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sandy craine on 13 October 2011

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Replies: 2

Last updated: 20 October 2011

Dr. Cortez talks about bosutinib
by sandy craine (Oct 20)

Of course there are other TKI's in clinical trial, not only bosutinib and ponatinib- particularly effective in those with T315i mutation. many companies are interested in this area and the

by durgeshsoni (Oct 18)

My question is that as we are new molecules like ponatinb and other many NCEs in pipe line then what is the best benifit from bosutinib.
As I saw the litreture, their is no results found

by sandy craine (Oct 13)

Video interview with Dr. Cortez talking about bosutinib (Pfizer)
http://youtu.be/Ld2Cv6wntxQ
Category: Uncategorised

Replies: 2

Last updated: 20 October 2011
cousineg on 11 October 2011

Category: Uncategorised

Replies: 1

Last updated: 11 October 2011

New videos about CML
by cousineg (Oct 11)

Other video:

Sandra E. Kurtin, MS, RN, ANP-C, AOCN®, Arizona Cancer Center, addresses nursing management of the patient with CML, adherence and compliance issues with oral agents, and

by cousineg (Oct 11)

A video case study will be presented, illustrating a complicated outpatient CML scenario, beginning with the diagnostic work-up through the treatment trajectory
Category: Uncategorised

Replies: 1

Last updated: 11 October 2011
cousineg on 10 October 2011

Category: Uncategorised

Replies: 1

Last updated: 10 October 2011

Pr. Tim Hughes and CML
by Kate (Oct 10)

Thank you so much for posting this up. I found the video of the conference particularly fascinating as he discusses the trial I am taking part in in and I didn't know this video existed!

This

by cousineg (Oct 10)

See Pr. Tim Hughes
Category: Uncategorised

Replies: 1

Last updated: 10 October 2011
EmChops on 6 October 2011

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Replies: 7

Last updated: 11 October 2011

Cytogenetic remission
by spence11 (Oct 11)

...who finds it all confusing. You're definitely not the only dumb kid in class!

Thank heavens for Sandy! Take care.x

by EmChops (Oct 11)

I think I am using the wrong terminology, according to another post, I am confused rather and do feel like the dumb kid in class!

Either way, hooray!

by EmChops (Oct 11)

Thank you so much.

It is nice to share some good news. I am getting stronger every day, although some days are harder than others I know I am on a good drug and I am one of the lucky ones.

by Steven Davies (Oct 9)

Hi Emma,
Congratulations well done on your PCR you must be really happy to haves achieved this after your ups&downs with Nilotonib Hope things will get even better with your next one. Good news
Category: Uncategorised

Replies: 7

Last updated: 11 October 2011
spence11 on 6 October 2011

Category: Uncategorised

Replies: 3

Last updated: 10 October 2011

Results confusion
by sandy craine (Oct 10)

I think there is some confusion regarding the meaning of the letter R in the context of CML tests.
We are all used the word 'remission' when talking about cancer in general and usually

by spence11 (Oct 10)

Hello Sandy
Thank you so much for your comprehensive reply - your knowledge is amazing!
Just one more question if you don't mind, can I just clarify that cytogenic remission is the same as a

by sandy craine (Oct 6)

It can be very confusing so don't worry about being confused.
Most people are not tested by PCR until the amount of PH+ cells reduces to such levels that they cannot be seen or detected by FISH

by spence11 (Oct 6)

Hello everyone.
I wonder if anyone can help me please? I'm a bit confused about my husband's latest test results.
Until now the results have been in percentages - he was diagnosed late
Category: Uncategorised

Replies: 3

Last updated: 10 October 2011
karen on 5 October 2011

Category: Uncategorised

Replies: 3

Last updated: 7 October 2011

Advice please
by Swede (Oct 7)

Hi Kerena,
Just a thought but wondered what dose of Dasatinib you've been on and whether that could be lowered to keep the PE at bay? I went down to 70 mg per day (from 100) after a bout of

by keith Pratt (Oct 6)

