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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
Thomaskk on 11 March 2014

Category: Uncategorised

Replies: 8

Last updated: 17 March 2014

treatment update on Hannah and Kate32
by Lucas (Mar 17)

I know it's hard. everyone here knows. I spend a lot of time reading, but i must police myself to don't get crazy!! I had some fixation with numbers, and mine weren't great - not bad at all, but i

by Thomaskk (Mar 17)

Thanks . I am slowly getting used to the life long uncertainty now we all need to face.
I was planning to come down to your country for football but I have cancelled the trip. I wish to come down in

by kate32 (Mar 16)

Hi Thomas
I still work but I work part time, its what works best for me. Some people still work full time, everyone gets different side effects. I find I get a bit of bone pain, fatigue and feel

by Lucas (Mar 16)

Hi Thomas. how are you?
i have noted from your previous posts that you are very anxious - at least, that is what i feel.
You were diagnosed ate a very early stage and you reach a great response till
Category: Uncategorised

Replies: 8

Last updated: 17 March 2014
Lucas on 10 March 2014

Category: Uncategorised

Replies: 18

Last updated: 18 March 2014

New member from Brazil
by Lucas (Mar 18)

Please, sandy, edit the post. I did not remember that the forum is open.
Thanks!

by sandy craine (Mar 18)

Hi Lucas, just a note to advise that it is probably not a good idea to advertise your personal email on this forum as it is 'open'... i.e anyone can read it without registering.
I can edit it out

by Lucas (Mar 18)

Thanks Thomas!! If you (or any other person of this group) wanna keep in touch with me, please ask Sandy to send you my email address.
cheers!

by Thomaskk (Mar 18)

CHR in 20 days with excellent HB.you are doing great my friend. Since it is 3 months over do a PCR , FISH and get the reading ....
Category: Uncategorised

Replies: 18

Last updated: 18 March 2014
Thomaskk on 10 March 2014

Category: Uncategorised

Replies: 2

Last updated: 12 March 2014

Role of curcumin
by sandy craine (Mar 12)

There was a previous post on this subject in January, see below for a message from Gerry regarding Turmeric (Curcumin is a constituent of Turmeric)
Sandy
Gerry wrote:
Turmeric is okay to take with

by Lucas (Mar 11)

I read something about it, but just old stuff (pre-imatinib era). Do you know if there is some interaction problem?
cheers!

by Thomaskk (Mar 10)

Hi
Has anyone tried taking curcumin along with imatinib ? There are many good research documents on the net explaining the benefits of curcumin in CML even at stem cell levels
Regards
Thomas
Category: Uncategorised

Replies: 2

Last updated: 12 March 2014
kathy on 7 March 2014

Category: Uncategorised

Replies: 4

Last updated: 10 March 2014

Stemcells manchester
by Dennis (Mar 10)

Gave them permission to incinerate them.
They were stem cells collected at diagnosis, with the intention of using them to put me back into chronic phase, if needed. Apparently they can't be used

by sandy craine (Mar 10)

Hi Kathy,

In that case if I were you I would not worry about keeping them. If they were collected at diagnosis then there will be more PH+ cells present than you now have given that you are in

by kathy (Mar 9)

Hi sandy,thank you for your reply ,when I was first dx I was put on a machine for 3 hrs ,and I think it's the cells from that ,I've been in mmr now for 7 yearS ,so all is good, xx

by sandy craine (Mar 9)

Hi Kathy,
I assume the cells were collected from you rather than donated by someone who matched you?

If so, are they actually cells collected when you were in remission after you had started
Category: Uncategorised

Replies: 4

Last updated: 10 March 2014
David Fitz on 5 March 2014

Category: Uncategorised

Replies: 3

Last updated: 6 March 2014

PCR differences between labs
by David Fitz (Mar 6)

Hi Sandy,
I'm not so sure about the Hammersmith result. To be honest, I'm not too bothered - lets see what the next ones come in at and take stock! I can't really take a full log difference too

by sandy craine (Mar 6)

Hi David,
first, good news that you will now be secure in your access to dasatinib.
HH lab results. Hammersmith have one of the most sensitive PCR methods globally, so if their result is lower then

by Olivia (Mar 6)

I've had differences between labs - my PCR is done by Hammersmith every 6 months as part of Spirit2, while the alternate ones are done here in Edinburgh. The Hammersmith ones have generally been

by David Fitz (Mar 5)

I'm not particularly concerned about this result, but it's a little odd and was wondering if anyone had similar experiences in the past?
My PCR results have been a bit less than stellar, hovering
Category: Uncategorised

Replies: 3

Last updated: 6 March 2014