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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
sprycml on 24 July 2016

Category: Side effects

Replies: 12

Last updated: 28 August 2016

Questions from one newly diagnosed and on Tasigna
by bdmemphis (Aug 28)

I was 35 when I was diagnosed in March 2015. Male. I was on Tasigna before I had to switch to a new TKI. Like you I lived a pretty athletic life prior to diagnosis. I'm in the

by grells (Aug 4)

hi there. i am newly diagnosed too (march 2016). in response to your first question i take ibuprofen for the aches and pains i experience. don't get them all the time - perhaps on days of

by chrissie (Jul 29)

Thank you again. David, Yes, I'm taking 20mgs and it's working just great ( at the moment). Good to now that there's a choice if I need it.
Best
Chrissie

by David Fitz (Jul 28)

Last thing from me on this ... I imagine your doctor has prescribed you 20mg. That's the normal starting dose. If it's not working 100%, just take more (discussed with your doctor, of course
Category: Side effects

Replies: 12

Last updated: 28 August 2016
David Ryner on 28 July 2016

Category: Uncategorised

Replies: 3

Last updated: 24 August 2016

Great news on the availability of bosutinib in England
by David Ryner (Aug 24)

NICE has today published their Guidance document for bosutinib. You can access it here: https://www.nice.org.uk/guidance/ta401
My previous posts have given details of the clinical criteria that

by David Ryner (Aug 4)

Yes David you are correct.
A criteria an adult patient would have to meet in order to be treated with bosutinib is a previous treatment with at least one TKI.
Currently in England this effectively

by David Fitz (Jul 31)

That is excellent news.
If I read this correctly, does that mean that a patient would still need to be treated on imatinib or nilotinib before being eligible for hosting?

David

by David Ryner (Jul 28)

As of tomorrow bosutinib will be available for all its licensed indications rather than the more recent heavily restricted limitations placed on its use via the current Cancer Drugs Fund (CDF).
For
Category: Uncategorised

Replies: 3

Last updated: 24 August 2016
gordyboy on 22 August 2016

Category: Uncategorised

Replies: 4

Last updated: 22 August 2016

CML and COPD and Bronciectsis
by gordyboy (Aug 22)

Hi David,
Yes I am newly diagnosed with CML (amongst others) but my main concern was COPD Exacerbations. The CML started with routine blood tests which showed a high white blood cell count.
Have

by David Fitz (Aug 22)

Hi again Gordon,
Are you newly diagnosed? If so, and you have any questions at all we'll all be delighted to help as best we can. You will also find useful info under the "CML Facts"

by gordyboy (Aug 22)

Hi David,Thanks for your reply, it's all a bit of puzzle for me at the mo but am pleased to learn that Imatinib and Amoxycillin/Doxycycline are compatible.
Regards
Gordon

by David Fitz (Aug 22)

Hello and welcome to our rather exclusive club that we'd all rather not be in! :-)
Imatinib and amoxicillin don't have any known interactions. Nor does imatinib and doxycycline. There's
Category: Uncategorised

Replies: 4

Last updated: 22 August 2016
Lynette on 20 August 2016

Category: Uncategorised

Replies: 2

Last updated: 21 August 2016

Pleural Effusion
by Lynette (Aug 21)

Hi Sandy, thank you so much for your prompt reply. The flyer you have attached and your understanding of PE are incredibly useful. Thank you once again and thank you for this amazing forum. Have a

by sandy craine (Aug 21)

Hi Lynette,
First bit of advice is that if you feel something is not quite right then cut out the GP and go straight to your haematologist. That said, at least now you have a clear diagnosis

by Lynette (Aug 20)

Hello Everybody,
After being treated for a long lasting chest infection and hayfever for the past 2 months and having my suggestion of pleural effusion as a side effect of Dasatinib dismissed, my gp
Category: Uncategorised

Replies: 2

Last updated: 21 August 2016
Kate on 20 September 2011

Category: Uncategorised

Replies: 3

Last updated: 18 August 2016

Nilotinib and Liver Function
by chrisk (Aug 18)

Hi Kate,
How long did it take for your liver levels to return to a level where you could continue with the drug?
Chris

by Kate (Sep 27)

Thanks for your advice Sandy. For now I am not taking milkthistle as they would prefer me not to take any herbal remedies as they are trying to work out why the enzymes are so highly elevated. I am

by sandy craine (Sep 20)

Dear Kate,
Given that TKI's are processed through the liver it is not surpirsing the sometimes- and in some people- normal liver function is affected. As you can see from the information below-

by Kate (Sep 20)

Hello all,
I was diagnosed in September last year and have recently had a medication change from Glivec to Nilotinib (as part of a trial.)
I have been on Nilotinib for three months now and things
Category: Uncategorised

Replies: 3

Last updated: 18 August 2016
Samsam on 14 August 2016

Category: Reproductive health

Replies: 3

Last updated: 15 August 2016

Nilotinib effect on pregnancy when male is the patient
by sandy craine (Aug 15)

Hi, please read the following discussion thread (just lower down this page). I think there is a lot of positive feedback on fathering children whilst remaining on therapy.
http://www.

by Samsam (Aug 15)

Thanks david....ill definitely give it a look soon....

by David Fitz (Aug 14)

Hi!
If I were you, I would invest the time in watching this recording a a conference Nigel Deekes (from this board) and I were at a few months ago. The conference was CML Horizons, and there was a

by Samsam (Aug 14)

Hi
Im looking to get in touch with people who have fathered children while on nilotinib. Im on nilotinib and am planning to have kids. I went off nilotinib for 3 months to make sure effect on sperm
Category: Reproductive health

