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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
David Ryner on 8 June 2016

Category: Uncategorised

Replies: 1

Last updated: 12 June 2016

CML on BBC Radio 4 'File on 4 '
by David Ryner (Jun 12)

I've listened to the programme again over the weekend and had more time to reflect on some of the content.
Something that stunned me on a second listening was the claim made by NHS England in

by David Ryner (Jun 8)

Here is a link to last night's File on 4 programme http://www.bbc.co.uk/programmes/b07dlxxt which featured Russell Cooper who was what NICE call a 'patient expert' at the recent
Category: Uncategorised

Replies: 1

Last updated: 12 June 2016
Audrey on 10 June 2016

Category: Uncategorised

Replies: 1

Last updated: 11 June 2016

Potential cure?
by sandy craine (Jun 11)

Thanks for sharing the link Audrey .... many of us have been aware of Prof. Holyoakes research over the last 5 years or so. She and her team have made remarkable progress and it is good to see that

by Audrey (Jun 10)

I couldn't find any threads regarding the latest advances with CML research at Univ. of Glasow. It was all over the Scottish news and front page in The Herald. Here's a link http
Category: Uncategorised

Replies: 1

Last updated: 11 June 2016
imran.abbas05 on 18 January 2016

Category: About CML

Replies: 10

Last updated: 9 June 2016

Newly Diagnosed !!
by imran.abbas05 (Jun 9)

Thank You!
I appreciate your detailed information. Pardon me for my late replies :)
I will for sure update you about my latest results whenever it happens.
Wish you best of luck and a health and

by David Fitz (May 29)

Hi again,
I think 2% after 7 months is not bad at all! After a similar time post-diagnosis, I was 4%. Even a year after diagnosis I was at 1%.
I just got my latest result a few days ago (3 years

by imran.abbas05 (May 29)

Good Day!
Dear David I finished my BCR-ABL test a week ago and doctor told me that your BCR-ABL PCR is 2%. Is this ok or not? it was done after using Dasatinib 100mg for 7 months. And doctor

by imran.abbas05 (Jan 23)

Thank you very much. I appreciate your cooperation. Thank you.
Category: About CML

Replies: 10

Last updated: 9 June 2016
FLZoso on 9 June 2016

Category: Getting help

Replies: 1

Last updated: 9 June 2016

The word "Leukemia"
by Ben K (Jun 9)

Hi there - great that you are in remission, I am looking forward to that day!! It is a funny word, leukaemia. Since being daignosed I have wondered whether it is the "right"

by FLZoso (Jun 9)

I'm in remission and don't really think about that I have CML- leukemia. I use to hear the word once in awhile throughout my life but never gave it much thought until it knocked on my door.
Category: Getting help

Replies: 1

Last updated: 9 June 2016
chrissie on 23 May 2016

Category: Uncategorised

Replies: 17

Last updated: 8 June 2016

Indigestion?
by chrissie (Jun 8)

Yes, will do next week. Thanks, Sandy. Went back onto 400mgs Imatinib Oct 2015. To put the inconvenient side effects into proportion:
PCRs Jan - 0.04,

by sandy craine (Jun 7)

Chrissie,
H-pylori bacteria has proven to be a prime cause of ulcers. I suggest you ask for a test to see if you are positive.
Sandy

by chrissie (Jun 6)

Thank you so much, Sandy and Richard. I did wonder about an ulcer - my father had lots of these and my husband had one a while back. I shall discuss this possibility and omeprazole with my GP when I

by Richard42 (Jun 4)

Hi Chrissie
I think best discuss the right course for you with your doctor. All I can say is that when I reported what I thought were really quite worrying symptoms, I was reassured that it
Category: Uncategorised

Replies: 17

Last updated: 8 June 2016
Minny boo on 2 June 2016

Category: Uncategorised

Replies: 3

Last updated: 6 June 2016

CMML 2 STEM CELL TRANSPLANT
by Minny boo (Jun 6)

Thank you so much for your informative reply it has been so amazing to hear you are a survivor and that you are here to tell the tale..Amazing and so so helpful

I am so grateful for your

by sandy craine (Jun 3)

HI,
You may find the following link helpful in understanding CMML which is one of the myeloproliferative diseases but not the same as CML.
http://www.cancerresearchuk.org/about-cancer/

by darley (Jun 3)

Hi
I've had CML for a long time. So not the same thing but when I was diagnosed over 22 years ago it was VERY poor prognosis and I went from well to VERY seriously ill as my leukaemia

by Minny boo (Jun 2)

A
Category: Uncategorised

Replies: 3

Last updated: 6 June 2016
insclrk on 5 June 2016

Category: Side effects

Replies: 1

Last updated: 5 June 2016

Itching with gleevic
by sandy craine (Jun 5)

He should talk to his doctor about a short course of steroids/hydrocortisone and/or stopping therapy for a few weeks to see if it is a side effect of this TKI. If the rash does not resolve with a

by insclrk (Jun 5)

My son has been taking Gleevec 400mg for over a year now. He has outbreaks of scabie type sores all over his body including his penis area. Has anyone else experienced this? What
Category: Side effects

