[RozParticipant]

Hi Sue

Your husband may not get any other side effects than severe tiredness, but my husband did. It was because of the side effects that he had to get taken off revlimid. My husband has now died and the things I saw too severe so please remember MM is a disease that everyone reacts differently too, so what is good for your husband is not always good for any one else.

Roz

[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

[lorraineyParticipant]

Hi Jo, i've been on Revlimid for just over a year and I came out in a rash on my neck and face soon after I started taking it. I had it for the first three months, it was at its' worst during the first cycle then began to fade and eventually cleared up altogether thankfully. It wasn't itchy but very lumpy and red. My Professeur was concerned about it but said it's quite a common side effect and should clear up, of which it did. I hope it starts to clear up for you soon too.
Lorraine X

[RozParticipant]

Hi

This was just a sml side effect that Michael got, but his rash was bad. It started on his neck then literally went all over his body. Michaels rash itched like mad when water touched it. So it was very hard for him to get washed. He never got this rash until the 2nd cycle, it took over a week to go. It started going when he had the 7 day break. It returned again when his cycle was re-started, but this time only minor and then went after 2-3 days.

Roz

[susannahParticipant]

Hi Jo my when my husband first went on Revlimid he to had a rather lumpy red rash on his face and neck, his consultant gave him a fungal treatment which helped. After a few weeks it did go. He started taking Revlimid agagin just a few weeks ago and the same thing has happened but not as severe.

Regards
Sue

[DebsParticipant]

Just to add my bit, I've been on the Myeloma XI trial for 6 weeks now. Like people have said, I think different drugs affect different people in totally different ways. I haven't had any major side effects from the revlimid, but have been tired and get quite breathless. I also had the rash for a few days, but found that it calmed down with piriton and I haven't had it since.

I am new to treatment, but from what I've read, the effects of revlimid are often (but I'm sure, not always) less than thalidomide, but if you are one of the unlucky ones who has the more severe side effects, it will of course be a horrid drug. Just as will any drug that causes nasty side effects. But then again, the effects of untreated myeloma are pretty awful, so I suppose it is up to the individual to decide which route to take, in conjunction with their consultant.

In terms of what the side effects are, I know they're watching my breathlessness as revlimid can cause DVT…but then again, I think thalidomide can too?

Don't know about trials other than the one I'm on and that is for first time patients but does allow for revlimid as a maintenance treatment post transplant if you get picked by the computer.

Good luck deciding what to do.
Debs x

[MariParticipant]

Hi Deb,

yes I thought I had seen that you were getting revlamid on a trial, maybe our consultant just meant they were not doing any trials at the moment. I hope it all continues to go well for you and you dont suffer too badly with any more side effects. I agree that revlamid does not seem as bad as thalidomide. Steve felt awful on that, depression, anxiety and extreme lethargy, all most unlike him, but they cleared up pretty quickly once the therapy stopped thankfully. You are quite right, we just have to think of the alternatives i.e not getting treatment, and look forward to the benefits that hopefully come about after treatment,

All the best to you and yours for a Happy 2011,
Love Mari xx

[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.

[susannahParticipant]

Hi Joanna Im sorry to hear of your problems with Revlimid.My husband has had his dose reduced from 25mg to 10mg with no steriods and thats a bonus for both of us! and things do seem better. He was on Revlimid for a couple of cycles before it settled down any, apart from the rashes and tiredness he had a couple of nasty infections but fingers crossed he does seem ok at the moment. Like yourself Michael has had 2 SCTs, velcade and Thalidomide so we to are aware options are running out

Take Care
Sue

[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

[meeuuParticipant]

Dear Jo,
My wife, Cecilia, has recently gone back to Valcade at a much lower dose (and without Dex) and is doing fairly well. She has had all the usual treatments, ie SCT, Revlimid etc. Perhaps your consultant might consider previous treatments at a lower dose also.
Regards,
John

[AmelieParticipant]

Celgene is applying for further approval in Europe so Revlimid can be used as maintenance:

http://ir.celgene.com/phoenix.zhtml?c=111960&p=irol-newsArticle&ID=1512323&highlight

[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

[susannahParticipant]

Hi Joanna My husband has been on Revlimid for some time now. The last time we saw his consultant she did discuss options with us as we were concerned Michael is running out of them, like yourself he has had 2SCTs Thalidomide twice and Velcade. she said that there are other options availiable and would discuss them with us as and when. So have a word with your consultant,
we have always had a problem with funding and had to fight for Velcade and Revlimid so dont take no for an answer
Keep fighting
Regards
Sue

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