Hi Susannah,

I am so sorry that Michael had to come of Revlimid and you are now having to make this decision. Yes, as you know Patrick took this road which gave him another 9 months of virtually side-effect free life. I do not recall that he was taking thalidomide or dex along with it? Just at it did with Revlimid Patrick's platelets went down…[Read more]

Thanks to everybody for your good wishes. Well, It does seem to be a slower pace than the first SCT but it is moving forward, if slowly. Stephen's appetite has returned with a renewed vigour and he makes DEMANDS (cheeky so and so!) OOOHH I realy fancy shepherds pie/sausage casserole/ spag bol. He is having a bit of a problem swallowing so his food…[Read more]

My heart goes out to you Angelina for all that you are going through. My husband (Stephen) is the mm person in our life.

We had a very lazy morning laying in bed until about 8 am and chatting. I told Stephen about your posting and we came to the same thought.

A memory book is a wonderful idea. I did one for my mother in law when Stephen's…[Read more]

Hi Angelina,

I am practically minded too and I started planning with Patrick before he passed away in May. I also collected all my favourite pictures and put them in an album which is now helping me with the story of our life together. You may not have the physical or mental energy when John is no longer with you therefore in my opinion it is a…[Read more]

I am so sorry to read your post regarding your wife's death. We all take our blood for granted as a nothing and then,when we get into the world of blood problems, we start to realise just what can go wrong.

I do hope you are starting to come to terms with your loss and wish you well

Gill

I wish I had an answer Bridget. Stephen always seems to self medicate (ie takes more than he is prescribed) but it never takes the pain in his back away completely

I do hope that they find a cocktail of drugs to help.

Gill xxx

Gaye,

I too have been thinking about you as I know your journey has been very similar to Patrick's. Please let us know if there is anything at all we can do for you.

Love Tina X

Dear Min,

Please take heart, Patrick had great success from Bendamustine by this I mean it gave him almost a year of virtually side-effect free life. He too had very little success with velcade and revlimid and only eight months remission after his SCT. I do not understand why Bendamustine it is not used more widely.

I can understand how…[Read more]

OK I must have something very wrong here. Stephen has been having Velcade through his PICC line and has had very bad (and I mean bad) diarrhoea. His Specialist asked for a sample but was very surprised and thought it was nothing to do with the velcade. Gill (or confused from Orpington)

Hi Lorraine

Off load all you like. I cannot help with advice on the revlemid as husband Stephen (mm) has not yet been on it, but it looks like it could be on the cards.

Do keep us posted as to how you are doing Gill XXX

I am so sorry that Kevin has gone. I just want you to know that I am thinking of you. Gill xxx

Dear Tina

I am so sorry for your loss. I am sure that it is of little help at the moment but please know that I, like everyone else on this site, am thinking of you.

Gill xxx

PHEW I have not been on for a while and am reading posts from newest backwards. I thought I read that you HAVE got bowel cancer.

So pleased everything is fine love from Gillxx

Hi Sally

Welcome to the site. I am sure that you will get a great deal of information and support from everybody on here. It is my husband who is the mm person, and I have found a great deal of support and information on here. Good luck

Gill

I cannot imagine what you put in your post to cause offense as I have not been on here for a while, but I think it would take a great deal to offend us lot. After all the greatest offense is getting this b**tard disease!!!

I am so glad that Slim seems to be on the mend. Fingers crossed that he keeps on improving.

Gillxx

Oh Susan,

I only just posted the loss of my husband Patrick who died this Friday gone and am so sad to hear of your loss also. I hope you are recieving plenty of support and I am sure you are so proud of Kevin and miss his terribly.
Best Wishes
Tina