Replies: 1

Last updated: 5 June 2016
David Ryner on 3 June 2016

Category: Uncategorised

Replies: 2

Last updated: 3 June 2016

NICE CDF Rapid Reconsideration Committee meeting for bosutinib
by David Ryner (Jun 3)

You make an interesting point and what's called NICE 's 'new approach', and broader policy, is all about reducing the timelines between clinical trial data becoming available and

by darley (Jun 3)

Excellent post and thank you for that.
Whilst I understand the NICE process and the necessity of ensuring that drugs are objectively reviewed, it does seriously concern me that NICE impedes clinical

by David Ryner (Jun 3)

As part of the NICE CDF (Cancer Drugs Fund) Rapid Reconsideration process for bosutinib I attended, with a patient who very kindly volunteered to participate, the committee meeting in Manchester
Category: Uncategorised

Replies: 2

Last updated: 3 June 2016
sandy craine on 1 June 2016

Category: Uncategorised

Replies: 0

Last updated: 1 June 2016

CML Patient's support meeting - Glasgow 16th June 6-8pm
by sandy craine (Jun 1)

See our events page for details
http://www.cmlsupport.org.uk/event/cml-patient-support-group-meeting-gla...
Category: Uncategorised

Replies: 0

Last updated: 1 June 2016
Frenchguy on 11 May 2016

Category: Uncategorised

Replies: 16

Last updated: 1 June 2016

Leg Muscular and other limb problems
by Frenchguy (Jun 1)

Thanks John,
Unfortunately, our cases seem to be so similar... With the frustration come the fear of being mis-diagnosed from long term tki using or something else.
Walking is my main issue actually

by Parklife (Jun 1)

Hi Francis
Sorry for the late response, I haven't been great.
In response to your question, the twitches are intermittent, appear in different areas and are not troublesome. I have had them across

by Frenchguy (May 28)

Hi all,
I come back on the thread, to give you some news which are exactly the same as before. John, I am really "interested" to know that you suffer from twitches too. I am actually

by chrissie (May 25)

Rooting for you, John. I so hope they get to the bottom of all this pain. Not much I can add but I'm sure there are many people out there reading of your experience and thinking of you,
Best
Category: Uncategorised

Replies: 16

Last updated: 1 June 2016
wshi2001 on 31 May 2016

Category: Uncategorised

Replies: 3

Last updated: 1 June 2016

Left abdomen pain lately
by nigel (Jun 1)

Well worth mentioning it to you Dr and or pop and see you GP for them to feel for it to see if palpable.

by wshi2001 (Jun 1)

Hi, Nigel,
Thanks so much for your quick response. The left abdomen pain persists, it gets worse after I had a meal. I hope it is not cml related. I did my blood test today.

by nigel (May 31)

Hi William. Firstly you mention not being at MMR 0.1 at 18 months, while absolutely that is right, you are so so close that basically you have achieved it in my view. You have a CML that seems to

by wshi2001 (May 31)

Hi, everyone,
Its been a while that I haven't posted on the forum. My PCR from diagnose is 412%, 37%, 0.74%, 0.24%, 0.48%, 0.11%, 0.12% (3 months ago), virtually no change for the last two
Category: Uncategorised

Replies: 3

Last updated: 1 June 2016
lesley baliga on 13 September 2015

Category: About CML

Replies: 6

Last updated: 31 May 2016

atypical CML
by ajmmmm2728 (May 31)

Does your husband experience SEVERE fatigue and weakness?

by sandy craine (Sep 14)

Hi Lesley, as far as I am aware 'atypical CML' (aCML) is a myelodysplastic syndrome (MDS)/ myeloproliferative neoplasm (MPN) - part of a group of rare diseases of the marrow.
aCML does not show

by lesley baliga (Sep 14)

Thank you very much Darley I didn't know about google scholar - very useful.
Lesley

by lesley baliga (Sep 14)

Hi David,
We don't know. His haematologist just said in passing that it is atypical and has referred him to a specialist at Hammersmith Hospital. My husband doesn't really want to know anything
Category: About CML

Replies: 6

Last updated: 31 May 2016
DKurup on 9 May 2016

Category: Reproductive health

Replies: 6

Last updated: 21 May 2016

Discontinue Imatinib after 1 year for conception
by David Fitz (May 21)

That's great to hear, I hope it's put your mind totally at rest.
Good luck!!

by DKurup (May 21)

Thank you David, Sandy, Darley, Nigel for your answers.
We have decided to not stop the medication and continue. Talked to Dr. about this and he is okay with this as well.
Thanks again,

by nigel (May 9)

LIkewise i would agree, indeed this was covered this week at the cml horizons conference where they very clearly said fathering a child on imatinib is safe, and on the oher tkis there is growing

by darley (May 9)

I'm gob-smacked at that advice. For certain it's not best practice and in my opinion you're right to be concerned.
I notice that Sandy has referred you to a talk by Dr. Graeme
Category: Reproductive health

Replies: 6

Last updated: 21 May 2016