Father and daughter with MDS - Azacitadine and transplant

[richard barker]

Several of you are already following our BLOG http://mds-in-the-family.blogspot.co.uk/, which is updated most months. It follows the fortunes of my daughter and I who both have MDS. Both were RAIB II. Roz had a transplant over a year ago, and is having stem cell top-ups. I am about to start my tenth cycle with AZT - as at April 2012. Mostlty we both feel fine and do as much as we can.
We thought it would be useful to share our experiences, what worked for us and what did not and to encourage everyone going through this nightmare to be well informed, proactive and live your life to the full as far as you possibly can. We believe that good positive caring, humour in face of adversity, and great medical staff can improve our chances of survival and of having a good quality of life.

One of our conerns is the postcode lottery. If you are in a part of the country with no Centre of Excellence, little knowledge of MDS by Consultants, or poor local facilities - then please get together and lobby your MPs. It worked when we as MDS UK Patient Support Group lobbied for Azacitadine.

Please add your own positive feedback to this website or other MDS BLOGS
Best Wishes
Richard

[chris]

Dear Richard (and Roz)

The website just crashed and I lost a whole long reply!! Again!

What I think I said was... Firstly, thank you so much for sharing your blog and thoughts with us on this Forum. It is really very helpful to read of other people's experiences of MDS and treatments.

You must be a real medical puzzle as for two family members to have contracted MDS is quite rare ( zillions to one!) and Roz at such a young age. Do you have any further news on what they think the causes might be? Gene research is getting more sophisticated so I hope that will yield some answers though not sure if this sort of research can be done at local NHS path labs yet?! I wondered if they thought there was any environmental trigger - there must be lots of chemicals/ pesticides/ herbicides etc around a farm and some of these have been suggested. I did wonder about this myself as my own MDS kicked off about 2 weeks after we had taken over a new allotment which was waist-high in weeds but I did wonder if the previous incumbent had got desperate during the several years it was allowed to decline and whether he might have resorted to weedkillers etc?

It is great to read that you and Roz have responded so well to your treatments. Aza seems to be doing the trick for you and long may it continue. Why no stem cell transplant for yourself? Roz has certainly been through it but hopefully she will continue to be well and that the donor cells will keep the upper hand!
Totally agree about the differences that people experience across the UK and I feel we should lobby for a national protocol on MDS whereby all suspected MDS patients are referred to a Centre of Excellence where they will get up-to-date diagnosis and standard and well-researched treatment. We still read on this Forum of "unusual" approaches, delays in diagnosis and non-standard treatments. At my local hospital, I was prescribed daily prophylactic antibiotics and a mouthwash (which stained my teeth black!!) and it turns out that neither of those would normally be given for somebody with my level of white cells and level of health. I decided not to take them (antibiotics not at all and the mouthwash discontinued after 1 month's use and the tooth staining experience!) and, guess what, for over 4 years I have not had frequent infections, neutropenic fevers, nor constant mouth ulcers (though I do get the odd nasty one - I would rather treat them as they come and not look like an old witch!).

Best wishes

Chris

[Jayne]

Hi Richard
Sophie put me in touch with your blog a few months ago, cant quite remember the reason why, I hope you dont mind but I have been following you.
I just wanted to let you know that I have found your blog to be really helpful. I know you have been through the mill but you are both here and that is very comforting for someone (ie me!) about to embark on a stem cell journey.
I have one more round of chemo to do and then the transplant is set for the end of June.
I am extremely fortunate to be at St James in Leeds and under Professor Bowen. He is brilliant, very knowledgable and one of the leading Profs for MDS and leukaemia in the UK and internationally. Like you say it does seem to be a postcode lottery and I thank god/my angels that I have Prof.B and St James.
I realise Ros has had some very rough days and reading your blog has enabled me to prepare myself mentally for what may be ahead but I am determined that on those tough and dark days I will always remain focused on the end result. So I would like to say a very big thank you for sharing your experiences with us.
I do have a blog myself, as I have been at home for the last 4 weeks there is a bit of stuff about that so you may not find it that interesting but I am currently in the process of phoning for a bed each day so it is imminent! My blog is www.caringbridge.org/visit/jaynesnell - you and everybody on here is welcome to follow me (and post in the guestbook!).
I hope you both continue to do well and I wish you all the luck in the world and all the very best.
Jayne x