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Yasmina on 12 January 2016

Category: About CML

Replies: 2

Last updated: 13 January 2016

Bad news :(
by Yasmina (Jan 13)

Thanks ver y so much I do apreciate your words. Thanks for taking your time and gide me true this situation. God bless you.

by darley (Jan 12)

Hello and welcome to the club that no-one wanted to join.
No-one can answer that question but I can tell you that I was diagnosed 22 years ago when I was 43 years of age and I have a wonderful

by Yasmina (Jan 12)

To months ago I have revived a phone call that change my life . I am 45 years old and I have 4 kids and a wonderful husband My kids 24,21,8,and 6. My worries are no different from
Category: About CML

Replies: 2

Last updated: 13 January 2016
Olivia on 17 November 2015

Category: Uncategorised

Replies: 17

Last updated: 9 January 2016

Undetectable!
by wshi2001 (Jan 9)

Hi, David,
Thanks for sharing your experience with us. It gives me hope and I feel a lot better now. My circumstances are quite similar to yours (similar high starting BCR, similar age,

by Olivia (Jan 8)

My 'undetectable' turned out be a blip after all - my latest result is 0.0048, which is still OK by me! I can however hope for more blips...
Olivia

by sandy craine (Dec 30)

Hi David.... well this may be disappointing - undetectable is such a desirable word ;o) - but you are almost at MR4 so given all the variables involved in molecular testing if I were you I would

by David Fitz (Dec 30)

Oh well, back up to 0.02% - from that "undetectable" that I was rather dubious about.
Still, a decent enough number and disregarding that undetectable PCR result, 0.02% is a level I
Category: Uncategorised

Replies: 17

Last updated: 9 January 2016
Peter Miles on 25 January 2010

Category: Uncategorised

Replies: 20

Last updated: 8 January 2016

Dark Palate Anybody?
by acoustic (Jan 8)

Hi, I am a wife of a CML patient diagnosed in 2002 and he was in complete remission in 2003 until now. I am at peace to know that its not only my husband who has the same concern, which is having a

by Peter Miles (Jan 31)

Hi Sue

Sorry I missed your posting hidden amongst the others but thank you.

If you have any further info from Australia I would be very interested to hear (patient confidentiality

by SwanValleySue (Jan 31)

Peter
One of the CML girls in Australia also had the same side effect.
Like yourself - all her consultants and orthodontist etc had never seen this effect or thought it was a known side effect of

by Peter Miles (Jan 29)

Hi Sandy

Many thanks for your helpful reply.

I'm seeing Prof Clark next month and having a biopsy at the Royal Liverpool Dental Hospital early March so I'll know more after that.
Category: Uncategorised

Replies: 20

Last updated: 8 January 2016
Belinda Whitting on 2 January 2016

Category: About CML

Replies: 1

Last updated: 3 January 2016

Daily mail article
by darley (Jan 3)

I didn't see it but there's a couple of things that make me sceptical
1) You said "The Daily Mail" :)
2) If it sounds too good to be true, then it likely will be

by Belinda Whitting (Jan 2)

Hello everyone.. Hope 2016 will be a good year for you all.
Did any one see the daily mail article about a possible cure researched by London Hammersmith hospital.
just wondered if it was true?
Category: About CML

Replies: 1

Last updated: 3 January 2016
sandy craine on 31 December 2015

Category: Uncategorised

Replies: 1

Last updated: 3 January 2016

Happy New Year!
by darley (Jan 3)

Happy new year to you too and to all other readers. Let's all hope for good health, good luck and prosperity. No point dreaming anything other than big :)

by sandy craine (Dec 31)

On behalf or the board and trustees of Cml Support Group, I would like to wish everyone the best for the coming New Year. Things are pretty tough for many people at the moment, both here in the UK
Category: Uncategorised

Replies: 1

Last updated: 3 January 2016
StephenC on 31 December 2015

Category: Uncategorised

Replies: 5

Last updated: 2 January 2016

Hello New to the Forum
by chrissie (Jan 2)

Hi Steve
There are plenty of folks on FB who are experiencing the same muscular skeletal pains as you on Tasigna.These are a common side effect of the meds. Sometimes it helps to see these

by StephenC (Jan 1)

Thank you both for the uplifting words, and encouragement.
Some of the side effects have been very manageable, like I get tired very quickly and I sometimes will get extremely week and have to

by chrissie (Dec 31)

Hi Steve

Sorry, I didn't realise that you're in the US (not being aware of US hospitals, unlike Sandy) so what I said about financial support is not relevant. As well as Sandy

by sandy craine (Dec 31)

Hello Steve, and welcome to this forum- and yes you have found the right place to talk openly with people who have or are experiencing the same as you. As Chrissie has already said- it may not
Category: Uncategorised

Replies: 5

Last updated: 2 January 2016
sandy craine on 31 December 2015

Category: Uncategorised

Replies: 1

Last updated: 31 December 2015

Professor Charles Craddock receives CBE
by nigel (Dec 31)

