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Steven Davies on 12 April 2014

Category: Uncategorised

Replies: 2

Last updated: 15 April 2014

Two in a row
by sandy craine (Apr 15)

Hi Steven... these results look good for an excellent response (and you are on half dose?). Well done and good luck for your next result.
Sandy

by darley (Apr 12)

Good luck for a bright future

by Steven Davies (Apr 12)

I've just had my PCR back from the Hammersmith and I have had my second 0.003 in a row.. I feel a good trend coming. I'm keeping my fingers crossed.
Category: Uncategorised

Replies: 2

Last updated: 15 April 2014
sandy craine on 12 April 2014

Category: Uncategorised

Replies: 2

Last updated: 13 April 2014

Patient perspectives of treatment including orphan medicines for those with rare diseases
by darley (Apr 13)

It's just come off the listing. It does say but it's not particularly user friendly.
CML is down as rare illness though

by Olivia (Apr 13)

We had a go at this survey, and couldn't find imatinib on the list of orphan drugs...

by sandy craine (Apr 12)

If you would like to take part in this ABPI commissioned survey see the link at the top of this page- in red.
Sandy
Category: Uncategorised

Replies: 2

Last updated: 13 April 2014
sandy craine on 12 April 2014

Category: Uncategorised

Replies: 2

Last updated: 14 April 2014

Patient perspectives of treatment including orphan medicines for those with rare diseases
by sandy craine (Apr 14)

I must say I failed to notice that they had only sent me the carer one! thanks for putting the patient link on Chris.
Sandy

by cdw5000 (Apr 14)

The link Sandy posted is for carers, this link is for patients:
http://www.smartsurvey.co.uk/s/ABPIpatientSurvey
Chris

by sandy craine (Apr 12)

*Who has commissioned this survey?

This survey has been commissioned by the Association of the British Pharmaceutical Industry (ABPI).

The survey is being conducted by an independent
Category: Uncategorised

Replies: 2

Last updated: 14 April 2014
shelly on 8 April 2014

Category: Uncategorised

Replies: 11

Last updated: 16 April 2014

Low Platelet Sprycel.
by Lucas (Apr 16)

you're welcome, shelly.
I'm doing good. actually, i only felt sick after the diagnosis (i think it was my mind and the fear). I live a pretty normal life with mild side effects (sensible skin). i

by RodM (Apr 16)

Good luck on the test, he'll have to get very used to those! I think my biggest has been around 15 vials taken in one go, but some of the nurses are very good at it.
My partially-educated

by shelly (Apr 16)

Hi Rod -you sound like your symptoms and treatment plan is almost the same. So glad you are doing well and appreciate your response. You have certainly given me hope in this learning curve.

by shelly (Apr 16)

Hi Lucas

Thanks for your advice- Much appreciated. Hope you are well on the way to recovery.
Category: Uncategorised

Replies: 11

Last updated: 16 April 2014
david barnes on 5 April 2014

Category: Uncategorised

Replies: 1

Last updated: 5 April 2014

tai chi
by chrissie (Apr 5)

Hi Dave
I have been doing Tai Chi for 5 and a half years (was diagnosed 5 years ago this coming Sept). I found, during the anxiety of diagnosis, that it helped me mentally no end and kept me calm

by david barnes (Apr 5)

Hi

I have been doing tai chi for about 6mths and have seen an increase in my hb level ,just wondered if any other one with clm did tai chi

Dave
Category: Uncategorised

Replies: 1

Last updated: 5 April 2014
nigel on 4 April 2014

Category: Uncategorised

Replies: 5

Last updated: 20 May 2014

6 monthly PCR tests from now on - and a good solid MMR
by sandy craine (May 20)

Hi Nigel, thanks for your post. I think it will reassure a lot of people.
0.07% is a great result! many congratulations on achieving that and you must be really pleased that your 'instincts' to

by nigel (May 20)

