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johnw1001 on 2 August 2016

Category: Organising your life

Replies: 0

Last updated: 2 August 2016

Are your TKIs insured against loss, theft etc
by johnw1001 (Aug 2)

Hi All
Have been meaning to rise this as an issue for some time but now house insurance is up for renewal will share my experiences.
For those of us who still receive our TKIs as a 3 monthly batch
Category: Organising your life

Replies: 0

Last updated: 2 August 2016
sandy craine on 3 June 2016

Category: Uncategorised

Replies: 2

Last updated: 7 September 2016

2016 UK CML PATIENT CONFERENCE
by David Ryner (Aug 1)

Hi Lynette,
I will check with the organisers but my guess is that it will not be available to the general public.

by Lynette (Jul 31)

Good morning Everybody! I can see from the info on the flyer that the patient conference shall be made available to everyone via webcast... will the practitioners conference also be available to

by sandy craine (Jun 3)

This years CML patient conference will be held at the Midland Hotel in Manchester on 24th September. The following link will take you to the website with all details of how to book etc.
http://www.
Category: Uncategorised

Replies: 2

Last updated: 7 September 2016
hyderabadindia on 27 July 2016

Category: Blood tests

Replies: 1

Last updated: 30 July 2016

RT-PCR results
by sandy craine (Jul 30)

Hi,
I might be that your wife's symptoms are because she is anaemic. Imatinib can suppress the red cells so it is often the case that the haemoglobin level (HGB) is a little low. If it is under

by hyderabadindia (Jul 27)

6 MONTHS RT-PCR for monitoring M-BCR/ABL1(p210)mrRNA transcripts
Dear Madam,
6th month RT-PCR RESULTS

BCR/ABL1 COPY NO
Category: Blood tests

Replies: 1

Last updated: 30 July 2016
GBear on 27 July 2016

Category: Side effects

Replies: 4

Last updated: 28 July 2016

Joint stiffness and bone pain after 5 years??
by GBear (Jul 28)

Thanks John, I will keep you posted if anything turns up! And thanks for your thoughts and info, it helps to know I'm not the only one feeling this way

by GBear (Jul 28)

Hi David,
Thanks for taking time to reply! I am 50 years old and have always been athletic and active up until May of this year when this problems started. It has gradually gotten worse in all of my

by David Fitz (Jul 27)

Hi,
I'm sorry for such a short message, but I'd prefer to reply quickly than not at all.
Some side effects of TKIs can come on late. For example, a pleural effusion can occur with a

by Parklife (Jul 27)

Hi
Sorry to hear about your joint stiffness and bone pain.
I have been on 4 TKI's since diagnosis in June 2013. Personally I started to experience joint stiffness approximately 7/8 month into
Category: Side effects

Replies: 4

Last updated: 28 July 2016
sandy craine on 14 July 2016

Category: Uncategorised

Replies: 10

Last updated: 26 July 2016

Please share your views on the following 2 Questions
by David Fitz (Jul 26)

Me too - you would be very lucky to have zero problems with a particular TKI, so sometime's better the devil you know!
David.

by cdw5000 (Jul 24)

Hi,
in a similar vein to other responses, once you're settled on a treatment that's working and the side effects are tolerable/manageable, why would you change TKIs?
i would only change TKI

by Parklife (Jul 21)

Hi Sandy and David.
Thanks for that. As I say I am more than willing to speak if I am wanted, just let me know.
Take care all.
Kind regards,

John

by sandy craine (Jul 21)

Thanks to all for your responses.... I will send them on to Prof. Copeland and will let you have her feedback regarding candidates for 'Patient Stories'.
Any other volunteers?
Sandy
Category: Uncategorised

Replies: 10

Last updated: 26 July 2016
Claire_71 on 25 July 2016

Category: Uncategorised

Replies: 2

Last updated: 25 July 2016

My blog...
by chrissie (Jul 25)

Hi Claire

My haem was so positive about CML he started his diagnosis to me over the phone with the word "Congratulations!". I found that very hopeful and, of course, over the past

by Olivia (Jul 25)

