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Emily on 15 April 2016

Category: Side effects

Replies: 2

Last updated: 15 April 2016

Nilotinib side effects
by Emily (Apr 15)

Hi Sandy,
Thanks so much for your information and encouragement!
Emily

by sandy craine (Apr 15)

Hi Emily,
it is not unusual for clinicians to manage the effects of TKIs by dose reductions in the first few months of therapy, especially in the case of raised liver enzymes. I am sure your body

by Emily (Apr 15)

Hi,
I was diagnosed as CML on Feb 2016 and was started on Nilotinib, 300mg once per day. 3 weeks after that, my liver enzymes level was 5 times above normal. I was asked to stop Nilotinib for 2.5
Category: Side effects

Replies: 2

Last updated: 15 April 2016
Emmawill1 on 13 April 2016

Category: Side effects

Replies: 2

Last updated: 15 April 2016

Nilotinib symptoms - missing a dose
by sandy craine (Apr 15)

Hi.... it is very likely - as David has already said - that it is coincidental that your husband felt these symptoms when he had missed a dose. What is worrying is that he had chest pain and

by David Fitz (Apr 14)

Hi Emma,
It sounds purely coincidental to me. Was it the first time he missed a dose? If so, he might have found that quite stressful in itself which could have lead to him feeling a bit off-colour

by Emmawill1 (Apr 13)

Hi,
My husband has been diagnosed with CML.
He currently takes Nilotinib 300mg x2 a day.
He recently missed his morning dose and just took his evening dose due to time lapse. Later that day he
Category: Side effects

Replies: 2

Last updated: 15 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
GEP on 25 June 2015

Category: Uncategorised

Replies: 77

Last updated: 5 April 2016

New policy for dispensing glivec
by Ginette Baker (Apr 5)

Royal Berkshire Hospital Reading have a 1 month rule, I was dx last June and always have to collect my Glivec every month from Lloyds at the hospital. They can't transfer to Lloyds within

by Ginette Baker (Apr 5)

Royal Berkshire Hospital Reading have this rule, I was dx last June and always have to collect every month from Lloyds at the hospital. They can't transfer to Lloyds within my local GP

by MRB (Feb 9)

Thank you Chrissie for replying to my query. I will ask for the information on 'page two' at my next appointment! It seems strange that the consultants do not willingly supply the more

by chrissie (Feb 7)

Hi Margaret
One problem with PCRs from the Exeter lab seems to be that they are not on IS (International Scale) so difficult to compare with other labs (only 29 are on IS in the UK apparently)
Category: Uncategorised

Replies: 77

Last updated: 5 April 2016
cdw5000 on 4 April 2016

Category: Organising your life

Replies: 0

Last updated: 4 April 2016

Travel Insurance
by cdw5000 (Apr 4)

Hello All,

I previously used to get my travel insurance with an existing provider and CML was excluded; this has come to an end unfortunately. From a search on this forum I found a
Category: Organising your life

Replies: 0

Last updated: 4 April 2016
sandy craine on 4 April 2016

Category: Uncategorised

Replies: 0

Last updated: 4 April 2016

CMLS group- Welcome to 3 new trustees
by sandy craine (Apr 4)

On behalf of the board of CMLSGroup, I would like to welcome Nigel Deekes, David FitzGerald and Karen Adams to our board of trustees. All three are active patient members of this group as well as
Category: Uncategorised

Replies: 0

Last updated: 4 April 2016
sandy craine on 31 March 2016

Category: Uncategorised

Replies: 0

Last updated: 31 March 2016

Charity Football match - Glasgow
by sandy craine (Mar 31)

I posted about this some time ago, but it seems there is still a need for those keen on football to participate to make up 16 players for each side. Info about the dinner is posted on the '
Category: Uncategorised

Replies: 0

Last updated: 31 March 2016
Carol on 30 March 2016

Category: Getting help

Replies: 0

Last updated: 30 March 2016

Hammersmith Patient Carer meeting Saturday 25th June 2016.
by Carol (Mar 30)

Hi All Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME LEUKAEMIA PATIENTS SUPPORT GROUP CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 0HS
The
Category: Getting help

Replies: 0

Last updated: 30 March 2016
David Ryner on 27 March 2016

Category: Uncategorised

Replies: 0

Last updated: 27 March 2016

NICE Rapid Reconsideration of dasatinib and bosutinib
by David Ryner (Mar 27)

As many of you know both dasatinib and bosutinib are only available to a CML patient in England if their doctor makes an application to the Cancer Drugs Fund (CDF). However for the application to be
Category: Uncategorised

Replies: 0

Last updated: 27 March 2016
Parklife on 14 March 2016

Category: Side effects

Replies: 3

Last updated: 27 March 2016

CML/TKI and Steroid injection advice
by Frenchguy (Mar 27)

