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bobosbo on 27 July 2010

Category: Uncategorised

Replies: 1

Last updated: 29 July 2010

Video
by Janet (Jul 29)

This is really interesting and most encouraging, also at 11 mins long it is within my concentration span!! :-)

Thanks Bob for posting the link.

Regards, Janet

by bobosbo (Jul 27)

http://www.patientpower.info/p2tv.asp?video=12339147&autoplay=1

This video is well worth a look

http://www.patientpower.info/p2tv.asp?video=12339147&autoplay=1

Bob
Category: Uncategorised

Replies: 1

Last updated: 29 July 2010
irenekallison on 27 July 2010

Category: Uncategorised

Replies: 3

Last updated: 28 July 2010

Cancer drugs u-turn
by Tufty3 (Jul 28)

On the face of it, this sounds like great news for any of us that might need access to one of the new generation of treatments now or in the future.

I will be interested to see what

by irenekallison (Jul 28)

Relieved to see your comment, thanks - I thought I had got it wrong when nobody had picked up on the posting.

It must be a big relief to so many sufferers that there is this most positive

by Pennie (Jul 28)

Irene thank you so much for posting this. At long last all the hard work, letter writing and lobbying has paid off. Fingers crossed this spells the end of anyone having to take the

by irenekallison (Jul 27)

The government have made a good decision! read the link below.

http://www.dailymail.co.uk/news/article-1297871/Now-cancer-drugs-U-turn-Patients-given-new-hope-Government-rushes-emergency-
Category: Uncategorised

Replies: 3

Last updated: 28 July 2010
sandy craine on 26 July 2010

Category: Uncategorised

Replies: 2

Last updated: 27 July 2010

Rarer Cancer Foundation Survey
by Olivia (Jul 27)

Pity this is limited to England - I'd like to give our local (Scottish) NHS services a pat on the back! I feel that I've been well treated from the beginning.

by vickiep (Jul 26)

Completing this survey gave me great satisfaction, extremely cathartic! Finally got off my chest what an appalling experience I had in the run-up to diagnosis.

Phew...

xx

by sandy craine (Jul 26)

The rarer cancer foundation has contacted rare cancer groups to ask for patient input for their survey- see below. I think it is worthwhile and will be participating in the survey.

best wishes,
Category: Uncategorised

Replies: 2

Last updated: 27 July 2010
vickiep on 25 July 2010

Category: Uncategorised

Replies: 1

Last updated: 27 July 2010

Dasatinib findings...
by jacqui from Colchester (Jul 27)

I am on dasatanib and I would agree with the findings my results after 6 months were excellent - my consultant was not expecting the results I got for at least 18 months - it would be great to

by vickiep (Jul 25)

http://www.mdanderson.org/newsroom/cancer-newsline/past-episodes/patient...
Category: Uncategorised

Replies: 1

Last updated: 27 July 2010
chrissie on 24 July 2010

Category: Uncategorised

Replies: 2

Last updated: 26 July 2010

Progress
by sandy craine (Jul 26)

Dear Chrissie,

congratulations on showing such a very good response so quickly from diagnosis, only 9 months ago.

best wishes,

Sandy

by zaviemiller (Jul 25)

YAHOOO!!! YIPPEEE!!!

Number 1343 in the Zero Club

Zavie

zmiller@sympatico.ca

by chrissie (Jul 24)

Hi All

Have just got my PCR results back from HH and the BCR ABLE is 0.050. The last were 0.068 and I started off at 47.7 after dx in Sept 2009. Feeling pretty pleased and grateful
Category: Uncategorised

Replies: 2

Last updated: 26 July 2010
Belinda Whitting on 22 July 2010

Category: Uncategorised

Replies: 9

Last updated: 31 July 2010

hi
by skiinglaketahoe (Jul 31)

Hi

I would just add that it is every patient's right to HAVE a second opinion. If you don't like to ask your doctor then you can ring their secretary and ask them or your GP can

by Pennie (Jul 30)

Hi Belinda Can I reinforce Sandys comments about best practice. I am so pleased I took a second opinion at Kings hsp, and am now seen there every 6 weeks. I see either Prof

by sandy craine (Jul 30)

Dear Belinda,

I am surprised your husband in monitored only every 6 months. The recommendations as they stand at the moment are that patients who are in chronic stage CML should be monitored (

by Belinda Whitting (Jul 29)

thankyou sandy for your reply. my husband goes once a month to the macmillan unit in our local hospital, we live in milton keynes buckinghamshire. he has his bloods taken at this time by a nurse.
Category: Uncategorised

Replies: 9

Last updated: 31 July 2010
liz on 21 July 2010

Category: Uncategorised

Replies: 11

Last updated: 1 October 2010

Coming off Glivec
by Richard42 (Oct 1)

As I understand it, there is zero, and there is zero. In other words, PCRU as currently measured isn't necessarily zero at all and those that are PCRU will have different depths of

by liz (Sep 30)

Hiya Tracey,

one more question.

