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Bhiru on 8 September 2012

Category: Uncategorised

Replies: 6

Last updated: 28 September 2012

Birth Announcement
by sandy craine (Sep 28)

Hi Bhiru, unfortunately we can't share photo's on this forum as yet - but if people would like that facility I could set it up?
Meanwhile, how about sharing you photo on the 'What is my PCR'

by Bhiru (Sep 28)

Thank you all for your kind words. It's so nice to be able to post something happy for a change, after all the years of worrying about one thing and another.

I'd really love to show you some

by Ali Loram (Sep 12)

Congratulations to you both. An uplifting bit of news! And welcome to your baby girl!

with love,

Ali

by karen (Sep 10)

That is such fantastic news, I am so pleased for you. Not sure whether we can get photos on this site but if so I am sure we would all love to see her x
Category: Uncategorised

Replies: 6

Last updated: 28 September 2012
Phil Poole on 8 September 2012

Category: Uncategorised

Replies: 2

Last updated: 10 September 2012

Long term IM therapy & results.
by sandy craine (Sep 10)

Hi Phil,

good to hear that you continue to have a stable MMR. I am sure your experience will help others who are perhaps not achieving the published 'ideal' responses. We have to remind

by teddyb (Sep 9)

Fantastic story.
I started on 400mg Glivec this April, and reading this made me smile and think about how thankful i am that drugs like Glivec exist :)

by Phil Poole (Sep 8)

Hello everyone, it's been a long time since I came on here but I do keep up on the posts from time to time. Having said that, I thought it may help to let you know that I was diagnosed with CML in
Category: Uncategorised

Replies: 2

Last updated: 10 September 2012
Basil from RSA on 6 September 2012

Category: Uncategorised

Replies: 2

Last updated: 10 September 2012

News from Basil in South Africa
by sandy craine (Sep 10)

Hey Basil.... that great news! and more evidence that for some individuals, TKI therapy is somehow is potentially curative.
As researchers learn more about the mechanisms that are at play with

by lynnsch (Sep 7)

Hi Basil,
Once again its so great to hear your progress off TKI's.
I am so happy for you and wish you a happy 40 month anniversary.
Thanks for the update and all the best to you

Lynn

by Basil from RSA (Sep 6)

Hi to all,
Just a short note to those following my progress off Gleevec.

I discontinued taking Gleevec due to a few nasty side effects which I endured during my journey on Gleevec.
Category: Uncategorised

Replies: 2

Last updated: 10 September 2012
sharito on 6 September 2012

Category: Uncategorised

Replies: 8

Last updated: 10 September 2012

support group
by sandy craine (Sep 10)

Hi Tony,

for details of times and how to get to the meeting please see the post (in red section) at the top of this page.
Sandy

by Debs (Sep 10)

Hi Tony,
It's this Saturday, the 15th.
Debs.

by tony morgan (Sep 7)

Hi when is the meeting ,I think I'll come along got Some questions to ask,and be nice to meet people in same situation.lol tony

.

by Debs (Sep 6)

That's my mind made up then. Thanks for everyones comments. I'd already booked the train tickets from Doncaster but was still wavering.
Really looking forward to meeting other people in the same
Category: Uncategorised

Replies: 8

Last updated: 10 September 2012
cousineg on 5 September 2012

Category: Uncategorised

Replies: 3

Last updated: 6 September 2012

FDA approves Bosulif (Bosutinib)
by teddyb (Sep 6)

Thanks Sandy.
Enjoy your holiday.

by sandy craine (Sep 5)

As far as I know there is a delay that might take some time to get through EMA. Will update as soon as I have more info.
Sandy- still in Greece x

by teddyb (Sep 5)

When will it become available in Europe?

by cousineg (Sep 5)

U.S. Food and Drug Administration Approves BOSULIF® (bosutinib) for Patients with Previously Treated Philadelphia Chromosome-Positive Chronic Myelogenous Leukemia (CML)

More about
Category: Uncategorised

Replies: 3

Last updated: 6 September 2012
sandy craine on 23 August 2012

Category: Uncategorised

Replies: 2

Last updated: 25 August 2012

holiday break
by karen (Aug 25)

