[daisychainParticipant]

Thanks David regards dawn x

[daisychainParticipant]

Hi eve

I moved from a district hospital in Basingstoke I am being treated t the marsden however because I had a tumour with amyloid I am also monitored by the typically on an annual basis.

No ive nit got it through a trial I'm paying for the drug trough bupa organised by prof Gareth Morgan.

I moved from a district to marsden because I believe I was outgrowing their expertise alo they said they had run out of treatment options.

I have become refractory to all the current drugs available (and believe me I've had a lt including 2 scts) and am a little worried to say the least that pomalidomide hasn't started to work its magic yet!!!!

My mm is monitored through the free light chain test – I'm non-secretorynI have kappa light chain mm

Best wishes to u and Slim

Dawn x

[daisychainParticipant]

Hi Dai

Thank you for your very positive message however

I'm off to see prof Gareth Morgan marsden tomorrow

Just found out results after 1 cycle pomalidomide with dex – not positive free light chains still increasing!! 2nd cycle has changed to pomalidomide cyclophosmide and mythl pred – I'm hoping this combi will start to work…..

Best wishes

Dawn x
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[daisychainParticipant]

Hiya no not on a trial paying for bupa got it privately arranged by Gareth Morgan marsden

[daisychainParticipant]

Thank you David I'm off to see prof Gareth Morgan marsden tomorrow

Just found out results after 1 cycle pomalidomide with dex – not positive free light chains still increasing!! This cycle has changed to pomalidomide cyclophosmide and mythl pred – I'm hoping this combi will start to work…..

Best wishes

Dawn x

[daisychainParticipant]

Thank you xxx

[daisychainParticipant]

Hi yes I've picked it up

ps if t were me I would focus on how I could improve my kidneys!!!

Bet wishes
Dawn x

[daisychainParticipant]

Hi Steve

Thanks for info ill try all clear

Best wishes

Dawn

[daisychainParticipant]

I agree being younger and fitter has had it's advantages – I too go for it by going on holidays xxx

[daisychainParticipant]

Hi Rebecca

I'm a bit like you not sure if I want to know the answer re my diagnosis in case it's what I fear most!!! However what I have learnt is mm is not predictable and even the scientists are not 100% clear. Sometimes best not to stay in the dark as your thoughts / imagination can become even darker.

I ave heard that mm can be more aggressive for younger patients I was 45 when 1st diagnosed so that message scared me silly – I've noticed lately that a lot of mm patents are saying their mm is aggressive????

Best wishes dawn x

[daisychainParticipant]

Hi Rebecca

I didn't get any books specifically to emdr however I do understand that this technique is used for service personnel suffering with post traumatic disorder

I can provide a list of resources I've used over the past years to help me cope with this journey mentally!

Here's a couple to begin with
Web sites patient power, Margaret's blog, ecancer, myeloma beacon

Books
meaning medicine and the placebo effect Daniel moerman, Darren brown tricks of the mind, the power of positive thinking Norman Vincent Peale, wherever you go there you are (mindfulness), anti cancer a new way of life David servan, 59 seconds Richard wiseman, the cancer survivors companion Lucy Atkins, everything you need to know… Candace pert, beyond fear Dorothy Rowe, mindfulness-based cognitive therapy trisha Bartley, my American dream dr Maria miller,

Recently been researching budwig's diet, , anti-inflammatory foods and here's a link ref an article coming from American cancer society

http://agelessbyglynisbarber.com/ageless-articles/20-things-you-should-consider-in-your-anti-cancer-programme/?doing_wp_cron=1369468929.4264290332794189453125

Are you the myeloma patient or is it for a family member/friend

Hope this helps and good luck

Dawn x

[daisychainParticipant]

Hi tony

Many thanks for the tips I will certainly keep forum updated – aa wouldn't insure me, stay sure were charging approx 150 for 1 week to Spain went to the Martin Lewis website for some tips did the money supermarket comparison as he suggests cheapest came up around £70 for the week he also recommends arranging a single policy as opposed to annual.

I haven't tried saga I think I'll give that one a miss lol

Dawn x

[daisychainParticipant]

That's really nice of you thanks Vikki and Colin

Best wishes dawn xx

[daisychainParticipant]

Thanks Ali ill give them a go x

[daisychainParticipant]

Hi Kay

I'm really pleased to hear you're doing so well…:-) I could feel the anxiety in your original post and was really hoping things got better for you… (PS i've been there!!)

I'm doing fine rolling with the punches as you'll note from my profile!!!

It's my mind that plays havoc with me so I always try a get some form of councelling/support tools to keep me focused with the positive in my life now and to stop my mind wondering – to a bit of a scary place!!!.

Don't know if you've heard about this web site http://www.patientpower.info/health-topic/multiple-myeloma
it has podcasts with guest speakers Professors, Doctors who talk about treatment now and in the future – helps keep my mind positive.

This web site also holds interviews with professors/doctors across the world following conferences they attend http://ecancer.org/search – again helps keep my mind focused.

You may be interested in the following that I'm now looking into.

Mindfulness – its sort of about living and thinking in the present try this link to begin with http://www.cancernetwork.com/nurses/content/article/10165/1698208

EMDR this has been recommended by my company's Occ Health therapist http://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing
http://candacepert.com/

Someone has recommended I read this book by Candace Pert Molecules of Emotion – http://candacepert.com/

I find if I can keep my mind in order – I really can live a good life with my kids, family and friends and deal with the challenges this disease brings me.

I also think of this statement often when things get tough. "You can't stop the waves but you can learn to surf" Sri Swami Satchitananda

http://www.swamisatchidananda.org/docs2/home.htm

I can't change the fact I've got myeloma but if I can learn surf the waves when it comes back – ready for the next treatment to come along…:-)

good luck

Dawn x

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