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Kenny on 21 September 2016

Category: Blood tests

Replies: 12

Last updated: 19 November 2016

Last br abl test showed a spike
by David Fitz (Nov 19)

Hi Kenny,
Since the last result was quite a big jump after some time off taking TKIs, its good to see this has settled. Hopefully at your next test you'll see a really good improvement in

by Kenny (Nov 19)

Hi,
My latest bcr abl test result stayed at 0.25.
I'm getting another test in January, hopefully the result improves by then.

Kenny

by David Fitz (Oct 7)

Hi Kenny,
Good to hear you have another test coming up - that is a jump that is near enough to a log change, so definitely something to keep a close eye on. When I took a break from TKIs for just

by Kenny (Oct 7)

Hi,
My results were 0.033 and are now 0.25, I'm getting another bcl abl test at the end of the month, when I will have been back on glivec for 2 months, so hopefully
Category: Blood tests

Replies: 12

Last updated: 19 November 2016
sandy craine on 15 November 2016

Category: Uncategorised

Replies: 1

Last updated: 16 November 2016

Shine a light on cancer - BBC
by nigel (Nov 16)

Hi Sandy, happy to help with a positive story, mine has been very good so far, however I cant see what is needed, eg a link, or whatever ?
Nigel

by sandy craine (Nov 15)

I am sure some of you would give others hope by sharing your CML stories with BBC Breakfast who are asking for patients to share their journey's and experiences of cancer diagnosis. CML is such
Category: Uncategorised

Replies: 1

Last updated: 16 November 2016
DJ on 13 November 2016

Category: Other conditions

Replies: 2

Last updated: 15 November 2016

Pain that moves after fighting an infection
by DJ (Nov 15)

Thanks David. Yeah I don't think it's the accupril either. It's hard to say though.
We went back to the doc today. She's had a lot of pain the last few days.

by David Fitz (Nov 15)

Hi there,
I'm sorry - I only saw this post now. I think it sounds difficult to know what is going on with your mum - at 80 years of age there could be many other factors at play, totally

by DJ (Nov 13)

My mom recently had what the doctor diagnosed as a urinary tract infection. She had major pain in her abdomen and stomach. She was unable to eat solid food. Her urine was brown
Category: Other conditions

Replies: 2

Last updated: 15 November 2016
hyderabadindia on 1 November 2016

Category: Uncategorised

Replies: 1

Last updated: 15 November 2016

pcr-abl test
by David Fitz (Nov 15)

Hi,
By "trado" do you mean tramadol? I think so, but wanted to check.
If so, tramadol can slow breathing which might explain the "heavy" feeling she is having on her chest.

by hyderabadindia (Nov 1)

HELLO MADAM,
RECENTLY WE ARE DONE WITH BCR-ABL TEST(NINTH MONTH ) AND CBP TESTS...THE RESULTS ARE AS FOLLOWING

1.COMPLETE BLOOD PICTURE
Category: Uncategorised

Replies: 1

Last updated: 15 November 2016
DJ on 31 May 2016

Category: Side effects

Replies: 7

Last updated: 13 November 2016

Managing high blood pressure from Tasigna - advice?
by DJ (Nov 13)

Thank you Sandy
Since the post she has gone up on her accupril and it seems to have brought her blood pressure under control. Now I'm a bit concerned since your post mentions they should

by sandy craine (Sep 23)

Hi DJ,
I feel for you! Your mum either needs to see a more engaged Haematologist who will take steps to change her TKI from nilotinib OR if she still cannot be persuaded then her current doctor

by DJ (Sep 20)

Thanks
I'm back to the thread, revisiting this issue yet again and reading your responses. Thank you all for responding.
We were hoping the blood pressure problem would go away, but here

by Ben K (Jun 7)

Hi there, Tasigna has cardio vascular side effects that are well documented. Your doctor must pay attention to this and arrange an appropriate referral to a cardiologist. She needs to be
Category: Side effects

