Hi Ian,
Sorry about the mini-allo. I'm sure it's a real possibility that the Velcade will do well again. Let us know how you're doing.
Best,
Eva

Hi David,
In Scotland, the rules are that Revlimid is available after the second relapse. However, if someone couldn't tolerate Velcade, then I guess that the doc would try to organise special provision. Maintenance Rev is not yet covered by the MHS.
What's so odd is that it is claimed that we haven't had time to do enough studies or for the…[Read more]

Dear Jean,
This is going to sound ridiculous, but it depends on what Frank means when he says that 'aliens have taken over his body.' Not everyone is comfortable with discussing every nuance of their responses to a drug regimen. Some people even find it difficult to admitting to having ongoing pain. Once you factor nausea, fatigue, dizziness, hot…[Read more]

Dear Andy,
I'm sorry about the stress you must be going through. I have read about cases in which someone has failed a transplant but has then gone on to respond well to other treatments. I didn't know that when I had my transplant and it made me worry too much about the efficacy of the procedure. Of course, it's disappointing because there is…[Read more]

Hi Eve,
I spoke to Sue yesterday. She'd phoned my place the day before when I was out and told my husband that her platelets had increased by four all on their own! We were delighted with that and saw it as evidence of engraftment gathering pace.
Sue is at home and still feeling very exhausted and experiencing some nausea. I think she's very…[Read more]

Hi – I've been on CDT in the past, and had problems with dex withdrawal. It's because the adrenal gland closes down and needs to start working again.
My onc suggested that I could taper the dex off more gradually – in other words the last day's dose could be divided over a couple or even three days to make the landing a bit gentler.
Another…[Read more]

Dear Dai,
Thank you, that's exactly what we were looking for! I've put a bit of muscle into researching this issue on the Net, and haven't found anything half as appropriate. I haven't spoken to Sue for a couple of days so I don't know how she is, but I believe that she might have be taken to and fro from the hospital and home, and that would be…[Read more]

Dear Michelle,
Thinking of you at this time,
Eva

Dear Gail,
I'm not familiar with Howard's treatment history. Could his restlessness at night be due to steroids? Might his confusion be caused by pain-killers? Is it time for him to use a sleeping pill to get a good night's rest?
What do his doctors think?
Eva

I hope the transplant will go as smoothly as possible….
Very best,
Eva

Dear Mari,
First of all, best of luck to both you and Steven.
I have a question for you as I am possibly in a similar situation to Steve. I will have to decide whether to consider going for another transplant, or trying to stick with some novel agents first. I'm assuming that it might not be worth going for another transplant now, as I wouldn't…[Read more]

Dear Tina,
You will be energised when you are back on the dex. However, as you go off it, it will take a while for your adrenal gland to start working and so you might experience a 'low.'
You are likely to feel hungry when on the dex and some people have trouble falling asleep. The dex does help with bone pain and it makes most treatments more…[Read more]

Deeply deeply sorry,
Eva

Dear Tina,
I think that looking back on it, I wasn't told enough about what dex withdrawal can do to you. I was afraid when I felt very sluggish after I went off dex each time. Because my onc had seemed to imply that really I might have no symptoms or side effects from CDT, I thought something was terribly wrong with me when I felt bad. I've now…[Read more]

Dear Sally,
Hi – this is Eva. I was a similar age to you when diagnosed. I've also relapsed and it was a shock at first, especially as I had over 70% plasma cells in the bone marrow and my arm broke. It was also more difficult to monitor my disease as I stopped secreting much paraprotein, so I could have a very low reading, and yet be seriously…[Read more]

Hi- this is Eva. I had very serious diarrhea after my transplant – to such an extent that I came home wearing a nappy. I was on Loperamide Hydrochloride 2mg capsules several times a day. I think that in time my system recovered enough to be able to fight the side effects. I found eating difficult and of course, had to follow a neutropenic diet. To…[Read more]

Hi – this is Eva. I don't go on Facebook but please send Bridget my love.

Dear Mavis,
Thinking of you.
Warmest wishes,
Eva