[dan4ukParticipant]

Hi, If you type in google you might be interested in (margaret’s corner) shes dealing with smouldering myeloma and has loads of information on diet and references to studys that have been done on her blog. She is also on facebook under (Margaret’s Corner. Living with smoldering myeloma). She doing very well so far and is just one of the people that has helped me.

[dan4ukParticipant]

Hi, I often wonder about this and I'm sure my lifestyle let this through the net. I've been working with oils and other chemical associated with the motor trade my whole life, I worked irregular shifts and had an extreamly bad diet. I believe I am likely to be genetically exposed to this but my lifestyle gave the perfect storm conditions for the diesease to initiate and progress especailly being age 29 at diagnosis. I must add I don't live like I used to I'm very carfull with my diet and listen very carefully to my body. I never blame myself or have any regrets I just say to myself we are where we are lets go from here.

[dan4ukParticipant]

This will help me, I feel like I'm still in fight or flight mode. Thank's.

[dan4ukParticipant]

Hi, sorry to hear your bad news. I was interested to hear you mention diesel as I've been heavily exposed to the stuff for years. I was also a HGV driver until diognosis in jan last year, wish I knew then what I know now!

[dan4ukParticipant]

Hi Mavis, good to hear from you.

We have had a rough couple of days, Dans back pain is getting worse….is there anything stronger than morphine they can give him?

Yeah Dan is on the clinical trial but the treatment had to be choosen randomly and the standard CDT was drawn, we hope to get some of the trial treatment later on down the line. We have been keeping up-to-date with the Myeloma beacon and like you, we find it very helpful.

We had good news today which lifted some of the depression…We found out we are having our second child. I'm so scared to go through this while Dan is so ill and our daughter is only 2.
I really need help on how to help him, manage his pain, his tiredness and depression. I feel so lost without him.

Mavis, its so good to hear how positive you are, I hope we will share that way of thinking soon when the spring starts and we can go out more.
Regards
Zoe

[dan4ukParticipant]

Hi

Thanks for the replies, it means so much. I realise that we arent alone with this unfortunately and that others are suffering too, life can be so cruel. Thankyou to the both of you for your positivity. I'm so sorry to hear about how MM is affecting you both. Dans skull has started to strink and we are finding craters all over his head now, I dont know if that means the treatment is working, I really hope so.
Poor Melvin, at the moment Dan doesnt seem that bad in comparison; it must be awful watching him go through that, I really couldnt imagine.
Dai, we are trying not to be sucked into browsing about it, but its so tempting…there are so many questions. Dan has been looking up Tandem autologous and allogeneic stem cell transplants and is going to ask his doctor if theres a chance he could go ahead with this….just wondered if you have any advice about that?

Good luck for Melvins treatment Kaz I hope it all goes well, please keep in touch…i feel for everybody on here and wish them all the best.

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