My dear Bridget,

I am so pleased to see you posting again. I know you have been having a difficult time of late and you have been in my thoughts a very great deal. I hope you get some relief soon and you can regain your strength and return to some normality. I wish I could send you some strength but in the meantime I am just sending you lots of…[Read more]

So sorry to hear ths news, this explains your FB status.

My thoughts are with her family and friends at this sad time

Mari

very good news indeed, Dai. Thank you for keeping your eyes open and keeping us informed. I hope you are feeling well and the Rev and Dex, is suiting and working for you. Perhaps you will be one of the first to benefit from 'Kyprolis'.

love and best wishes,

Mari xx

Dear Eve and Slim,

I am so sorry to hear of your sad loss, desparately sad. My thoughts are with you, your daughter and your families at this time,

Much love

Mari xx

Hi Ann

My husband has just finished 5 cycles of Velcade with dexamethasone. He finds he suffers from dreadful bloating. His tummy swells up to a huge size and is very uncomfortable. He gets a nasty taste in his motuh and that can affect his appetite but he generally finds that he gains weight when he is on steroids. He did when he was taking…[Read more]

Well I never, it is a small world, we live in the Culverden area just behind the hospital but we spend a fair amount of time in Bournemouth as my daughter is studying nursing down there. It's a beautiful area and we love it, perfect for the odd weekend away!

Please do add me on Facebook, I searched for you but in vain. You will see some other…[Read more]

Hello Ron,

I dont have MM my husband Stephen does. I am afraid i cannot answer your query, although someone else on the forum might. I am sure someone knowledgable will post soon. Alternatively you could give Ellen a call on the help line. She is always very helpful and will explain things very clearly for you.

Best wishes to you and your…[Read more]

My word Eliz it is a small world, we have been here for about 25 years now, we moved here soon after we got married and both our children were born here. Where are you now?

Mari x

Hi Carole,

I too use facebook, mostly for keeping in touch with my children. After Tom mentioned that Bridget was using FB more than here I added a few people from the forum so i could send good wishes to Bridget. Please add me if you would like, I am Mari Mason and i live in Tunbridge Wells,

Mari x

Dear Dai,

Your words have moved me to tears. I identify completely with what you say, losing that unconditional love that I feel from Steve is unimaginable and my love goes out to everyone who has suffered this loss, and like many of us, is contemplating that loss at some time in the future.

Maybe we should not dwell on this too much, I dont…[Read more]

Thank you Ellen, thats helpful, hopefully sub cut velcade will be licenced soon so that everyone can benefit from it.

I notice one of our contributors in Ireland has been having Velcade regualrly for about a year. Does this kind of maintenance treatment get used in the UK, it sounds like a good idea. I am beginning to get a feeling for the…[Read more]

Hi Eve,

Steve got about four and a half million stem cells from his harvest which they put back all in one go, so he does not have any in reserve for a second auto graft. In addition because his remission only lasted a year i dont think they will consider it good enough for a second auto so maybe we are clutching at straws asking them to…[Read more]

Hi Sarah,

I know what you mean, after Steve's diagnosis i think we both had a bit of a meltdown. His consultant arranged for us to see special oncology counsellors based at our local hospital. We both had different needs at the time, but as a carer trying to come to terms with everything I found it so very helpful. I think when things are tough…[Read more]

Hi Phil,

Sorry to hear about your diagnosis but welcome to the site where I know you will find a lot of supportive and helpful people. My husband sufffers from myeloma and he was seeing a physio when he was diagnosed and when she realised what the problem was she no longer wanted to treat him. The skeleton can become very fragile with this…[Read more]

Hi Eva,

I dont know about the age cut off for an allo transplant or any sort. We would like to find this out. Steve is 55 but considers himself to be very fit and he coped very well with his first SCT even though he only got about a year's remission from it. He is hoping this will be in his favour despite his age. He has two brothers and one…[Read more]

Dear Mavis,

I am sorry to hear you have been have such a bad time lately. I am afraid i have only just seen your post. You sound so positive despite your problems and I am sure your doctors will get things back onto an even keel for you as soon as possible,

Easter has come and gone now but i do hope you had a happy and peaceful time and you…[Read more]

Hi Jean,

sorry to hear Frank is having concerns with his blood results. White blood cells and more specifically neutrophils are the cells that fight infection. These levels are the ones most closely watched after a Stem cell transplant. Frank's medical team will be concerned because his neutrophil levels are beginning to look rather low. Look…[Read more]

Hi Jill,

Sorry I have only just seen your post. My husband Stephen is just starting his 5th cycle of sub cut velcade. He has been having two injections a week, Tuesday and Friday and dexamethasone on the day of the injection and the day after. He has had very little in the way of side effects from the velcade but does notice some from the dex.…[Read more]

Goah sorry folks, did not mean that to be such a long post

M x