Hi Karen

I can well understand you rush out of consulting room. It comes as such a total shock. I have carried on as normal over these last 2 years, understanding that very few MGUS proceed on to become active Myeloma, so haven’t worried. But now i am beginning to do just that. It’s like sitting on a time bomb isn’t it.

Keep well and I hope you…[Read more]

Hello Karen

I read your story with much interest. Would you mind telling me what reading your paraprotein was that put you into Smouldering. I have MGUS and my last bloods showed a PP of 36 but my consultant has only increased my check ups to 3 monthly from 4.

I wish you the best and hope all goes well for you.

Susie

Hi there Clover, sounds like you’re dad is at the “harvesting” stage to collect his stem cells prior to the SCT. The chemo given for this stage is generally cyclosphomide and this chemo drug is known for making you sick/nauseous and a common side effect is loss of appetite – so don’t worry. The hospital should have given him some anti sickness…[Read more]

Thanks Izzie, but trust me it’s a constant fight to be positive and nnot get drawn into a black hole when you have a teenage daughter to think of. My positivity is up when I feel I live my old normal life which is why I am a little obsessed with pushing myself on the exercise front as that was my normality. When I posted how I’d got m y fitness…[Read more]

Hi Izzie, sounds like you’re doing really well (in myelomaworld wellness scale of course!). I think now you’re at that tricky “tummy” stage once that subsides – mine took a few days but got easier- you’ll be well on the upside of it – that’s how it was for me. From going in to being on the upside say 14 – 15 days so you’re nearly there, finishing…[Read more]

Thanks for that Mike – is the BP/oedema considered to be an effect of poor kidneys as I have read how poor kidneys can affect heart, BP etc but even in kidney failure my BP was totally normal but don’t know how long you have to have bad kidneys before effects start to show? that’s why I exercise a lot along with the fact that it keeps me sane. I…[Read more]

Hi Mike, long may your remission continue and welcome. Now you’re here can I pick your brains a bit please? I have lambda LC with kidney failure (at 51yrs)- took a year to get to SCT with kidneys at 26ish but now they’re 32. They are heavily correlated with light chains numbers – 120 LC kidneys 14% 60 LC kidneys 26ish hit the dizzy heights of 32…[Read more]

Hi Keith – talking about getting hung up on numbers -when you posted yours the other day ( which are absolutely fabulous by the way – especially white blood count) I had my prints so went to look at mine to compare – mine were 4 months post SCT neuts -just under 2, wbc at minimum, platelets at minimum. I know my bloods are always poor, presuming…[Read more]

Hi, if you ask for your blood test results they will print them off you – but it is hard to gauge how much info you should have as trust me, if you have it in hard copy, you’ll try to analyse everything. In my 1st year of treatment I only asked for 3 no.s but when I had my SCT (at xmas) I started asking for the prints and quite honestly I think…[Read more]

Hi there, Have answered the “visitors” bit – I didn’t have anyone with me but others in the unit did. It is not that boring as there were others, a TV and a nurse sits with you throughout it. The bone pain is often a good sign that it’s working – too many stem cells compressed in the bone marrow. I felt the pain was like labour pains as they seem…[Read more]

Hi there, Sorry to hear what’s happened to you, myeloma is a tricky condition and takes quite a while to understand it (if one ever does). If you look through the Information section there is loads of easy to read literature explaining all about MM and the treatments. It sounds like you have the same type of MM as me – IGg (which is the most…[Read more]

Hi there, no isolation involved in this process at all. I was in a unit with 4 others – some had a visitor stay with them (presumably their “ride”. You just hook up and sit there for a couple of hours, pain free and one of the simpler processes to go through I think. Fingers crossed for a good harvest.

My goodness Helen, don’t know what to say. Except you sound as tho you have a great consultant and are not restricted by the path I always get quoted thalidomide then revlimid. Is pomalidomide a trial at your hospital? Allo – aargh – but if the future looked bleak I’d do anything to prolong it and while we may consider this absolutely huge, as it…[Read more]

OOPS – meant to say enjoy your last night at home for a while.

Hi Izzie, that’s great news – you are going into SCt with the best possible chance of a long remission as many, including myself, go into it without having been able to get to your stage. Research shows that the greater you get to 0 paraproteins the better it is for SCT. I know how positive you’ll be feeling now as even the slightest bit of good…[Read more]

Hi, I haven’t had bone damage/aches and pains previously but post SCt my whole body felt very stiff and achey when I eventually started moving round ( due to illness I was more or less flat on my back for about 6 weeks – including the hospital bit). I think much of it was being so bed bound that the body had seized up but also, when I started…[Read more]

Hi Rosie, my understanding of myelomatous deposits are the MM plasma cells. I guess these deposits are not unusual Unless your husband is in stringent complete remission i.e. absolutely no trace of the plasma cells in the bone marrow. As the majority of us do not achieve this status and carry some “minimal residual disease” then it would not be…[Read more]

They didn’t/don’t give me anything – they just knocked it off. I’m at a small hospital and sometimes think things are done differently at the larger ones. When I have treatment again I will ask about dapsone now. thanks