Hi all, Like to keep all posted with progress for those on Imatinib as it can be a journey and slower acting than 2nd Gen TKI's, and perhaps early days.
Started at 95% PH+ on Dx. fell to 24% PCR at

by darley (Apr 10)

I'm possibly in a minority position in so far as I had a matched unrelated transplant a long time ago.... 17th May 1996, so just coming up to 18 years ago and after a couple of years of being

by nigel (Apr 5)

Many thanks as always. Nigel
Category: Uncategorised

Replies: 5

Last updated: 20 May 2014
sandy craine on 4 April 2014

Category: Uncategorised

Replies: 4

Last updated: 10 April 2014

Impact of Healthcare Settings on Survival Time of Patients With CML Research · March 12, 2014
by darley (Apr 10)

I'm not at all surprised by this. Indeed it seems to me to just be confirming what common sense (and personal experience) would tell me is going to be blinding obvious.
It was 20 years ago when I

by karen (Apr 7)

Specialist centres are really the best way if there are any queries but, as you say, it depends on willingness to push patients through to them from the local hospital.

Bosutinib seems to be

by sandy craine (Apr 5)

Not sure Karen, but I suspect not- however,I think we would all agree that in the case of any serious disease it is crucial that you are treated at a centre that has experienced/expert clinicians or

by karen (Apr 4)

Seems quite an interesting result - have they ever done anything like this in the UK?
Karen
Category: Uncategorised

Replies: 4

Last updated: 10 April 2014
sandy craine on 2 April 2014

Category: Uncategorised

Replies: 4

Last updated: 30 April 2014

Dav- low platelets/nilotinib
by Dav33 (Apr 30)

Hi Sandy,
Firstly apologies for no reply after you took your time to reply to me in detail. I am self-employed so at some stage had to jump back into everything to try and catch up on lost ground.

by darley (Apr 10)

Hi,
I'm new to this forum but most definitely not new to CML.
I was diagnosed nearly 20 years ago and have been through a roller coaster ride of treatment, emotions and results since then.

by sandy craine (Apr 2)

Hi Dav,(is that the right name?)
I am glad you feel more connected to this forum now. The fact that you are being treated at a general heamatology dept. must be a little disconcerting, however these

by Dav33 (Apr 2)

Hi Sandy,
Many thanks for your comments and wishes. It is really comforting to hear advice from someone else. I am not at a specialist CML clinic, but I am being treated in a general hospital. The
Category: Uncategorised

Replies: 4

Last updated: 30 April 2014
Sneezy123 on 29 March 2014

Category: Uncategorised

Replies: 4

Last updated: 31 March 2014

Log Help
by David Fitz (Mar 31)

PS. It might be useful to look at a thread I started some months ago when I had a few increases in a row. I was worried because I had some consecutive rises, but lo and behold it moved back in

by sandy craine (Mar 31)

Hi Frank,
I agree that this result is more likely to be a 'blip' rather than a more important 'trend'. This is not a big increase as David has said and you should not be too concerned.
It might be

by Thomaskk (Mar 29)

Hi
If it is IS it is just more than 1 fold increase which is more the pcr error range ,
How long have you been holding the pcru ?

When did you achieve CCYR , MMR and first PCRU ?
Are you on

by David Fitz (Mar 29)

Hi,
From my (poor!) maths, it looks like that increase is less than half a log, from a very low base. I guess that's the sort of 'noise' we often see between test results. They're not going to be
Category: Uncategorised

Replies: 4

Last updated: 31 March 2014
Lucas on 26 March 2014

Category: Uncategorised

Replies: 6

Last updated: 10 April 2014

News from Brazil!
by Lucas (Apr 10)

Hi, darley!! I'm glad you're well after all these years!
I had a BMA on monday and it didn't hurt. actually, it was painless. Now i'm waiting for the results. fingers crossed!!

by darley (Apr 10)

