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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
David on 3 September 2015

Category: Treating CML

Replies: 1

Last updated: 3 September 2015

New Treatments
by sandy craine (Sep 3)

Hi David,
Thanks for posting the link to this article. Having read the detail in this one- and another one on the BBC website here: http://www.bbc.co.uk/news/health-34127096 - I think it is highly

by David (Sep 3)

The Times today (3 September, page 21) comments on research in the USA published in the journal, Nature, with an accompanying Editorial by Tessa Holyoake and David Vetrie of Glasgow University. The
Category: Treating CML

Replies: 1

Last updated: 3 September 2015
FullofHope on 28 August 2015

Category: Treating CML

Replies: 2

Last updated: 30 August 2015

Please help me
by darley (Aug 30)

Well said Sandy.
I can thoroughly endorse what you said and just from having had the personal experience of being at acute phase when I was first diagnosed and undergone years of treatment without

by sandy craine (Aug 29)

Hi,
Your experience of TKI therapy is unfortunate to say the least. I have not heard of many people with such a strong negative reaction that it would make them stop therapy and risk progression of

by FullofHope (Aug 28)

I have been fighting CML since 2013. The treatment was killing me. Kidneys, heart issues, etc. What number is at "acute" and what number is " Blast." I am not willing to stay on
Category: Treating CML

Replies: 2

Last updated: 30 August 2015
Steven Davies on 18 August 2015

Category: Treating CML

Replies: 4

Last updated: 25 August 2015

11th cancerversarry
by darley (Aug 25)

I've just past my 21st Anniversary this year.
Thanks to Leukaemia Research, medical science, support of family and friends and a huge measure of good luck :)

by sandy craine (Aug 23)

Hi Steven,

just to join with others and say well done. Thanks for posting this anniversary here, it will give a lot of those who are new to CML great confidence for their future.
Best wishes

by Moirah (Aug 19)

Fantastic xxx

by chrissie (Aug 19)

Great result. Shows us all that if we keep taking the tablets, we may all get there one day.
Best

Chrissie
Category: Treating CML

Replies: 4

Last updated: 25 August 2015
Lucas on 17 August 2015

Category: Treating CML

Replies: 9

Last updated: 26 August 2015

just want to share good news
by wshi2001 (Aug 26)

Lucas,I am so happy for you as you finally found the best medication for your problem. This is already MMR4.5. Inspiring news for everyone.

William

by Lucas (Aug 21)

thanks, david! yes! i'm in MMR4!! still can't believe in it!! hope you're doing great!

by Lucas (Aug 21)

thank you so much, sandy. i had 2 pcrs in a 15 day gap (2 different labs) just to see how good i was and to find out what was the sensibility of my local lab). in my local lab i was pcru and in the

by sandy craine (Aug 21)

Dear Lucas,
so good to hear you're doing so well on nilotinib/Tasigna..... great per result and the bonus is that your Q of L is good. After a shaky start with imatinib you must be so relieved to
Category: Treating CML

Replies: 9

Last updated: 26 August 2015
wshi2001 on 1 August 2015

Category: Treating CML

Replies: 5

Last updated: 4 August 2015

Would Imatinib work again for me?
by David Fitz (Aug 4)

Hi William,
I am not 100% sure on the time it takes for dasatinib to completely wash out of your system, but when I dropped imatinib my consultant and I calculated the half lives of the drug, and

by wshi2001 (Aug 4)

Thanks Sandy, your support means a lot to me. My heart pounding problem has improved a lot, I would say 70% of symptom went within 2 days, and I can finally sleep well at night. I will make an

by sandy craine (Aug 2)

Hi William,
sorry to read of your experience.... especially as you were responding well to imatinib... as David has said in his post - ELNet recommendations are for 12 months not 6, and even then a

by wshi2001 (Aug 2)

Thanks David, I guess symptons and side effects varies from one to the other. Heart pumping is the main reason for me to switch back to Imatinib. And with Imatinib, I don't really have too much of
Category: Treating CML

Replies: 5

Last updated: 4 August 2015
Gst on 23 July 2015

Category: Treating CML

Replies: 13

Last updated: 8 August 2015

Delaying a SCT
by darley (Aug 8)

I hope everything goes as well as possible.

by sandy craine (Aug 4)

Hi G,

I am glad you are planning a reduced intensity SCT. This is the protocol I had but with post transplant TKI therapy to ensure effective control of any residual disease and keep it at a

by Gst (Aug 3)

Hello again,
I'm good thanks but still very anxious as it's not long now before I'm admitted. Your thread has made me think about it all this evening and the fact that the SCT will be life changing

by Gst (Aug 3)

Hi,
I am planning for a reduced intensity SCT.
Category: Treating CML

Replies: 13

Last updated: 8 August 2015
chrissie on 21 July 2015

Category: Treating CML

Replies: 17

Last updated: 8 September 2015

DESTINY update
by chrissie (Sep 8)

I'm into the 11th month now. Just got my PCR back from HH for Month 10 after a 3 week wait - still hanging in there at 0.034% IS after a couple of earlier blips. I guess as we're tested every 4

by darley (Aug 30)

Check up last week and all remains well and good so far. After 15 years on imatanib if all remains well then this could be my last month on it :)

by darley (Aug 19)

I'm a month behind you. I go to Leeds next Wednesday and if everything is good that will be me stopping glyvec after 15 years on it.

by chrissie (Aug 18)

..... with your treatment free "new" life. You've certainly got nice low PCRs well sustained over the past year. We shall all be watching with interest, so please keep us posted.
Grapefruit for
Category: Treating CML

Replies: 17

Last updated: 8 September 2015
Gst on 30 May 2015

Category: Treating CML

Replies: 4

Last updated: 5 June 2015

PCR levels have gone up and possibility of a stem cell transplant
by sandy craine (Jun 5)

Hi,

You are not yet at the full dose of bosutinib (500mg) so if I were you I would want to try that before making any decision to go to transplant.