Hi Claire, welcome to the club - none of us expected or wanted to join, but it's not so bad for most of us! So many people here have offered help and advice, please keep asking if or when

by Claire_71 (Jul 25)

Hi, I've finally got some balls to write about my journey with CML. I've decided to blog about my cancer to hopefully help others through this journey and to raise awareness of blood cancers
Category: Uncategorised

Replies: 2

Last updated: 25 July 2016
V1ck1 on 21 July 2016

Category: Treating CML

Replies: 2

Last updated: 21 July 2016

BMT??
by darley (Jul 21)

* sticks hand up :)

by sandy craine (Jul 21)

Hi Vicky,
Yes, I think there are several of us on this forum. Nowadays it is quite rare to transplant for CML but there are people who either do not respond well to TKI therapy in general, or

by V1ck1 (Jul 21)

Has anyone in here had a bone marrow transplant?
Category: Treating CML

Replies: 2

Last updated: 21 July 2016
Lopaulpa on 14 July 2016

Category: About CML

Replies: 2

Last updated: 14 July 2016

Some tough news..
by Lopaulpa (Jul 14)

Hi Sandy, all blood work was beautiful while on Tasigna but the with the side effects it wasn't a life to be honest..
About other drugs, the doctors are meeting today to talk about all this and

by sandy craine (Jul 14)

I am sorry to hear you do not seem to be responding well enough to dasatinib. Have you asked your doctors why they think this is? Have they identified a dasatinib resistant mutation? I assume -

by Lopaulpa (Jul 14)

Hey again guys, I will introduce my self again. My name is Gudmundur and I am 29 yo from Iceland but currently living in DK with my girlfriend and 2yo daughter.
I had been on Gleevec and Tasigna for
Category: About CML

Replies: 2

Last updated: 14 July 2016
sandy craine on 11 July 2016

Category: Uncategorised

Replies: 1

Last updated: 14 July 2016

WalkforWards- The Blood Fund.
by sandy craine (Jul 14)

To all those who have donated to the WalkforWards event so far..... a message of thanks from Prof. Jane Apperley and the team at Imperial College NHS Trust, Hammersmith Hospital.
'On behalf of

by sandy craine (Jul 11)

The Blood Fund is a new departmental charity at Imperial College Healthcare NT, raising funds for the Department of Haematology. Monies raised will support a variety of projects aimed at improving
Category: Uncategorised

Replies: 1

Last updated: 14 July 2016
David Ryner on 10 July 2016

Category: Uncategorised

Replies: 0

Last updated: 10 July 2016

NHS England publishes details of their new process for evaluating and funding cancer drugs
by David Ryner (Jul 10)

Rather bizarrely for an area of activity with such high media visibility, NHS England (NHSE) did not put out, as they usually do, a media release in its news section of the website. Instead a very
Category: Uncategorised

Replies: 0

Last updated: 10 July 2016
sandy craine on 7 July 2016

Category: Treating CML

Replies: 3

Last updated: 9 July 2016

Positive recommendation of bosutinib (Bosulif) from NICE CDF Rapid Reconsideration
by chrissie (Jul 9)

Hi David and Sandy
Thank you very much for all you have done and great news on the NICE decision. It feels safer to have more options on the meds. front. I certainly feel happier to now there

by sandy craine (Jul 8)

Hi Nigel,
I have now fixed the link to the NICE press release- and yes, for the moment it is only available through the CDF until the FAD is implemented which I think is within 90 days? -
see

by nigel (Jul 7)

Hi David, that is very good news, thank you for the update, and all you have done, along with our patient representative in getting the rapid review through, and with a positive outcome.

by sandy craine (Jul 7)

We are very pleased that the outcome of the NICE Cancer Drugs Fund Rapid Reconsideration of bosutinib has resulted in a positive recommendation for its routine use in the NHSE in England for all the
Category: Treating CML

Replies: 3

Last updated: 9 July 2016
leelanarasimha on 17 June 2016

Category: About CML

Replies: 4

Last updated: 3 July 2016

Recently diagnosed with CML
by hyderabadindia (Jul 3)