Have a fantastic break

x

by Olivia (Aug 24)

Hope you have a wonderful holiday, and don't think about the website!

by sandy craine (Aug 23)

I will be on holiday for the next 2 weeks so if I do not respond to specific posts you will understand why.
I hope all of you are enjoying the summer and keeping well,
Best wishes to everyone,
Category: Uncategorised

Replies: 2

Last updated: 25 August 2012
cousineg on 21 August 2012

Category: Uncategorised

Replies: 1

Last updated: 22 August 2012

We consider CCyR the gold standard for a good response ....
by sandy craine (Aug 22)

mmmm yes. Unless you want to get to MMR4.5 or lower, so you can look forward to trying to stop therapy as part of a study, which is also what Dr. Cortez says in this piece.
Sandy

by cousineg (Aug 21)

''One common question is what to do with a patient in CCyR but not in MMR or still PCR-positive. Central to this question is what the goal of therapy is. We consider CCyR the gold standard for a
Category: Uncategorised

Replies: 1

Last updated: 22 August 2012
cousineg on 21 August 2012

Category: Uncategorised

Replies: 1

Last updated: 21 August 2012

New article about the STIM (STop IMatinib) trial
by sandy craine (Aug 21)

This article has already been published on the home page some weeks ago.

Sandy

by cousineg (Aug 21)

Take some minutes to read this new article: New Data Confirm Safety of Stopping Imatinib in Leukemia - July 4, 2012

''The CML-8 trial involved 40 adult patients who had been treated with
Category: Uncategorised

Replies: 1

Last updated: 21 August 2012
ruthie on 20 August 2012

Category: Uncategorised

Replies: 8

Last updated: 15 September 2012

recently diagnosed
by ruthie (Sep 15)

Hi thankyou for your reply it's reassuring that there are others on this forum that can share how they are feeling too,have stopped the Dasatanib as i have a chest infection but hopefully i will be

by sandy craine (Sep 10)

I sympathise with all of you experiencing the side effect of fatigue from TKI therapy. I would say that if your HGB counts is below normal ranges- see FAQ page for normal values- that this alone

by tartancaddy (Sep 8)

Hi guys
Been on Imatinib for 2 1/2 years now and I'm due to get laser treatment on my eyes next week to sort out rogue veins and bleeding. Does anyone have experience of this and if so, how did it

by Michael Fisher (Sep 8)

I Was also was diagnosed a year ago, have just had second bone marrow extraction, and have been on Dasatinib since diagnosis. Have been constantly tired as days wear on, but these are getting less
Category: Uncategorised

Replies: 8

Last updated: 15 September 2012
jonah0674 on 18 August 2012

Category: Uncategorised

Replies: 5

Last updated: 26 August 2012

spots
by RodM (Aug 26)

Hi
I've been on Dasatinib for about 6 months and I get these, in the scalp, forehead, & chest. They are like a spot but without the head and can be quite red and painful.
The best thing I've

by marsy (Aug 20)

Hi Jonah,
I've been on Dasatinib for 2 years and that's the only side effect I get apart from the occasional puffy eyes. The spots are normally at the back of my head in my hair but now and again on

by jonah0674 (Aug 20)

thanks for replies ,

by cmlblogger (Aug 20)

Hi Jonah - I have these since moving to Dastatnib some 18 months ago, they seem to come and go, and pop up across my body.
I kind of just live with them, tried various spot creams, for me I found
Category: Uncategorised

Replies: 5

Last updated: 26 August 2012
Olivia on 18 August 2012

Category: Uncategorised

Replies: 4

Last updated: 21 August 2012

My PCR is up
by sandy craine (Aug 21)

Oh wow Olivia... how relieved you must be. No need for tortuous waiting of confirmation of a blip or indication of something more serious.

I am so glad someone checked and that someone owned

by Olivia (Aug 21)

I've just had an email from the hospital, and apprently the secretary made a typo - my PCR was 0.0299 instead of 0.299!

Thanks everyone for all your support.

by Olivia (Aug 21)

Thanks Sandy, I've been trying to convince myself that it is just a blip - and I'm almost there... Anyway, I'm not panicking yet.