Hi All,
Since 2 months, I am struggling with strong leg problems from the arch of the feets to the top ho the leg, including calf pains and a lot of muscles spasms every where which I manage to

by Parklife (Mar 21)

Hi John
Interesting to hear your experience of non conventional supplementation of Chinese and Thai treatments for your pains, and sorry to hear about your troubles.
I have since spoken to my

by johnw1001 (Mar 18)

Hi John,
Musculo-skeletal effects of TKi s
If you look at the product literature for many of the TKI s, for some CML patients, there are substantial issues of bone pain,joint inflammation and muscle

by Parklife (Mar 14)

Hi all.
As I have mentioned in previous posts. I am still struggling with ongoing issues. Since resuming Bosutinib I would say I have had even more of a flare up with groin, hip, knee, back and neck
Category: Side effects

Replies: 3

Last updated: 27 March 2016
Belinda Whitting on 15 March 2016

Category: Uncategorised

Replies: 3

Last updated: 19 March 2016

Coming off imatinib
by darley (Mar 19)

I can understand your concern. I'd be the same. I'm on the DESTINY trial and there's a thread about that in a pinned post and here:
http://www.cmlsupport.org.uk/thread/

by Belinda Whitting (Mar 16)

Hi Nigel, I'm sorry I've just realised I typed 2016 this is wrong I meant to put 2006. So my husband has been on the meds for 10years. Thank you for your time in replying to me.

by nigel (Mar 16)

Hi Branda, I am have been on ½ dose for 12 months in a trial for good responders so yes lower dose can happen in well supervised situations, and I am also just starting stopping in the

by Belinda Whitting (Mar 15)

Hello, I was just wondering if anybody on here has been taken off their tki's? My husband has been on 400mg since diagnosis in 2016. He was dropped to 300mg last year. He suffers really bad side
Category: Uncategorised

Replies: 3

Last updated: 19 March 2016
sandy craine on 21 January 2013

Category: Reproductive health

Replies: 4

Last updated: 13 March 2016

2 Videos: PREGNANCY in CML and DISCONTINUATION of TKI therapy
by Tabitola (Mar 13)

Hie CS, I am also interested please contact me on - email deleted-
------------------------------------------
We do not advise sharing your email address on this forum in order to protect your

by Jadey (Feb 5)

Hi I am also interested in this subject as I would love a child of my own but really worried I can't with being on Imitinab,

by CS (Aug 14)

Hi mgrattan, I planned my pregnancy after being diagnosed, if you are still hoping to talk to someone if you let me know your email address I could email and try and answer any questions you have.

by mgrattan (Jun 17)

Hi there, I have CML and was diagnosed in June of 2003 at the age of 14. I have been taking Gleevec/Imatinib since the day I was diagnosed. I am now 26 and thinking of my future and would like to
Category: Reproductive health

Replies: 4

Last updated: 13 March 2016
Bmckenna on 7 September 2015

Category: Side effects

Replies: 4

Last updated: 7 March 2016

Sprycell as time goes in....
by Lynette (Mar 7)

Hi Stephen and Barb, I've been taking 100mg of Sprycel daily for just shy of a year now. With my Profs' approval, I take 50mg each morning when I wake up and 50mg each night when I get home

by stemeltony (Mar 5)

Hi buddy,
am on sprycel 100mg ever since after dxed last Oct 15. 2 days ago started experiencing stiff neck which started from lower back.rapid heart beat and pain in forearm as well. Went and got

by Bmckenna (Sep 9)

Thank you Sandy. I appreciate you answering in such detail and also for the links. This is all new to me. I have been out of work since my diagnosis. At times I read of people who " haven't missed a

by sandy craine (Sep 8)

Hi,

quite a few people complain of muscle and bone pain (myalgia, arthralgia) as a side effect of TKI therapy. In a lot of people this effect does ease over time and many find that it
Category: Side effects

Replies: 4

Last updated: 7 March 2016
wshi2001 on 28 February 2016

Category: Side effects

Replies: 4

Last updated: 6 March 2016

Eye hemorrhage, floater relate to Imatinib
by MartinZA (Mar 6)

Hi William
I'm not sure that this is relevant to your post, but I had a serious eye problem after starting dasatinib, so perhaps it is similar to what you are experiencing. I was watching

by johnw1001 (Feb 29)

Hi William,
Yes in the first two years of treatment eye bleeds are a known and possible side effect for some CML patients and can be quite disturbing and upsetting.In some instances this is

by darley (Feb 28)

In such circumstances I always say Get thee to an eye specialist. I always think it's best not to 2nd guess what it might be and presume it's "just" stuff that happens.

by nigel (Feb 28)

