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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
Anonymousgrl on 28 September 2016

Category: Reproductive health

Replies: 3

Last updated: 29 September 2016

Anyone with perspective on planning a pregnancy on dasatinib?
by David Fitz (Sep 29)

Hi again,
It's important to know your latest PCR result. Could you find out from your hospital? I'd have thought it should be in your most recent clinic notes.
Since you have been taking

by Anonymousgrl (Sep 28)

I live I the USA and I'm not currently aware of my most recent PCR. I have read that some women were treated with interferon or leukapheresis, but that it didn't control their CML and they sometimes

by David Fitz (Sep 28)

Hi.
It's late tonight so I can't send you the details of what I'd like to tell you, but I will tomorrow.
Long story short, with a patient that is in a good place (and with 4 yrs MMR you

by Anonymousgrl (Sep 28)

Hi, I'm a 25yo female, diagnosed four years ago in complete molecular remission for close to three years on Sprycel (dasatinib). I've been considering approaching my doctor about creating a
Category: Reproductive health

Replies: 3

Last updated: 29 September 2016
UCLH on 27 September 2016

Category: About CML

Replies: 3

Last updated: 28 September 2016

Online Q and A session with UCLH expert Dr Andres Virchis, consultant haematologist
by UCLH (Sep 28)

Hello again all,
Many thanks for taking part and making the event a success. If you missed it, the web chat can be replayed at the link below:
https://www.uclh.nhs.uk/aboutus/webchat/Pages/

by chrissie (Sep 27)

Thank you so much for this and especially to the doctor for taking time to answer the questions. I found it very reassuring to read what he said about generic imatinib.
Best to all
Chrissie

by David Fitz (Sep 27)

Thank you for arranging, and thank you to Dr Virchis for taking the time to answer everyone's questions.

by UCLH (Sep 27)

Good afternoon all,
I just wanted to make you all aware that UCLH are holding an online Q and A web chat about CML with consultant haematologist Dr Andres Virchis this afternoon at 3pm.
You can
Category: About CML

Replies: 3

Last updated: 28 September 2016
Louise82 on 21 September 2016

Category: Uncategorised

Replies: 6

Last updated: 26 September 2016

TRAVEL
by Louise82 (Sep 26)

Thanks Nigel,
Definitely reassures me. I wants so much to go & don't see Specialist until late October by which time fares will have risen.
Will get health insurance, but because of cost

by Louise82 (Sep 26)

How lovely to have a beautiful baby Lavanna. Pleased all is working for you for your information
Warm Regards
Louise

by Louise82 (Sep 26)

Thank you for informative replies-think as I am fretting so for my family I will go. Wont have trouble with Australia as I am Australian with Medicare still. I have dual citizenship.
Warm Regards

by MartinZA (Sep 23)

Hi Louise
Travelling is my great passion in life, and I have already taken two long(ish) trips overseas not even a year after being diagnosed. I recently returned from Azerbaijan to my home in
Category: Uncategorised

Replies: 6

Last updated: 26 September 2016
David Fitz on 16 September 2016

Category: Uncategorised

Replies: 13

Last updated: 26 September 2016

Webcast Details: CML Patient Day 2016 - Saturday, 24th September
by chrissie (Sep 26)

PS Olivia - try Blink for watery eyes ( sold over the counter in any pharmacy). Recommended by my optician who explained that although eyes are watering, this is actually a symptom of dry eyes ( He

by chrissie (Sep 26)

Hi Olivia and David Fitz
Well, we all completed the walk although the wind was ferocious and we were walking against it which made it hard going. At least it didn't rain so the conditions

by Olivia (Sep 24)

Hi Chrissie
The hospital visit went fine, I'm still on 200mg and the side effects are certainly less annoying - though I still get occasional cramps and frequent watery eyes. My

by chrissie (Sep 23)

Thank you, Sandy. I always wanted the extra 0 and now I have it - long may it last! I wasn't surprised to fail DESTINY when I'd never reached MR4 but If I can keep it down there for a
Category: Uncategorised

Replies: 13

Last updated: 26 September 2016
skiinglaketahoe on 23 September 2016

Category: Uncategorised

Replies: 0

Last updated: 23 September 2016

CML Web Chat by UCLH hospital
by skiinglaketahoe (Sep 23)