Hi Sandy, Great news on Charlie Craddock being recognised for outstanding work. I to was under him for a while and was so pleased to have had his care.
Happy new year all, here's to a great 2016

by sandy craine (Dec 31)

Good to see Prof. Craddock recognised for his work. He was my doctor when I was first diagnosed at Hammersmith Hospital in 1998/9 and was always supportive and sympathetic. His pioneering work on
Category: Uncategorised

Replies: 1

Last updated: 31 December 2015
lisachen40 on 29 December 2015

Category: Blood tests

Replies: 2

Last updated: 30 December 2015

PCR result arise
by sandy craine (Dec 30)

Hi,
This can be a problem for those tested in labs (particularly in the US) that do not use a suitably sensitive Q-PCR method. It is likely that the previous lab used did not find Bcr/

by chrissie (Dec 29)

I shouldn't worry as this result on IS is very good and within MMR. Have a look at the PCR primer on this website if you need more information.
Have a happy New Year,
Best
Chrissie

by lisachen40 (Dec 29)

I had two years PCR results Not detected. Recently relocated to another state, the lab also changed, the PCR result come out to be 0.045% IS. This really worried me.
Category: Blood tests

Replies: 2

Last updated: 30 December 2015
MarioCon on 20 December 2015

Category: Uncategorised

Replies: 2

Last updated: 21 December 2015

Hi guys!
by sandy craine (Dec 21)

Hi Marios,
Welcome and good luck with your treatment. I you need any advice please ask- there are many of us on here who can advise you.
Best wishes, Sandy

by chrissie (Dec 21)

Welcome to the site, Marios. I'm sure you will find it very helpful with all the information on here,
Best wishes for Christmas,
Chrissie

by MarioCon (Dec 20)

Hello everyone. My name's Marios, 25, from the sunny island of Cyprus (albeit rainy and moody these last few days). I had no idea such a website existed and to my great pleasure, I stumbled upon
Category: Uncategorised

Replies: 2

Last updated: 21 December 2015
sandy craine on 17 December 2015

Category: About CML

Replies: 1

Last updated: 18 December 2015

Prof. Steve O'brien's summary of ASH 2015
by darley (Dec 18)

Here's the link:

https://www.dropbox.com/s/twrzp76lcbu7qny/ASH%20CML%20report%202015.pdf?...

by sandy craine (Dec 17)

Please see resources page under Articles
Sandy
Category: About CML

Replies: 1

Last updated: 18 December 2015
MekaMa on 15 December 2015

Category: Reproductive health

Replies: 4

Last updated: 18 December 2015

Male sperm and Tasigna
by MekaMa (Dec 18)

Thank you so much Sandy. I agree, in life there are no guarantees. I determine disability everyday and see hundreds of cases where a child who was the product of a normal pregnancy AND delivery as

by sandy craine (Dec 17)

Well if you look hard enough you will find ;o) Click on the link to the Patient Seminar (image at the top of home page) and follow the links to the days presentations. You will find Dr. Graeme Smith

by MekaMa (Dec 17)

Thanks. I did see those responses. Was hoping for something specific to Tasigna but I guess I have to take what I can get. I'm researching because the situation is past pre-conception and the

by sandy craine (Dec 16)

Over the years this has been a very popular discussion thread.... there have been quite a few posts about this subjects so you might like to take a look at some of them here:
http://www.cmlsupport.
Category: Reproductive health

Replies: 4

Last updated: 18 December 2015
sandy craine on 14 August 2014

Category: Uncategorised

Replies: 8

Last updated: 17 December 2015

Dom
by MekaMa (Dec 17)

You bring about a valid point. I guess the flip side is that we are operating under unknown condition. Issues can and do arise ALL OF THE TIME when individuals are not on these medications. I mean

by Dom (Aug 31)

Hi Chris

Thanks for taking the time to provide this info. Much appreciated. I see my consultant tomorrow and I know he's not going to offer any guarantees but everything I've read from people

by cdw5000 (Aug 26)

Hi Dom,
My wife and I are considering family and have been through a similar journey. I was fortunate enough to talk directly to Prof Apperley at the 2013 CML patient day - she also held a sidebar

by Dom (Aug 23)

Hi Jenni, thanks for sharing this info. Sandy has been very reassuring with the research evidence she has provided. Of course we are all naturally very careful over this and want to speak to as
Category: Uncategorised

Replies: 8

Last updated: 17 December 2015
Gst on 9 December 2015

Category: Getting help

Replies: 2

Last updated: 14 December 2015

SCT my journey so far
by sandy craine (Dec 14)

Well done for reaching the 100 day milestone. As for temp spikes- this happens and they really need to keep you monitored just in case! I know it must be frustrating ( I was lucky and didn't

by darley (Dec 11)

Yep! Been there. Done that. I remember saying I felt a bit like a kid having been given an ice cream to then have it snatched away. Just when I thought I

by Gst (Dec 9)

