Dear Chrissie Im so sorry to hear David is so poorly.I just wanted to send you both a big hugx

Love
Suex

Dear Gina and Linda

I am so sorry to hear about your mum

God Bless
Sue x

Hi Chelle I know just how you feel. I wish it were me with the B….. illness, its just so hard to watch your hubby so poorly. Theres no easy answer as hard as it is dont ever give up hope. When Michael was first diagnosed there were no drug treatments around and when he relapesed after his second SCT Velcade was on trial, but we were told we…[Read more]

Hi Chrissie My name is Sue its Michael my husband who is the MM patient. I know you must feel so helpless watching him suffer, I know I do, but things do get easier. New drugs are always a problem with side effects etc but once the treatment gets underway the side effects become easier to deal with. I know im not the patient but im sure alot would…[Read more]

Hi Gina Im so pleased your mum saw you get married, even if it was at home
Im sure that memory will stay with you for ever

God Bless you all
Sue x

Hi Bridget Pleased to hear your ok. Michaels back at hospital today, and guess what, still no Bendamustine, his plateletts have gone down again, seems to be one of the major side efffects, but the good news is he isnt nutropenic, so back next week to try again, at least I get to go into Nottingham to do a bit of retail therapy

Take Care
Suex

Hi Jo so sorry to hear the beast is back, but there has been alot of positive news on Velcade recently, so good luck

Love
Sue

Hi Bridget Sorry to hear of the rash Michael hasnt had any rashes, but he has had lower leg burning from the knee down, his consultant stopped Thalidomide as she thinks it was aggrevating his PN, and she said that there were no other side effects of this kind reported by anyone taking just Bendamustine

Take Care
Sue x

Hi Stuart Ihave noticed this is happening to me , I have posted a few things over the weekien and they have vanished. When I have posted it gives the option for anyone to edit or delete can you helpat all

Sue

Hi Gill Pleased to hear Stephen has started treatment, Michael was on Revlimid and Dex, he had brilliant response to Revlimid with little or no side effets (total remission) the only down side to Revlimid is that while it is working you stay on it. As for the dex Michael has always had a really bad time with it, but they reduced it and hes not…[Read more]

Hi Eve Its so good to hear good news!

Love to you both
Sue x

Hi Bridget

So pleased you are not having to many side effects from the Bendamustine, since Michael came off Thalidomide he hasnt felt quite as tired. Hes having more problems with the Bendamustine, hospital today no treatment hes nutropenic and his platelets are very low, so back again next Friday (hes having GCSF injections again)Hopefully…[Read more]

Hi Gill and Jo Thanks for the kind words. I agree what you say about sharing things, trouble is im more of a i will do anything to help kind of person, not good with words. So if any of you want your garden doing, house cleaning, dog taking for a walk, shopping then im your man (so to speak)

As for the redundancy, well ive been there over…[Read more]

Hi All Just wanted to thank you all for your support. Bridget dont ever think you are moaning I think youre all such brave people who go through so much

love
Sue x

Hi Tina Just read my post back and it doesnt make any sense, shows you what frame of mind I am in at the moment, it should read, I find it hard to post negative news!
Its a good job I dont know how to put a profile picture on the site, I think the black square box says it all!
Sue

Hi Tina Sorry for not posting for a while, the last few weeks have been quite hard. I have been going to work wondering if there will be a job for me by the end of the day, I work in local government, and everyday people are being made redundant, thing is I wish it were me, and then I could spend more time with Michael. I find it hard not to post…[Read more]

Hi Keith Good to hear from you, and to know things are going well (apart from the Itch)

Best wishes
Suex

Hi Eve and Helen A year on probably the longest year you have ever known,
your lives changed for ever, but hopefully things will get better for you both Dont feel selfish Eve Ive been married to Michael for 30years and hes had MM for 15 of them, how lucky he has been people say, thats not what I say,its robbed Michael of his life, well both of…[Read more]

Hi Another long day at the hospital,but not such a bad one. All Michaels bloods were very good so they went ahead with a lower dose Bendamustine and lower dose Thalidomide. We also had a long chat with the trial team,there are couple of trails on at the moment one is Pomalidomide, derivative from Revlimid, the other one a derivative from…[Read more]

PS Michael has always found Dex to be a nightmare, but it seems to help with
the fatigue xx