[rebeccaRParticipant]

Hi Tom, I go to Scunthorpe under Dr Jalihal for treatment and then he sees me in Outpatients in Goole. Castle Hill don't want to risk my kidneys so I asked for a referral to Prof Cook, St James, and then if he says yes apparently Castle Hill will do it! – its about same mileage from where I live to both but I think Castle Hill is an easier drive. Very nice at Scunthorpe tho' and really like Dr Jalihal

[rebeccaRParticipant]

Hi Christine just seen your post and noticed you're not too far away being treated at Pontefract – I live Goole area, am 51 and was diagnosed just before Xmas. Do you live in Pontefract? I go to Xscape quite a bit and thought if you ever wanted to talk – away from loved ones – we could meet up. You sound very positive but I know it is an emotional rollercoaster of highs and lows. If you ever want to meet up drop me a line ( at the clinic I attend everyone seems to be 70yrs+)
Take care
Rebecca
rollinsonrebecca@gmail.com

[rebeccaRParticipant]

Thanks Dawn,

I find mindfulness still quite hard to do though I am trying.
Someone on here, I think Eve, once posted the saying

"Worrying does not empty tomorrow of its troubles.It empties today of its strength"

It is so true that is has almost become a mantra to me on a daily basis and I passed it on to a friend (who is very troubled) and she too finds it very helpful to remember this – almost as a prompt to bring you back into the present.

[rebeccaRParticipant]

Thanks Dawn, I will look at these with interest. Have answered you about my MM on another posting.

[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!

[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.

[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]

Hi Dawn – totally off topic but was reading your previoous posts where you mention educational material to help/ease the mind live in the present. I have just ordered the Candace Pert book – Molecules of emotion and you put in a link to a reference of EMDR – is there a good book you got that covered this topic? Would be interested in any books/cds you ahve found beneficial to living with MM. Thanks Rebecca

PS Don't want to sound like a stalker but when I see new oeople posting I lkie to view their journey (becoming slightly obsessed with MM at the moment and want to back track away but finding it hard)

[rebeccaRParticipant]

Hi – I was admitted to hospital with 5% kidney function am currently on velcade and dex and my kidney function is now only at 22-23%. I was given velcade as frontline treatment (a very good drug) because of my poor kidneys as velcade does not impact the kidneys and goes through the liver instead. Velcade is normally 2nd line treatment but each time i get it they quote a "reasoning" from the Lancet journal as being most suitable for MM with kidney issues (summarising somewhat) and the drug is authorised. Velcade appears to be not as harsh for patients and I think it states in some literature on this site that it can be used for elderly patients who would not be suitable for stem cell transplant. Rebecca

[rebeccaRParticipant]

Thank you Helen – I thought I was the only person who went to chemo/consults alone – my specialist nurse thinks I am very "insular" but I cannot deal with this fully focussed/strong whilst considering the needs/wants of my partner as well. Sometimes it has taken me weeks to ask certain questions – at a point when I know I can deal with the answer – so I don't want anyone pushing info on me when I am not ready for it and vica versa. It is a difficult balance to achieve but I think my partner secretly prefers me doing it this way as he has his own struggles re. our situation to deal with and perhaps being at work instead of the hospital is a welcome relief – tho I know he would come if I wanted him there.

[rebeccaRParticipant]

Thanks for that will now get a wig – good luck fingers crossed for you.

[rebeccaRParticipant]

Hi Sarah, So sorry to hear about the failed harvesting and having to lose your hair in the process. I am hoping to be harvested and stored for a rainy day) as my kidneys are not great for an SCT (understatement). I am only on dex/velcase so have had no hair loss and my hopsital couldn;t tell me if I would lose all my hair at harvesting or it jusst thinned – have you lost all hair now or just patches? I haven;t yet sorted a wig out as I didn't know. I feel rather cheated if I have to lose my hair just for harvesting when not following straight through with chemo but guess in the great scheme of things it's a small price to pay. What chemo drug did they use at the harvest melphalan or cyclasomething?
Take care, Rebecca

[rebeccaRParticipant]

Congratulations, great news to hear – enjoy it to the max. Rebecca

[rebeccaRParticipant]

Hi – thanks everyone for all your views – does put things into a better perspective – but would rather have been diagnosed at 70 than 51 regardless of fitness etc. Am currently on 5th cycle of dex/velcade with a view to SCT but now they are in doubt if this can happen as I only have 17% kidneys (but no bone damage) so options getting shorter if this is the case… Rebecca

[rebeccaRParticipant]

Sorry to hear about your mum but as I'm sure you're aware everyone reacts differently to the disease and i have read posts where someone was diagnosed with aggressive stage 3 myloema and has achieved a 10yr + long remission – the individuality of it all means there is always hope but I know its difficult to remain positive when we literally face the "unknown". I am sure your mum will pick up soon. Take care, Rebecca

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