If your mutation test (which I thought

by darley (Jun 4)

I was diagnosed a long time ago and before the likes of imatanib etc.
I was on anything and everything available at that time and including interferon A and all to no avail.
I ultimately had a

by Gst (Jun 1)

Hi Luisa,
So nice to hear from you and reading your response. Just to start with I had a bone marrow biopsy done today at Kings and should get the results in 2 weeks time. Its so good that you have

by Luisa (May 31)

Hi,

Your situation sounds very familiar - the same thing is happening to me.Diagnosed over 2 years ago, I have been on bosutinib for over a year after failing to respond satisfactorily to
Category: Treating CML

Replies: 4

Last updated: 5 June 2015
sandy craine on 11 May 2015

Category: Treating CML

Replies: 25

Last updated: 11 June 2015

Question 4
by wshi2001 (Jun 11)

I stopped twice since dx. First time, 2 months into Glivic treatment my platelets went below 40, in fact white cell is also down to 1. After consulting with my doctor, I stopped for 1 week followed

by Parklife (Jun 7)

* Are you tempted to try stopping treatment/dose reduction outside of a clinical trial?
I am not on trial but hope I can add my two pennies worth so to speak. Yes to the question and I have done on

by chrissie (May 28)

Hi Simon
You mention in your post that it's hard to cut a 400mg tablet in half. Did you know there is such a thing as a tablet cutter - available in any pharmacy? It cuts it inside a container so

by darley (May 28)

Are you tempted to try stopping treatment/dose reduction outside of a clinical trial?
No way! Never! Not in a month of Sundays! That would be stark staring bonkers!
I went on Imatanib when it
Category: Treating CML

Replies: 25

Last updated: 11 June 2015
The Wife on 28 April 2015

Category: Treating CML

Replies: 3

Last updated: 25 May 2015

Imatinib/ Bosutinib Trial
by Fran (May 25)

Hi,

I'm on the same trial - I was diagnosed on Tuesday and started taking bosutinib on Saturday (quite scary how quickly things are moving - I only went to my GP with suspected anaemia five

by sandy craine (Apr 30)

Hi and welcome,
I totally endorse what Olivia has said about clinical trials for CML. Both imatinib and bosutinib are very effective treatments for chronic stage CML with bosutinib being one of the

by Olivia (Apr 29)

Hello, and welcome to the group. This site is wonderfully useful, and most if not all your questions will get some sort of answer from someone who has faced similar problems.
For myself, I have

by The Wife (Apr 28)

My husband was diagnosed with CML 12 days ago- so we're new at this. He has yet to start treatment. He has been offered a chance to enter a clinical trial designed to show whether Bosutinib is a
Category: Treating CML

Replies: 3

Last updated: 25 May 2015
David Ryner on 13 April 2015

Category: Treating CML

Replies: 1

Last updated: 6 May 2015

Ponatinib approved for use in Scotland
by David Ryner (May 6)

CML Support has now written to all 14 local Health Boards in Scotland advising them of the SMC's recommendation for the use of ponatinib for the treatment of CML in all the indications (or clinical

by David Ryner (Apr 13)

Very good news today from the NICE equivalent in Scotland, the Scottish Medicines Consortium (SMC), with ponatinib approved for use in Scotland in what are called all its licensed indications. That
Category: Treating CML

Replies: 1

Last updated: 6 May 2015
nigel on 27 February 2015

Category: Treating CML

Replies: 8

Last updated: 28 May 2015

DESTINY Trial - Asked to join
by darley (May 28)

I've just reported on one of the others that I've just had my month 8 tests and all remains absolutely spot on perfect.
Positive is that I've not had any cramps at all for over 3 months now. They

by nigel (May 28)

Month 2 of DESTINY completed, result back today 0.006, lowest yet, realise it is the same as last month in effect, but still nice to see a tiny fall, and no increase after 2 months 1/2 dose. What

by chrissie (May 6)

A great result, Nigel. The same thing happened to me. For 5+ years I'd also been around 0.03 -0.07 and then my first result on DESTINY half dose Imatinib was 0.008 -the lowest ever. After a wee

by sandy craine (May 6)

Hi Nigel, well I bet you weren't expecting and extra zero on a reduced dose? amazing news- congratulations.
Sandy
Category: Treating CML

Replies: 8

Last updated: 28 May 2015
sandy craine on 14 February 2015

Category: Treating CML

Replies: 13

Last updated: 27 May 2015

Question 1: How do you feel about generic imatinib being introduced after the patent expires in 2016?
by Simon Clayson (May 27)

I would expect any generic drugs that are available through official UK channels to have the same quality control as the original drug. As such my wife would be happy to take the generic version

by Richard42 (Feb 21)

It will be interesting to see what does happen with patients already on Glivec. Doctors in the UK prescribe generically ie they write down "imatinib 400mg", not "Glivec 400mg". All things being

by darley (Feb 20)

My concern is that the NHS is so dysfunctional when it comes to procurement and management. Also so wasteful. They're over complicated, bureaucratic. No-one takes responsibility. They're

by sandy craine (Feb 19)

Hi Nigel,
Yes, NICE review all their recommendations periodically- TKIs for CML in both first and second lines were reviewed last year (September 2014).

TA251-1st line and TA241-2nd line are
Category: Treating CML

Replies: 13

Last updated: 27 May 2015