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Steven Davies on 24 December 2014

Category: Uncategorised

Replies: 1

Last updated: 25 December 2014

24th December a day to remember.
by sandy craine (Dec 25)

Thanks for reminding us about the loss of Professor Goldman. He was one of the doctors that saved my life when I was diagnosed 16 years ago. Many still mourn his loss.
Sandy

by Steven Davies (Dec 24)

1 year ago today sadly Professor John Goldman passed away. A pioneer in CML and a great man who lived and breathed for a remedy for CML. Without his dedication CML survival rates would not be were
Category: Uncategorised

Replies: 1

Last updated: 25 December 2014
carmeplas on 28 December 2014

Category: Uncategorised

Replies: 3

Last updated: 6 January 2015

Dizziness and vertigo
by teddyb (Jan 6)

Hello, i feel dizzy some times myself, and its usually related to my tense shoulders. That is why i do physical therapy a few times pr month. (Massage and some exercises) This really helps for me.

by sandy craine (Jan 1)

Hi Carmen,

another link here to possible homeopathic treatment of vertigo- you might find it useful.
http://www.drhomeo.com/vertigo/vertigo/
Sandy

by David Ryner (Dec 31)

Hi Carmen,
I am not sure if this is relevant but there was an article in the DM about possible causes of dizziness- my parents told me about it and when I saw your post I looked it up. Ear infection

by carmeplas (Dec 28)

Dear All,
david is already 7 years and a half in Glivec, and he is doing still ok, however, recently he is experiencing some side-effects, mostly related to dizziness.

Last week, his heart
Category: Uncategorised

Replies: 3

Last updated: 6 January 2015
martin1960 on 11 December 2014

Category: Uncategorised

Replies: 5

Last updated: 16 December 2014

1 Year since diagnosis -Update
by Richard42 (Dec 16)

Hi Martin
In the early years (I've been on imatinib since 2009 - now on DESTINY at reduced dose) I often had nausea if I got the timing wrong. For me, taking the tablet about 15 mins to half an

by chrissie (Dec 16)

Hi Martin
Many congratulations on your excellent response.
With regard to nausea, I also take Imatinib and also suffered nausea for an hour after eating and taking my tablet. I have found that a

by Lucas (Dec 16)

Hi martin. Congratulations for the great results!
today it's my first year since diagnosis. like you, my response was not great for around 7 months (6% pcr at the time) but i had to change to

by sandy craine (Dec 14)

Hi Martin,

Well done, you have achieved a very good molecular response - 0.002%- within 12 months which is one of the recommended goals for optimal response according to ELNet guidelines:
Category: Uncategorised

Replies: 5

Last updated: 16 December 2014
sandy craine on 9 December 2014

Category: Uncategorised

Replies: 3

Last updated: 11 December 2014

Platelet Dysfunction linked to TKI therapy in CML
by sandy craine (Dec 11)

I am not sure Pat.... I will try to find out and let you know.
Best wishes to you and glad to hear you are still doing well,

sandy

by pat preston (Dec 10)

I realise platelet information comes in a full blood count, but I wondered if there was another way to diagnose platelet dysfunction information? Does the study just use platelet information to make

by pat preston (Dec 10)

Thank you for posting this study Sandy. I am wondering if there is, in fact, a way that one can find out if one has a platelet dysfunction? I have been on imatinib for 14 years - the last six at

by sandy craine (Dec 9)

December 7, 2014 – San Francisco, California – A high prevalence of platelet dysfunction has been demonstrated in patients with chronic myeloid leukemia (CML) receiving all types of tyrosine kinase
Category: Uncategorised

Replies: 3

Last updated: 11 December 2014
sandy craine on 6 December 2014

Category: Uncategorised

Replies: 8

Last updated: 9 December 2014

ASH 2014- CML Abstracts of interest
by teddyb (Dec 9)

Thank you for reply Sandy. Will be interesting to follow the progress of ABT-199. (And the other new agents on the horizon)
Edit: Glad to see the info on ABT-199 and PF-114 on the front page, both

by sandy craine (Dec 9)

There has been some interest in this via posts on this forum earlier this year- and as my mum has CLL I have been watching the results of the c/trials for CLL and it seems to be having some success

by Olivia (Dec 9)

I'm seeing him in January, and will discuss the possibility with him then. Thanks again, Sandy

by teddyb (Dec 9)

