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Stopping Drug Therapy for CML: EURO-SKI Results

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New CML Data Post Signs on Route to Treatment-Free Remission

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Frequency of rare BCR-ABL1 fusion transcripts in chronic myeloid leukemia patients

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Pinned DESTINY - Updates from those enrolled on the trial

Hi Alistair,Welcome back and good to know you have a chance... by sandy craine (Aug 1)

Hi Sandy, I've just rejoined the forum after losing touch... by AlastairC (Aug 1)

Just posted an interesting article by Dr Susan Branford on... by sandy craine (Jul 29)

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

Treating CML

92 posts

5,487 Views

01/08/2017 - 5:05pm
By

HI I'm Dax from the Philippines and was recently diagnosed with CML this year I just started taking Imatinib but its expired for 10 years

DAX: Philippines is part of GIPAPYou can get your Gleveec... by EvaH (Aug 17)

Check also with the Max Foundation if they operate in... by EvaH (Aug 17)

Hi Victor,Thank you so much to Chrissie from UK. I am... by Levs (Aug 14)

Hi VictorIt always upsets me when I read of patients unable... by chrissie (Aug 13)

5 posts

110 Views

17/08/2017 - 2:08pm
By

Headaches - Please help!

Meditation really helped with my migraines and mine were... by EvaH (Aug 17)

Hannah,I think if you feel you are not being listened to... by sandy craine (Jul 3)

Hello Hannah, I'm sorry to hear you're having a bad... by cdw5000 (Jul 2)

Hi Sandy, Thank you for your reply.My headaches are... by Hannah Geddes (Jun 30)

Side effects

8 posts

161 Views

17/08/2017 - 2:04pm
By

Nausea

Oh thats interesting!My cure for post imatanib nausea is 2... by EvaH (Aug 17)

I have been taking Imatinib 400mg for a long time. After a... by BrianUK (Jul 21)

Side effects

2 posts

157 Views

17/08/2017 - 1:59pm
By

PCR 24% but cant get lower

As a quick positive note, optimal response has an impact on... by EvaH (Aug 17)

HI John,Sorry for this late replay as I missed your post. I... by sandy craine (Jul 29)

Ive been on Sprycel for 2 years. The first year I got down... by John Gilbert (Jul 23)

Treating CML

3 posts

154 Views

17/08/2017 - 1:56pm
By

Need some peer support.

Dear LadySo very sorry to hear about your troubles. I... by EvaH (Aug 17)

Hello,i read your post with interest as back in the 1980 s... by johnw1001 (Jul 14)

Hi, Iam sorry for your suffering from pain. I was dx in... by Harsh (Jul 11)

Hi and welcome,As you are in the US you could try... by sandy craine (Jul 11)

Side effects

8 posts

157 Views

17/08/2017 - 1:50pm
By

Immune System

Mine is great and I certainly like to put it to the test :D... by EvaH (Aug 17)

Thx for the inputs David. by Amit (Jul 20)

Amit,It can depend on the individual. Some TKIs (to some... by David Fitz (Jul 20)

Dear All: Just wanted to know how our immune system is... by Amit (Jul 20)

4 posts

91 Views

17/08/2017 - 1:45pm
By

Mental/emotional issues

Yes Justine, you are certainly not alone in feeling this... by EvaH (Aug 17)

Hi all, After having read enough of trial papers and... by Ellie Regina Grey (Jul 29)

HI All,I don't wish to frighten anyone or bring anyone down... by sandy craine (Jul 29)

Thanks, Dave and Olivia. I needed that validation!... by Justine (Jul 25)

Side effects

7 posts

237 Views

17/08/2017 - 1:42pm
By

New to this FORUM

for your other questions: Life can be pretty normal,... by EvaH (Aug 17)

I really think that stopping the TKI was a weird course of... by EvaH (Aug 17)

Hello Andy, Personally, I share similar sentiment on... by Ellie Regina Grey (Aug 13)

Hi Andy,At my diagnosis in April this year, my WBC was 280K... by Justine (Aug 11)

About CML

5 posts

137 Views

17/08/2017 - 1:36pm
By

Malaria

Many may not agree, but I really have doubts about taking... by EvaH (Aug 17)

Hi MatthewI took Malarone myself when on dasatinib and had... by MartinZA (Aug 16)

Malarone is fine. I've taken it myself with dasatinib, but... by David Fitz (Aug 3)

Hi - I am about to travel to a Malaria area - does anyone... by matthew.hulbert (Aug 3)

Drug-drug interactions

4 posts

71 Views

17/08/2017 - 1:21pm
By

Suggestion about Treating the CML

Dear Faisal Sorry about your diagnosis and welcome to... by EvaH (Aug 17)

Hello unfortunately i have been diagnosed CML Cronic Phase... by FAISAL JAVED (Aug 16)

About CML

2 posts

33 Views

17/08/2017 - 12:56pm
By

Benign lymph node swelling resembling lymphoma

Bloody hell! That all just have cranked up the stress... by David Fitz (Aug 16)

Hi everyoneThis is a follow-on message from a previous post... by MartinZA (Aug 16)

Side effects

2 posts

30 Views

16/08/2017 - 12:29pm
By

Joint and Muscle pain?