Replies: 7

Last updated: 13 November 2016
grells on 3 November 2016

Category: Organising your life

Replies: 5

Last updated: 10 November 2016

getting back to 'normal'?
by Richard42 (Nov 10)

Hi Grells
Congratulations and I completely get where you are coming from. My response was similar - even a bit more dramatic perhaps as I was "zero" in 6 months. It was totally

by grells (Nov 10)

ladies
thank you so much for your words. i have read them quite a few times over the last week and they have pushed me forward. heading into work on the train for my third and final day of work for

by sandy craine (Nov 5)

Oh Grells, go on blow your trumpet .... no one else will as no one else can really understand how good it is to get those low molecular numbers - and so early. Congratulations.
Sandy

by chrissie (Nov 4)

A brilliant result. Congratulations!
I agree with Olivia about marmalade but I only eat it at weekends. No grapefruit, though, and I really miss that and no pomegranate either.
I managed to
Category: Organising your life

Replies: 5

Last updated: 10 November 2016
Smahmood on 23 October 2010

Category: Uncategorised

Replies: 8

Last updated: 10 November 2016

Hypo Pigmentation-Lightening of the skin (Glivec/Imatinib)
by Bee (Nov 10)

Hi John
Ted's dark patch on his nose has faded over the last few years and is not really noticeable now. It got blacker in the sunshine and he used to used my mineral powder make-up (shh

by johnw1001 (Nov 9)

Hi All,
Have had this problem of thinning of the skin especially on the nose;some of the early product information for imatinib highlighted sensitivity to the sun and changes in pigmentation.
In my

by David Fitz (Oct 22)

Hi Annie,
You're replying to a thread from 6 years ago, so probably won't get an answer from the person who posted the last message. Perhaps start a new thread wit any questions you have and

by annie t (Oct 21)

Shaz,
Did you see any changes in the skin after so many years of treatment?
Even I am on Gleevec from last 1 year and hypopigmention has made my life miserable.
Category: Uncategorised

Replies: 8

Last updated: 10 November 2016
Concetta Carella on 31 October 2016

Category: Treating CML

Replies: 4

Last updated: 7 November 2016

CML Ponatinib
by Concetta Carella (Nov 7)

Thanks Sandy, I'll look on to your advices.
Have a good day:)

by sandy craine (Nov 5)

Hi Concetta,
Sorry that your dad has not yet had a cytogenetic response. It could be that he has primary resistant disease which makes things all the more complex. I know at least one person who did

by Concetta Carella (Nov 2)

Thanks Chrissie for your quick response. he had mutation tests, but there are no mutations indeed. Hope there is some solution.
Cheers,
Concetta

by chrissie (Nov 1)

Hi Concetta
I'm sorry to hear about your father.
My initial response would be to ask if he has had a mutation test.
There is also Bosutinib and Imatinib ( although Imatinib is usually a first
Category: Treating CML

Replies: 4

Last updated: 7 November 2016
Steven Davies on 2 November 2016

Category: About CML

Replies: 0

Last updated: 2 November 2016

Hammersmith CML Support Group Meeting at Hammersmith Hospital Saturday 25th February 2017
by Steven Davies (Nov 2)

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

Replies: 0

Last updated: 2 November 2016
Ollie on 18 October 2016

Category: Blood tests

Replies: 12

Last updated: 2 November 2016

PCR at Hammersmith following allo BMT
by chrissie (Nov 2)

Hi John
How are you doing now? Really hope the side effects have abated,
best
Chrissie

by Parklife (Nov 1)

Hi Darley
Not wanting to deviate too far off topic here, but how are you feeling having been off TKI's for so long?
Are you feeling slightly/much different from being on Imatinib? If so, in what

by darley (Oct 31)

I had MUD BMT and then 5 years after had a rising PCR. In my case rapidly rising. I went on imatanib and had rapid success. I'm now 26 months in on the DESTINY trial and have had 14

by Ollie (Oct 28)

