Hi Sue,
That sounds like the regime that I was on although for the final two cycles I had bendamustine three out of four weeks. I was not on a clinical trial. I understand what you mean about the dex and I am enjoying getting my own personality and body back for this short period before I embark aqain on whatever chemo my consultant can come up…[Read more]

Hi Sue,

I have just come off bendamustine ( every other week for the first 4 months and then three out of four weeks)plus dex daily for 4 days a week and 100mg thalidomide daily. I found the 24 weeks tough and within each week huge variations in how well/bad I felt due to dex moods and effects of bendamustine but in general not the worst…[Read more]

Hi Sue.

ref bone pain and apologies to you. I am a) Over 50 and b) Just so technically inept and this was supposed to be a reply to your question. I certainly didn't intend to have top billing!

I have had a niggling pain over right ribs for several months. X- rays showed nothing but a ct scan has showed that there are several lytic lesions…[Read more]

I am going to start a combination of Bendamustine, prednisolone and thalidomide next week ( three week's treatment, one week's break for up to six cycles). Has anyone had this combination and how did they get on?

Jo

ps How do I start a new topic on the forum?

Dear John,

That sounds like a relatively attractive treatment. I had several cycles of velcade in 2008 with only minimal side- effects. Unfortunately, the velcade had zero effect on the myeloma so had to be abandoned as a treatment option.

with thanks for your input,

Jo

I posted in late December describing the problem I was having with Revlimid after only a few days of treatment. Unfortunately, I continued to deteriorate and finished up in hospital for 10 days ( not helped by getting' flu whilst there). My consultant has now ruled out Revlimid for me due to the extreme side- effects and I am seeing him next week…[Read more]

Thanks very much for your replies.

This discussion really does show how much individual variation there is in terms of efficacy and side effects we can get from all of these different drugs. I did have some fairly major reactions ( including skin problems) to some of the drugs that I had when I was first diagnosed in 2004 but the problems that…[Read more]

I started Revlimid a week ago and within two days developed a severe allergic skin rash. Despite additional steroids and antihistamines this has got rapidly worse and today I was told to stop the Revlimid for a week so that I can recover. Has anyone else had this problem and how was it dealt with?

Jo Johnstone