UK Help

[Trish]

Anyone out there having treatment for MDS in Uk?
Is there any support group in the Uk?
I am new to this site so still feeling my way around. My husband,Bill, diagnosed about three years ago but went critical in March this year when bone marrow blasts reached 28%. We live in Beirut Lebanon and he is having Vidaza treatment at the American University Hospital which h has responded well to. Blasts now down to 6% but we worry that because of the unstable political situation here we may have to move back to UK and rely on NHS. Anyone any experience of treatment in UK.
I undestand clinical trials of Vidaza are taking place at King’s College.

[Alice S]

Hi Trish

There was someone posting here a while back from the UK, perhaps if search using the word ‘UK’ you may find her. I hope you come right.

Take care.
Alice

[Trish]

Thhank you Alice I will try a search. Hope your mum is doing OK
Love
Trish

[DonUK]

Hi Trish,

There are a few centres of excellence here in the UK.

Karen was treated at Kings College under Prof. Ghulam Mufti.

They are a very good team of haemotolgists, Prof Mufti is prbably one of the best in Europe.

Hope all goes well with Bill,

Take care,
Don

[Sally_McNamee]

Hi Trish
I used to post a lot to the forum when my Mum was ill. She died in 2003 from MDS/AML.
I believe Prof. Mufti is excellent, but my experience in the UK was not good – although as always, every case is different. Because of her age (74 when dx), my mum was not offered any treatment other than transfusions when required and tranexemic acid (i think that was right) to prevent bleeding (it didn’t). My experience with the NHS was that I had to battle for everything for Mum, and I’m sorry to say I mostly lost the battles.
However, your experience might be very different, and things might have moved on since 2003. Plus, if you can get to see Prof. Mufti or the other specialist of note in Scotland (sorry, forgotten his name – David something. I’ll try and find details and post them here) the treatment you get should be much better.
I never found a support group in the UK, but can’t praise this one enough. It is such a good source of information and support.
I wish you and your husband the very best of luck.
Sally

[Sally_McNamee]

Hi again
Well I said things might have changed since 2003 – the specialist I mentioned is Dr. David T Bowen. He’s pretty famous. He’s also now working at a teaching hospital only 60 miles from where Mum lived. Had he been there in 2003, who knows what a difference that would have made …
Oh well, no good thinking ‘if only’. But it might be worth you contacting him if you have to come back to the UK.
While I’m posting can I please say hello to old friends – hi Neil! And Barb Greene, don’t know if you’re still reading but hope you are well. I’ve moved to Canada since Mum died and really enjoying it.
Sally

[Trish]

Hi Don
Thank you for your prompt response. So sorry to hear that you lost Karen This is an awful disease.
I understand that Dr Mufti is doing clinical trials on Vidaza. Was Karen treated on NHS?
Bill’s medical bills are currently being funded by his company medical insurance but he has now been that his best chance of survival is to stay on Vidaza for life.
Take care
Trish

[Trish]

Hi Sally
Thank you for the information and so sorry to hear about your Mum. It’s very difficult sometimes handling the NHS.
I have heard of Dr Bowen I think he is in either Leeds or Scotland?
Bill is 60 years old and been told that his best chance of survival is to stay on Vidaza for life.
Hope you continue to be happy in your new life
Take care
Trish

[DonUK]

Hi Trish,

Apologies for slow reply.

Karen was treated on the NHS. I believe the treatment was good, we never had to fight for drugs or anything. I remember at one point she was on a drug which was around £1500 a go. I believe she was on this for 40 or more doses and the hospital never worried about finding the resources. Patient care was first and foremost.

Hope all goes well for Bill.

take care,
Don

[Author]

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