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V1ck1 on 21 July 2016

Category: Treating CML

Replies: 2

Last updated: 21 July 2016

BMT??
by darley (Jul 21)

* sticks hand up :)

by sandy craine (Jul 21)

Hi Vicky,
Yes, I think there are several of us on this forum. Nowadays it is quite rare to transplant for CML but there are people who either do not respond well to TKI therapy in general, or

by V1ck1 (Jul 21)

Has anyone in here had a bone marrow transplant?
Category: Treating CML

Replies: 2

Last updated: 21 July 2016
sandy craine on 7 July 2016

Category: Treating CML

Replies: 3

Last updated: 9 July 2016

Positive recommendation of bosutinib (Bosulif) from NICE CDF Rapid Reconsideration
by chrissie (Jul 9)

Hi David and Sandy
Thank you very much for all you have done and great news on the NICE decision. It feels safer to have more options on the meds. front. I certainly feel happier to now there

by sandy craine (Jul 8)

Hi Nigel,
I have now fixed the link to the NICE press release- and yes, for the moment it is only available through the CDF until the FAD is implemented which I think is within 90 days? -
see

by nigel (Jul 7)

Hi David, that is very good news, thank you for the update, and all you have done, along with our patient representative in getting the rapid review through, and with a positive outcome.

by sandy craine (Jul 7)

We are very pleased that the outcome of the NICE Cancer Drugs Fund Rapid Reconsideration of bosutinib has resulted in a positive recommendation for its routine use in the NHSE in England for all the
Category: Treating CML

Replies: 3

Last updated: 9 July 2016
MartinZA on 2 July 2016

Category: Treating CML

Replies: 3

Last updated: 3 July 2016

ELN or NCCN?
by MartinZA (Jul 3)

Dear Sandy and David
Thank you so much for your quick response and for your kind and wise words. I have read so many of your replies to other CML patients and your words carry a great deal of

by David Fitz (Jul 2)

Hi Martin,
Sorry for the short message. I don't have time right now for a long one but wanted to reply.
I too take dasatinib. After almost 2 years from diagnosis I was above 1%. Another 18

by sandy craine (Jul 2)

Hi Martin,
I understand why you are disappointed but you should temper your disappointment with the knowledge that this is not an exact science - time of testing and consequent pcr result. PCR is

by MartinZA (Jul 2)

Hi everyone
I have just received my six-month results after being on dasatinib since December 4 2015 and I am hugely disappointed. BCR-ABL is only at 1.4% from 72% at diagnosis and only a small drop
Category: Treating CML

Replies: 3

Last updated: 3 July 2016
Jmlevin on 23 June 2016

Category: Treating CML

Replies: 5

Last updated: 29 June 2016

New Here CML
by chrisk (Jun 29)

Hi Justin,
I am a 60 year old male diagnosed 2 months ago and was started on Nilotinib shortly after the diagnosis. I was only on Nilotinib for 2 weeks (sample pack) while the insurance companies

by chrissie (Jun 25)

Hi Justin
I have been on Gleevec since Sept 2009 and doing well on it. Yes, there were some side effects at first - mainly puffy eyes and leg cramps but these subsided within a few months. I was on

by Ben K (Jun 25)

Hi Justin, I was diagnosed 4 months ago and have been on Tasigna (Nilotinib) for just 2 months. I have had a very rapid response to the medication with my PCR at 4.8 after 30 days and I have

by sandy craine (Jun 24)

Hi Justin and welcome.
I am sorry that you have been diagnosed with CML so young, and therefore have to deal with all the issues that come alongside a diagnosis of a serious disease - However, the
Category: Treating CML

Replies: 5

Last updated: 29 June 2016
MartinZA on 19 April 2016

Category: Treating CML

Replies: 4

Last updated: 6 May 2016

Some questions on responses and side effects
by MartinZA (May 6)

Hi David

Thank you so much for the kind words and support. It is as you say, and we are so fortunate to have this site to help us - just knowing that there are many more of us "out

by David Fitz (Apr 20)

