Dear Eve and Slim
I think you are quite right to push for what Slim has chosen. Each one of us needs an advocate and he has a champion in you. It is very easy, given the incurable nature of myeloma and the complicated path it takes, for us to almost be written off when things become grim. The closer I get to the scarey decision making about the…[Read more]

Dear Ali
A 5 pack of pants- now that’s extravagant! Seriously, I’d drop some pretty big hints, the sooner the better- more chance to get it right!

What can I say, relapse takes a while to get your head round and Velcade was a difficult one to endure. I had 2 Velcade injections per week for 2 weeks then a week off, I also had cyclophosphamide and…[Read more]

Dear Ali
Thanks, I had a fabulous time, I’ve been treated like a proper princess! Tea at the Ritz and all manner of treats. Best of all, I feel well and have actually made it this far. And I’m still at work!
How’s your mum getting on?
Love Helen

Hi Rebecca
Ha ha ha ….well! I didn’t like being 60 I’ve opted to stay 48! Come to think of it I’ve never looked ill! In fact I’m apparently a picture of health ! I was told last week that I looked worse before my diagnosis than now, so who knows…. Steroids all round….
Love Helen

Hi Sara
Not everyone with light chain myeloma has kidney problems. I have it and have no bone or kidney damage and have had more problems with the drug effects than the disease so far.
Helen

Dear Mavis
Thank you, it’s all very difficult isn’t it. I think we are still a long way off individual tailoring of treatment, due to the erratic differences between us all, but we must live in hope.

Hi Andy, you must be back now? Hope you managed to soak up a lot of that lovely Greek sunshine, I think I might have to book another holiday as soon…[Read more]

Hi Andy and Vicki
Thanks, sorry I’ve taken so long to reply, I was waiting to see what happened after the dex…..and today’s appointment.
WELL,!!
I had another blood test the day before the dex started… These results were a bit better than the previous set! So may be a blip! Anyway I’ve had the 4 days dex.
So more bloods today,
NO more…[Read more]

Hi Ali
It is just a year since I started Velcade, similar to your mum. I was ok, and fit, so they hit it hard. However, it is tough and I found it very painful for about half of each cycle, as the treatment went on the pain in my feet worsened so they halved the dose. I now have some residual ache in my feet but have had several painkiller free…[Read more]

Hi Rebecca
I think it is the right thing to distance yourself at times from all to do with myeloma, there is a danger that it becomes all consuming, but we do like to keep tabs on people on here and see how they are doing! So you have to keep popping in now and again. I’m afraid I’m just getting angrier and grumpier about the whole injustice of it…[Read more]