Dear JohnI have read your story and watched the video where... by MartinZA (Aug 16)

Dear John, My heart breaks when i started to read your... by Ellie Regina Grey (Aug 13)

Hi Ellie, first of all many thanks for your very kind... by Parklife (Jul 31)

HI Ellie,Well done on finding a way to deal with your TKI... by sandy craine (Jul 29)

Side effects

13 posts

4,564 Views

16/08/2017 - 9:22am
By

sprycel (dasatinib) side effects

have read that intolerance to some side effects are... by gordyboy (Aug 13)

Side effects

1 posts

50 Views

13/08/2017 - 12:11pm
By

Newly diagnosed 16yr old

Hi Claudia,As a mom my heart goes out to you. Many... by Justine (Aug 11)

Hi. My name is Claudia and I am the mother of a 16yr old,... by ClaudiaSS (Aug 11)

Children & young people

2 posts

70 Views

11/08/2017 - 10:08pm
By

Joint/muscle pain ups the ante after 5 years

If it helps I had arthritis before cml. Regarding cramps I... by Stuart Johnston (Aug 11)

Hi, I'm still on Glivec. They seem to still be supplying... by alanmc (Aug 11)

Hi Alan Has the joint pain started since you changed onto... by Stuart Johnston (Aug 11)

Hi all,I was diagnosed with CML 5 years ago (next week... by alanmc (Aug 10)

Side effects

4 posts

68 Views

11/08/2017 - 8:34am
By

Generic imatinib and associated side effects.

Good to hear, Stuart - I hope things continue well for you... by David Fitz (Aug 7)

After a discussion with my team I have been put back on... by Stuart Johnston (Aug 6)

Thanks for getting in touch Alistair. I am glad you are... by Stuart Johnston (Aug 1)

Hi. I started using the Wockhart generic imatinib about 4... by AlastairC (Aug 1)

Side effects

17 posts

543 Views

07/08/2017 - 1:32pm
By

imatinib/dasatinib/fluid retention/diarrohea/gout etc..

Hi Stuart - thanks for your reply seeing oncologist next... by gordyboy (Aug 2)

Hi Gordyboy. Regarding the fluid retention and the gout.... by Stuart Johnston (Aug 2)

Hi Sandy,Had imatinib for 12months with fluid retention (... by gordyboy (Aug 2)

Drug-drug interactions

3 posts

100 Views

02/08/2017 - 6:52pm
By

BCR-ABL results inconclusive

Hi, yes I guess how people work it out. Per microliter mine... by nurserachel (Aug 1)

Hi Rachel. Most CML cases I've been aware of show an... by AlastairC (Aug 1)

Yes it is an odd one really. My WBC varies with no apparent... by nurserachel (Aug 1)

Hi Rachel, its a little tricky to know where to start on... by AlastairC (Aug 1)

Blood tests

5 posts

158 Views

01/08/2017 - 5:32pm
By

Myeloma help!

I suggest your friend contacts Myeloma UK.... quick google... by sandy craine (Aug 1)

Hello everyone - I have had CML for over 10 years now,... by matthew.hulbert (Jul 31)

About CML

2 posts

90 Views

01/08/2017 - 4:52pm
By

Cramps

Cramps were one of the main imatinib side effects I had.... by Richard42 (Aug 1)

Hi - Yes even I get cramps in hands, abdomen and back.... by annie t (Jul 22)

Checked and Magnesium levels are fine. With a bit more... by EvaH (Apr 19)

Eva, you might want to check your magnesium levels and try... by sandy craine (Apr 2)

Side effects

10 posts

421 Views

01/08/2017 - 4:42pm
By

BCR-ABL

Hi Sandy,I met with my main doctor and he mentioned that... by annie t (Jul 30)

Hi Annie,yes 3 months to wait for another PCR does seem a... by sandy craine (Jul 29)

Thanks Sandy for the response. Actually there is no change... by annie t (Jul 22)

