type: Article

Natural Killer Cell Counts Are Associated With Molecular Relapse-Free Survival After Imatinib Discontinuation

type: Article

Maternal, Fetal, and Neonatal Imatinib Levels With Treatment of Chronic Myeloid Leukemia in Pregnancy

type: Article

Strategies for Stopping TKIs Growing Clearer

type: Article

DESTINY: CML Patients With Stable Molecular Responses Safely Halved TKI Dose

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Pinned DESTINY - Updates from those enrolled on the trial

Hi LynnGood to meet you too - all the best post-... by Richard42 (May 25)

Hi Richard,It was lovely to meet you on Monday. It was me... by lynnsch (May 17)

Congratulations - not just to you, but to all the people... by Olivia (May 11)

Such great news, Richard. I wonder if you are the first in... by chrissie (May 9)

Treating CML

89 posts

5,273 Views

25/05/2017 - 12:04pm
By

Educational resources for children

Thanks for taking the time to reply David - much... by markmcd (Jun 27)

Hi Mark,That's a great question. I am not sure there are... by David Fitz (Jun 26)

Hi everyone. I realise I may be going over old ground, but... by markmcd (Jun 25)

About CML

3 posts

30 Views

27/06/2017 - 9:00am
By

Reduced dose

After taking sprycel from last 15 days with one day 50 mg... by ayaz ahmad magray (Jun 27)

1 posts

7 Views

27/06/2017 - 7:19am
By

Newly diagnosed and sharing some experience with Tasigna

Davide and Harsh Thank you very much for sharing your... by Naj (Jun 27)

Hi , I am 38 years old,diagnosed in last year NOV end and... by Harsh (Jun 26)

Hello!Here's another member of the "diagnosed at 38" club,... by davewell (Jun 26)

sprycml, Thank you very much for your response. Yes,... by Naj (Jun 26)

6 posts

114 Views

27/06/2017 - 1:58am
By

Headaches - Please help!

Hannah, this sounds awful! You did say you suffer migraines... by sandy craine (Jun 24)

Hi Hannah,That sounds hard to deal with. I'm sorry to hear... by David Fitz (Jun 24)

Hi I'm Hannah and I'm 24 years old. I was diagnosed 15th... by Hannah Geddes (Jun 24)

Side effects

3 posts

52 Views

24/06/2017 - 4:12pm
By

Travel insurance for CML, without screening

It is perhaps worth some further comment about cover for... by IvanOpinion (Jun 21)

hello allfor my child with CML I booked my insurance... by Irishmammy (May 11)

Hi Rod,Given the half-life of TKIs, I'm not entirely... by David Fitz (Apr 28)

I also have insurance through my bank/credit card but with... by RodM (Apr 28)

11 posts

526 Views

21/06/2017 - 12:20pm
By

Generic imatinib and associated side effects.

Hi Dear Stuart, t too have been started on this... by Rebecca Bonnell (Jun 20)

hi David. my generic imatinib was TEVA imatinib.I even... by iffat (Jun 13)

That is certainly interesting. From speaking to medical... by David Fitz (Jun 3)

hello i took the generic imatinib for about three month,i... by iffat (Jun 3)

Side effects

11 posts

324 Views

20/06/2017 - 11:54pm
By

Alternatives to imatinib

Hi Alan,Just a few comments .Have experienced a few years... by johnw1001 (Jun 20)

Thanks David, very helpfulAlan by alangent (Jun 14)

Hi!Nilotinib prolongs the QT interval of your heart, to get... by David Fitz (Jun 14)

I was diagnosed June 2011. I joined the Spirit 2 trial on... by alangent (Jun 14)

Treating CML

4 posts

134 Views

20/06/2017 - 3:57pm
By

slow response to imatinib

That's good news. Sometimes slow and steady can win the... by David Fitz (Jun 17)

hello David i got my latest pcr and it was 0.6 pretty good... by iffat (Jun 14)

I had a sub optimal response at 3 months (we switched to... by EvaH (Apr 18)

hi David thanks for replying, your answer was very clear... by iffat (Apr 6)

6 posts

274 Views

17/06/2017 - 9:11am
By

18th month PCR RESULT , A Blip and Next Step ?

