Hi vicki

Recent years fatigue has played a major part in my daily life.  It has taken time to accept and adapt to the changes.  Mind you I think getting older has a part to play too lol

Hi alan

a little belated to say thank you for your posting.  It’s great news that the Carfilzomib is working so well for you. Have you been taking any other drugs with it? What is your protocol? Did you get any side affects?

ive been on it since end of last year combo Iv methlyprd, thalidomide, it’s holding my disease but flc are still high…[Read more]

Hi alan

a little belated to say thank you for your posting.  It’s great news that the Carfilzomib is working so well for you

Hi Maureen,

Good luck to Ian.

best wishes
Karen
xx

ps,

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.

My…[Read more]

I was diagnosed with smouldering myeloma may2014 I had pains in legs arms and ribs doctor told me it was not myeloma related  had Mir scan and full body X-ray no bone damage found  I then asked for a second opinion and was sent for a pet scan on February 10th 2015 found lesions in pelvis spine and ribs start treatment tue10 March on myelomax1 t…[Read more]

Hi Mavis,

Thanks for your best wishes and reminding me about my toolbox! 😉

Hope you are okay xx
Take care
Love

Karen

ps,

sorry Megan, only just seen your second reply.

That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.

Thanks for replying and best wishes
karen xx

Hi Megan and Vicki,

Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.

Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very…[Read more]

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this…[Read more]

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November checked up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by…[Read more]

Hi Karen, Tony and Jeffery

many thanks for sharing your experiences with me.

Karen, to clarify I am unable to access clinical trials unless I want to stop receiving private care services at the Marsden  as they don’t allow patients  to alternate between the 2.

So for example I am currently able to access Carfilzomide through private ins and t…[Read more]

Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for…[Read more]

Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for…[Read more]

Hi Rebecca

Your post was really inspirational to read. Thank you. I am totally In tune with your comments.

However, Whilst I’ve read all the self help books, mindfulness, counselling etc. to get me to the emotional state you mention. as soon as I get a “blip” with my results/need to change treatment. All what I’ve learnt over the years goes…[Read more]

Hi Simon

I totally support the advice Ellen has given you. The myeloma UK helpline incl Ellen have been fantastic in supporting me since my diagnosis Many years ago.

I feel the uncertainty of living with mm is the most difficult for me..Over the years I have gained strength by seeing a clinical psychologist, counselling (using a technique called…[Read more]

Hi Jeffery

The way you’ve explained Leics Hosp, The Marsden Sutton runs exactly the same, including running behind time !!!

What about access to clinical trials it that only available if you are a NHS patient?

Best wishes

Dawn