Hi Martin,
Something you said in your reply struck a chord with me... "I am sure that as time goes on I will think much less about CML".
You're absolutely right in that it is very much

by MartinZA (Apr 20)

Hi Nigel
Thank you so much for taking the time and trouble to write me such a comprehensive reply. Before seeing your message, I had actually edited my thread as I thought it was too long,

by nigel (Apr 19)

Hi Martin

Welcome to the wide and varied world of CML, I mean this in the sense that there seem to be so many pieces of advice, some of which seem to conflict and many of which do not reflect
Category: Treating CML

Replies: 4

Last updated: 6 May 2016
2waterdogs on 29 April 2016

Category: Treating CML

Replies: 1

Last updated: 30 April 2016

Tasigna
by sandy craine (Apr 30)

Hi Pat and welcome to this forum. This is really early days for you.... only day 4 on therapy, so it is not surprising that you feel you are still in denial about the whole thing. I think I can say

by 2waterdogs (Apr 29)

Hi!
Brand new here...Just diagnosed 3 wks ago. I'm just starting Tasigna (4 days ago) and I'm wondering how long till we see results that (hopefully) show it is working.
Category: Treating CML

Replies: 1

Last updated: 30 April 2016
cablock69 on 9 April 2016

Category: Treating CML

Replies: 1

Last updated: 9 April 2016

Concerned family member
by sandy craine (Apr 9)

Hi,
I'm sorry to hear your cousin is suffering form what sounds like side effects of therapy. As here doctor has told her she is in remission it is unlikely that it is CML that is causing

by cablock69 (Apr 9)

My cousin has CML. Has been on Sprycel. Blood tests show she is in remission. However, she continues to suffer with excessive fatigue, back spasms, dizziness, inability to fall /
Category: Treating CML

Replies: 1

Last updated: 9 April 2016
rsgiles on 2 March 2016

Category: Treating CML

Replies: 1

Last updated: 2 March 2016

Question about Generic Gleevec
by David Fitz (Mar 2)

Hi,
I think we are certainly going to see insurance firms insist on generic imatinib from now on when imatinib is prescribed. It's clearly a decent cost saving for them.
In theory, there ought

by rsgiles (Mar 2)

I just tried to refill my prescription for Gleevec but my insurance company wants to give me the generic version. Does anyone have any experience with the generic version, is it as good as Gleevec.
Category: Treating CML

Replies: 1

Last updated: 2 March 2016
johnw1001 on 31 January 2016

Category: Treating CML

Replies: 3

Last updated: 8 February 2016

Generic imatinib again -some updates
by nigel (Feb 8)

Hi John
Thanks for a very interesting and detailed post and synopsis with regard to Generic Imatinib. I likewise shared your concerns with regard to the potential change that is on the way. However

by johnw1001 (Feb 5)

Hi Moirah,
Thanks for reading my posting and replying .Welcome to the CML/Glivec club -yes it certainly keeps us alive .Trust you are doing well in your first year which can be quite challenging.I

by Moirah (Feb 3)

Thank you for posting this. This is something im very worried about i was diagnosed july last year and doing well last pcr 6 months 0.067%
Can we really ask for monthly pcrs if changed to the

by johnw1001 (Jan 31)

Hi All,
There have been a few threads on this before and this included a posting from myself so no apologies for another separate thread as this for many of us will probably involve a switch from
Category: Treating CML

Replies: 3

Last updated: 8 February 2016
nigel on 28 January 2016

Category: Treating CML

Replies: 1

Last updated: 29 January 2016

Dr. Michael Mauro speaks after the ASH 2015 conference about CML
by sandy craine (Jan 29)

Thanks for the link Nigel.... I tried to put this on our video section but Patient Power will not give permission for that- which is a shame as they used to share freely. But at least we can watch

by nigel (Jan 28)

Dr. Michael Mauro speaks after the ASH 2015 conference about CML, where we are, and where we are going, together with some brief detail of AML 001 a "4th Generation" inhibitor.
Category: Treating CML

