[peterlParticipant]

I found this website almost by mistake!  And I’ve been reading many of the posts from MM sufferers (and sometimes their relatives), and the site seems a fantastic source of information and support.  So thank you all…

I’m 66 years old (man) and ‘was’ very healthy – until a couple of months ago when I was diagnosed with MM.  A bit of a shock to say the least.  I’m shortly starting the 3rd cycle of velcade, steroids and thalidomide.  Unfortunately, the MM paraproteins (or ‘squiddly-diddlies’ that my consultant calls them)  has affected my kidneys with a flow rate reduced to 22ml/min (but it is improving).

Apart from the fatigue and odd tremors, the real problem is breathlessness.  I have no history of heart problems, and this is a completely new and very unwelcome effect, and I’ve no real idea whether it’s due to the kidneys, the medication; or more probably a mixture of the two.  My oncology nurse (she’s brilliant) says it should settle down as I get used to the drugs.  I’m due to see the consultant next week, so obviously, it’ll be discussed.

I’d be interested (and very grateful) if anyone else has had a similar experience?

PeterL

[susieParticipant]

Hi Peter and welcome. You will find some very helpful, knowledgeable folk on here. I know when I was at the start of the MM life I found it so helpful and comforting to speak to people going through the same hardship.
I wasn’t having Velcade but was on the Myeloma X1 trial and on Revlimid, Dex,and Cyclophosphamide. I always found the dex made me breathless and my ankles used to swell. It was a horrible feeling but it does wear off.
Where are you being treated ?
Best Wishes
susie

[peterlParticipant]

Thanks so much Susie.  And I did forget to say that my ankles have swelled up too.  The steroids I’m on are dex, so there’s commonality with yourself.  It is a horrible feeling as you say.  Can I ask whether its effects wore off whilst you were undergoing treatment with dex?  Or was it only after the treatment had ceased?  I’m being treated at Queen’s Hospital near Romford – I never actually went in for MM, but for food poisoning that I got through eating fish while holidaying in Dorset.  My kidney creatinine levels  had gone through the  roof, and I’m afraid the rest is history.  Thanks again for the information, I’m grateful.

Peter

 

[annlynnParticipant]

hy peter. sorry you had to join the forum in the first place but you will find lots of usefull bits on it . i like yourself. had cdt which is similare just not the velcade all these treatments are similar for side effects. fatique. shakey feeling. breathlessness i didnt drive while on the treatment because of them. but it gets better i hadd weepy days then manic days wanting to do to much but it does settle and if it gets your proteins down. well worth it. i wentt on to. have sct in august and now in remmision so good luck with it all

[peterlParticipant]

Hello Annlynn,  thanks for your post – and the info.  And yes, I can certainly relate to those 3 things: fatigue, shakes/shivers and breathlessness.  As you say, it’s best not to drive if you don’t feel up to it.  It’s great that you’re in remission – and long may it last Annlynn.  Thanks again, Peter

[Author]

Posts