Replies: 3

Last updated: 15 August 2016
Malikah on 31 July 2016

Category: Uncategorised

Replies: 2

Last updated: 13 August 2016

New to the group.
by Malikah (Aug 13)

Hi Sandy
Thank you for your response.
Firstly, I reside in Cape Town South Africa so unfortunately & regrettably will not be able to attend the CML Patient Day. I will look into finding

by sandy craine (Aug 2)

Hello Malikah, welcome to this group.
I must say that I have not come across extreme hair loss as a side effect of TKI therapy... at least to the extent that you indicate you have suffered. You said

by Malikah (Jul 31)

Hi All,
I came across this website while I was searching the net for information to combat the hair loss resulted from using Nilotinib. I decided to join the group. I have been living with CML for
Category: Uncategorised

Replies: 2

Last updated: 13 August 2016
alroder on 5 January 2016

Category: Reproductive health

Replies: 6

Last updated: 11 August 2016

Questions for newbie :)
by sandy craine (Aug 11)

Hi, Thank you so much for sharing your story which I am sure will reassure many Male patients who are contemplating fathering children whilst still on TKI therapy. Congratulations on the birth of

by Schlorf06 (Aug 11)

Good evening-- I just wanted to share my husbands and I's experience. He's had CML for almost 8 years and has been treated with Gleevec and now Sprycel. We have 4 healthy children. Our

by alroder (Jan 11)

Thanks for the insight. We actually spoke with our doctor about it too, and we are now in the process of some fertility testing to make sure everything is good to go before we start trying. As long

by MekaMa (Jan 7)

I think this is them being OVERLY cautious. While it is true that a man's sperm can be the cause of defects too we have to remember that in the world of sperm, it is survival of the fittest. if
Category: Reproductive health

Replies: 6

Last updated: 11 August 2016
chrissie on 6 August 2016

Category: Uncategorised

Replies: 0

Last updated: 6 August 2016

Walking for Bloodwise - Exeter area
by chrissie (Aug 6)

https://bloodwise.org.uk/event-challenges/walk-or-trek/south-west/exeter...
Best to all
Chrissie
Category: Uncategorised

Replies: 0

Last updated: 6 August 2016
Jadey on 3 August 2016

Category: Getting help

Replies: 5

Last updated: 4 August 2016

Pregnant while taking Glivec and scared!!
by sandy craine (Aug 4)

Hi Jadey,
I agree with everything that has been said... the danger with taking imatinib and pregnancy seems to be within the first trimester (3 months) which David has already pointed out. It

by nigel (Aug 3)

Hi Jadey, I have little to add other than to say I agree absolutely with all David has said. There are risks, and some potential large ones for you both, but the rewards can be great, as many have

by David Fitz (Aug 3)

Hi again,
While 8% at 5 months is nothing to worry about from a treatment response point of view for you, it's too high to stop taking TKIs for the length of a pregnancy I think. I was hoping

by Jadey (Aug 3)

Hi thankyou so much for replying. It was at 8% last month and I've had CML for 5 months now. The doctors over whelming me with the risks and so scared for me and the baby but I know that I'm
Category: Getting help

Replies: 5

Last updated: 4 August 2016
David Fitz on 4 August 2016

Category: Treating CML

Replies: 0

Last updated: 4 August 2016

Slides from CML Horizons conference 2016
by David Fitz (Aug 4)

Hi all,
Nigel Deekes and myself attended the CML Horizons conference in May this year, which was organised by CML Advocates.
The slides from each talk / presentation are available here.
I have notes
Category: Treating CML

Replies: 0

Last updated: 4 August 2016
Terri on 2 August 2016

Category: Uncategorised

Replies: 4

Last updated: 3 August 2016

Hi there
by Terri (Aug 3)

Thank you Chris
I will keep reading the leaflet, and we are asking for all her blood test results tomorrow so we can do a graph of such
It is encouraging for me to read the journeys of people

by cdw5000 (Aug 3)

Hi Terri,
Sandy's advice to read through the guide is very good advice and it will better arm you with the right questions to ask and, more importantly, understand the answers. I think the most

by Terri (Aug 2)

Hi Sandy
Thankyou for replying
Receiving treatment in Gloucestershire and is 23.
The graph we saw had a bottom line and a top line the top line was near the top of the graph and I asked what

by sandy craine (Aug 2)

Hi Terri,
just a few questions before I can offer you and your daughter advice.
How old is she?
Where is she being treated?
When you say 'after noticing a graph' do you mean that her doctor
Category: Uncategorised

Replies: 4

Last updated: 3 August 2016
nigel on 27 July 2016

Category: Uncategorised

Replies: 3

Last updated: 2 August 2016

Intersting little video from Novartis that may be good to share with Freinds, family or employers about your CML
by sandy craine (Aug 2)

Thanks Nigel,
we have had the first in this series on our video page since this time last year but I have added the others in the series including David's story. I am sure all of these will be

by MartinZA (Aug 2)

Thanks Nigel and David - these videos are great. At our school I am going to give a presentation about my leukaemia on International CML Day this year and I'm thrilled to have this easy-to

by David Fitz (Jul 27)

Hi Nigel -
I think that series of videos is really good. I hadn't seen the one you posted, but am familiar with the set of them.
Here's my story, as part of that series. It's a bit

by nigel (Jul 27)

Hope this is ok to share here, but been well received on Facebook, so thought I would share further. Nigel
https://www.youtube.com/playlist?list=PL6YfpI0VEjhvPGBH9jlkam4jEkPujnwiA
Category: Uncategorised

Replies: 3

Last updated: 2 August 2016