Congratulations - that result is well into MMR territory!... by David Fitz (Jun 14)

i got the last result for PCR test today. and i guess the... by alliswell (Jun 13)

we made a small change to our program . 23/05 meeting... by alliswell (May 23)

david hi and thanks again yeap , your last message... by alliswell (Apr 28)

Blood tests

9 posts

337 Views

14/06/2017 - 3:04pm
By

New to forum- a few q's

Hi harsh here, I diagnosed with cml in blast phase in... by Harsh (Jun 13)

Hi there,I'm new to this forum so thought I'd say... by Sindi (Jun 12)

2 posts

136 Views

13/06/2017 - 5:09pm
By

Petechia - red dots on skin

Hey folks,just an update on Petechia and clay.I went to my... by davewell (Jun 13)

I hope compress it the exact term.Basically, first you need... by davewell (Jun 12)

Hi David: I have those red dots too. Glad to know the... by Philip (Jun 12)

Where did you get the clay compress from? I've never... by Sindi (Jun 12)

12 posts

331 Views

13/06/2017 - 4:51pm
By

PCR and leg pain

Thanks Ellie Regina Grey for the wishes and the link to pcr... by Harsh (Jun 13)

Hello there, I'm terribly sorry to hear about your bone... by Ellie Regina Grey (Jun 12)

Hi everyone, I had my 6th month PCR last week.My bcr abl... by Harsh (Jun 11)

Other conditions

3 posts

127 Views

13/06/2017 - 4:13pm
By

glivec

Anyone developed anxiety... by micheller (Jun 12)

1 posts

73 Views

12/06/2017 - 6:06pm
By

PCR - 3month result

Thanks Sandy, it is always very reassuring to hear facts... by Ellie Regina Grey (Jun 12)

Ellie,As Dave has already said... 0.9% is an excellent... by sandy craine (Jun 10)

Thank you, Dave. I find the extra information you posted... by Ellie Regina Grey (Jun 10)

Hello,Dave here.0.9% at three months is an excellent result... by davewell (Jun 9)

5 posts

151 Views

12/06/2017 - 6:43am
By

Platelets

my mother had a similar situation with gleevec , her values... by alliswell (Jun 11)

Sandy thanks your adivice give me lot of suport when my... by ayaz ahmad magray (Jun 10)

Obviously, your doctor is, rightly, being cautious because... by sandy craine (Jun 10)

With decrease of dose of sprecel from 100 mg to 50mg my... by ayaz ahmad magray (Jun 10)

4 posts

103 Views

11/06/2017 - 7:18pm
By

Bcr abl and bone marrow transplant

. by Harsh (Jun 11)

Thank you for your detailed response and advice !!.I will... by Harsh (Mar 6)

Good news... you have responded well to nilotinib within... by sandy craine (Mar 5)

Hi sandy, After your advice I spoke to my oncologist about... by Harsh (Mar 5)

Treating CML

4 posts

236 Views

11/06/2017 - 3:07pm
By

Have you reduced your dosage due to deep response? Share your experience

Hi Eva,You might be interested in this article which links... by sandy craine (Jun 10)

Hi Richard: I was very happy to read your post. I... by Philip (Jun 9)

Hello Olivia, I was diagnosed in 2009 as well. After... by Philip (Jun 9)

Thanks All for your replies so far - Please do keep them... by EvaH (Jun 5)

Treating CML

13 posts

297 Views

10/06/2017 - 5:37pm
By

By

I have been on dasatinib - sprcyel since February of 2009... by Philip (Jun 9)

Would decreased dose of dasatinib increase platelates in... by ayaz ahmad magray (Jun 7)

2 posts

82 Views

09/06/2017 - 6:19am
By

Stopping (or not) the medication?

Hi Karinne, Thanks for the post I would comment as... by nigel (Jun 8)

HiDiagnosed in 2003. 1st in Wales prescribed Glivec... by simy99 (Jun 8)

I think that would be a great discussion by Philip (Jun 7)

Hello everyone,I would like to open a discussion about... by Karinne (Jun 6)

Treating CML

4 posts

124 Views

08/06/2017 - 9:09pm
By

Buying Imatanib in UK when you are outside NHS

Hi EvaI would suggest the following .Most private hospitals... by johnw1001 (Jun 7)

Be aware that there could be a VAT implication of importing... by David Fitz (Jun 6)

Thanks, I'll check him out. I'm looking at a... by EvaH (Jun 6)

Eva,Neither an A&E doctor or a GP would not be able to... by David Fitz (Jun 5)

Treating CML

5 posts

102 Views

07/06/2017 - 4:08pm
By

Lumpy and grumpy

Hi Davide and LucasThank you both so much for your detailed... by MartinZA (Jun 7)

Hey, Martin. I have some words: as you know, i had... by Lucas (Jun 7)

Hello Martin.I was diagnosed in april 2016, in what they... by davewell (Jun 6)

Hi everyone My 18 month PCR test is being done... by MartinZA (Jun 6)

Side effects

4 posts

135 Views

07/06/2017 - 6:42am
By

Blood counts decrease

Hi there,Dasatinib / Sprycel works very well on white cells... by David Fitz (Jun 6)

To start treatment for cml cp for newly diogonesed pateient... by ayaz ahmad magray (Jun 6)

2 posts

112 Views

06/06/2017 - 9:26am
By

Help

Hi AhmadIts a very good idea to become your own specialist... by EvaH (Jun 6)

Hello, I've been on Sprycel - dasatinib since February... by Philip (Jun 4)

Thanks david. I m from kashmir here is nt health system so... by ayaz ahmad magray (Jun 4)

I was diagnosed at about the same age as you. Assuming you... by David Fitz (Jun 4)

9 posts

152 Views

06/06/2017 - 1:10am
By

turmeric/curcumin update

Has anyone got up to date info as to whether this works?... by sg3 (Jun 5)

1 posts

97 Views

05/06/2017 - 5:56pm
By

Hopefully exciting times ahead - Sprycel dose reduction!