"512 Cooperative Targeting of Bcl - 2 Family Proteins by ABT - 199 (GDC - 0199) and Tyrosine Kinase Inhibitors to Eradicate Blast Crisis CML

and CML Stem/Progenitor Cells"
https://ash.confex.
Category: Uncategorised

Replies: 8

Last updated: 9 December 2014
nigel on 3 December 2014

Category: Uncategorised

Replies: 2

Last updated: 3 December 2014

3 year update
by cdw5000 (Dec 3)

Congrats on the result - an excellent outcome three years in. There will always be blips and none of us really know if that's the level of CML in our bodies moving up and down or 'noise' from

by sandy craine (Dec 3)

I can't believe its been 3 years Nigel! Well done on your steady progress down to a very comforting 0.04%. You are right to say that imatinib is a good drug- it has saved so many lives. Side effects

by nigel (Dec 3)

Hi all, three years in on Imatinib. Last PCR 0.04 June, last week 3 monthly hospital visit told no PCR result as now 6 monthly as stead PCR. Couple of blips, on the way. Imatinib may be a little
Category: Uncategorised

Replies: 2

Last updated: 3 December 2014
On Fire on 2 December 2014

Category: Uncategorised

Replies: 2

Last updated: 10 December 2014

Effectiveness of the TKI
by wshi2001 (Dec 10)

Congradulations, you reached normal blood count in just 2 months time. That shows the drug is working well for you. I too was dx not long ago (3 months). Just want to share my experience with you.

by sandy craine (Dec 3)

Hi,

the quick answer is yes, your medication is obviously working. You should expect to see your blood cell counts return to normal within the first 6- 8 weeks, then it is likely that you will

by On Fire (Dec 2)

Hi all 2 months since diagnosis and my heamological is now back to normal. The doctor said this was very quick. However my question is that, does this suggest that the medication is working? I'm
Category: Uncategorised

Replies: 2

Last updated: 10 December 2014
Steven Davies on 29 November 2014

Category: Uncategorised

Replies: 3

Last updated: 24 December 2014

I have started a petition to keep drugs on the cancer drug fund.
by Steven Davies (Dec 24)

The petition was about all drugs on the cancer drug fund and not any 1 drug in particular so I think that the clarification was unnecessary. The cancer drug fund is for all in Chronic, accelerated

by sandy craine (Dec 1)

Just for clarification, dasatinib is only being re-evaluated for use in Blast phase, therefore access to dasatinib for treatment of chronic and accelerated is not in question. It is likely that

by Steven Davies (Nov 29)

Waiting for cml support to sort out the 38 degrees address
Please go to the 38 degrees website and and search for CDF.

by Steven Davies (Nov 29)

Hi

I have started a petition via the 38degrees website to petition the Prime Minister the Rt Hon David Cameron to keep Dasastinib(Sprycel) and Bosutinib (Bosulif) on the CDF list. Please sign
Category: Uncategorised

Replies: 3

Last updated: 24 December 2014
kathy on 29 November 2014

Category: Uncategorised

Replies: 1

Last updated: 1 December 2014

Swollen glands
by sandy craine (Dec 1)

Hi Kathy,

I don't think you should be so worried.... given you still have remnants of the original viral infection (cough, cold sores, ears blocked etc) it follows that your lymph glands in

by kathy (Nov 29)

Hi all, not been on for a while , i was dx 2003 on 600mg glivec.im just abit worried as my glands are swollen in my neck, i did have a viral infection a few weeks ago and still have a cough, cold
Category: Uncategorised

Replies: 1

Last updated: 1 December 2014
jeffcarroll34 on 20 November 2014

Category: Uncategorised

Replies: 4

Last updated: 21 November 2014

Major BCR/ABLl/ABLl (International Scale): 2.1% at Three Months
by sandy craine (Nov 21)

Hi Jeff,
Well done- looks like you are well within ELN recommendations for an optimal response at 3 months, < l0% BCR-ABL ..... Hopefully your doctor will tell you the same ;o)
Sandy

by Lucas (Nov 20)

so do the happy dance and celebrate. it was a very good result. under 10% IS at 3 months is considerer an optimal result. :)

by jeffcarroll34 (Nov 20)

Yes it is, I just had it emailed to me and haven't spoke to my doc about it.

