[peggyParticipant]

Thanks Jo and Eve for replying.
#
EPO (erythropoietin) is a hormone which controls the production of red blood cells. This hormone is not getting through to my bone marrow as my kidneys are failing due to the myeloma and I am now anaemic, hence the EPO prescription. I will now have to take this for life. It apparently takes a while for the EPO to take effect and if my anaemia gets any worse, ie falls below 8.00 I will be given a blood transfuion (results on Friday were 8.1 from a previous 8.8). I don't really understand what these results mean but I know that I am always VERY tired and cold and if it gets any worse I am to phone the haemotology department.

I loved camping and it solved the problems we had with taking my daughter away but frankly I think I am too tired to deal with the packing, cooking and putting the tent up now. Also too cold and too achy to go for the walks and the badger watching and star gazing… I am at the stage of sitting down and looking at things … like churches and sculptures… cont

[peggyParticipant]

Hi Paul,

Only just seen this and in a bit of a rush, so briefly. I'm 54, also Light chain, diagnosed some time ago, probably June/July 2011 but also just starting second cycle of RCD on trial. I too had bad reaction to Allopurinol and was hospitalised for more than 3 weeks. So bad that I called up my son from Uni to say possible farewell. Didn't even feel really ill so was prepared for the worst until I saw my special needs daughter and was determined to pull through for her at least until she was nearly ready to be 'launched' into the big wide world.

Well I'm still here and feeling quite ok 3 days into new cycle but taking a bit more care. Tomorrow I'm the carer of my other half who is having some investigations so I'm hoping that will turn out ok otherwise Social Services will have to take over. Not sure how to extend this, so I'll say goodbye now, Peggy

[peggyParticipant]

Hi Gill,

My thoughts are with you and Stephen

Best wishes ,
Peggy

[peggyParticipant]

Hi all,

Thanks Min for the tip about the yoghourt…it helped with the first days load.
Unfortunately I am only permitted to have yoghourt max twice a week so I'm reserving it for those days when I have 60+ tablets..other days I'm back to loads of oats like a horse.

I've also seem to have cracked the self injecting with fragmin : I watched while the nurse did it the first day, tried myself the second but pushed the plunger rather too soon, successful this morning and tomorrow is the last day that the nurse will call before I'm left on my own. Maybe I can have a day or two away after all.

Touching wood I've had no adverse side effects with any of the medications, not even with the dreaded Dex. Peggy

[peggyParticipant]

Hospital today and been randomised to RCD in the trials. I've been informed that the "R" alone costs £40,000 pa ……I didn't know that my value was so high! I'll start the new chemo regime on Sunday so I have the opportunity to take my daughter out on Saturday and then I'll have to be taught how to self inject heparin (or it's equivalent) so that I can still enjoy my time without having to wait for the daily nurses call. What fun. And I didn't realise that I would be sooo excited to be told that I have been allocated Revlamid….one learns fast.

So far I've been ok with the steroids. No adverse effects whatever…just hope it's the same with the RCD. So think of me on Sunday, 50+ tablets to take on that day but thankfully it's only that many on the one day until the next cycle.

[peggyParticipant]

Thanks all for your replies.

Badger- what do you mean by SCT?

Have started on steroids this morning in addition to my usual cocktail. Though I did ask a lot of questions at hospital yesterday I forgot to ask what to do over the weekend if I feel really ill. There's lots of phone numbers for weekdays but what for now? Hopefully I'll be okish but I do have allergic reactions to quite a lot of drugs so I am a bit anxious with reason.
Thankfully I managed to get down the 40 odd tablets more easily than I had expected so that's one thing to be grateful for.

Re support, yes I've got some. are Some friends are coming up trumps, others due to their circumstances can just offer emotional support. Not belittling that in any way but what I need is practical help. Sorry to sound a bit cynical but I've been feeling off colour for a long time, mention the C word and people do offer help but before that there was not much. The value of a diagnosis I suppose. We noticed the same with my daughter: before diagnosis she was just, in one person's eyes, 'a wilful child' whatever that meant. Hope I've not upset anyone by my little aside!

All the best to everyone on here

Peggy

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