Good Afternoon Karena
The very same thinghappend to me earlier this year, nearly copped it this time with so much fluid in the lungs. Yes did take quite a while to get back on the straight and

by sandy craine (Oct 6)

Dear Karena,
I am sorry to hear you have had such extreme side effects from both dasatinib and nilotinib. The only advice I can offer is that you discuss your fears about restarting nilotinib fully

by karen (Oct 5)

I am hoping that someone on here could give me some advice to help me make a decision! I stopped Glivec after 8 months due to liver problems and then went onto Dasatinib which i have been on for
Category: Uncategorised

Replies: 3

Last updated: 7 October 2011
bobosbo on 5 October 2011

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Replies: 5

Last updated: 9 October 2011

Latest PCR Results
by Steven Davies (Oct 9)

Fantastic news we are both really pleased for you. As you say so much for Nice what do they know! We know different! Hope you had a celebration with your extra zero.
See you soon
Steven & Carol

by Steven Davies (Oct 9)

Fantastic news we are both really pleased for you. As you say so much for Nice what do they know! We know different! Hope you had a celebration with your extra zero.
See you soon
Steven & Carol

by EmChops (Oct 6)

Congratulations Bob! Well done you.

Emma x

by sandy craine (Oct 6)

Hi Bob, congratulations on yet another zero. I agree when you ask "what do they know"..... we are just preparing our comment on the TAR for 2nd generation TKI's in first line use and
Category: Uncategorised

Replies: 5

Last updated: 9 October 2011
Barbs on 3 October 2011

Category: Uncategorised

Replies: 3

Last updated: 5 October 2011

FLAMSA
by sandy craine (Oct 5)

Hi Barb,
Has your friends CML progressed to acute stage? If so then a reduced intensity sct plus DLI, would only be used after high dose chemotherapy had put them into 2nd chronic stage- as in

by Barbs (Oct 4)

Thanks sandy, had already seen the articles; Am trying to get some first hand information for a CML friend

by sandy craine (Oct 4)

Hi Barb,
try these links,
http://www.nature.com/bmt/journal/v41/n8/full/1705965a.html

Conditioning RegimensHigh antileukemic efficacy of an intermediate intensity conditioning regimen for

by Barbs (Oct 3)

Has anyone heard of this conditioing regime used for AML patients? Please reply it's very important.
I think it's a reduced intensity one, like the one sandy had
Category: Uncategorised

Replies: 3

Last updated: 5 October 2011
David on 2 October 2011

Category: Uncategorised

Replies: 7

Last updated: 4 October 2011

New Trial at the Hammersmith - Glivec
by Richard42 (Oct 4)

I think the assumption must be that the understandings about what is necessary to achieve optimal response don't apply to long term maintenance of that response in at least a subset of patients

by Barbs (Oct 4)

To be perfectly honest, I find this trial dangerous.
Sub optimal doses can result in resistance!
Will they be monitoring Glivec concentration in the blood at the same time to see whether the

by terryhickmott (Oct 3)

I'm under Professor Clark in Liverpool, but now only see him once a year. Dr Heartin at Glan Clwyd mentioned the STIM trial last month, and my first reaction was one of reluctance, especially as

by liz (Oct 3)

Hi
Although very willing, I will also be asking lots of questions. Last year I asked my Cml nurse if I could drop my Glivec to 200mg, her response was that it wasn't a therapeutic dose, and not
Category: Uncategorised

Replies: 7

Last updated: 4 October 2011
Pennie on 29 September 2011

Category: Uncategorised

Replies: 3

Last updated: 30 September 2011

New consultant at Kings
by Pennie (Sep 30)

Hello Tony, Yes I also think he will be a great asset to the team, he is very keen on looking forward to new ways to work with the treatments available.
I will ask Ibrahim to make sure you are on

by Vangogh (Sep 30)

Hi Pennie
I was Dr de Lavallade's first patient on his first day, 12th September. I think he will be a great asset to The Kings Team. Would you put me on your mailing list for upcoming

by cmlblogger (Sep 29)