by Lucas (Nov 20)

is this yours result? if it is, it was great for 3 months. it's an optimal response. congratulations. :)
Category: Uncategorised

Replies: 4

Last updated: 21 November 2014
wshi2001 on 20 November 2014

Category: Uncategorised

Replies: 9

Last updated: 29 April 2015

Low Platelets, low WBC, low RBC
by AnthonyI (Apr 29)

William -
May I ask how everything turned out with you low WBC situation?

by Lucas (Nov 24)

you're welcome, william. i just got my CBC. all "normal" (my normal): 3800 wbc, 87 K platelets (from 79K a month ago) and 13.8 HB. hope you can come back to the medication soon. cheers.

by wshi2001 (Nov 23)

Thanks Lucas and Dennis. By looking at fellow CMLer's posts, I discover that it is really up to the doctors to decide for individual cases, and possiblly every doctor has their own standard,

by Dennis (Nov 22)

If it helps at all, my platelets have been around 45-50 since I went on Glivec 12 years ago. Prior to Glivec, they were around 12-15 for 8 years. The Doctors told me then, that I would have to stop
Category: Uncategorised

Replies: 9

Last updated: 29 April 2015
sandy craine on 19 November 2014

Category: Uncategorised

Replies: 2

Last updated: 26 November 2014

drugs to be assessed at the next meeting of the national CDF panel – December 2014
by David Ryner (Nov 26)

Thanks Chris.
I just want to stress that treatment of chronic or accelerated phase CML using dasatinib will NOT be included in the re-evaluation exercise. Ponatinib will NOT be re-evaluated for

by cdw5000 (Nov 19)

And we're back to the dichotomy of high drug pricing funding the development of other drugs. I know the panel is looking at efficacy vs cost vs additional quality time, but it all comes down to

by sandy craine (Nov 19)

The following list of drugs, which are currently on the CDF list, will be re-evaluated at the next meeting of the national CDF panel on 15 and 16 December 2014. The re-evaluation of existing drugs,
Category: Uncategorised

Replies: 2

Last updated: 26 November 2014
JohnnyBoy on 17 November 2014

Category: Uncategorised

Replies: 7

Last updated: 19 November 2014

SCT next February or March
by JohnnyBoy (Nov 19)

Hello Sandy,
This is great news! I'll get on the phone to my consultant tomorrow to see if I can give Ponatinib a try during the wait. Who knows, perhaps this could be the TKI for me!

by sandy craine (Nov 19)

Hi Johnny,
Last Wednesday there was a meeting in Cardiff of the All Wales Medicines Strategy Group (AWMSG) which discussed ponatinib for use in:
‘..the treatment of adult patients with: chronic

by sandy craine (Nov 18)

See my transplant diary here

http://caringbridgeclassic.org/europe/sandycraine/
Sandy

by JohnnyBoy (Nov 17)

The mutation test was negative, so the head of the transplant team in Cardiff recommended a SCT. What can I expect after the procedure? I'm thinking of going for a mini transplant as the risks of
Category: Uncategorised

Replies: 7

Last updated: 19 November 2014
DJ on 18 November 2014

Category: Uncategorised

Replies: 12

Last updated: 12 December 2014

Mom will be starting Tasigna and Allipurinol. Scared to daeath after reading the pamphlet?
by DJ (Dec 12)

Thank you Sandy, I am grateful she is covered. But we were just so shocked to see the price. I was not aware they were looking at privatizing your system - I hope for your sake they don't. Many

by DJ (Dec 12)

Thank you (and thank you also for taking the time to reply when you work a 50+ hour week!)

She hasn't had any nausea or headaches, thankfully. We did Thanksgiving a little early out of

by sandy craine (Dec 8)

DJ, this is probably quite a normal reaction- remember there will be quite a few white cells that are being knocked out so it will take some time for her body to adjust to that never mind the

by DJ (Dec 7)

SHe is a bit spacey and drugged on this. Is that normal and does it get better?
Category: Uncategorised

Replies: 12

Last updated: 12 December 2014
Smahmood on 16 November 2014

Category: Uncategorised

Replies: 7

Last updated: 6 December 2014

Stopping Glivec
by fehr (Dec 6)

Hi Sandy,

Not a great difference, as I said, and I am not concerned. However, it bucks the trend. That could be down to all sorts of things, including test error. I have seen that before

by sandy craine (Nov 26)

Hi John,

There is really very little difference between 0.091 and 0.076% for it to be considered a rise. When is your next test due?