Annie, don't worry as your BCR-Abl ratio are still pretty... by sandy craine (Jul 22)

Blood tests

5 posts

300 Views

30/07/2017 - 9:11pm
By

Conversion levels

HI Daphne,If you already have cardiac issues then maybe... by sandy craine (Jul 29)

Hi DaphneSorry to be late in answering but I only just went... by chrissie (Jul 26)

Three months on and I'm picking up an old thread to avoid... by Daphne Lynn (Jul 24)

Good news, Daphne. It does help to have confidence in your... by chrissie (Apr 12)

Blood tests

11 posts

247 Views

29/07/2017 - 11:45am
By

My Story

Great news Chrissie.Sandy by sandy craine (Jul 29)

Brilliant! I'm so happy for you, Chrissie. by Olivia (Jul 28)

Hi OliviaJust had my PCR emailed and since starting on... by chrissie (Jul 27)

Hi ChrissieCongratulations - and I hope the test goes well... by Olivia (Jul 20)

26 posts

402 Views

29/07/2017 - 11:43am
By

Antibiotics and Imatinib

Hi Helen,Antibiotics and TKIs are routine. However a cold... by David Fitz (Jul 24)

I have been taking Imatinib for 6 months. I am pretty sure... by Helen Stokes (Jul 24)

Drug-drug interactions

2 posts

94 Views

24/07/2017 - 8:38pm
By

Patient Conference

Many thanks for the info. Helen by Helen Stokes (Jul 24)

As the moment the UK Patient conference will take place... by sandy craine (Jul 22)

I wondered if anyone knew if there was going to be a UK CML... by Helen Stokes (Jul 21)

About CML

3 posts

92 Views

24/07/2017 - 6:49pm
By

Multi Vitamins

Just wanted to find out while we are on Imatinib whether... by Amit (Jul 22)

1 posts

93 Views

22/07/2017 - 6:17am
By

CML and pregnancy

Hi Zara, City Hospital is one of the UK major centres... by sandy craine (Jul 20)

I live in Lincolnshire and I'm being treated in City... by zara786 (Jul 18)

I imagine those infections might be interferon injections... by David Fitz (Jul 17)

The video link you sent dose not open by zara786 (Jul 17)

7 posts

118 Views

20/07/2017 - 5:51pm
By

Nausea/Vomiting & Intestinal Cramping

Hi Bryn,May I make a few observations but perhaps I really... by johnw1001 (Jul 18)

My gosh Bryn, that sounds awful. In all honesty, the... by David Fitz (Jul 15)

Hi everyone! My dad was diagnosed with CML in April... by Brynhenefield (Jul 15)

Side effects

3 posts

87 Views

18/07/2017 - 5:32pm
By

Hopefully exciting times ahead - Sprycel dose reduction!

9 Month UPDATE: Have just had third 3 month test results... by ian hinley (Jul 18)

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)

Treating CML

10 posts

449 Views

18/07/2017 - 2:44pm
By

Ciprofloxacin and dasatinib

Dragging up an old thread, as I've again been prescribed... by David Fitz (Jul 17)

Thanks John, Luckily, I do not appear to have suffered... by David Fitz (Feb 18)

Thanks for this John, it is really helpful especially as... by sandy craine (Feb 18)

Hi All Two points 1.If you consider the Blood article by... by johnw1001 (Feb 18)

8 posts

189 Views

17/07/2017 - 3:25pm
By

How frequent are bone marrow biopsies?

Hi there,Just to add to what David has said it appears that... by johnw1001 (Jul 15)

There's no hard and fast rule. Many doctors are not taking... by David Fitz (Jul 15)

I'm at one-year past diagnosis, and just wondering - how... by sprycml (Jul 15)

About CML

3 posts

92 Views

15/07/2017 - 4:42pm
By

I am having difficulty understanding my PCR results.

Thanks. It didn't make sense to me and I had speculated... by rholtslander (Jul 15)

You can't go negative for a BCR-Abl PCR test. 0 is as low... by David Fitz (Jul 15)

Thank you so much David and Sandy.I had a confirmed... by rholtslander (Jul 15)

Hi and welcome,I second David's remarks... you are right on... by sandy craine (Jul 11)

Blood tests

6 posts

171 Views

15/07/2017 - 4:33pm
By

3 mo from diagnosis PCR test results

MMR means < 0.1% Bcr-Abl. Don't sweat it, most... by sprycml (Jul 15)

Just got my test results. What does this mean? Doctor... by Justine (Jul 15)

Blood tests

2 posts

90 Views

15/07/2017 - 3:22pm
By

Changes to CML Support web site

That's a good idea - I'll add it to the list, but can't... by David Fitz (Jul 14)

Can you make it so we can access our posts from our... by grells (Jul 6)

Over the coming days, weeks and months, we are making some... by David Fitz (Jul 5)

3 posts

119 Views

14/07/2017 - 1:17pm
By

Does indigestion problem affect efficacy of Tasigna?

