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National UK CML Patient Day October 10th

If you have not yet booked there are still around 15 places left for the day.
Sandy

Hi Sandy,

What time does it start at? I'm hoping to be able to get up to Newcastle for it.

David.

Hi David, according to the website- http://www.mpdmeetings.org - registration and coffee is from 9.00-9.30am..... so I assume they will want to start pretty much by 9.45 or 10am at the latest. It finishes at 4.30pm.

Hope you can make it.

Sandy

Please find below live link to the webcast page for Saturday. You can watch the meeting live from 09.30 hours on Saturday the 11 October, 2014. So if you can't get there is on the webcastn

http://www.mpdmeetings.org/sage_webcast/

Final agenda is now available.

Sandy

Hi Sandy

Just wanted to say, it was great to meet you finally today at the CML day in Gateshead, your presentation was very good. Hope everyone enjoyed a sunny day on Tyneside. Hopefully everyone who couldn't make today's patient and carer day will get to see footage on www.mpdmeetings.org if published soon.

Thank you and Nigel also for giving some tips on musculoskeletal pain and cramps I still seem to be finding troublesome and worrying after treatment on Imatinib and Nilotinib over the past 15 months.

Keep up the good work.

John Paul

Hi.... yes it was a good day, in fact I found it to be one of the best meetings so far.
It was lovely to talk with you and your wife and I really hope you can resolve the joint pain you are suffering. It's a long time to be in pain!
I had mentioned magnesium oil/cream that definitely helps with any muscle cramps as well as an assortment of other effects of life in general and TKI treatment in particular.
http://www.huffingtonpost.co.uk/marek-doyle/help-me-sleep-magnesium-secr...

You can buy the Mag.oil at Holland and Barrett or other high st. shops but as I mentioned it does sting a little (well quite a lot) when you first use it. I find the this form overcomes that... but take a look here:

http://www.amazon.co.uk/Original-Professional-Strength-Minerals-Magnesiu...

I had forgotten about glucosamine so I am glad Nigel mentioned that it had really helped with his joint pain, so I hope you can give it a try.
If your PCR results show a low level of BCR-ABL then maybe at some point in the future you could try a dose reduction to see if it resolves the issue completely. Maybe you already have discussed this with Prof.O'brien but from some of the presentations it seems that dose reductions after stable MMRs are reached might be an answer for people who experience the more worrying side effects of 2nd generation TKIs.

Sandy

Thanks for the links, I am going to order some oil, even it stings like a Bee then it will be better than this constant ache, tingle and general soreness in the neck, shoulder and back I'm getting. I don't think the constant worry and anxiety to the unknown cause helps either. It just worries me that the tingling sensitive skin and aching doesnt seem common on here.

I just hope its something that resolves or can be corrected. Don't fancy having to "manage" anything else.

Take care.
John Paul

Hi John Paul, Glad we had chance to talk, hopefully you will find higher does glucosamine helps, I believe it did me - Pre CML so maybe different, but hopefully not. Let us know how you get on.

Nigel