Dear Maureen,

Thanks very much for your post and it’s great to hear you’re on your way to the sun next month. Have a smashing time!  Can I ask you how old your husband is please?  The rather pessimistic consultant I saw said a SCT would not be good for me (I’m 66 and was in good health), but looking at the details of the SCT and the long stay i…[Read more]

Hello Andrew,

Thanks so much for your post.   And you’re living proof  of long remissions.  Well done fella!

I still can’t understand why the consultant I saw was so pessimistic?  All my blood test results and kidney flow rates are very positive and encouraging, so I’m going to take all the good news and comment from your post, especially the…[Read more]

Hello Karen, and thanks for your post.

Yes, I’m starting to get to grips with MM – and it’s proving to be a “life-changer” to us, in terms of management, treatment and it’s future variability.  I’m going to look at the “confusing journey” section now (haven’t done so far) and may well use the helpline as you suggest.

Many thanks again, and best…[Read more]

Sorry about the two posts – I forgot I wrote the earlier one.

Peter

Hello Sandra,

Sorry to hear about your husband.  I was diagnosed with MM two months ago, and it was a complete shock to me (and my wife).  They only discovered it while I was in hospital with severe food poisoning from eating some dodgy fish in Dorset.  My consultant was convinced that my kidneys were damaged beyond repair, because of the de…[Read more]

Hi Rebecca,

Many thanks for your reply, and the details you enclosed.  I think the one thing that I’m starting to understand (being new to this long journey) – that’s coming through to me loud and clear, is the variability of the disease, and how it, and the treatments affect a particular individual with MM.  So, as you say, while the ‘average m…[Read more]

Hello Tony,

Many thanks for your post – and the encouraging news that it’s not a bleak outlook after the first relapse.  We  (wife and I) were a bit shocked at the end of our meeting with the kidney specialist, but talking to our brilliant oncology nurse (have just comeback from Queen’s Hospital today for chemo), and reading the posts on this w…[Read more]

Thanks so much Annette,

Being at this early stage of MM, and just getting used to the terminology and the disease itself, I must say I get a little confused with what’s going on.  But your post has cheered me up no end – and I’ll convey it to my wife who was a bit “shell-shocked” yesterday.  Thanks again.

Peter

Hello Sandra,

Am very sorry to hear about your husband, but by reading your last post, things are starting to improve (light chains down to 470).  I am very new to MM – just starting my third cycle, and am getting to grips with the terminology and effects.  It can be VERY confusing…  But this site is a great support – there’s nothing quite li…[Read more]

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

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 Qu…[Read more]