Hi – yes, I live in Scotland. We have a flat in Edinburgh but live in the Highlands most of the time. I travel to london for treatment as well as seeing a doc in Inverness.
If you wish to communicate with me, my email is: evayouren@lineone.net
If you write to me I can phone you as I can do free phone calls within the UK.
Best,
Eva

Dear Dai,
Best wishes to you and Janet to have a wonderful festive season.
Thinking of you both,
Eva

Hi – it is a little difficult to answer your question as I do not understand what some people are refusing. Do you mean that they don't want a transplant?
Can you find another word to explain ' blood reap'?
Best,
Eva

Dear Keith,
Sorry to hear about what you've been through.
I agree that sepsis is a very dangerous thing. I almost died of scepticemia when I was twenty-four and had an infection that wasn't addressed fast enough in a hospital.
Hope you will recover better in your home.
Best,
Eva

Hi – wouldn't it partly depend on how much bone damage there is?
I've had some dexa scans with an analysis of degree of ostoepenia, and then with the same test done six months later. This was to determine if my bones were becoming more sturdy. Admittedly, this was done in a private hospital, but it might be possible in NHS…[Read more]

Dear Keith,
I'm so pleased you're feeling ok. I only know a little about all the parameters in a blood test – too low hemoglobin and you run out of puff, platelets too low and you can bruise easily, neutrophils too low and you can catch bugs. The way our bone marrow works gets compromised by all the treatments, and I suspect that even a doctor…[Read more]

Dear Maria,
You are remarkably well placed in some senses of the word, and yet, it is a difficult place to be in. Pilgrim's post summed up many issues admirably.
I was diagnosed when I was a very fit and (apparently) healthy 52 year old. I didn't drink or smoke and ate well, so it was unexpected. I did have a mother who had died of cancer and…[Read more]

Dear Keith,
Thinking of you. Let's know what happens.
Eva

Dear Kes,
I found out I had myeloma four and a half years ago and at a similar age to yourself.
Before diagnosis I was out of breath, a bit tired and had some odd episodes of flu like illnesses which indicated my immune system was not working as well as it should, but in many ways I was brilliantly functional and working full time at a very…[Read more]

Hi Dai,
Have you studied Myeloma Uk clinical trial tracker?
What about PAD? I've already talked about this before, but might your consultant consider Rev plus Biaxin or Clarythromycin which is another name for it? It's a cheap antibiotic which has in some trials apppeared to have lengthened remissions with both Thal and Rev. If you google it,…[Read more]

Dear Dai,
I just wanted to say that I have admired how you have been a source, not just of analysis, but also of encouragement for the members of this forum, even at times when it hasn't suited you. You've expressed generosity and I'm sure integrity as you've displayed characteristics that have probably been central to your identity throughout…[Read more]

Dear Sue,
I'm so sorry about what you are both going through. I'm glad that you will have some support from nurses when Michael comes home. Don't hesitate to ask friends for help- meals, cleaning, whatever….. People may keep away because they don't want to interfere. If you wish to be alone but the stress of the situation makes daily tasks…[Read more]

Hi Keith,
Eva here. I think that only a consultant can make the decsion on what to do about your treatment. However, my reading suggests that there are quite a few patients on less than 25mg of Revlimid and that it still can work at that level for some. I've even heard of doses as low as 5mg. Given the fact that you've been neutropenic perhaps…[Read more]

Hi Dai,
I forgot to mention one thing. When you're on Thal or Rev for a while, it can sometimes create a distortion in thyroid levels. Not all blood tests include TSH readings as one of the parameters, so it might be worth asking about that. I became hypothyroid, possibly as a consequence of being on Thal, and have needed some meds to regulate…[Read more]

Dear Dai,
I'm going to tell you what I might do if I were in your situation – I'm just a couple of steps behind you. I realise that everyone has a different nature and therefore different relationships with procedures and organisations.

I'd ask if there was any option of 'beefing up' the Rev, and I'd try and at least think about this now…[Read more]

Dear Dai,
I'm so sorry about what you've been through. Sometimes we have to make very difficult decisions about how to react when our treatment in sub-optimal. When the failures are systemic ones rather than individual ones, there is even more of a dilemma. And often, we can't tell the difference between the two, because behind each promise that…[Read more]

Dear Jimmy,
My information is based on my reading, not on any negative experiences I've had. I've read various papers and also forums which included patients from the States. However, I think you should ask your haematologist/oncologist whether it is true that certain supplements are not a good idea with Velcade.

The supplements I've read…[Read more]

Dear Tessa,
Congratulations on your fund raising!
Myeloma UK has helped me for sure……
My email is evayouren@lineone.net
Eva

Dear Benz,
Hi – this is Eva. I live in north-east Scotland and I attend Raigmore as well as an oncology centre in London. I've also had treatment in Edinburgh in the past, but not in Aberdeen.
Best,
Eva