I too am about the same stage as you, are you taking the antibiotics? I found they made me very poorly and now doing the inhalation, this too made me poorly but it’s only once a month so time to get over it. I find my energy levels go up and down during the day and each day.  I love to set goals and walking is one of mine, each week I am able to…[Read more]

It’s awful that you have had to put up with such poor care from registrar and locum, you have enough to worry about with the myeloma and the treatment. I too had a problem with registrars who knew nothing about the trial I’m on, I’d also had a series of hospital admissions so got an appt with my consultant outside of main appointments and one of…[Read more]

Hi, what is DT PACE? I’m on the cardamom trial and looking for the research results, on carfilzomib and the usual steroids and chemo, my hair got stronger, nails and skin too. I have also coloured it with a root touch up, it feels thinner but not got clumps coming out as per stem cell transplant. I see some amazing women in treatment,very dolled…[Read more]

Thank you for that Paula. Ended up on the trial as apparently too aggressive and fast to consider ctd and cardamom wouldn’t be available if I chose valkade. It’s been a real roller coaster with infections, pic lines, extra hospital and lots hospital appointments. Rather taken over my life but this month, 2nd, has started without any hitches, tho…[Read more]

I too have only recently been diagnosed and just starting my 2nd round on the cardamom trial. I had no indication other than repeated infections and anaemia, however the initial consultation and treatment was very fast for me, diagnosed mid sept, in treatment after all the tests by beginning October.  I too had a holiday booked and have been…[Read more]