[rebeccaRParticipant]

Thanks, after many months I asked about cytogenic testing and was told I had no chromosomal abnormalities/deletions – just the standard – so weeks of thinking the worse for nothing but now I'm going to ask this week if they did it on diagnosis or the 2nd one after some velcade knocked it back dramatically (which I'm told works well with abnormalities). Currently in limbo on 8th cycle of velcade/dex know bone marrow is good to go but my kidneys only at 22% so they are writing to Roger Cook,Jimmys – Leeds- asking him to see me and if he'll take me. Only had 1120 lambda on admittance and as I only had a blood test 10 yrs previous where kidneys were normal they don't know how I have such damage? Tho I know I saw the Dr in July with kidney fail symptoms and was diagnosed with a virus and labyrinthitis – no blood test – despite symptoms warranting it – then at deaths door November. I am very fit despite kidneys play league tennis and jog/power walk so fitness/SCT is no problems – just kidney risk. Rebecca

[rebeccaRParticipant]

Thanks I am currently reading lots of "positive" thinking books and going to learn meditation – I know the body can't heal well in a stressed state. the uncertainty of will they/won't they SCT is the hardest for me – I am well, have no real limitations with MM and never catch any bugs etc and don't relish changing this but know velcade/dex alone are not known for long remissions. My biggest dilemma is the illness of SCT and hair loss as I haven't told my family or teen daughter I have "C" as I went in with kidney problems and chose to leave it at that – no point in sharing the misery and am concerned how it will affect my elderly parents – natural born worriers – and my daughter. Not telling has helped me quietly just carry on leading my life and not having to worry about supporting everyone else – and I have been well and now back at work, fitness routines etc. SCT will change all this – I think – so much mental turmoil at present.

[MothasParticipant]

Hi Rebecca
I'm similar to you in that I feel well and have minimal side effects. I was told by my consultant that it's best to go in hard and early with myeloma so took up the option of an SCT which I am in the process of having.

Everyone faces this disease in different ways and I firmly believe that the choices we make are the best for us to fit our individual circumstances. At some point though you're family will have to be told and you might be surprised by how supportive they will be. Remember your health is paramount here and this should be the deciding factor to proceed with SCT rather than how you might imagine knowledge of your condition might upset your family.

Might it help to talk to some of the myeloma support nurses from myeloma uk?

[rebeccaRParticipant]

Hi Thanks for that – don't worry if they take me – but that is a big "if" I'm told, I will proceed with no doubts whatsoever – I guess I'm just not looking forward to telling everyone – plus I've been lying to them for nearly 8 months which won't go down well. I may still see if I can do it without everyone's knowledge as its quite conceivable I could be in with kidney issues. Have been to a hair specialist place who claim to get you a wig dyed/styled to your own so the closest family won't know and am awaiting their results – always edging my bets!. At 51 have always been fit and I currently power walk, tennis, back to jogging etc and I believe I would make a quick recovery unless kidneys make it harder for this to happen. But as with everything with MM who knows my thoughts are as fluid as the disease within. I liked one of Dawns posts "You can't stop the waves but you can learn to surf"
Take care and glad you're a multi millionaire now!

[eveParticipant]

Hi Rebecca

Everyone must do what s best for them,I think on here everyone handles it different.:-)

If you go for SCT,you will not be able to hide it,your daughter will forgive the lies,just as you would forgive her.

We found once we had the big C out of the way,after awhile it calmed down,they trust me to tell them anything important,and they just get on with there lives.the way it should be.
Same with extended family and friends,They ask how Slim is and the answer is fine,although at times he looks like a coffin dodger.
My advice Rebecca your kids will forgive you,and tell you never to do that again,and make you feel like a 5 year old.Love Eve

[MothasParticipant]

I really sympathise Rebecca, telling my family was one of the hardest things I had to do. Everyone of course was very upset, but as Eve says, people get to grips with the reality of it and things settle down and believe it or not actually become quite mundane after everyone's got used to the idea.

You must of course make your own decision on this, it will be hard to keep it from them if you're having an SCT though. It's so involving.

All the best

tom

[dickbParticipant]

Hi Rebecca, if anything I think that Myeloma might be seen as more aggressive in younger patients because they tend to be more active, sorry to the really active older members of the forum but I'm sure they know where I am coming from. With activity comes better circulation, good health therefore it can move round the body more quickly affecting other parts more quickly and perhaps we 'feed' it better The other issue maybe that the Myoloma is not diagnosed quickly enough in other patients because the effects such as osteoporosis mask the real problem and of course elder patients are more likely to die before proper diagnosis. We've seen the posts where GP's had totally misdiagnosed MM or ignored it as a possibility. This is not fact, just my thoughts.

As for telling other family members we have a 6 year old daughter. We tell her on a need to know basis. She knows I have to go to hospital. She knows I have to have blood tests and she knows that some days I have to stay in hospital. We want her to have a normal life like her friends. Everyone else we told fairly soon after being told.

I think the issue is not what people to say but maybe not what they think or say or how they will react but your perception of how they will react. There will be the oddball with a negative reaction but at least you will know who your real friends are. I think you may be surprised by just how positive and supportive people will be. Again, this is my view, apologies if I'm being presumptious. Have you read the post about the Elephant in the room?

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