Hi
Just to let everyone know that UCLH (my hospital) is having a web chat this coming Tuesday afternoon. Questions can be submitted in advance and the web chat can be followed on twitter or by
Category: Uncategorised

Replies: 0

Last updated: 23 September 2016
sandy craine on 23 September 2016

Category: Uncategorised

Replies: 0

Last updated: 23 September 2016

UK CML Patient Conference 2016 - Links for Webcast Viewers
by sandy craine (Sep 23)

The UK CML Patient Day is an annual conference that gives attendees the opportunity to listen to talks from national and international medical experts in CML. The day will cover topics ranging from
Category: Uncategorised

Replies: 0

Last updated: 23 September 2016
dadbags on 3 September 2016

Category: Uncategorised

Replies: 6

Last updated: 19 September 2016

reduction in my dosage from 600mm of gleevac to 300mm
by David Fitz (Sep 19)

That is an excellent result for you!
In time, and after holding your response for a while, are you going to consider trying to stop taking imatinib altogether and see if you maintain your response?

by dadbags (Sep 14)

hi its me again--well so far so good my reduction in dosage seems to work-PCR RESULTS 0.0000--hope it continues-ty all

by dadbags (Sep 6)

hi sandy thank u very much for responding to my post-no BULL both u guys(nigel()really helped me get through this week---ty again very helpfull -BEST REGARDS STEVEN

by dadbags (Sep 6)

hi nigel-thank u for answering my post u put my mind at ease-ty very much-i hope it works out for u-it takes a lot of balls to go in tha trial program of no GLEEVAC--saw my oncologist today
Category: Uncategorised

Replies: 6

Last updated: 19 September 2016
sandy craine on 17 September 2016

Category: Treating CML

Replies: 0

Last updated: 17 September 2016

Closer to a Cure?
by sandy craine (Sep 17)

Just a heads up on the article I have posted .... see yellow feature box on this or the Home page. Some of you may be aware that Prof. Holyoake's team in Glasgow have been working for many years
Category: Treating CML

Replies: 0

Last updated: 17 September 2016
chrissie on 14 September 2016

Category: Uncategorised

Replies: 0

Last updated: 14 September 2016

Bloodwise Exeter walk
by chrissie (Sep 14)

Hi Everyone
I'm walking from Exeter to Starcross on Sept 24th to help raise money for Bloodwise. All donations gratefully received
http://www.justgiving.com/Chrissie-Mortimer
Please excuse basic
Category: Uncategorised

Replies: 0

Last updated: 14 September 2016
Bee on 5 August 2016

Category: Uncategorised

Replies: 2

Last updated: 12 September 2016

Talking of eye problems.....
by Bee (Sep 12)

Hi Sandy and everyone
Ted's minor strokes were definitely caused by clots, rather than
bleeds, so now they are trying to find out where they came from.......to try and prevent any more.
He has

by sandy craine (Sep 7)

Hi Bee,
How is it going with Ted and his eye problems/stroke? I hope all is well,
Sandy

by Bee (Aug 5)

Hi All
My husband Ted has had CML for 15 years with no real problems except the usual side effects from Imatinib. However a few months ago he noticed he couldn't see to read his music properly.
Category: Uncategorised

Replies: 2

Last updated: 12 September 2016
David Ryner on 27 April 2016

Category: Uncategorised

Replies: 5

Last updated: 12 September 2016

Treatment of CML with dasatinib in Scotland
by nigel (Sep 12)

Great news David, thanks for the update and help in getting this though, England to follow soon we all hope, and expect !

by David Ryner (Sep 12)

On schedule., the SMC have published their recommendations for dasatinib treatment. We are very pleased to see that dasatinib is recommended as a treatment for CML for:
(i) newly diagnosed adult

by David Ryner (Aug 9)

We have been informed that the SMC will publish their decisions on 1st and 2nd line dasatinib treatment on the 12th September. We remain optimistic that their decision will be to recommend dasatinib

by David Ryner (Jun 29)

We were advised by the SMC last week that a PACE meeting for 2nd line treatment is to be convened and we have now completed the paperwork that will allow us to attend the meeting in Glasgow on the
Category: Uncategorised

Replies: 5

Last updated: 12 September 2016