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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
Bob_India on 7 September 2016

Category: Treating CML

Replies: 3

Last updated: 12 September 2016

Worried about CML progresing :(
by Bob_India (Sep 12)

Thanks Sandy and David.
My next BCR-ABL is due next month and I will update about them to you.
As far as my Acid Reflux concerned I will try to do what you both have suggested.
I have one

by sandy craine (Sep 10)

Hello Bob,
" The only problem I have is platelets. Also since I come from the North-East part of India my doc says that that region people tend to have a low level of platelets

by David Fitz (Sep 9)

Hi Bob,
Why are you worried about progression? Has your doctor given you reason to worry, or is there something else that makes you concerned?
You have mentioned your platlets a lot, but what is

by Bob_India (Sep 7)

Hi All,
I am Bob from India and following this forum for a long long time. I was detected with CML in December 2008 at the age of 25 and started my Imatinib Glivec from January 2009. So it
Category: Treating CML

Replies: 3

Last updated: 12 September 2016
KerrieLouise on 10 September 2016

Category: Side effects

Replies: 4

Last updated: 10 September 2016

Advice needed
by chrissie (Sep 10)

Hi Kerrie
Sorry to hear about your problem. You can certainly do without this. If i were you I would contact my doctor - GP/haemo/specialist nurse asap and ask for advice.
Hope things improve

by Parklife (Sep 10)

Hi Kerrie.
I am male with CML so can't comment direct, however I just wanted to mention someone I know who was diagnosed many years ago (she is doing well now!) to maybe make you feel better. One of

by KerrieLouise (Sep 10)

hi
I am on Imatinib 400mg
my white blood count was 31.6 and after 1 week and 4 days of treatment is down to 18.4 my platelet count is 1250 now it was 1841
the nurse said my

by David Fitz (Sep 10)

Hi Kerrie,
Welcome to our little club. No doubt it wasn't a membership you wanted but we're all here to help each other.
Do you have a copy of your latest blood report? I wonder perhaps if
Category: Side effects

Replies: 4

Last updated: 10 September 2016
dadbags on 7 September 2016

Category: Uncategorised

Replies: 2

Last updated: 9 September 2016

NEWBIES WHO HAVE QUESTIONS
by David Fitz (Sep 9)

Ho JoAnn,
Well, it all depends on what your doctor has said to you.
Concerned? Maybe not. But that doesn't mean you shouldn't take things very seriously.
Can you fill us in a bit on what

by JoAnn (Sep 8)

Hi I am newly diagnosed. My Drs don't seem too concerned. Should I be?

by dadbags (Sep 7)

hi all-im 15yr veteran of CML-if anyone has any questions or has anxiety about CML -just send me a message-im only a PATIENT not a dr.but if i can ease ur pain just give me a holler-steve(dadbags)
Category: Uncategorised

Replies: 2

Last updated: 9 September 2016
sandy craine on 5 September 2016

Category: Uncategorised

Replies: 0

Last updated: 5 September 2016

UK CML Patient Day - Sept. 24th 2016
by sandy craine (Sep 5)

Prof. Maihri Copeland who is organising this years patient day (Manchester) has asked if we can suggest someone who is willing to give a 5 minute talk about their experience of TKI therapy. John-
Category: Uncategorised

Replies: 0

Last updated: 5 September 2016
RodM on 1 September 2016

Category: Treating CML

Replies: 1

Last updated: 1 September 2016

Spirit 2 - Post Trial Availability of Dasatinib
by David Fitz (Sep 1)

That is good news. Coupled with the upcoming appraisal of TA241 (including the use of dasatinib as first line treatment) and TA251 (including use of dasatinib of second line treatment) NICE guidance

by RodM (Sep 1)

I'm about 4.5 years into the trial, on Dasatinib and the availability of Dasatinib on the trial protocol ends in around March 2018, the 5 year anniversary of the last enrolled patient.
It has
Category: Treating CML

Replies: 1

Last updated: 1 September 2016
AlisonB on 16 August 2016

Category: Uncategorised

Replies: 7

Last updated: 1 September 2016

Consultant wants to take me off Imatinib
by Olivia (Sep 1)

My experience is slightly different from those above. I was on Spirit2 for 5 years, and had good results from imatinib. I asked about going on the Destiny trial, but my hospital is not

by darley (Aug 31)

I think you'll struggle to find someone else with a consultant that's suggested what yours has. Put simply it's not best practice and indeed it's precisely what my

by AlisonB (Aug 18)

Thanks to all who have replied. You have given very helpful advice and I will do more research. Nigel - my only symptom on Imatinib has been puffy eyes, so have been very fortunate. I would like to

by darley (Aug 18)

I'm in the DESTINY trial and just posted results at 24months.
Got to say I agree with what everyone here has said. Ideal would be within the auspices of clinical trial.
Category: Uncategorised

Replies: 7

Last updated: 1 September 2016