peggy replied to the topic holidays and EPO in the forum General 12 years, 3 months ago
But it's hard to please everybody. I want to see/ hear the Bourneville carillon but it's only on a Saturday and that would mean my daughter missing her Riding for the Disabled lesson (she lives for animals) but I mentioned it and she seems to accept that we put ourselves out to get there almost every Sat. so I think that I could swing it…[Read more]
peggy replied to the topic holidays and EPO in the forum General 12 years, 3 months ago
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…[Read more]
peggy started the topic holidays and EPO. in the forum General 12 years, 3 months ago
Hi there, not been on here for a long while… my last post didn't register and I let wasn't up to redoing it… let's hope that I manage this more successfully.
I 'd like to go on holiday this year, last year I was too ill, but I've just been prescribed Aranesp EPO which is to be delivered fortnightly and has to be kept in a fridge. I have to…[Read more]
peggy started the topic allergies cont.. in the forum Side-effects 12 years, 7 months ago
low.Eventually I was sent home but was back a few days later with raised temperature and the runs. Thankfully I was only in for a few days that time but I wasn't prepared to run the risk of going through anything serious again.
I even had to send for my son from Uni to say possible farewell the first time…I overheard the consultant telling my…[Read more]
peggy started the topic Allopurinol allergy. in the forum Side-effects 12 years, 7 months ago
It's been a long time since I've posted so here goes. I'm feeling perky now but I spent over three weeks of the summer holiday in hospital. I came up with a livid rash, just generally felt VERY tired but wouldn't at the time have said that I felt unwell. The rash prompted me to phone the hospital , was advised to take my temperature and found that…[Read more]
peggy replied to the topic Outdoors Paul Lightchains is the word! in the forum Under 50s 12 years, 7 months ago
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.…[Read more]
peggy started the topic Midway through 1st cycle continued. in the forum General 12 years, 9 months ago
by someone sympathetic…
Well, hey ho, I am up for now so that at least is something positive. Hope tomorrow continues as today
Love to you all,
Peggy
peggy started the topic Midway through 1st cycle. in the forum General 12 years, 9 months ago
Was a bit precipitate with statement of no side effects of treatment. Am now suffering/ have suffered from every side effect in the book. Total lethargy,severe cramps, sickness, changes to bowel movements, peripheral neuropathy but most of the time I just sleep. And I am still classed as the carer in the family.
I saw my consultant this…[Read more]
peggy replied to the topic Infection in the forum Side-effects 12 years, 9 months ago
Hi Gill,
My thoughts are with you and Stephen
Best wishes ,
Peggy
peggy replied to the topic Just diagnosed in the forum Newcomers 12 years, 9 months ago
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…[Read more]
peggy replied to the topic Just diagnosed in the forum Newcomers 12 years, 10 months ago
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…[Read more]
peggy replied to the topic Just diagnosed in the forum Newcomers 12 years, 10 months ago
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…[Read more]
peggy started the topic Just diagnosed. in the forum Newcomers 12 years, 10 months ago
Well, I've got the diagnosis now and it all seems to make sense; the undefined aches and pains over the last few years, I'd almost started to believe it was all in my mind. I've got severe kidney impairment, had migraines for years and have started to walk with an odd gait especially when tired. And the fatigue!
Birthday tomorrow and I'll be in…[Read more]
