant's secretary and request an earlier appointment. I have had…[Read more]

Dear Jayne – you are very welcome to this website and although I am a patient and not a carer, you will find invaluable advice from those who know all those feelings you described. I think one of the best things you can do initially is to contact Macmillan and find out about financial assistance (and other services they can offer) – it can be a…[Read more]