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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
Thomaskk on 2 March 2014

Category: Uncategorised

Replies: 4

Last updated: 23 March 2014

Hi Sandy : CCyR in 3 months with 400 mg Gleevec
by darley (Mar 23)

Thank you... I do feel very fortunate in having great treatment and a measure of good luck.
Following the BMT everything was seemingly going good and I also thought it was curative.
Then I took part

by Thomaskk (Mar 22)

Congratulations. .Your story is amazing. . BMT is a curative treatment. Right ? Why did you start taking Gleevec ?
Regards
Thomas

by darley (Mar 20)

I was diagnosed 20 years ago. Had a matched unrelated bone marrow transplant 18 years ago.
Went on Glivec when it was in trial 13/14 years ago and am still on it. I've had a good response and

by sandy craine (Mar 2)

Hi Thomas,
Congratulation on a very good response- BCR-ABL at 0.8% (IS) is well below the ELNet recommended goal of less than 10% Ph+ at 3 months.
CCyR is normally considered to be 1.5% Ph+, so at 0
Category: Uncategorised

Replies: 4

Last updated: 23 March 2014
Thomaskk on 25 February 2014

Category: Uncategorised

Replies: 1

Last updated: 25 February 2014

My 3 moths PCR **
by Richard42 (Feb 25)

Thomas
Looks like a good result to me and well under the 10% level that one likes to see ideally at 3 months. One step at a time and far too early to worry or think about other things but as was

by Thomaskk (Feb 25)

My first 3 months pcr result. It is .876% on international scale.
I believe it is not a bad start. It is close to CCR .right ?
1. How do you rate this result ?
2. What are my chances of
Category: Uncategorised

Replies: 1

Last updated: 25 February 2014
Neil1 on 25 February 2014

Category: Uncategorised

Replies: 3

Last updated: 2 March 2014

Latest Meeting.
by sandy craine (Mar 2)

Hi Neil,
It really depends on the individual case but yes, qPCR testing is very sensitive and can show significant (or not) changes in molecular levels of BCR-ABL. With CML things can change quite

by Neil1 (Feb 26)

Does anyone know how long it takes for some results to be shown in PCR results?
Will a matter of 4 weeks allow any change to be shown, and how quickly can things change?
Anyone any experience of

by sandy craine (Feb 25)

Hi Neil,

this is all good news and the fact that your doctor is obviously being proactive should make you feel confident.

I am sure that cutting out fizzy drinks and coffee etc from your

by Neil1 (Feb 25)

Well, back from my latest discussion with my specialist and he is as yet not overly concerned. The reasoning is that the medication is still having an effect on my illness and he is of the opinion
Category: Uncategorised

Replies: 3

Last updated: 2 March 2014
Neil1 on 20 February 2014

Category: Uncategorised

Replies: 8

Last updated: 22 February 2014

Latest Results
by Neil1 (Feb 22)

Just another thought, when would a plasma test be done to see if the dosage of Nilotinib in there is high enough and can the dose be increased?

by Neil1 (Feb 22)

Does anyone know if the dosage of Nilotinib can be increased and whether this would have any effect on the PCR?
Just thinking out loud, also what would happen if patients were to return back to a

by karen (Feb 21)

I had the test done as i don't respond well to the TKI's but the good news is i have no mutations, the bad news is I still don't respond that well to TKI's!!! Changing is always the worst bit as you

by sandy craine (Feb 21)

Hi Neil, please try not to panic (I know it's easy to say and hard not to). Everyone has given you very good advice- and remember, a lot of us have been in the same place as you are now.

From
Category: Uncategorised

Replies: 8

Last updated: 22 February 2014
Thomaskk on 12 February 2014

Category: Uncategorised

Replies: 1

Last updated: 12 February 2014

Do you understand this report ?
by Richard42 (Feb 12)

Hi Thomas
I wouldn't rush too quickly to try to understand everything - that will take time. There are lots of subtleties in all these targets and data, which can confuse the picture somewhat.

by Thomaskk (Feb 12)

I have just down loaded an article from the link given below . In its conclusion statement says only 68% patients who has achieved CMR will remain in CMR after two years . What does it mean ? CMR's
Category: Uncategorised

Replies: 1

Last updated: 12 February 2014
Thomaskk on 12 February 2014

Category: Uncategorised

Replies: 2

Last updated: 14 February 2014

CAR - T cell immunotherappy and us ...
by Paul Miller (Feb 14)

There is quite a bit of background in this article from 2012: http://www.nytimes.com/2012/12/10/health/a-breakthrough-against-leukemia...
Note that there were hefty side effects though and one young

by sandy craine (Feb 12)

You might want to watch this 'patient power' video.
http://www.patientpower.info/video/understanding-advances-in-gene-therapy
Sandy

by Thomaskk (Feb 12)

Anyone knows about this emerging technology ? It talks about ALL and CLL.

Do you think CML patients may also get benefited ?

I have been watching this on CNN ..it is just amazing
Category: Uncategorised

Replies: 2

Last updated: 14 February 2014
pat preston on 18 February 2014

Category: Uncategorised

Replies: 2

Last updated: 21 February 2014

Swollen legs and knees.
by pat preston (Feb 21)

Dear Sandy, Thank you very much for your helpful reply to Judith's problem. I have given your information to Judith and she sends her best wishes to you and thanks you for helping her. Judith has

by sandy craine (Feb 19)

Hi Pat,
Does Judith think this is due to side effects of the TKI? If so she should see her doctor asap. especially if the swelling is causing her pain or feels hot to touch and if she also has any

by pat preston (Feb 18)

My friend Judith has asked me to post this. She has had CML for 14 years and has been on 400 mg Dasatnib for 7 years. She is concerned because her legs and knees are badly swollen so that walking
Category: Uncategorised

Replies: 2

Last updated: 21 February 2014
Steven Davies on 5 February 2014

Category: Uncategorised

Replies: 3

Last updated: 14 February 2014

0.003
by Steven Davies (Feb 14)

Hi no I'm on 400 mg nilotonib which is half dose

by Thomaskk (Feb 12)

Congratulations. Are you on Imatinib ?

by sandy craine (Feb 5)

Hi Steven, that makes you at MR4.5 which is pretty wonderful. Well done,
Sandy

by Steven Davies (Feb 5)

Just received my pcr from January and it's 0.003. Yippee
Category: Uncategorised

Replies: 3

Last updated: 14 February 2014