Hello everyone,
Well what a journey so far and it cotinues. I had my SCT on in August and was discharged about 10 weeks after this after an up and down few months. I have been readmitted about 5
Category: Getting help

Replies: 2

Last updated: 14 December 2015
mrobinson on 12 December 2015

Category: Side effects

Replies: 2

Last updated: 14 December 2015

Support level needed for treatment
by sandy craine (Dec 14)

Hi Mike,
Like Darley has said, it is difficult for those of us based in UK/Europe to advise on the US healthcare system as it is based on the level of private health insurance plan you have.

by darley (Dec 13)

Hi and sorry to hear the news about your son.
I seem to be first to respond to your post so need to say that this forum is prodominently UK based members. Hence we have different challenges

by mrobinson (Dec 12)

Hi,
My son Jonathan, age 28, appears to have CML. He lives in Texas, we are in Maryland.
We are helping to enroll him in healthcare plans with a Dec 15 deadline looming. If we enroll him
Category: Side effects

Replies: 2

Last updated: 14 December 2015
ed hokaj on 8 December 2015

Category: Side effects

Replies: 2

Last updated: 12 December 2015

severe fluid retention
by ed hokaj (Dec 12)

Sandy
thanks for your reply
i will be off SPRYCEL for the nexxt 3 weeks and we may be using nilotinibl(TASIGNA)

the fluid came very quickly the last time
the thoracentesis was done at a local

by sandy craine (Dec 9)

Where are you being treated? If it is a specialist haematology centre- and therefore experienced in treatment of CML with TKIs - they should know that one of the adverse events caused by dasatinib (

by ed hokaj (Dec 8)

I have been on SPRYCEL for 6 months at this time. I have had 2 THORACENTESES in three weeks.a total of 4.4 liters of fluid was extracted.
shortness of breath has come back and it looks
Category: Side effects

Replies: 2

Last updated: 12 December 2015
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
Dennis on 27 November 2015

Category: Uncategorised

Replies: 6

Last updated: 8 December 2015

Glivec and pain killers
by Dennis (Dec 8)

Hi John, thanks for that. I agree that there will be many GP's etc that aren't up to date with drug interactions based around TKI's. Heck, my GP openly says that I know more about

by johnw1001 (Dec 7)

Avoid Ibuprofen-evidence now available
Hi Dennis,
In the light of available evidence your consultant appears to be entirely correct and up to date in suggesting that CML patients undergoing TKI

by Dennis (Nov 28)

Thanks David. My consultant told me NOT to use Ibuprofen, hence the use of co dydramol. Seems like there's no steadfast rules on the use of pain killers.

by David Fitz (Nov 27)

Every now and then, paracetamol or ibuprofen will be fine ... that's the message I was given by my doctors.
But habitual use os paracetamol especially is not great, as it's tough on the
Category: Uncategorised

Replies: 6

Last updated: 8 December 2015
stemeltony on 30 November 2015

Category: Side effects

Replies: 4

Last updated: 3 December 2015

Bitter taste/strain in lower left abdomen (lymph node)
by stemeltony (Dec 3)

Thanks Sandy.
will update once I have seen my doc on the 7th.
cheers
stephen

by sandy craine (Dec 2)

Hi Stephen, and welcome to this forum/website. I may be coincidental but if the symptoms only appeared after you changed the time you took dasatinib (Sprycel) then try going back to you previous

by stemeltony (Dec 1)

Thanks John.
spoke to my nurse and he told me to see GP if the pain is unbearable. At the moment I am fine. My appointment is next week so I will be informing my doc about this. Hopefully it goes

by Parklife (Nov 30)

Hi Stephen.
I had pain in the inside of my groin/leg (lymph node area) whilst on Imatinib in the first few months. This was looked and turned out to be nothing. It also went away.
However we are not
Category: Side effects

Replies: 4

Last updated: 3 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
seanreed79 on 22 November 2015

Category: Side effects

Replies: 5

Last updated: 29 November 2015

Just a few questions for a newbie...
by darley (Nov 29)

Yep! We can most definitely confirm that's rubbish!

I was told I wouldn't see out 3 months. That was over 20 years ago. That was rubbish too :)

by seanreed79 (Nov 29)

Thanks Sandy, Nigel and Darley
Much appreciated for advise; Tonic water and bananas on the diet now, leg pain miraculously went early this week so 10 days of it, did 5k race Saturday and it

by darley (Nov 24)

Hi Sean,
Welcome to the club no one wants to join. ;) Hang in there mate. You will be going through a period of adjustment and shock!
I was 42 when diagnosed.

by nigel (Nov 23)

Hi Sean. welcome the the new world of being a CML patient. sorry you have had to join us. I was diagnoised at 45, and put on Imiatinib. I was a keen squash played before diagnosis, playing to a
Category: Side effects

Replies: 5

Last updated: 29 November 2015