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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
Rogue Wave Fan on 30 January 2014

Category: Uncategorised

Replies: 4

Last updated: 31 January 2014

what happens when you stop treatment all together
by sandy craine (Jan 31)

Please try to answer the questions Chris has asked, plus another from me please...
What exactly are the symptoms that make you say your body cannot tolerate your current therapy -dasatinib/Sprycel?

by cdw5000 (Jan 30)

Hello,
I'm sorry you feel bad enough to consider stopping TKI therapy - CML is quite a treatable disease and there should be some options open to you if your current TKI/dosage is not a good fit for

by Rogue Wave Fan (Jan 30)

On Sprycil. Was dianosed in April 2013.

by sandy craine (Jan 30)

Your questions have several possible answers depending on what stage your disease was at when you were first diagnosed, what your clinical response to therapy has been/is and what therapy you are
Category: Uncategorised

Replies: 4

Last updated: 31 January 2014
sandy craine on 31 January 2014

Category: Uncategorised

Replies: 2

Last updated: 1 February 2014

ELNet Recommendations 2013
by sandy craine (Feb 1)

That's really good news Nigel. Congratulations!

Sandy

by nigel (Jan 31)

Thanks for this Sandy. Ps 0.09% yesterday 2 and a bit years on Imatinib, really pleased, slowly but surely...
Nigel

by sandy craine (Jan 31)

I have just posted the updated ELNet recommendations on the home page. It is a very good overview of where we are today and is well worth a read.
I was particularly struck by a paragraph at the end
Category: Uncategorised

Replies: 2

Last updated: 1 February 2014
Neil1 on 24 January 2014

Category: Uncategorised

Replies: 5

Last updated: 4 February 2014

PCR RESULTS
by Neil1 (Feb 4)

Sorry for the delay in answering back, a very busy time working shifts at work. The doctor says that I should not worry about the result and I have already sent another sample for testing which

by sandy craine (Jan 26)

Chris has given you good advice. I would say that you need to ask your doctor if he/she is reporting your PCR results according to the IS(international scale)...depending on where you're are being

by cdw5000 (Jan 25)

Hello Neil,
I'll hopefully try and answer some of your questions:
your response to Gleevec appeared to be sub-optimal and the upward tick was a cause for review as you effectively never achieved

by Neil1 (Jan 25)

I can find out for you but not until my next appointment, I don't have the numbers to hand but know the WBC was in the thousands.
On Glivec the lowest I ever got was 1.2% after approx 18 months, it
Category: Uncategorised

Replies: 5

Last updated: 4 February 2014
sandy craine on 27 January 2014

Category: Uncategorised

Replies: 3

Last updated: 5 February 2014

Last call for volunteers to take the Health and Wellbeing survey- closes 7th Feb
by David Fitz (Feb 5)

Thanks Sandy - I've completed the survey now!
David.

by sandy craine (Feb 5)

Hi David,

I contacted Brett and he said that he will reopen the survey until Friday... so if you want to take part and help with this research you have until Friday to do so.
Sandy

by David Fitz (Feb 3)

It just says "Unfortunately this survey has been closed. Thank you for your time." when I follow that link.
David.

by sandy craine (Jan 27)

Wellbeing has a strong correlation with overall health (Okun, Stock, Haring and Witten, 1984). Internet forums have been associated with both positive and negative effects on individuals with
Category: Uncategorised

Replies: 3

Last updated: 5 February 2014
Thomaskk on 23 January 2014

Category: Uncategorised

Replies: 3

Last updated: 25 January 2014

WBC and CML load
by Thomaskk (Jan 25)

I spoke to my doctor about the WBC issue and he has told me that he considers the bcr / abl load at the time of diagnose is the most critical factor. He also mentioned the importance of HB level

by sandy craine (Jan 24)

Low WBC in peripheral blood does not necessarily mean a low leukaemic load. At diagnosis I had a wbc of just 17- hardly higher than normal levels. However, my platelets were pretty high and rising,

by David Fitz (Jan 23)

I don't know about any studies of this, but anecdotally I can only add that I started out with just under 200x10^9/L, BCR-Abl ratio of 320% and 14 months later I am yet to hit MMR (0.4% on the chart

by Thomaskk (Jan 23)

Hi
I was going through many earlier posting , and I have noticed that patients with lower WBC load at the time of diagnose , achieves key treatment miles stones faster than others having higher WBC
Category: Uncategorised

Replies: 3

Last updated: 25 January 2014
Thomaskk on 4 February 2014

Category: Uncategorised

Replies: 3

Last updated: 12 February 2014

Vitamin C & Omega 3
by sandy craine (Feb 12)

http://www.lef.org/news/LefDailyNews.htm?NewsID=21940&Section=VITAMINS&u...
Of course to get enough Vit C for it to have a sufficient effect on cancer cells you need to take high doses pref

by Gerry (Feb 6)

Hi Thomas,

I have taken vit C and fish oil whilst taking Gleevec. There was no impact on the Gleevec as I achieved PRCU. I took the vit C in the morning with an iron tablet plus the Gleevec.

by sandy craine (Feb 5)

Hi Thomas,

I have taken vit C at quite high levels for the last 15 years. I also take a number of other vitamins and minerals. There is no evidence that they interfere with TKI therapy in any

by Thomaskk (Feb 4)

