[CarolBradley1Participant]

Hi – hope the meds are helping with the bone pain. Regarding the tingling feet etc – I have had this for about a year since I have had all the Chemo – lots and lots including Velcade and Revlimid. I describe it as having an electric current though the soles of my feet and although irritating can´t say mine is too bad as the back and general bone pain is far worse. I was told that your SCT hasn´t necessarily failed if you get a few disappointing results in the early days as everything takes time to settle down and many of the drugs used have a long "shelf life" so take a while to work completely.
Anyway, best of luck and take care of yourself.
Carol xxx

[CarolBradley1Participant]

Chrissie, so very sorry for your terrible loss. I lost Michael to cancer (brain tumour he was 42) twenty years ago. That terrible grief does pass please do believe me and hang on. The best advice I was given was as follows: Concentrate on just breathing and eventually the rest will follow, and don´t on any account make any serious decisions (especially big financial ones) for at least 18 months/two years if you can avoid it.

Please allow those around you who care to support you whilst you deal with your distress, anger and devastation.

Twenty years on I have been married to a true gentleman who now cares for me with my myeloma diagnosed five years ago in the same way that I cared for my dear Michael when he was so ill.
The people on this site are lovely and I know that like me, they understand entirely if you want to come on here and just talk and know that we are listening and understand.
Love and prayers Carolxxx

[CarolBradley1Participant]

Hi Nicola

Glad to hear your dad is improving. You are a super daughter and he must be so proud of you. Please try and look after yourself too although I know it´s really hard when life is so difficult and busy.
Best Wishes
Carol

[CarolBradley1Participant]

Hi
I have been away so please accept my apologies for the delay. Welcome to the site, although so sorry you have had this awful shock.
I have been on the Myeloma trial since last July although I was diagnosed in 2005 and managed without treatment until then.
I have had a range of treatments including Revlimid and the stem cell transplant and although I won´t say it´s been easy the result has been worth it. I am now officially in remission and did start on a maintenance dose of Revlimid but am currently having a "holiday" as I was losing a bit too much weight and was so tired and had neuropathy in my feet mostly.
I am feeling ok although still very very tired and a bit "fragile" which does irritate as I am a really active person (3 horses) and all the other usual stuff we all try to fit in. However, I do count my blessings and am so very grateful that I had the opportunity to join the X1 trial.
Best of luck, keep your chin firmly up and try to remember that new drugs are coming through all the time and this rotten illness is soon going to be much easier to treat and control I am convinced after watching how the American teams are working on it.
Best wishes
Carol

[CarolBradley1Participant]

Hi Mari
So sorry that you have had such an awful shock. I had a similar one a few years ago and then it went down again after a couple of months. At the time I personally put it down to the shock at the loss of my son in law in a road traffic accident (aged only 32 and Daddy to a little boy aged 5)but who knows with MM? – not sure even the specialists do all the time yet.
I can only wish you both the very best and hope that things settle down soon.

Love Carol xxxx

[CarolBradley1Participant]

Hi Terry and welcome although I´m truly sorry that we are meeting here!

You really have been through it I´m afraid haven´t you? I was going to mention Revlimid (which seemed to work ok for me apart from the side effects and it brought my paraprotien level down prior to SCT but I have just read Scott talking about it to you. Might be worth asking about – perhaps one of the myeloma drugs trials?

Take good care of yourself and best of luck with whatever treatment they decide is the right thing for you.

love Carol xx

[CarolBradley1Participant]

Hi Ted
So glad to hear that you are continuing in fairly good health – long may it continue!
We live in Halifax and I am beginning to think that it´s going to rain forever here!

Take good care of yourself.
Love Carol xxxx

[CarolBradley1Participant]

Please accept our sympathy and very best wishes at this very difficult time.
Carol Bradley

[CarolBradley1Participant]

Hello Peter

Just wanted to say Welcome to you although I´m sorry we are all meeting like this.
You and you super wife sound to have worked out how to cope with this horrid illness really well and your good lady obviously takes very good care of you. What would we do without our lovely helpers? – be pretty miserable I think.

Best wishes
Carol xxxx

[CarolBradley1Participant]

Hi Jet

Good for you – fantastic news!!!
Now all you have to do is get a little stronger day by day and not be too hard on yourself if you are a bit wobbly for a while.
So pleased for you.
Love Carol
xxx

[CarolBradley1Participant]

Hi David
I like that – Vasbyte is so much quicker to say and repeat than "grit your teeth"

No, your right we´re not going to live forever but for a heck of a site longer than this myeloma intends arn´t we?!!!!

My husband,beloved horse Harry and his companion are leaving for Spain on Thursday and I will follow next week when they have arrived safely (God willing). I am worried sick about them all (especially husband)but I know this is exactly the kind of thing we used to do before I was ill so
it´s our way of getting our life back I suppose. Just so wish I could travel with them if only to help keep everyone calm and content but doc and husband won´t hear of it so Vasbyte could well come in for some heavy usage over the coming week!

Vasbyte!

Best wishes
Carol
xxx

[CarolBradley1Participant]

Hi
[b][/b]Fantastic news!!![b][/b] So pleased for you both may it continue for a long, long time.
Thank you for letting us know – it´s a real boost.
Go away and enjoy your holiday you really have earned it!

Best Wishes

Love Carol
xxxx

[CarolBradley1Participant]

Hi Amelie

Luckily my doctor is very kind and sympathetic – it´s just that after my being so poorly I think my itchy back comes rather low down in the order of things to worry about so I´m trying not to worry about it.
Hope things go well.
Love Carol xxx

[CarolBradley1Participant]

Hi Bridget
Glad to hear your back up and running! Hope the morphine is helping with the pain although I know it must make you rather haaaaaazy!
They have given me oramorph to be used only at those times when the Tramadol just can´t calm the old back down but I haven´t been forced to use it thank goodness although I have come pretty close.
Enjoy the sunshine and try and look after yourself.
Love Carol xxxx

[CarolBradley1Participant]

Hi
MySuch a relief to hear there are others out there. Took my grandchildren shopping with me today as their teachers had closed the school for a training day. My four year old little grandson spent the first 10 minutes trying to negotiate how many items I could buy before we went to McDonalds and when I wouldnt play that game tried to negotiate how much time I was allowed to buy the groceries etc. etc. The whole day seemed to go on like this t.v, what we ate, where and when we went blah blah – no fun at all and frankly exhausting and not looking forward to the next time.
I agree with every word you have written so perhaps with enough of us we could start to stop the rot as it´s such a shame to see little ones literally "spoiled"
Kind regards
Carol xxx

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