HI Ian: I joined CML Support about a year and one... by Philip (Jun 5)

Ian,That's great ... and assuming an IS calibrated... by David Fitz (Apr 13)

6 Month UPDATE: Have just had second 3 month test results... by ian hinley (Apr 13)

0.001%.... Ian this is equivalent to MR5 which is much... by sandy craine (Jan 6)

Treating CML

9 posts

387 Views

05/06/2017 - 3:06pm
By

Tasigna and the fasting the period

During the fasting periods, the official guidance on the... by David Fitz (Jun 5)

Why with tasigna is it no or minimal alcohol? by sg3 (Jun 3)

Regarding nilotinib and fasting: as David has already... by sandy craine (Jun 3)

Hi - it's exceptionally important to fast appropriately... by David Fitz (Jun 2)

5 posts

110 Views

05/06/2017 - 10:08am
By

New Diagnosis

Hi JenJen10: I was diagnosed with CML on 23 February... by Philip (Jun 4)

Thank you so much! That hope is what I need right now. by jenjen10 (May 15)

Thank you for going into so much detail. I feel like, even... by jenjen10 (May 15)

Hi JenThere have been several CML pregnancies and one... by chrissie (May 13)

Getting help

13 posts

283 Views

04/06/2017 - 9:51pm
By

Help

Hello: I replied to your other post on this question. Philip by Philip (Jun 4)

I was diagonosed cml cp in 20th april 2017 and doctor give... by ayaz ahmad magray (Jun 4)

2 posts

85 Views

04/06/2017 - 8:27pm
By

CMR Response and Discontinuation of Treatment

Hi All! Here’s my story.I was diagnosed with... by Philip (Jun 4)

1 posts

97 Views

04/06/2017 - 7:59pm
By

side effects of glivec

Hi,I am not sure that loss of feeling in both legs and... by sandy craine (Jun 3)

I have been on glivec almost five years and recently lost... by micheller (May 20)

2 posts

167 Views

03/06/2017 - 2:03pm
By

CML Horizons conference 2017: call for questions

Thanks David, looking forward to it. Additionally, I have... by nigel (May 25)

Nigel Deekes and I are both attending the CML Horizons... by David Fitz (May 25)

2 posts

106 Views

25/05/2017 - 9:11pm
By

Hammersmith CML Patient Carer Group Meeting Saturday 10th June 2017

Hi ID Like to attend, as I'm passing through London ...I... by EvaH (May 23)

EVERYONE WELCOME to the LEUKAEMIA PATIENTS SUPPORT GROUP,... by Steven Davies (Apr 17)

Getting help

2 posts

92 Views

23/05/2017 - 8:36pm
By

getting back to 'normal'?

Hello Mitraa,Having just been diagnosed 6 months ago and... by Mike B (May 21)

Hi Mitraa,I think in the early days - and three months... by David Fitz (May 20)

hello to every oneim so happy to hear success stories from... by Mitraa (May 20)

Organising your life

3 posts

157 Views

21/05/2017 - 6:59am
By

Stay course or switch TKI

Sounds like a sensible plan. Best of luck! by David Fitz (May 18)

Thanks for the comments. After meeting with my oncologist... by Mike B (May 18)

Hello and welcome, MikePersonally, if you are doing OK on... by Olivia (May 17)

Hi Mike,There's no concensus on this really. Some... by David Fitz (May 17)

Blood tests

5 posts

145 Views

18/05/2017 - 12:54pm
By

Newly diagnosed

Thank you, David. I just met a lady who "tolerated... by Justine (May 12)

And good luck to you! And to all of us! :-) by Justine (May 12)

Thanks, I appreciate your words. Justine by Justine (May 12)

Hi Justine,As already mentioned, these are not uncommon... by David Fitz (May 11)

Treating CML

6 posts

154 Views

12/05/2017 - 12:47pm
By

New Generic Imatinib Leaflet

CML Support have recently published a new leaflet on the... by David Fitz (May 10)

Treating CML

1 posts

81 Views

10/05/2017 - 11:15am
By

Zavie's Zero Club

I was a member - can't recall the number though. ... by Richard42 (May 9)

Hello - we're trying to piece together Zavie miller... by Barbs (May 6)

