Hi Martin, I hope you don't mind me asking but would love to hear more of how your kidneys have improved over time and what you did to assist this – I am new to myloema and have 15 – 17% kidney fuction after 4 months which the consultant says is all oermanent and won;t improve further so would like any information/strategy/glimmer of hope that…[Read more]

Hi John.
How did your 100 day test results go? hope you had good news and have been celebrating rather than posting?
Fingers crossed
Rebecca

Thanks Alison, No I am not seeing a kidney specialist – i have asked but my consultant says i don't need to as he is in contact with him – I feel my sct is a fait complet with my consultant who sees it as the best way forward due to age (52) and maybe's he's right and its just fear clouding my judgement about it – my kidneys at 240 creatnine and…[Read more]

Thanks for that, comforting to know – at the moment I don't know what to worry over the most kidneys or myeloma! my consultant is very pro SCT and talks as though there is no option or decision to make I will have sct because i am entitled to it due to age.

Thanks for that my creatnine is arouund 200 but the urea is high at 14.1 – so for you the SCT did not further damage kidneys at all? did you have dialysis whilst being SCTd where i am going for SCT they don't have a renal unit so they are going to keep shipping me off for dialysis in the process – am worried when S & D kicks in! CAn you tell me as…[Read more]

Thanks for that, ther has been no mention yet me seeing a kidny specialist but as I am only 16% wonder if I should be following a kidney diet etc to presere what's left? have you had to follow a different diet etc?

Thanks Phil – did the kidneys contine to recover after the 5 courses or was recovery within that – I've been told any recovery is usually within 3 – 4 months only?

Hi Alison
If it helps you to remember me, you did come to my retirement do at the Harvester about 3yrs ago.I retired about a year after that "big move" we all had to bear. Obviously it would be unwise to put my surname on the web but I hope your memory is now jogged.
I gather you're back at work now. How are you in yourself? I do hope you are…[Read more]

Hallo Alison
I was so surprised to see you've had cause to join this group. I'm sure you'll get all the support you need from these super people.
If you're wondering who I am, I used to work with you at that marvellous estabishment in chalfont st peter before I retired.
I'm so much better off than most on here as I only have MGUS so am being…[Read more]

Hallo Everyone
Great news. Its MGUS. My marrow only showed 2-3% plasma cells. So its just 4 monthly monitoring.
Thank you for being there
Susie

Thank you Helen.You described the feelings to a tee. I'm feeling a bit calmer today, it seems to catch me when I'm not expecting it. Keep saying to myself what will be will be. I get my results on Tuesday and my sister is coming with me. She had breast cancer 12 yrs ago so she knows the ropes with this sort of thing.
Thanks again, I'll post…[Read more]

Hi All
Hope you don't mind my rantings but I've only got a few more days till I get my actual diagnosis and I've got the real wobbles. In fact to be honest I'm s**t scared. I'm just hoping with all my strength that it will be MGUS or smoldering. Sorry to be such a wimp but I can't help it. The thought of my life being taken over by drugs and…[Read more]

Hi All
I just wanted to thank you for all your replies.
I had the bone marrow done yesterday and had no problems till I got in car today. The seat seemed to hit the spot and its been really painful since. I have taken some paracetamol, it has taken the edge off. Hope it wont last too long. It feels like i've been kicked in the bum by a rather…[Read more]