Hi leela narsimha,
i am from hyderabad(India). my wife also recenly(Jan- 20-2016) diagnised CML., her medication Levin 400mg (imatinib mesylate). If you living in india this medicine cost

by shawn_143 (Jun 20)

Hi Leela,
Sorry to hear that, i am also recently diagnosed with CML like a Month before and i can understand what you are go through.
I am not an Expert or experienced guy to advice on this. But

by sandy craine (Jun 17)

Welcome Leela,
1. Is one year is sufficient or we should take the rest of life.?
Currently the situation is that the majority of patients (over 90%) diagnosed in chronic phase CML will respond

by darley (Jun 17)

Hi,
Welcome to the club nobody wanted to join. I was diagnosed with CML 22 years ago. So Keep Calm and Carry On :)
Veenat is the generic version of imatanib (also called glyvec or
Category: About CML

Replies: 4

Last updated: 3 July 2016
MartinZA on 2 July 2016

Category: Treating CML

Replies: 3

Last updated: 3 July 2016

ELN or NCCN?
by MartinZA (Jul 3)

Dear Sandy and David
Thank you so much for your quick response and for your kind and wise words. I have read so many of your replies to other CML patients and your words carry a great deal of

by David Fitz (Jul 2)

Hi Martin,
Sorry for the short message. I don't have time right now for a long one but wanted to reply.
I too take dasatinib. After almost 2 years from diagnosis I was above 1%. Another 18

by sandy craine (Jul 2)

Hi Martin,
I understand why you are disappointed but you should temper your disappointment with the knowledge that this is not an exact science - time of testing and consequent pcr result. PCR is

by MartinZA (Jul 2)

Hi everyone
I have just received my six-month results after being on dasatinib since December 4 2015 and I am hugely disappointed. BCR-ABL is only at 1.4% from 72% at diagnosis and only a small drop
Category: Treating CML

Replies: 3

Last updated: 3 July 2016
johnh on 19 October 2009

Category: Uncategorised

Replies: 16

Last updated: 1 July 2016

Reducing Glivec Dose
by darley (Jul 1)

Really?? Suggest you might want to read about the DESTINY trial and which I'm on. In that trial you go on half dose... so 200mg for a year with monthly MONTHLY monitoring and because it

by fehr (Jun 28)

Hi Jamal,
My situation is not quite straightforward. I stopped Imatinib 400mg for some six months at the start of 2014 because I developed macular oedema following lens replacements, which

by jmoukarzel (Jun 7)

Hi John, i am jamal, i have cml since 2010, and suffer from many side effects.
I read that u decreased the dose so what happened since?
wish everything is ok with u now.

by fehr (Nov 8)

I have been on 400mg since April 2007 and for the past two years my PCR has ranged between 0.002% and 0.008%. The doc at Hammersmith suggested that this was an order better than was necessary and
Category: Uncategorised

Replies: 16

Last updated: 1 July 2016
Jmlevin on 23 June 2016

Category: Treating CML

Replies: 5

Last updated: 29 June 2016

New Here CML
by chrisk (Jun 29)

Hi Justin,
I am a 60 year old male diagnosed 2 months ago and was started on Nilotinib shortly after the diagnosis. I was only on Nilotinib for 2 weeks (sample pack) while the insurance companies

by chrissie (Jun 25)

Hi Justin
I have been on Gleevec since Sept 2009 and doing well on it. Yes, there were some side effects at first - mainly puffy eyes and leg cramps but these subsided within a few months. I was on

by Ben K (Jun 25)

Hi Justin, I was diagnosed 4 months ago and have been on Tasigna (Nilotinib) for just 2 months. I have had a very rapid response to the medication with my PCR at 4.8 after 30 days and I have

by sandy craine (Jun 24)

Hi Justin and welcome.
I am sorry that you have been diagnosed with CML so young, and therefore have to deal with all the issues that come alongside a diagnosis of a serious disease - However, the
Category: Treating CML

