Dear Gill,
Thank you so much for letting us know so much about Stephen's journey. We can never understand exactly what you've gone through, but I have a great deal of respect and admiration for you both. I'm so sorry for what you are going through now. How do we keep going when the unthinkable has happened? We are all grappling with that. I…[Read more]

Hi Eve,
Your questions about maintenance make a lot of sense. As Helen and Dai have pointed out, in the UK these questions will be addressed via a trial which is ongoing. I have never understood why trials from other countries – if conducted with a large enough sample of patients – should not be a valid way of advancing our knowledge. Obviously…[Read more]

Dear Gill,
I'm deeply sorry that this is happening: that you are being pushed to the limits of your endurance. If Stephen is no longer lucid then I can only hope that he isn't suffering.
The love that you have always felt for each other does not disappear even if someone's consciousness does. You have been there for him right through this…[Read more]

Dear Gill,
It's devastating news that you've had. Your situation seems almost unendurable, and yet you have to live through it. I hope you can find the strength to say the things that you feel need to be said and that Stephen's suffering will be alleviated in every possible way.
Thinking of you,
Eva

Dear Keith,
Am delighted for you. I think you're right in being concerned about QOL issues and in hoping to reduce the dex. I can't imagine a diet without a grain of sugar! Are there any other interventions that can ameliorate the diabetes? Such as meds or exercise? I also wonder whether any other dietary interventions, other than stopping to…[Read more]

Dear Maxine,
I'm sorry about what you're all going through. As time goes by, you will know more about your sister's illness – about what stage it's at and what treatments have been recommended for her.
I'm not an expert on this, but I imagine that most myeloma treatments are not very compatible with pregnancy. The good news is that she's due to…[Read more]

Dear Tina,
It's difficult to isolate what's causing what, but I think that morphine can create nausea. If your doctor agrees, then you might benefit from an anti-nausea pill. You've probably already been prescribed some such as domperidone etc when you were on chemo.
Hope you will feel stronger now,
Eva

Dear Dai,
I'm so sorry you've been through this. I think that most patients are too overwhelmed to say anything.
Similar things have happened to me in Edinburgh after transplant and at Raigmore( Inverness) after my arm broke. However I did also experience some fine care as well. Sometimes I wonder whether there is confusion about who is…[Read more]

Dear Ange,
I was diagnosed with mm four years ago and I've had a number of treatments. I'd be happy to share my experiences with you, but I don't know what the focus of your interest is. If you'd like to chat with me, you could drop me a line to my email address and I could call you – I have free calls. My email is evayouren@lineone.net

I…[Read more]

Dear DAvid,
Deeply sorry to hear the news.
Good luck with your treatment. Keep us informed.
Eva

Dear Stephen and Gill,
So glad you've persevered. Let us know how you are.
Thinking of you,
Eva

Dear Keith,
No wonder you've felt bad. I hope the blood helps you feel better immediately.
Eva

Dear Jill,
Delighted with the news.
Good luck to your mother – it's wonderful too that you are giving her such support.
Eva

Dear Keith,
Sorry to hear about what you are going through.
Is it possible for your doctor to lower the level of dex?
Eva

Dear Elfriede,
I was diagnosed in 2008. During my induction therapy and for a time after my transplant, I did not not travel far. In fact, after my transplant, I waited for a full three months before I went on a long bus or train trip.
When I was in remission, I travelled to China, Italy and the Netherlands. It turned out that I was already…[Read more]

Dear Dai,
Delighted the treatment was so effective. Hope you and Janet can enjoy the wonderful evenings.
Eva

Dear Keith,
Hang on in there. I'm not just saying this as a mantra, I really mean it in your case.
It sounds as if there has to be better communication between you and your onc. My glucose levels have been veering and I'm now seeing an edocrinologist. Firstly, I'm sure dex can cause high glucose. I understand why your onc would wish to 'stomp'…[Read more]

Dear Wendy,
I'm in London – saw my onc today in hospital and am staying at someone's house, so it's difficult to write.
I just wanted to say that my light chains moved around furiously for about seven or eight months while I was on treatment for my relapse. The treatment was working, but the light chains were going up and down.
Having a…[Read more]

Dear Vicki,
So sorry this has been a disappointment. I believe this is just a glich, and the stem cells will be in the bag soon.
Eva

Dear Dai,
During my last encounter with dex I had the dose spread out over a number of days, with a tapering off for the last two days.
Best,
Eva