I hope to meet you in Glasgow, if you are coming up in

by sandy craine (Aug 21)

Dear Olivia,
although I know it must be very worrying for you to see this rise, I am going to tell you to try not to... worry that is! Remember, this is from one result only and it is likely to be
Category: Uncategorised

Replies: 4

Last updated: 21 August 2012
Ali Loram on 18 August 2012

Category: Uncategorised

Replies: 3

Last updated: 21 August 2012

SCT
by sandy craine (Aug 21)

Dear Ali,
I am so glad to hear you will have a reduced intensity SCT. As you know this is the kind I had in 2003- it seems so long ago now!

Please read the first few entries on my diary (you

by nigel (Aug 19)

Keeps us posted, or let us have the blog web address. Glad there are options with the donours, and a couple of matches.
Nigel and family

by teddyb (Aug 18)

I wish you the best of luck!
Keep us updated.

by Ali Loram (Aug 18)

Well, yesterday we went to Bristol to see Proff Marks, what a lovely man he is! They have found a donor, or several and are running a few further tests to make sure they get a perfect match. I will
Category: Uncategorised

Replies: 3

Last updated: 21 August 2012
Steven Davies on 18 August 2012

Category: Uncategorised

Replies: 1

Last updated: 21 August 2012

8 years today since I heard those horrible words.
by sandy craine (Aug 21)

Dear Steven,

Congratulations on reaching another milestone. I am sure your story will encourage others who are treated with TKI therapies. I know you have been treated with both 1st and 2nd

by Steven Davies (Aug 18)

Hi

Today is 8 years since I was told that I have CML. I'm on 600mg Nilotonib and doing well. 6 years ago I started my own business and I'm still here. I remember that day very well. Probably
Category: Uncategorised

Replies: 1

Last updated: 21 August 2012
maryb on 16 August 2012

Category: Uncategorised

Replies: 3

Last updated: 18 August 2012

CML care in Cumbria
by alison28 (Aug 18)

Hi Mary!
I live On walney!!

I have check ups every 6-8 weeks with dr Macheta (Furness general) he is a fantastic haematologist and has been wonderful with me since my diagnosis. I travel

by sandy craine (Aug 17)

There are several general hospitals in the area- but I am not aware that any specialise in CML although both Furness General and Lancaster Royal Infirmary are quite large hospitals.
You might

by maryb (Aug 16)

I mean treatment , not care! Woolly brain!

by maryb (Aug 16)

Hi,

I am currently a patient at NottinghamCity Hospital where I have received excellent care since I was diagnosed in October 2008. I am now on Nilotonib and doing well.

We are planning
Category: Uncategorised

Replies: 3

Last updated: 18 August 2012
jacqui from Col... on 15 August 2012

Category: Uncategorised

Replies: 7

Last updated: 19 September 2012

Pleural effusion - dasatinib
by jacqui from Colchester (Sep 19)

Yes I have heard good things about Nilotinib - the good thing my PCR hasnt risen much whilst off the drugs for 9 months Im still at 0.028 - I was 0.003 so hopefully I can get back down a log now

by sandy craine (Sep 19)

Hi Jacqui,
All good news for you re ovarian cancer. Wishing you good luck with the new TKI. I know Naomii recently changed to nilotinib and is doing very well.
Best wishes,

Sandy

by jacqui from Colchester (Sep 18)

Hi Everyone
I have had all my tests back and they have all proved negative. It appears that everything that has happened since last Deecember has been caused by dasatinib.
They have been extremely

by jacqui from Colchester (Aug 19)

Hi thank you all for your comments. I am having a internal ultra sound on Wednesay and I am keeping my fingers crossed. Will keep you all posted
Jacqui
Category: Uncategorised

Replies: 7

Last updated: 19 September 2012
Ali Loram on 16 August 2012

Category: Uncategorised

Replies: 2

Last updated: 16 August 2012

support for daughter
by sandy craine (Aug 16)

Dear Ali,

I understand totally what your daughter means. I only wish my own daughter had been able to find support when I had my SCT back in 2003. She really did suffer silently and found it

by chrissie (Aug 16)

Hi Ali
Just to wish you and all the family the very best. It sounds as if Bristol have found a match at last. Read your last post and so pleased the interferon experience has improved for you.

by Ali Loram (Aug 16)

Hi,

As things are progressing towards a BMT (first appointment tomorrow, so think they have found a match for me). I am wondering if anyone knows of a support group for an older teenager? I
Category: Uncategorised

Replies: 2

Last updated: 16 August 2012
hannah2010 on 9 August 2012

Category: Uncategorised

Replies: 3

Last updated: 10 August 2012

2 years on glivec rising results
by sandy craine (Aug 10)

Hi Hannah,
as David has said... do not worry.

