Hi Dai,
Eva here. I really understand what you're going through.
I find emails much more exhausting than speaking to someone. Any chance we could have a chat?
I've got a phone package that enables free UK calls at all times. If this is a possibilty for you, then please email me on evayouren@lineone.net

Best,
Eva

Dear Tina,
I have no idea what is 'normal', but when I was on CDT I fell over twice due to extreme dizziness – in fact it was so bad that I thought I had perhaps been unconscious for a split second.
I am now only on Thal and haven't had any serious episodes of vertigo.
Best,
Eva

Dear Amelie,
In the UK, I was not allowed to have Thalidomide maintenance after my transplant, or any kind of maintenance. This does not mean that maintenance is a bad idea. The prohibition could be due to a number of reasons and could be revoked in time. There are studies suggesting that maintenance certainly increases the length of time before…[Read more]

Dear Amelie,
Hi – this is Eva from Scotland. I haven't used Thalidomide as maintenance, but I've had it after relapse as a treatment, together with dex. I've been on it for a year. Many patients get peripheral neuropathy( nerve damage), while on Thal. I've had tingling in my fingers which has moved to my toes. About a month ago, my feet felt…[Read more]

Dear Dai,
Just wanted to say that my light chains yo-yoed for a few months after my relapse when I was being treated with Thal and Dex. The variations were even greater than yours. My consultant said not to worry. Eventually my light chains settled down. I've been on treatment for a year now since relapse and don't know what will happen next. I'm…[Read more]

Dear Cinzia,
I'd be delighted to write about my treatment options, and about Melbourne, but do you think it would be ok if I wrote to an email address?
Best,
Eva
PS My email is evayouren@lineone.net

Dear Karen,
Have any of your doctors raised the possibility of myeloma? It's often a very difficult illness to diagnose. What might be significant is not just whether the IgA immunoglobulin is raised, but whether the others are suppressed( IgG and IgM). A PET scan is a good idea as it might pick up lesions in your bones if you have any. However,…[Read more]

Hi Cinzia,
This is Eva from Scotland. I have plain myeloma but I'm writing to you because I have spent a huge portion of my life in Melbourne. I've often wondered what treatment would have been like if I'd stayed in the country of my birth. In Scotland I think we can get Velcade at relapse. I have heard of someone in the UK get Velcade for…[Read more]

Dear Tina,
The problem with stairs had diminished a lot even after being off treatment for just ten days. The bloating from dex – well, my face lost the rounded look after two months off it. However, even five months later, I'm still a bit over weight and a bit bloated. I'm on Thalidomide and since I add about four to five pounds a day( which I…[Read more]

Dear Dai,
So sorry to hear you're going through this. I hope you've got a good book to read…. Let us know what happens.

It's always difficult to know when to report to hospital! When I was on my induction chemo I got temperatures over 38 a number of times. I went to the local surgery and I could tell they felt it was too big a…[Read more]

Dear Etta,
The injections for mobilisation can not only cause pain but also flu-like symptoms. The actual harvesting doesn't seem to have many side-effects. Sometimes if the procedure creates a shortage of calcium then there can be a slight tingling in the lips. Staff at the hospital then can offer a calcium pill. The harvesting can be a bit…[Read more]

Hi Mavis,
Delighted about your results. I think the withdrawal might be referring to going off dex so fast. The body gets used to being on dex even if it doesn't like it….. So I've heard you have to lower the dose of dex gradually or it could create problems.
Best,
Eba

Am delighted Tom. Hope you both have a wonderful time,
Eva

Dear Jean,
Maybe my memory is playing tricks on me, but I think that Fluconazole is something a doctor can prescribe for oral ingestion that might reduce thrush. There are also topical remedies, creams that can be applied.
Eva

Dear Keith,
Let us know how it's going. And now that your holiday is over, remember to do things each day that are an expression of who you are, even if you can't get around much.
I used to run when I was younger. I'm on Thal but not on Dex at the moment and I've set myself the task of walking a certain distance every day. It's been very good…[Read more]

Hi Onlyme,
I'm so sorry you're going through this. I know that the love and support you're showing your mother will help her. Sometimes words fail us and there is only our presence and what it signifies.
Eva

Dear Wendy,
Hi – this is Eva. Am cooking a meal at 23.18 which is a bit mad but there you go. So this will be short. You can't stop ruffles and keep curls in my opinion. But – you can experiment with a band or with a banana clip. Both of these have worked wonders for me at different stages of my hair growth after transplant. Some people look…[Read more]

Dear Siobhan,
Will be thinking of you, your family, and Bridget, on that day.
She was a wonderful person and most of us didn't get a chance to fully appreciate all the things she was.
I'm sure that some of her special qualities will live on in future generations.
Eva

Bridget was warm and caring and selfless. We will miss her.
Eva

Dear Keith,
I've returned to an earlier treatment. I began CDT for induction in May 2008 like most patients at the time. I then had a transplant( autologous) near the end of 2008. After relapsing sometime between two and two and a half years after transplant, I went back on Thal and Dex without the Cyclophosphamide. It's been a long hard road…[Read more]