Thanks Sandy, much appreciate for your advice. ... by wshi2001 (Jul 13)

Hi William,Normally 2 hrs is long enough for a meal to be... by sandy craine (Jul 11)

Hi, everyone,I saw a recent thread in forum about the... by wshi2001 (Jul 10)

3 posts

84 Views

13/07/2017 - 8:20am
By

10 weeks of dx

Genetic Tests used at diagnosis and in the first months of... by sandy craine (Jul 12)

After taking sprycel from diagnosis 10 weeks before from... by ayaz ahmad magray (Jul 12)

2 posts

85 Views

12/07/2017 - 1:57pm
By

Smoking

Hi Nishant,Quitting smoking is obviously going to be good... by David Fitz (Jul 9)

I'm fairly new to this. I was diagnosed in June, 2015. I am... by Nishant Parashar (Jul 8)

Organising your life

2 posts

78 Views

09/07/2017 - 9:20am
By

just saying Hi.

Nigel Thanks for the reply. My... by Loki (Jul 8)

Hi thanks for the post. Having been on treatment is I... by nigel (Jul 7)

Just joined the website today and have... by Loki (Jul 7)

3 posts

84 Views

08/07/2017 - 12:48pm
By

Recently diagnosed

Hi Victor, I've just recently been diagnosed (3 weeks... by Thompsog (Jul 6)

Hi Victor -Welcome to the forums! The short answer is... by sprycml (Jul 2)

Hello, my name is Victor i literally was diagnosed the 27th... by Vmexican1 (Jul 1)

Organising your life

3 posts

182 Views

06/07/2017 - 9:31pm
By

Tasigna and the fasting the period

I was diagnosed in March 2016 and have had a great response... by grells (Jul 6)

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)

6 posts

194 Views

06/07/2017 - 10:45am
By

Your (first) name in lights?

Hi there. I have just emailed the organisers as I'd... by grells (Jul 6)

Hi David,I'll add you to the list.... so far 3 so 7 places... by sandy craine (Jun 29)

Sandy,I'd be happy to, and of course already in London. But... by David Fitz (Jun 27)

Janssen, a large pharmaceutical company with an interest in... by sandy craine (Jun 27)

4 posts

266 Views

06/07/2017 - 10:28am
By

Neck lump issues

Hi Martin,I may be able to add to what you are experiencing... by johnw1001 (Jul 4)

Dear Sandy and PhilipFirst, thank you once again for... by MartinZA (Jun 30)

Hi Martin: I have been on dasatinab for a little over... by Philip (Jun 30)

Martin,This must have been really worrying for you and it... by sandy craine (Jun 28)

Side effects

5 posts

168 Views

04/07/2017 - 9:29pm
By

Art exhibition near Old St (London) by CML patient in aid of Bloodwise.

I might pop along after work and thought others in London... by David Fitz (Jul 4)

1 posts

49 Views

04/07/2017 - 1:16pm
By

Alternatives to imatinib

Hi John,Just a note on diabetes and TKIs.... I think the... by sandy craine (Jul 3)

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)

Treating CML

5 posts

198 Views

03/07/2017 - 11:18am
By

Ponatinib: NICE publish their final recommendations

NICE have published final guidance on ponatinib today (see... by David Ryner (Jun 29)

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)

3 posts

154 Views

29/06/2017 - 5:59pm
By

Travel insurance for CML, without screening

Hi - (long wait!) - it was Cipro, which has been discussed... by RodM (Jun 29)

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)

12 posts

628 Views

29/06/2017 - 3:52pm
By

Newly diagnosed and sharing some experience with Tasigna

I'm not even close to the 38 group (I am 64), but have been... by cmljax (Jun 29)

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)

7 posts

231 Views

29/06/2017 - 1:43pm
By

Educational resources for children

Hi,This is an interesting issue and I will attempt to... by sandy craine (Jun 28)

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

4 posts

92 Views

28/06/2017 - 7:32pm
By

Reduced dose

I take Sprycel, and my counts a couple of years ago were... by David Fitz (Jun 27)

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

2 posts

99 Views

27/06/2017 - 12:03pm