Hi Jenny,

Have you spoken to a social worker at the hospital,they may be able to liase with the housing team at Camden Council, the ward manager would be able to put you and your dad in touch with them ? Get the ball rolling soon so they can start to plan for his discharge after surgery. Also have you considered looking out of London, we live in…[Read more]

Oh dear, Ive no idea whats happened with the font but hopefully its readable !

Hi Amanda
I understand your frustration with the benefits system, my husband was diagnosed with MM in Dec 2011 but we didn’t start to look into applying for benefits until March the next year. He was turned down for DLA which we applied for with help from the CAB, then again after his SCT. We didn’t appeal the decision at the time as we didn’t…[Read more]

Hi Susan,

I did 4 cycles of CDT before going onto my SCT. The main symptoms I had from CDT was feeling tired and listless. This did include light headedness but I discovered that this was because I was not sleeping enough; as a result I started to take naps when my body told me I needed to and I found that this helped. I also found that my…[Read more]

Hi Glynn,

Thanks for your message but sorry to hear of your recent diagnosis.

Hope my note to Susan above helps but if you want to chat about Myeloma XI I am happy to do so at any time.

I have been to hospital today and I begin my maintenance programme tomorrow. I have been randomised to Revlimid and again enter the unknown, apprehensive…[Read more]

Hi Susan,

The SCT is certainly the elephant in the room but when I look back I always felt that i was in the hands of experts and that I would follow what they were recommending. This was my guiding light.

With regards to the treatment itself, I was apprehensive more about entering the unknown but in hindsight all of the unknowns were…[Read more]

Hi Lisa,

I have had a couple of infections following CTD, in both instances I had already begun to feel unwell – the temperature then confirmed this. My advice would be, as soon as the temperature rises above 38 you should contact your hospital. They will probably give antibiotics to get things back to normal.

With regard to Zometa the…[Read more]

Hi Lesley,

Sorry to hear that you have been diagnosed with MM but you will find this site a great help. I reply specifically because I joined the Myeloma XI trial in May of last year. For some reason I went down the CDT route – I did 4 cycles of 3 weeks each and then went straight into the SC transplant. I am 17 weeks post transplant and about…[Read more]

Hi Tom,

Thanks for your posting regarding the Nature special. I'd be grateful of a copy if you can send one through.

By way of returning the favour I attended the Myeloma Information Day in London in December and have been sent a copy of some of the presentations focusing on future treatments if you would like copies. Likewise if anybody…[Read more]

Hi Maureen,

I had balloon kyphoplasty to T7 & T9 vertebrae, which sounds horrendous but it was keyhole surgery and I was up and running within 48 hours and did not need any further rehabilitation.

Sounds as though Ian's diagnosis was a bit different to mine.

Regards,

Tim

Hello Maureen,

Welcome to the site; although ideally you do not want to be here you will find the people friendly and a great source of support.

I reply simply because I have had a similar experience to your husband and I have managed to come through it. Although at the other end of the country I am of a similar age (54). I was diagnosed in…[Read more]

Hi Tom,
my husband has just had his SCT at UCLH, following x4 PAD cycles, his Consultant is Dr Rabin. He stayed in the `hotel` which is called The Cotton Rooms, and went to the Ambulatory Care Unit in the Macmillan Centre daily for bloods/monitoring etc, he actually didn`t need to go into the isolation ward as he never developed any high…[Read more]

Hi Tom,

I have just finished SCT and am currently 12 weeks post treatment. There is definitely maintenance treatment available in the UK. I am on the Myeloma X1 trial and will be randomised to a maintenance programme of either no medication, Lenalidomide or Lanalidomide and Vorinostat. My understanding is that irrespective of the trial, all…[Read more]

Hello Charlotte,

I am three months post SCT and have just had a full spinal MRI. It seems to be the de facto way of establishing the extent of any damage to the bones and a key part in determining whether existing treatment is working. I would push for an MRI if you can. Good luck & best wishes.

Tim

Hello Maria,

I came across your message today and felt compelled to reply to you as hopefully I can pass on some of my experiences which I hope that you find of benefit.
I am reltively young (under 55)and was diagnosed in May of this year. My diagnosis came to light as I had ongoing back problems which was initially diagnosed as requiring…[Read more]

Hi Ann

This is my first post since joining the site, my husband has just finished 4 cycles of Dex/Velcade/Doxyrubicin as part of the PADIMAC trial and has suffered similar side effects, to the extent that he spent a week end in hospital wth a sub acute bowel obstruction where he needed a naso gastric tube. He is now having a few weeks off…[Read more]