[JoannaParticipant]

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 with for me.

Jo

[JoannaParticipant]

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 chemo that I have had and I didn't need any blood, platelets or hospital in- patient admissions. However, sad to say, it hasn't done the blasted job. Paraproteins did drop a bit but they started to rise even before the last treatment so there is now talk of intermittent melphalan or pomailomide or something else that I have never heard of. I hope that your story involves less hassle with side effects and more success with response. Jo

[JoannaParticipant]

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 causing the pain so Zometa has been added to the drug cocktail. My point is that to rule in/ out any bony damage you need a CT scan as well as or instead of x rays because a CT scan will pick up very tiny signs of problems whereas an x ray will only show damage if there is more than 20% of the bone affected.
On the plus side I was told that I should notice reduced to zero bone pain within days of having the bisphophonates and since the damage is minor I can still ride my horse so quite a good day down at the old cancer ward.

Jo

[JoannaParticipant]

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?

[JoannaParticipant]

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

[JoannaParticipant]

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 to discuss my options. I have now had all of the standard NHS myeloma treatments including 2 SCT's and velcade. Has anyone had any experience of the newest drugs, what are they, how well tolerated are they and and how are they funded?

Jo

[JoannaParticipant]

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 I developed this week after just a few days of Revlimid beat most of them. I have had two sct's, velcade, thalidomide and various other treatments with all of the usual major and minor hassles but nothing like this. I will spare you the details but the skin reaction and complete pole-axing I have experienced have been fairly horrendous and continues despite now being off the revlimid. I am seeing the consultant next week when, hopefully, things will have calmed down.It will be interesting to see what he suggests next. Maybe a lower dose of revlimid with huge quantities of those lovely steroids? I am very keen to give revlimid every chance because I am running out of options now and it can buy me some more time but I have been so ill from it this week that I am very concerned it may not be possible for me to have it.

[JoannaParticipant]

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

[Author]

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