You really need to see two consecutive rises of 5-10 fold before you need to worry that your bcr/abl levels are on the rise

Your sequence

by hannah2010 (Aug 9)

Thanks for ur advice x

by david_a (Aug 9)

Hi Hanna,

I know its not easy but try not to get too worried.

As your doc says it may be just a blip, or even an inconsistency in one of your results which can happen.

I think its

by hannah2010 (Aug 9)

hi there my name is Hannah, although I have always read the forum regularly and found it very imformative I have never joined as a member before until now.............................

I have
Category: Uncategorised

Replies: 3

Last updated: 10 August 2012
skiinglaketahoe on 8 August 2012

Category: Uncategorised

Replies: 4

Last updated: 16 August 2012

CML and broken bones
by Ali Loram (Aug 16)

Hi Susan,

This may be relevant or not!

You mention that you are/have been on steroids. From experience, long term steroids can lead to poor bone density & thus delayed healing. I was

by skiinglaketahoe (Aug 16)

Thank you both for your replies.
I have had loads of blood tests to try and establish anything else going to with regard to the broken hip. Nothing really found; I was even investigated for coeliac

by cmlblogger (Aug 16)

not sure it helps but I had a broken nose when I got hit the face by a softball (they are in no way soft!!!) whilst on imatinib some years ago. Seemed to heal ok, an in fact slightly smaller than

by fehr (Aug 12)

My wife had a problem with healing of bones. Nothing to do with CML - that's me. She fell off her horse and broke her leg - spiral comminuted fracture of the tibia running into the knee. Ended
Category: Uncategorised

Replies: 4

Last updated: 16 August 2012
teddyb on 6 August 2012

Category: Uncategorised

Replies: 6

Last updated: 15 August 2012

First PCR test results
by teddyb (Aug 15)

I have read that people use exercise for a way to help fight fatigue while on Gleevec.
As for the STIM trials, yes, that would indeed be something :)

by david_a (Aug 9)

I too get side effects, but nothing major. Good days and bad days. Fatigue is the main one, but I do plenty of excercise so maybe its a side effect from that?

My ultimate goal is to get off

by teddyb (Aug 8)

Good to hear your response has been so good on Glivec. Im hoping i can stay on Glivec too, as i have not had any major side effects so far. Some skin issues, fatigue and nausea, but nothing too bad

by david_a (Aug 7)

Hi,

Yes I'm on Glivec 400mg per day and the occasional wine for therapuetic purposes.
Category: Uncategorised

Replies: 6

Last updated: 15 August 2012
tartancaddy on 6 August 2012

Category: Uncategorised

Replies: 3

Last updated: 8 August 2012

eye problem
by tony morgan (Aug 8)

Hi Gary I was dx on 14thdec 2009. ,started imatinib 6th jan 2010. I get puffy eyes in the morning ,and like you intermittent bleeding ,one was so bad it was raised off my eye.just told to let it

by tartancaddy (Aug 6)

Hi Chris
Thanks for your reply. I'm on 400mg of Imatinib and have been for 2 1/2 years. The pressure on my optic disc was causing my eyes to go a bit weird and that's how i was diagnosed in 2010. I'

by cdw5000 (Aug 6)

Hello Gary,
I've had some eye issues but not to the extent you described. Which medication are you on? I'm on Nilotinib (Tasigna) and my eyes look very bloodshot and very glassy. I'm also having

by tartancaddy (Aug 6)

Hi Guys
Just wondered if anyone else has had problems with their eyes and in particular bleeding and abnormal veins appearing? Just been to the Eye hospital and they say i have to get laser
Category: Uncategorised

Replies: 3

Last updated: 8 August 2012