Dear Jean,
Hi – this is Eva. I've written about this recently under another heading but you may not find it….
I've had exactly the same problem as Frank. 'Normal' neutrophils range from 2.0 to 7.0. This is an even more important reading than our level of white cells, as it's meant to be a 'truer' indicator of whether we can mount an immune…[Read more]

Dear Mari,
Do you have any idea what the age cut-off is for a mini-allo?
I thought it might be 50?
I'm asking because I might wish to raise the issue with my consultant. I'd need a donor match as I'm an only child. I'm worried that by the time it's recognised I need an allo I'll be too old. I'm still responding to other treatments. My…[Read more]

Hi everybody,
Maybe there is one area where we can express our choice.
Outcomes of any illness are difficult to predict: even a flu or cold is still a mystery. And yet myeloma is supposed to be an umbrella for a huge number of genetic changes in our plasma cells and environment of our bone marrow. We have barely begun to scratch the surface of…[Read more]

Dear Wendy,
I think that some people do get a pretty good immune system after a transplant. It might take up to a year. I think that might be why certain immunisations are with-held until the 12 month mark as the body can respond to them better then and mount an immune response that might be considered 'worthwhile.'Of course, it can be very…[Read more]

Hi Wendy,
My Prof is the first guy who did an autologous transplant in the UK. He was very keen to give me a second one. I had my first one in Edinbugh. I said 'ok' but let's try some other stuff first. He accepted that, especially as I had to get the myeloma down first anyway.
My first transplant lasted two years in CR then six months in a…[Read more]

Hi Dai,
Eva here. I can see what massive thought you've given to our options. Thank you for that.I really dislike writing emails or letters – I will try to answer this one – but if you'd like to have a chat, I'll have more to say about options. Feel free to email me on evayouren@lineone.net and we can exchange phone numbers if you wish. I can do…[Read more]

So so sorry about what you've gone through and for your immense loss.
Eva

Hi Ian,
Eva here. Also have swollen ankles though not very severely. I've been on Thal for about ten months and it probably has cumulative toxicity. Also have very mild pn.I'm on a small dose of diuretic. I think walking is good and having one's feet up from time to time. Sitting still at the computer with feet down is not supposed to be…[Read more]

Dear Bridget,
Really sorry to hear that. How are you?
Eva

So delighted to hear that,
Eva

Dear Scotty,
Sorry to bother you again, but I haven't received any email from you with a link…
Best,
Eva

Dear Scotty,
Thanks for sending the link, but it hasn't arrived at my email address. It is evayouren@lineone.net

I'm ok at the moment. Was dx in May 2008 and had CDT for about
three months, then an autologous transplant. I was in complete remission before the transplant.

After the transplant my paraproteins went up for three months then…[Read more]

Dear Michelle,
Devastated to hear this – thinking of your and your family,
Eva

Dear Scotty,
Hi, this is Eva. I joinged the under fifty group a couple of years ago and have lost the link. Is it possible to get back in? My email is evayouren@lineone.net

Best,
Eva

Dear Dai,
I must apologise for one thing – the hypothyroidism was from extended use of Thalidomide, not dex. Let's put it down to chemo brain…
Eva

Hi Dai – this is Eva again. I've just remembered some other side effects with dex. I've had hair loss and absolute confirmation that it was the dex because when I stopped being on it I got new hair growth even though I was on other meds. I don't think hair loss happens to everyone.

Another side effect is that muscles atrophy or diminish and…[Read more]

Dear Dai,
I've been on dex for over eight and a half months since a bad relapse. I added weight, especially in the face, stomach area and on the top of my back so I look a bit hunched. I've also experienced the lip tingling, though I've been on Thalidomide at the same time so I'm not sure what's causing what.

I've felt a bit restless on the…[Read more]

Dear Joe,
My mother died of cancer when I was 21. We were very close. I could not imagine life without her. I am now middle aged and have mm myself. I was able to go on and have a fulfilling life eventually. If you'd like to have a chat send me an email and we can talk over the phone. My email is evayouren@lineone.net

Dear Penny,
I also live in the Highlands and I've had a transplant. If you'd like to speak to me please email me on evayouren@lineone.net and we can arrange to phone each other.
I'd be happy to tell you about the experience.
Eva

Dear Ian,
Eva Here. I've read about the 'diminishing benefits'principle many times so there must be some truth in it.
However, I did find a study once which unfortunately I didn't make a note of, which gave stats that were a bit more encouraging. They suggested that more people have diminishing returns, some get the same result, and that there…[Read more]