Replies: 1

Last updated: 29 January 2016
cdaugh22 on 20 January 2016

Category: Treating CML

Replies: 7

Last updated: 27 January 2016

Looking for a post-transplant patient to ease concerns
by darley (Jan 27)

I try to not worry about what I can't control and effect. I also try to stay positive and hopeful. I've done that in a variety of ways. It helps because my partner in life

by cdaugh22 (Jan 27)

Darley,
I'm so sorry you went through all of that to get where you are today. It sounds like you are a very positive person though and that is why you have made it through that incredibly

by cdaugh22 (Jan 27)

Sandy,
He did have mutation testing done and it was negative. His platelets got as low as 20. He is suppose to go to the Mayo Clinic hopefully sometime next month so we can see the CML specialist

by darley (Jan 23)

How old were you at the time of transplant? What phase were you diagnosed in? Did you fail previous TKIs prior to transplant? How have you been doing since the transplant? Sorry for all the ?????
Category: Treating CML

Replies: 7

Last updated: 27 January 2016
johnw1001 on 8 December 2015

Category: Treating CML

Replies: 1

Last updated: 8 December 2015

A new TKI on the horizon-Radotinib approved by Korean FDA
by sandy craine (Dec 8)

Hi John,
thanks for this post.... there is link to ASH abstract re: a phase 3 comparative trial here:
476 Efficacy and Safety of Radotinib Compared with Imatinib in Newly Diagnosed Chronic

by johnw1001 (Dec 8)

Hi All,
Have just been looking at what papers on CML are being presented at the ASH Conference in Orlando this week and note the topical issue of the potential for a new TKI Radotinib (IY5511HCL) to
Category: Treating CML

Replies: 1

Last updated: 8 December 2015
Ivan on 1 December 2015

Category: Treating CML

Replies: 2

Last updated: 1 December 2015

Greetings
by Ivan (Dec 1)

Thank you, for the welcome, Sandy. I've already read quite a lot, but I still have to learn much more and actually experience it first hand.
Ivan

by sandy craine (Dec 1)

Hi Ivan,
Welcome to this forum and website. I suggest you do not try to learn too much too fast, so best to visit our CML facts page to start with:
http://www.cmlsupport.org.uk/section/10-facts-

by Ivan (Dec 1)

Hello everyone,
My name is Ivan and I'm 30 years old and I've been diagnosed with CML on Oct. 26. I just went for a routine check up and they found, that my WBC was 52000. I'm waiting to
Category: Treating CML

Replies: 2

Last updated: 1 December 2015
Triumphant on 23 November 2015

Category: Treating CML

Replies: 2

Last updated: 24 November 2015

What to do next?
by Triumphant (Nov 24)

Thank you Sandy. His last wbc was 102,000. He had the enlarged spleen on Imatinib but it even worsened in the first weeks of taking Nilotinib. The side pains stopped on its own but the headaches,

by sandy craine (Nov 23)

Hi, I am sorry to hear of your husbands problems getting access to nilotinib (Tasigna). I assume you are treated in the US as you use the brand name Tylenol for paracetamol/pain killer.
To

by Triumphant (Nov 23)

My husband was diagnosed in 2011 with CML, started on gliveec , 400 mg. later increased to 600 mg.
After 3 years, they said he had developed a resistance to the drug and should switch to
Category: Treating CML

Replies: 2

Last updated: 24 November 2015
Lienke SA on 25 October 2015

Category: Treating CML

Replies: 0

Last updated: 25 October 2015

Tasigna with peg interferon
by Lienke SA (Oct 25)

Hi!