Thanks David,
That's a very helpful way of looking at it, and thanks for your example. I think as we have been through one molecular relapse in 2008, any minor increase in BCR-ABL, even
Category: Blood tests

Replies: 12

Last updated: 2 November 2016
Khishgee on 20 October 2016

Category: About CML

Replies: 4

Last updated: 1 November 2016

Advice me
by Khishgee (Nov 1)

Dear Sandy,
Thank you for your advice, it gave me very very big hope in my mind. Thank you.

by sandy craine (Oct 23)

Yes, Interferon comes in different forms and I suggested one that is used more often in Europe which is in a pegylated and is thought to have less side effects:
According to Wikipedia.......

by Khishgee (Oct 23)

Hi Sandy,
Thank you for you advice, i have 1 question again, is interferon Alfa 2a same as you suggested?
Regards
Khishgee

by sandy craine (Oct 22)

Hello Kishgee,
Your PCR results need to show that you have at least an optimal response to therapy i.e. at least stable results at or below MMR (0.1% Bcr-Abl) for 2 years according to recent
Category: About CML

Replies: 4

Last updated: 1 November 2016
jilu on 24 October 2016

Category: Blood tests

Replies: 2

Last updated: 27 October 2016

need Information on complete haematological response.
by sandy craine (Oct 27)

Hello Rajesh,
David has already put a higher than average WBC's into the context of infections etc. In the context of your treatment with 400mg imatinib at almost 3 months from start of therapy

by David Fitz (Oct 24)

Hi Rajesh,
I'm not great with the Indian numbering system. Lakh - is that 1,000,000?
White blood cell counts can move around quite a lot in perfectly healthy people. If someone without CML has a

by jilu (Oct 24)

Hi ,
just wanted to know how long it will take for WBC to get normal for newly diagnosed when on Imatinib 400mg.
its my 82nd day on imatinib 400mg intially my WBC counts were close to 3 lakhs and
Category: Blood tests

Replies: 2

Last updated: 27 October 2016
gordyboy on 7 October 2016

Category: Uncategorised

Replies: 1

Last updated: 18 October 2016

HIB vaccine
by David Fitz (Oct 18)

Hi -
Sorry you haven't got a more complete answer already, and indeed mine is far from ideal too!
The HIB vaccine is a "biosynthetic vaccine", that is one manufactured to look

by gordyboy (Oct 7)

Have respiratory issues as well as CML.
Resp consultant has advised me to have the HIB vaccine, but to check with CML consultant if it is okay.
IS the HIB vaccine the real name for the bog standard
Category: Uncategorised

Replies: 1

Last updated: 18 October 2016
David Fitz on 5 October 2016

Category: About CML

Replies: 2

Last updated: 11 October 2016

Can you help? Please vote online to get "The Chronic Myeloid Chronicles" book published.
by chrissie (Oct 11)

Done. I wish him well with this venture
Best to all
Chrissie

by David Fitz (Oct 10)

At over 370 votes, Ed's book is doing well but needs a bit more of a push.
If you haven't already voted for its publication, please do take the 2 minutes to do it.

David.

by David Fitz (Oct 5)

Ed Jones, a patient at Hammersmith Hospital here in the UK has written a book about his experience and journey with CML, having being diagnosed in 2006.
Ed needs to get 1000 votes in order to get
Category: About CML

Replies: 2

Last updated: 11 October 2016
anhenbo on 9 October 2016

Category: About CML

Replies: 1

Last updated: 10 October 2016

side effect
by nigel (Oct 10)

Hi Hennry. I have been on Glivec for 5 years now. Like you I suffer from eye bleeds occasionally, although it’s been a little while now I am pleased to say since the last. They are quite

by anhenbo (Oct 9)

Hello dear all
I am having Gleevec now for over 15 years and still responding well
Last yers I have some more side effects like bleeding eyes with is keeping under control with some fluid tear
Category: About CML