Replies: 5

Last updated: 29 June 2016
alroder on 22 June 2016

Category: Uncategorised

Replies: 5

Last updated: 24 June 2016

PCR-ABL Results
by sandy craine (Jun 24)

Hi,
Your husband's PCR result at 2.7 log reduction is between CCyR @ 1.0% and 3 log reduction or MMR @ 0.1% Bcr-Abl1. I am not used to talking in log reactions and most of us on this forum

by Lynette (Jun 24)

Hey David,
Thank you so very much for replying and directing me to your wonderful thread... i've found it very informative to read of your own roller-coaster results and the replies that were

by David Fitz (Jun 23)

Hi Lynette.
It's never a smooth ride, in my experience!
The most important thing is the overall trend, not an individual result.
Have a look at this thread, started by someone who was

by David Fitz (Jun 23)

Hi!
Sorry for the short post, but is there a reason he is on 80mg, not 100mg which is the standard dose in most cases.
David.
Category: Uncategorised

Replies: 5

Last updated: 24 June 2016
Steven Davies on 13 June 2016

Category: Uncategorised

Replies: 1

Last updated: 21 June 2016

Hammersmith Patient Carer Support Group Meeting June 25th 2016 All Welcome
by Steven Davies (Jun 21)

Last couple of places left. Book now.

by Steven Davies (Jun 13)

Hammersmith CML Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME LEUKAEMIA PATIENTS SUPPORT GROUP CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 OHS.(
Category: Uncategorised

Replies: 1

Last updated: 21 June 2016
annie t on 15 June 2016

Category: About CML

Replies: 3

Last updated: 21 June 2016

skin whitening
by annie t (Jun 21)

Thank you Sandy..

by ginger (Jun 19)

Thank you Sandy. I just look anemic.

Ginger

by sandy craine (Jun 16)

Hi and welcome to this forum.
Regarding hypo pigmentation of the skin. It seems from a fairly quick look at the articles available, that this is a reported side effect of imatinib and is probably

by annie t (Jun 15)

hi.. i am on gleevec from last 1 year. my skin is lightened too much. i am of indian orgin and it is quite visible. will this side effect be permanent i.e. till the time i am on gleeve? has anyone
Category: About CML

Replies: 3

Last updated: 21 June 2016
shawn_143 on 16 June 2016

Category: Side effects

Replies: 3

Last updated: 20 June 2016

Recently Diagnosed with CML
by shawn_143 (Jun 20)

Thank you So much Sandy and David, good to hear that and got more confidence
i have my Next visit to Dr in 4 days with my CBC (after 10 Days i am checking my CBC). and for the past 3-4 days i

by David Fitz (Jun 16)

HI Shawn,
I was the same age as you when diagnosed.
You're going to be fine - almost certainly. You ought respond well to therapy and live a normal life-span, even if complicated with medicine (

by sandy craine (Jun 16)

Hello Shawn and welcome,
To put your mind at rest I will say first that over 90% of patients diagnosed in chronic phase CML respond very well to TKI therapy and go on to live out their normal life

by shawn_143 (Jun 16)

Hi,
I am Shawn 34Yrs old, i live in India. I am recently diagnosed with CML (2-3 weeks back) and i am on Veenat 400 MG (Generic Version of Imatinib) once a day.
Initially I was 60K of WBC
Category: Side effects

Replies: 3

Last updated: 20 June 2016
ginger on 19 June 2016

Category: Uncategorised

Replies: 1

Last updated: 20 June 2016

Hypopigmentation
by annie t (Jun 20)

Hi.. I am on Gleevec and I too have a bloated face everyday. However it's frustrating to have the skin color changed. Been an indian it's too visible and people give me a weird look. I discussed

by ginger (Jun 19)

Hi,

Been on 100 mg sprycel since dx, Jan 14, 2014. Pcru on 4/18/16. Joint pains cropped up for 3 wks, noticed my Asian skin is lightening up, also think my cheeks seem puffy...I do have a
Category: Uncategorised

Replies: 1

Last updated: 20 June 2016