Hi William. Thank you for your post like you might also have suffered with eye bleeds, they have been quite infrequent and look worse than they are. By eye bleeds I mean this is where I am
Category: Side effects

Replies: 4

Last updated: 6 March 2016
MrValenza on 24 February 2016

Category: Getting help

Replies: 14

Last updated: 4 March 2016

New Guy
by stemeltony (Mar 4)

Hey Alessio,
i was dxed last October and been on dasanitib 100mg until today. Sometimes u will have ups and downs in your life but don't let that get to you. I still live my life just like

by MrValenza (Mar 2)

Hi Elaine,
Thanks you thats very reassuring words and I'm glad to hear your son is getting on well! I can imagine being at Uni as well it must have been quite difficult at first but good to hear

by ElaineW (Mar 1)

Hi Alessio
My son was diagnosed with CML when he was 20 and at university. I've written something about this on a recent thread by Jade called "Hi"
As far as I can judge (because he

by darley (Feb 29)

In truth I've not been through the same thing. I was diagnosed and first commenced treatment in the days when there were fewer treatment options and life quality and expectancy were
Category: Getting help

Replies: 14

Last updated: 4 March 2016
bobosbo on 25 July 2009

Category: Uncategorised

Replies: 13

Last updated: 4 March 2016

New Member
by stemeltony (Mar 4)

Hey Bob
true. All is not lost. I am newly dxed in Oct 15, had floaters in my eye and that is how i found out. BC was 450,000. Now on Dasanitib for almost 6 months. Will have aches and pains but life

by kurt (Sep 20)

Had my first blood tests yesterday, my white blood cell count came down from a starting point of 190, to 118, not bad for the first week's treatment, my oncologist is very happy with my progress.

by kurt (Sep 15)

I started with my Gleevec treatment 5 days ago, no side effects whatsoever. I take my tab after dinner with a large glass of water, have another glass before I go to sleep. Can't wait for the 1

by kurt (Sep 10)

Hello all, I am from Johannesburg, South Africa, and was diagnosed with CML last week, there does not apear to be a local CML support forum in SA so I hope nobody objects to me being here.

My
Category: Uncategorised

Replies: 13

Last updated: 4 March 2016
Ole Fart on 25 February 2016

Category: Side effects

Replies: 1

Last updated: 3 March 2016

Fibromyalgia
by Parklife (Mar 3)

I have noticed that your post has dropped off without a reply yet. It may help you getting a response by perhaps some kind of picture about your stage of CML and what TKI you are on.
Hopefully

by Ole Fart (Feb 25)

Has anyone experienced change in severity of symptoms of pre-existing fibromyalgia after beginning treatment?
Category: Side effects

Replies: 1

Last updated: 3 March 2016
David Ryner on 3 March 2016

Category: Uncategorised

Replies: 3

Last updated: 3 March 2016

News about the availability of dasatinib in England
by nigel (Mar 3)

Hi David,
Many thanks for your post, information, and update. To see Dasatinib finally available to the CML community in England would be outstanding. It is a shame to see money being the overriding

by David Fitz (Mar 3)

That's is certainly a move in the right direction.
As someone who had to fight tooth and nail, and privately fund it for a while, in order to get NHS funded dasatinib I massively welcome

by darley (Mar 3)

ALWAYS good news to read about the possibility of more treatment options more readily available.
Takes away a weight of unnecessary concern from folks who sometimes get caught in a mess.

by David Ryner (Mar 3)

NHS England (NHSE) have just published a draft proposal that could result in dasatinib becoming available on the same routine prescribing basis as imatinib (Glivec) for newly diagnosed adult CML
Category: Uncategorised

Replies: 3

Last updated: 3 March 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
Parklife on 13 February 2016

Category: Side effects

Replies: 10

Last updated: 1 March 2016

Update in response to Chrissie.
by Parklife (Mar 1)

Bubble wrapped indeed.
Many thanks for your kind words. Hopefully as the weeks go by, I become closer to a more stable platform to build upon. Interesting that my IGA marker has now been clarified

by darley (Feb 27)

What a very difficult situation for you. I just sincerely hope that one way or the other that a root cause can first of all be found and then treated or managed so you've not in so

by Parklife (Feb 25)

Hi Sandy
I have researched alsorts. My only trouble being I have no idea what I am attempting to treat. I have mentioned Fibromyalgia, and have been told no, perhaps, then no again, had points

by sandy craine (Feb 21)

Hi John and Lucas,
ABL001 Phase 1 trial is - unfortunately - not open here in the UK. http://www.cmlsupport.org.uk/clinical-trials/abl001%E2%80%8B.
John... have you tried researching
Category: Side effects

Replies: 10

Last updated: 1 March 2016