Am sure he used to be at the Hammersmith, very nice bloke :)

Rob

by Pennie (Sep 29)

The Kings CML the patients group meeting yesterday were introduced to Dr Hugues de Lavallade. He has joined the clinical team as a consultant haematologist in myeloid malignancies and
Category: Uncategorised

Replies: 3

Last updated: 30 September 2011
Lyndsey on 28 September 2011

Category: Uncategorised

Replies: 5

Last updated: 29 September 2011

Worried! Maybe doing too much reading
by Lyndsey (Sep 29)

Thank you everyone for your kind words. I have always been an impatient person and like things to be sorted out promptly so there lies my problem having cml is a waiting game and to watch for

by Paul Miller (Sep 29)

It sounds very familiar! I've got DX 2.5 years ago now, I can relate to those concerns about where you stand in relation to prognosis today. Well my sister had her thinking hat on and she

by ADJL (Sep 28)

For me anxiety is the primary symptom of my CML- it fluctuates in the gaps between hospital visits (some days I even almost forget that I have it!) But the days leading up to bone marrow or blood

by Lyndsey (Sep 28)

I think the 69% is my PCR now that you say that. I do often get confused over numbers. Thank you for taking the time to reassure me. My spleen was back to it's own self a couple of days after 4
Category: Uncategorised

Replies: 5

Last updated: 29 September 2011
Vangogh on 28 September 2011

Category: Uncategorised

Replies: 1

Last updated: 28 September 2011

BCR/ABL Test Results
by sandy craine (Sep 28)

Hi Tony,
I know you must be disappointed but with pcr results there is always the possibility of small changes. This is because of the variables such as- the blood sample being left a little too

by Vangogh (Sep 28)

Hi
A bit dissappointed today, just got my latest results from Kings. I have hovered at 0.037% for the last year but in July the result was undectable!!! Really pleased. Yesterdays results are 0.033
Category: Uncategorised

Replies: 1

Last updated: 28 September 2011
ian hinley on 24 September 2011

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Replies: 1

Last updated: 24 September 2011

Great news - 3 log reduction after nearly 2 years...
by sandy craine (Sep 24)

Dear Ian... what a great result. Wonderful to have this result on or near CML Awareness Day! Not just good vibes but a real concrete acheivement.
It gives me strength to continue to argue the

by ian hinley (Sep 24)

Just a quick note to say I have finally reached 3 log reduction |(MMR) after nearly 2 years since dx. I switched from Gleevec to Sprycel 2 months ago and in 2 months it has gone down from 0.
Category: Uncategorised

Replies: 1

Last updated: 24 September 2011
Barbs on 22 September 2011

Category: Uncategorised

Replies: 4

Last updated: 28 September 2011

Please watch this - very moving
by EmChops (Sep 28)

Hi Carol

Thanks for your lovely post. Sorry I have not been on the site for a while and only just spotted it! I have felt rather awful starting NIlotinib again this time, I had quite an upset

by Carol (Sep 22)

So happy to hear your good news that you can go back on Nilotonib glad to hear your platelets have come up so you can re start.
Let us know how you get on with Nilotonib now you have started again

by EmChops (Sep 22)

but then most things do.
Just found out today i can go back on Nilotinib after 3 weeks off for platelets being low, so rather emotional anyway!
Love to all on CML awareness day, we can do this.
Roll

by Janet (Sep 22)

Thank you for posting this link - I have just watched the clip and found it so encouraging and so caring. It made my spine prickle!! :-)
With love to all on CML Awareness Day
Janet x
Category: Uncategorised

Replies: 4

Last updated: 28 September 2011
ADJL on 22 September 2011

Category: Uncategorised

Replies: 1

Last updated: 24 September 2011

International CML Awareness Day
by sandy craine (Sep 24)

Dr. Janet Rowley discovers the translocation between chromosomes 9 and 22.
http://www.youtube.com/watch?v=gIANU4-fb-w&hd=1
CML Society's video: Patient Testimonials
http://youtu.