Replies: 1

Last updated: 10 October 2016
Bob1962 on 26 September 2016

Category: Uncategorised

Replies: 5

Last updated: 8 October 2016

Generic Imatinib
by sandy craine (Oct 8)

Thanks Richard
A very welcome,concise and lucid post on an important topic.

by nigel (Oct 5)

Excellent topic and comments, well explained and some comprehensive points. I share the view that Generics will be fine. I am sure our excellent NHS will not allow us anything that is not first

by Richard42 (Oct 5)

Hi
I watched the presentation on generic imatinib with interest, including the Q&A. The sense I got was very much that experience elsewhere is positive with the generics. That's

by sandy craine (Oct 4)

Hello Bob,
From my understanding about the situation in the UK, there will definitely be pressure exerted on clinicians to change people who are currently treated with the branded imatinib (Glivec)
Category: Uncategorised

Replies: 5

Last updated: 8 October 2016
Louise82 on 26 September 2016

Category: Side effects

Replies: 2

Last updated: 7 October 2016

side effects
by BeckyClark (Oct 7)

I've just started Imatinib (2 weeks)and consultant named this as a likely side effect. said to use Immodium if bothersome, but only I'm now only getting it once every other day, so just put

by Olivia (Sep 27)

Yep, me too, on & off over the years. Immodium generally sorts it.
Olivia

by Louise82 (Sep 26)

Okay-cant see any mention of this on Forum.
Has anyone been troubled by diarrhoea. I know Consultant & his registrar asked me every time I saw them if I had diarrhoea. I was & it
Category: Side effects

Replies: 2

Last updated: 7 October 2016
David Fitz on 1 October 2016

Category: Uncategorised

Replies: 1

Last updated: 3 October 2016

Videos & presentations from CML Patient Day 2016 now available
by chrissie (Oct 3)

Hi All
Have watched most of the presentations and found them all excellent. Can highly recommend to one and all. It really lifted my spirits - such optimism and positivity. A must for

by David Fitz (Oct 1)

Hi all,
Videos of the speaker presentations from the CML Patient Day (2016) are now available. You can also download the slides that were presented.
You an find them at this link: http://www.
Category: Uncategorised

Replies: 1

Last updated: 3 October 2016
grells on 4 August 2016

Category: Side effects

Replies: 3

Last updated: 1 October 2016

New to this - have questions!
by Irishmammy (Oct 1)

HI everyone, my little one has been on Imatinab for 2 years and she went from blond curly hair to straight dark brown and it actually got thicker. I suppose patients are different, thank God for

by Louise82 (Sep 26)

Hi,
I noticed my hair was thinning before I was diagnosed-obviously one of the symptoms. It is still thinner & I guess something I have to realise is here to stay.
Take Care
Louise

by David Fitz (Aug 9)

Hi there!
Hair thinning is a documented side-effect of nilotinib, though I don't think it's particularly common. Unfortunately I don't think there's an obvious solution to it. When I

by grells (Aug 4)

Hi there. Am pretty new to all this, diagnosed in March this year and currently kicking back for the Summer having been signed off work until hopefully October. All going well so far on
Category: Side effects

Replies: 3

Last updated: 1 October 2016
jilu on 30 September 2016

Category: Treating CML

Replies: 2

Last updated: 30 September 2016

TIPS for newly diagnosed .
by jilu (Sep 30)

Thank you very much David. Hope this would help me manage the pains.

by David Fitz (Sep 30)

Hi there,
Most patients get aches and pains at the start. It's all a big shock to the body, and the mind. Muscle pain is a pretty common one, and for most people it does go away or at least

by jilu (Sep 30)

Hi ,
today is my 59th day on Imatinib 400mg. from past 2 weeks i started experiencing ankle swelling and pain in legs and my right hand.
when i discussed this with my Doctor he said pains will be
Category: Treating CML

Replies: 2

Last updated: 30 September 2016