Nearly 20 years on from my diagnosis and I've had a LOT of BMA's. They're not the most pleasant of experiences and given a choice I'd choose to go somewhere else but don't be overly worried.

by Lucas (Mar 27)

Oh, man! i hope you have some good tv shows in england :D
I have two friends who had BMAs and they told me the same thing as you said: it's not painful, it's "strange", "uncomfortable".
What team do

by David Fitz (Mar 27)

Yes, I'm well. I am well, just recovering at home from a week in the hospital (surgery to correct a stomach / oesophagus problem) so watching a lot of daytime TV! Actually the surgery should help my
Category: Uncategorised

Replies: 6

Last updated: 10 April 2014
Thomaskk on 26 March 2014

Category: Uncategorised

Replies: 1

Last updated: 27 March 2014

CML progression after CCYR in 3 months.
by Lucas (Mar 27)

Hi Thomas
Your chances of progression are low, but nothing in life is 100% sure. Try to relax a little and think about how you are doing. You were diagnosed very early and had a great response. 95%

by Thomaskk (Mar 26)

Hi
Has any one experienced CML progression after acheiving CCYR in 3 months of Gleevec treatment ?
Regards
Thomas
Category: Uncategorised

Replies: 1

Last updated: 27 March 2014
Lucas on 25 March 2014

Category: Uncategorised

Replies: 9

Last updated: 11 April 2014

What do you do to help your body to fight CML?
by RodM (Apr 11)

Enjoy each day to the best of your ability - what more could you want? :)

by Lucas (Apr 10)

Hi, darley, how are you?
Thanks for the kind words. Actually, i have a much more positive attitude now. i fell great, but my doctors told me not to do hard exercises because my platelets are low (86

by darley (Apr 10)

Frankly if my specialist told me that standing on my head with my finger up my backside would help then I'd do it! ;)
Seriously though I'm not one for fads and notions that there's going to be some

by Lucas (Mar 28)

Hi Ece!
I'm glad you're doing great on Tasigna. with a PCR under 0,1% you're in a great place and probably CML will not be a great concern in the future for you. :)
TKI therapy is our savior and
Category: Uncategorised

Replies: 9

Last updated: 11 April 2014
Thomaskk on 23 March 2014

Category: Uncategorised

Replies: 1

Last updated: 23 March 2014

Any one from Australia ? ( cx 5461 )
by sandy craine (Mar 23)

Hi Thomas,

CX5461 is being studied for its potential in treating aggressive haematological malignancies - i.e. AML and Multiple Myeloma. Both of which are entirely different diseases to CML

by Thomaskk (Mar 23)

Hi
I understand that cx 5461 trails are going on at Peter Mac . Has anyone got an update ?
Thomas
Category: Uncategorised

Replies: 1

Last updated: 23 March 2014
shafagh12 on 21 March 2014

Category: Uncategorised

Replies: 11

Last updated: 24 March 2014

Good results with IMATINIB
by Lucas (Mar 24)

thanks, shafagh!
I was curious because i'm using generic imatinib too :)

by shafagh12 (Mar 24)

Thank you Sarah and best wishes for everybody.

by shafagh12 (Mar 24)

We use a generic type of IMATINIB.

If any body wants, I can send some for test.

by darley (Mar 23)

I've recently found this forum and posted some stuff here which might help in relation to cramp:
http://www.cmlsupport.org.uk/node/8189
Category: Uncategorised

Replies: 11

Last updated: 24 March 2014
sandy craine on 18 March 2014

Category: Uncategorised

Replies: 1

Last updated: 13 October 2014

National CML Patient and Carer Day- 11th October 2014
by sandy craine (Oct 13)

Take a look via the link above

Sandy

by sandy craine (Mar 18)

This year's CML Patient/Carers day was hosted by Prof.Steve O'brien at the Sage Gateshead on the 11th October, 2014. The videos and slides of the presenations are now available to view here:
Category: Uncategorised

Replies: 1

Last updated: 13 October 2014
blueyes74 on 18 March 2014

Category: Uncategorised

Replies: 2

Last updated: 18 March 2014

Today is a good day
by blueyes74 (Mar 18)

Hi Sandy,

It's been a long time. I hope you're keeping well.