Hi
Has anyone taking Vitamin C , Omega 3 tabs along with Gleevec ? Are they good to keep our immunity level high ?
Thomas
Category: Uncategorised

Replies: 3

Last updated: 12 February 2014
Thomaskk on 21 January 2014

Category: Uncategorised

Replies: 5

Last updated: 22 January 2014

Tensed , Confused , What is next ?
by Thomaskk (Jan 22)

Hi
Thank you very much for your posting. It is so encouraging . I did sleep well yesterday. Your comments are in line with my outspoken doctor explained to me . I spoke to him yesterday after

by sandy craine (Jan 21)

Hello Thomas and welcome,
It is understandable that you feel the way you do... it is a common experience at diagnosis. However, given your test results it looks to me like you will be one of the

by Richard42 (Jan 21)

Thomas
I never say never, and I remain a CML patient (and will be forever as far as I know) but I suspect I won't die of CML. I believe that to be true of the vast majority of CML patients nowadays

by Thomaskk (Jan 21)

Hi Richard
Thank you for your comments. I am feeling better already. My doctor does not believe in PH-ve bcr / abl positive CML . He says it is because of poor sample. ( He admits that there is PH
Category: Uncategorised

Replies: 5

Last updated: 22 January 2014
jacqui from Col... on 20 January 2014

Category: Uncategorised

Replies: 2

Last updated: 20 January 2014

Nilotinib and cardiovascular
by gizmos mum (Jan 20)

Hi Jacqui, I hope you are well. I was told the same thing last week by probably the same consultant as you. I will get mine done in 3 months when I see him again. I am not sure what he meant by the

by cdw5000 (Jan 20)

Hi Jacqui,
It has been discussed briefly before:
http://www.cmlsupport.org.uk/node/7852
Although it is a concern, i take the view that without Tasigna I'd be in a pretty awful place. There are

by jacqui from Colchester (Jan 20)

I see my consultant last Monday, he said that there appears to be new information regarding cardiovascular events with regards to Nilotinib. I have been for a chlolestral check and I'm awaiting
Category: Uncategorised

Replies: 2

Last updated: 20 January 2014
chrissie on 16 January 2014

Category: Uncategorised

Replies: 3

Last updated: 20 January 2014

Poor blood samples
by chrissie (Jan 20)

Thank you to Karen and Sandy for your replies. I'll suggest a courier service to my hospital on my next visit,but I guess Royal Mail is cheaper and as there are no problems with my health and

by sandy craine (Jan 17)

Hi Chrissie,
I think Karen makes a good point and you should try to ensure your blood sample is transported as quickly as possible. It is the RNA that is extracted from the cells in the sample and

by karen (Jan 16)

Hi Chrissie

The same thing happened to me a number of times - basically the blood was being posted from my local hospital to Kings and due to the length of time it was taking they could not

by chrissie (Jan 16)

My last 3 blood samples sent to HH from Exeter for PCR testing under WIN and Spirit 2 trials have come back stating either that the blood was too old once they came to test it, or, for the last two
Category: Uncategorised

Replies: 3

Last updated: 20 January 2014
kathy on 16 January 2014

Category: Uncategorised

Replies: 1

Last updated: 17 January 2014

Tumeric
by Gerry (Jan 17)

Turmeric is okay to take with Glivec, but it can cause issues with bruising. I took it for a short period of time and wound up with extra bruises. I am still slightly anaemic, so figure that's why.

by kathy (Jan 16)

Hi all,does anyone know if turmeric capsules are ok to take with glivec,I've started with arthritis and these were recommended.xx
Category: Uncategorised

Replies: 1

Last updated: 17 January 2014
Steven Davies on 13 January 2014

Category: Uncategorised

Replies: 11

Last updated: 23 January 2014

Private health care with Bupa
by David Fitz (Jan 23)

> If your consultant is of the opinion that dasatinib is oral chemotherapy would you be able to persuade him/her to write on your behalf to the Medical Director of the insurance company to ask

by johnw1001 (Jan 23)

Hi David,

Thanks for your response which is interesting from a number of perspectives.

Insurance companies it seems do not specify in detail their polices or approaches towards cancer

by David Fitz (Jan 20)

Thanks John,
I'm already doing most of what you advise. I actually get seen on the NHS for everything except prescribing - all my clinic appointments and blood work is at Barts NHS hospital. So I'm

by David Fitz (Jan 20)

We are looking at that option (tomorrow in cliic, actually) but I do think that if the insurance company takes a bet, and loses, they should pay out. Their T&Cs clearly state that they ought to
Category: Uncategorised

Replies: 11

Last updated: 23 January 2014
tartancaddy on 3 January 2014

Category: Uncategorised

Replies: 2

Last updated: 6 January 2014

gastric problems on imatinib
by sandy craine (Jan 6)

I have never suffered from this but my mother has for years- although she does not have CML. She was told she had diverticulitis, hiatus hernia and that nothing could be done. Later tests confirmed

by Richard42 (Jan 3)

Hi Gary
I don't get abdominal pain but had bad reflux/heartburn when I started imatinib. Always been a bit prone to it but imatinib made it constant and much worse as soon as I started in 2009.
So

by tartancaddy (Jan 3)

Hi Fellow CML'rs
I've been having real problems with reflux and acute abdominal pain on waking up in the morning then dissipates as soon as i'm up and around. Think i might have asked this already
Category: Uncategorised

Replies: 2

Last updated: 6 January 2014