2 posts

136 Views

09/05/2017 - 9:48am
By

Bone Pain

Hi Garry,Yes have had a number of episodes like this and... by johnw1001 (May 5)

Hi Garry,Though of course as others point out, not every... by David Fitz (May 4)

I was suffering from sciatica, too, and my GP recommended... by Olivia (May 4)

Hi Gary and welcome,I am not sure that changing TKI from... by sandy craine (May 3)

Side effects

5 posts

228 Views

05/05/2017 - 2:39pm
By

new to the Forum

Hi Patricia,Regarding your husbands experience of a 600mg... by johnw1001 (May 4)

Hi Patricia,Firstly congratulations to your husband for... by sandy craine (Apr 30)

Hi Patricia, Congratulations to your husband for... by David Fitz (Apr 27)

HiMy husband wad diagnosed with CML in July 2002 and was... by patriciamanning (Apr 27)

4 posts

187 Views

04/05/2017 - 4:10pm
By

Ponatinib: NICE publish their final recommendations

More good news. Thanks for posting, David. It does feel... by chrissie (Apr 28)

NICE have today published their final recommendations for... by David Ryner (Apr 28)

2 posts

114 Views

28/04/2017 - 1:12pm
By

Different generics

Hi MargaretI'm hoping to go down to 300mgs in June.... by chrissie (Apr 25)

Chrissie - thank you for the reassuring information on... by MRB (Apr 25)

Just had an answer from both my haematologist and the... by chrissie (Apr 24)

I have been taking Imatinib 400mgs from Wockhardt for the... by chrissie (Apr 24)

4 posts

138 Views

25/04/2017 - 12:26pm
By

Generic IMATINIB

thank you. It is being very useful, since some docs does... by carmeplas (Apr 25)

It is nice to see, because our doc... does not care so much... by carmeplas (Apr 25)

i used gleevec for six months then switch to teva imatinib... by iffat (Apr 23)

I had more nausea on Veenat, which is an indian generic,... by EvaH (Apr 19)

Side effects

5 posts

187 Views

25/04/2017 - 9:07am
By

Osteoporosis anyone??

Thank you everyone who answered. I feel better about taking... by chrissie (Apr 23)

Hi Chrissie, First of all , english is not my native... by alliswell (Apr 21)

My physiotherapist (!) also put me on D3 after I developed... by Richard42 (Apr 21)

Hi Chrissie,My oncologist put me on vitamin D3 supplements... by David Fitz (Apr 20)

5 posts

126 Views

23/04/2017 - 4:16pm
By

Question about PCR plateau

By the way, if you stay at MMR or better, you will most... by cmljax (Apr 23)

As long as your PCR's continue to improve, it would be... by cmljax (Apr 23)

I've had a very quick response so I cant really say... by EvaH (Apr 19)

Sorry I made a typo it's a 0.126 for the April number.... by Jyellak (Apr 13)

Blood tests

7 posts

227 Views

23/04/2017 - 2:11pm
By

reducing dosage within a year after diagnose

See my response to the post titled Have you reduced... by cmljax (Apr 23)

First of all well done on some great results and the speed... by nigel (Apr 21)

Hi, this is my first post. I'm diagnosed in october... by Greetje (Apr 21)

Treating CML

3 posts

133 Views

23/04/2017 - 1:59pm
By

Diagnosed with CML @ 6 weeks pregnant

Update! 4 days interferon alpha 2b treatment complete and... by Stacy.Langdon (Apr 23)

Welcome to the forum - keep the updates coming and I'm... by EvaH (Apr 19)

Hi All! New to the forum. Last week I was... by Stacy.Langdon (Apr 15)

Treating CML

3 posts

148 Views

23/04/2017 - 1:40pm
By

Wheat intolerance

Thanks Richard. Have been on imatinib since June and had... by Avril Dailly (Apr 21)

Hi AvrilRegarding diarrhoea, I experienced this - or at... by Richard42 (Apr 21)

Has anyone tried cutting out wheat to see if it stops their... by Avril Dailly (Apr 21)

Hi Avril,No, I haven't and I haven't heard this... by David Fitz (Apr 19)

5 posts

109 Views

21/04/2017 - 9:27pm
By

Destiny trial - successful so far

I had a couple of blips during the trial but they always... by Richard42 (Apr 21)

Just read my post and realised I did actually mean one year... by remw (Apr 19)

Thanks for posting your update - it is very good to hear... by sandy craine (Feb 1)

Hi thereCongratulations on great results.I was a bit... by Richard42 (Jan 25)

Treating CML

5 posts

190 Views

21/04/2017 - 10:41am
By

Anemia research paper

I've been reading up on anemia, as mine appears to be... by EvaH (Apr 20)

Side effects

1 posts

74 Views

20/04/2017 - 9:38am