Yes i read about the BMB bit. Grrr not happy but a little pain with lots of gain would be worth it.
I go to the North Middx

by sandy craine (Mar 18)

Fantastic news- looks like you as low as it gets! Good luck for applying for a stopping trial, I assume DESTINY?

Just to warn you, the trial requirement is that you agree to a bmb at the start

by blueyes74 (Mar 18)

Five years ago this month i started taking Glivec. Today i had my checkup and the result was 0.0001. In September last year it was 0.0003.

They didn't hassle me for a bone marrow test which
Category: Uncategorised

Replies: 2

Last updated: 18 March 2014
ece2108 on 18 March 2014

Category: Uncategorised

Replies: 4

Last updated: 21 March 2014

GERD, acid reflux with Tasigna
by ece2108 (Mar 21)

Hello Chris,

Thank you for you message, it helps me to hear that it can go away. I will try your suggestions also and hope it will improve.

Yes, we are very happy about the results with

by cdw5000 (Mar 20)

Hello,
I had this issue on Tasigna in the first twelve months - it has now gone away. I had to be very careful on what i ate and drank. Here is what worked for me:
drink lots of water throughout the

by ece2108 (Mar 20)

Dear Sandy,

Thank you for your answers and I'm working on it! It is great to have a support like this for CML, I really feel less lonely!

We are moving in less than 2 month from Asia

by sandy craine (Mar 18)

Hi,

this subject has come up quite often recently. I think you might want to read one of the recent threads on this very subject.... here: http://www.cmlsupport.org.uk/node/8193
Category: Uncategorised

Replies: 4

Last updated: 21 March 2014
Steven Davies on 16 March 2014

Category: Uncategorised

Replies: 1

Last updated: 6 May 2014

Hammersmith Patient Carer Support Meeting Saturday 17th May 2014- 10:30-1pm
by Steven Davies (May 6)

Hi this is just a reminder about the patient/Carer morning on Saturday 17/5

by Steven Davies (Mar 16)

Next patient meeting at the Hammersmith Hospital
LEUKAEMIA PATIENT/CARER

SUPPORT MEETING
SATURDAY 17th May 2014

10.30AM/1.00PM
Haematology Outpatients clinic

Ground Floor Reception
Category: Uncategorised

Replies: 1

Last updated: 6 May 2014
Lucas on 15 March 2014

Category: Uncategorised

Replies: 2

Last updated: 15 March 2014

Genistein
by Lucas (Mar 15)

Thanks, sandy!
I have lactose intolerance and sometimes drink soy milk, but just once a day. I was just trying to find some way to help my body to fight cml. :)

by sandy craine (Mar 15)

Genistein is a component of soy and there are some concerns about soy based foods. Take a look here:

https://www.sciencenews.org/blog/food-thought/concerns-over-genistein-pa...
Sandy

by Lucas (Mar 15)

Has anyone heard about genistein? i read in another forum that is a natural TKI, but i don't know if it interfere with medication.
Category: Uncategorised

Replies: 2

Last updated: 15 March 2014
Thomaskk on 15 March 2014

Category: Uncategorised

Replies: 1

Last updated: 15 March 2014

CD 47 trails starting at stanford
by Lucas (Mar 15)

Sounds nice. I don't know how long it will take to show great results. Actually, i do not believe we'll be able to cure cancer so soon. I believe we will be able to control cancer better. for cml, i

by Thomaskk (Mar 15)

Hi
Any one has latest update on this break through trails .
Please Google for "cd 47 stanford medical " for details. One drug for all kind of cancers . Amazing ....

http://med.stanford.edu/ism
Category: Uncategorised

Replies: 1

Last updated: 15 March 2014