by ADJL (Sep 22)

Dear Friends,
I wanted to wish you all the first of many International CML Awareness Days. Not sure if it's official yet, but it's a great idea and coincidentally marks the two year
Category: Uncategorised

Replies: 1

Last updated: 24 September 2011
Arif ul Rehman on 21 September 2011

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Replies: 1

Last updated: 21 September 2011

skin melasma
by sandy craine (Sep 21)

Hello Arif, welcome to this forum.
I am pleased that you are responding to therapy with imatinib (Glivec). Although this condition is not serious I can understand that it must be distressing. I have

by Arif ul Rehman (Sep 21)

Dear Members,
I'm Arif (New member of this forum), 24, male from Pakistan and suffering from CML since last 7 years, however, due to proper treatment i-e getting Glivec since 2005, I'm good
Category: Uncategorised

Replies: 1

Last updated: 21 September 2011
sandy craine on 18 September 2011

Category: Uncategorised

Replies: 1

Last updated: 19 September 2011

Updated FAQ
by chrissie (Sep 19)

What a positive report. As she says, exciting times ahead for CML patients.This is a real morale booster. Thanks to Sandy and Cheryl-Anne for posting this,
Chrissie

by sandy craine (Sep 18)

I have just updated the FAQ page and also added a new section called CML Now? EHA 2011... click on the image and then on the next page click on EHA report.
Cheryl-Anne of the CML Society has written
Category: Uncategorised

Replies: 1

Last updated: 19 September 2011
chrissie on 17 September 2011

Category: Uncategorised

Replies: 2

Last updated: 18 September 2011

Zavie
by chrissie (Sep 18)

Thank you, Sandy. This is heartening news and to be in a specialist rehabilitation unit will surely be benificial to him and his family. Even better to hear that he is able to think about

by sandy craine (Sep 17)

This is the last update re Zavie from Giora of the CML group in Israel who is in touch regualrly with Zavie's family. This news is from 4 weeks ago, I have not heard anything since then.

by chrissie (Sep 17)

Sandy, I have been wondering if there is any news on Zavie's progress after his stroke? He has done so much for so many of us and his zero club has been such a positive support.
If you are in
Category: Uncategorised

Replies: 2

Last updated: 18 September 2011
vickiep on 16 September 2011

Category: Uncategorised

Replies: 3

Last updated: 16 September 2011

Nearest specialist centre
by sandy craine (Sep 16)

Dear Vickie... sorry to hear of your friends diagnosis with AML. I would say that AML, as I am sure you know, is a very different disease from CML although CML in blast stage is similar- but I seem

by vickiep (Sep 16)

Thanks Ali, he was admitted in the night as an emergency and had BMB today. All he knows at the moment is that he has AML...Now that you have kindly shared info with me, I can call the hospital and

by Ali Loram (Sep 16)

Hi Vickie,
Sorry to hear about your friend, he has been through the mill.. I am not too far away from newquay (I am in Exeter) & as far as I know the nearest specialist hospital for him

by vickiep (Sep 16)

Can anyone help me please...where is the nearest specialist hospital to Newquay? A very dear friend of 45 years has been admitted to Treliske Hospital and been told he has AML. Apart from being
Category: Uncategorised

Replies: 3

Last updated: 16 September 2011
tartancaddy on 13 September 2011

Category: Side effects

Replies: 13

Last updated: 22 June 2015

side effects of imatinib
by malisia (Jun 22)

hi gary can you give me any information on what was done to stop the bleeding in the back of the eye anything at all you can give will be greatly appreciated with how they treated it

by tartancaddy (Sep 23)

Thanks Barbara, this give me a great deal of hope for the future. Good luck with staying free!

by claudia (Sep 21)

Dear Gary,
I remember these side effects very well! I suffered with them when i first started taking glivec. But after a few months i got
used to them and after a few years i did not notice any of

by Barbs (Sep 16)

You can also contact me privately
Category: Side effects

Replies: 13

Last updated: 22 June 2015