Sandy

by fehr (Nov 25)

This from the thread Sandy linked to:

I had been taking Imatinib 400mg for six and a half years when I stopped because of particular side effects. My PCR results after the first year had

by Smahmood (Nov 19)

Hi Barry,
Thank you for the information and good luck with your PCRs over the next 6 months.
Regards
Shahid
Category: Uncategorised

Replies: 7

Last updated: 6 December 2014
Frenchguy on 12 November 2014

Category: Uncategorised

Replies: 1

Last updated: 12 November 2014

Big deception
by Lucas (Nov 12)

francis, your result was good! your pcr halved in 3 months. if you can't hold the side effects, ok, but you're doing very good on tasigna. i'll send you an e-mail. cheers!

by Frenchguy (Nov 12)

Hi everyone,
Today I had the result at 6 months and I am desappointed because I am only at 0.34% vs 0.68% at 3 months so I will ask to my onc to change TKI because I can't support the side effects
Category: Uncategorised

Replies: 1

Last updated: 12 November 2014
nigel on 12 November 2014

Category: Uncategorised

Replies: 8

Last updated: 26 November 2014

Cancer Drugs Fund to be restricted - says NHS - off BBC web site today
by nigel (Nov 26)

So Nigel, to clarify:

The 5 year 'guaranteed' dasatinib supply is for 5 years from last patient enrolled. Last person in was March 2013 therefore supply is guaranteed for all patients until

by RodM (Nov 26)

Did he come back to you on this?

by David Ryner (Nov 15)

Hi Nigel and Rod,
There are two quite distinct issues here.
The first concerns the Cancer Drugs Fund (CDF) and the re-evaluation of the 40+ drugs on the national CDF list which include dasatinib,

by nigel (Nov 13)

I will email Prof O'Brien and ask
Category: Uncategorised

Replies: 8

Last updated: 26 November 2014
Basil from RSA on 9 November 2014

Category: Uncategorised

Replies: 2

Last updated: 11 November 2014

Good news from South Africa.
by sandy craine (Nov 11)

Hi Basil,
thanks for the update on this forum. Many will be very heartened by your experience of stopping. If only we could find out why some people (like you) can successfully stop therapy without

by Lucas (Nov 10)

Congratulations, basil!!! great news!

by Basil from RSA (Nov 9)

Hi Sandy and all my fellow members of the CML club.

I have posted the news on our FaceBook forum but for those who do not follow it here goes.

I have just had my 6 monthly consultation
Category: Uncategorised

Replies: 2

Last updated: 11 November 2014
teddyb on 9 November 2014

Category: Uncategorised

Replies: 1

Last updated: 9 November 2014

ABT-199 + TKI = Hope?
by Lucas (Nov 9)

i saw this on LLS forum. it sounds very very promising. we need to know the toxicity, etc.. but i think scientists are in the right track :)

by teddyb (Nov 9)

https://ash.confex.com/ash/2014/webprogram/Paper72972.html
Does anyone know if trials on this will start anytime soon?
This seems VERY promising :)
Category: Uncategorised

Replies: 1

Last updated: 9 November 2014
On Fire on 7 November 2014

Category: Uncategorised

Replies: 3

Last updated: 10 November 2014

Pre-employment occupational health assessments for those with Chronic myeloid leukaemia
by Richard42 (Nov 10)

This is an interesting topic - when I was changing jobs a couple of years ago, I spoke to an employment lawyer friend of mine and his advice was not to mention my CML until the OH assessment came.

by karen (Nov 7)

I think it varies from work place to work place.
I have had three different jobs since diagnosis and i have used the disability tick box to get an interview. The only difficulty with that is

by skiinglaketahoe (Nov 7)

This is a very interesting question and one that bothers me. I work for the NHS and so could tick the disability box and guarantee an interview. We can't lie about our health but I haven't applied

by On Fire (Nov 7)

My wife has been recently diagnosed with Chronic myeloid leukaemia, has responded excellently to treatment and has been told by her consultant doctor that she probably has a normal life expectancy,
Category: Uncategorised

Replies: 3

Last updated: 10 November 2014