Are any of you on the Tasigna combined with pegylated interferon trial? Or any other tki in combination with peg interferon. Eg this one:
https://www.clinicaltrials.gov/ct2/
Category: Treating CML

Replies: 0

Last updated: 25 October 2015
johnw1001 on 6 October 2015

Category: Treating CML

Replies: 0

Last updated: 6 October 2015

Imatinib and mechanism of action of Resveratol on IM resistant cell lines
by johnw1001 (Oct 6)

Hi Sandy,
There was mention in the press recently of the potential benefits of dosing with Reservatol for patients in the early stages of dementia of the Alzheimer type.
Some years ago there
Category: Treating CML

Replies: 0

Last updated: 6 October 2015
david_a on 22 September 2015

Category: Treating CML

Replies: 5

Last updated: 5 October 2015

Off DESTINY
by darley (Oct 5)

Oh dear you have had a bad time!     Glad you can still see the black humour and there is something VERY ironic about breaking your arm at "Keep Fit".

by chrissie (Oct 5)

Just to update re destiny. My results are not good enough (having the 3rd blip of 0.1%pcr in month 11) to come off meds altogether. Decision taken with consultant in clinic 2 weeks ago. Whether i

by darley (Oct 5)

I've only just seen this post today. I'm SO sorry that you've not had the results you would have hoped for.   I'll be really interested in knowing what your

by nigel (Sep 23)

Hi David, really sorry to hear that you have had to come off destiny, sure all will go well and numbers will fall away again quickly. All the best and keep us posted   Nigel
Category: Treating CML

Replies: 5

Last updated: 5 October 2015
LS on 28 September 2015

Category: Treating CML

Replies: 4

Last updated: 5 October 2015

Transplantation
by darley (Oct 5)

That's how I first presented over 20 years ago.

by sandy craine (Oct 4)

Blast phase CML is very similar to the way Acute Leukaemia's behave. It is possible for Chronic phase CML to 'miss' the middle stage (accelerated phase) and develop into Blastic/acute

by LS (Sep 29)

Indeed, diagnosed 2 months ago with ALL Philadelphia +. Treatment with lighter chemo and Glivec. Blasts decreased rapidly to 0.11% but then, some 3 weeks ago a high level (some 35% ) of Philadelphia

by sandy craine (Sep 28)

Hi, from what you say your friends initial disease with CML went undiagnosed? Or was he diagnosed with Ph+ ALL? I assume he will now be treated with high dose chemotherapy to get rid of the
Category: Treating CML

Replies: 4

Last updated: 5 October 2015
Bmckenna on 10 August 2015

Category: Treating CML

Replies: 6

Last updated: 5 October 2015

Newly diagnosed cml- reposted from out of date thread below
by darley (Oct 5)

Don't be alarmed by stories of what WILL happen and how you WILL feel. Frankly it's the reason I never joined support groups. I strongly believe attitudue is

by Beekayporter (Oct 5)

I have really bad joint and bone pain, like you arms, hands but worse in the lower leg area, feels like deep bone pain. Doctor prescribed Tramadol 4 times a day, it really works. Hang in there, the

by Bmckenna (Sep 6)

Hi David, Kimberly and Olivia,

I'm still trying to figure out how to find my comments and peoples replies. Lol! I just saw your replies and wanted to say thanks!!! I have so many questions and

by Olivia (Aug 13)

Hi Kimberley
I've been taking imatinib for nearly 6 years now. I was 66 when I was diagnosed, and, like your mum, have grandchildren and want to see them grow up. So far, I'm managing that, and hope
Category: Treating CML

Replies: 6

Last updated: 5 October 2015
RodM on 24 September 2015

Category: Treating CML

Replies: 2

Last updated: 24 September 2015

Guardian Article - Cancer Drug costs in the UK
by Lucas (Sep 24)

here in brazil dasatinib is cheaper than glivec for market reasons. we have only imatinib (generic one) for first line therapy here and dasatinib is the most used second line therapy here.

by David Fitz (Sep 24)

My understanding was that Dasatinib (100mg) was available to the NHS at a cost of £2504.96p per 30 day cycle (from section 3.4 here), which is over £30,000 a year. That's still less

by RodM (Sep 24)

http://www.theguardian.com/business/2015/sep/23/uk-cancer-patients-being...

I didn't realise that Dasatinib in Brazil is sold at less than half the cost of the UK, or that it's over
Category: Treating CML

Replies: 2

Last updated: 24 September 2015