Is this if we stopped Glivec or even if we stayed on it, we can expect for it to come back more aggressive in 20 years?

by liz (Sep 30)

Hi Tracey,

Wow that is a bit scary actually.

A few questions though, how do they know? considering TKI's have only been around for approx 10 years?

Does that apply to all

by tadlaw (Sep 30)

Hi, My father just attended the annual ESH conference held in Washington DC. Not to frighten anyone - and I'm not sure of the details - but he said that there was significant
Category: Uncategorised

Replies: 11

Last updated: 1 October 2010
Mo on 15 July 2010

Category: Uncategorised

Replies: 2

Last updated: 16 July 2010

PCR sensitivity at the Hammersmith
by Mo (Jul 16)

Hi Richard,

Thanks for your comments.

With the exception of a couple of 0,002 results I've been 0.000 since June 2008. I've recently reduced my imatinib from 600 to 500 per day. June

by Richard42 (Jul 15)

to know when the recent "non negative" results were? The last one of mine I have seen (April - which was 0.000 - I had another in June which I believe was also "zero" but I

by Mo (Jul 15)

Hi

My PCR results over an extended period have been PCRU, the latest couple of results have "jumped" by a very small amount.

I have been advised by my local consultant that the
Category: Uncategorised

Replies: 2

Last updated: 16 July 2010
cmlblogger on 14 July 2010

Category: Uncategorised

Replies: 2

Last updated: 16 July 2010

Bing UK Sponsors Leuka Mini Masters Golf Tournament in London
by cmlblogger (Jul 16)

Richard - hope you have a good time

by Richard42 (Jul 14)

May see you there

Richard

by cmlblogger (Jul 14)

Sorry for the plug for this event ***disclaimer I work for Microsoft who bing belongs to but am not connected to this event****

Bing UK Sponsors Leuka Mini Masters Golf Tournament in
Category: Uncategorised

Replies: 2

Last updated: 16 July 2010
Bram on 14 July 2010

Category: Uncategorised

Replies: 7

Last updated: 19 July 2010

Appointment intervals
by Stuart Johnston (Jul 19)

I was diagnosed march 2009. And was told in march 2010 that I was in a state of clinical remission which is to say that at the 12 month stage I had. No visible signs of cml in my BCR/ABL test.

by liz (Jul 15)

Hi, I attend Liverpool Royal hosp every 3 months. I was diagnosed March 2007 and PCR has been 0.00 since Dec 2007. I think if you are doing well and have responded well to the meds, they are happy

by Pennie (Jul 14)

Hi Bram

I wonder if you have been to a specialist CML centre - for example RVI in Newcastle? Many of us go to a specialist centre about every 3/4 months and see a local

by Olivia (Jul 14)

I was dx last November, and at four and a half months was 0.6, so the consultant put me on to 3 monthly checks - I'm going back in early August and will see whether the 3-monthly checks are
Category: Uncategorised

Replies: 7

Last updated: 19 July 2010
Pennie on 12 July 2010

Category: Uncategorised

Replies: 2

Last updated: 13 July 2010

NHS white paper
by sandy craine (Jul 13)

I agree Pennie that this is a worry to all of us - as citizens. I am away for the rest of this week but I have quickly put some thoughts together about it all. As we all know, the present

by yogiB (Jul 13)

It's true, Pennie - it all feels most uncertain at the moment, when we see the new government cutting back on everything and putting the finances into the hands of GPs.... how on earth is this

by Pennie (Jul 12)

Just when we had begun to learn how to work round the PCT problem they disappear !!!!

Wondering how people are feeling/thinking about all the 'new' ideas in the white paper? As a
Category: Uncategorised

Replies: 2

Last updated: 13 July 2010
Hannah Bracegirdle on 10 July 2010

Category: Uncategorised

Replies: 2

Last updated: 11 July 2010

Chest Pain
by sandy craine (Jul 11)

Hello Hannah,

I would agree with Michael that you should check this with your doctor. I am not at all sure that a bmb would cause this sort of pain after so long and I don't think that such

by michael (Jul 10)

Pleural effusion might be your problem,see your GP.
I get these on the right hand side of my chest quite often as a side efect of Dasatinib.

by Hannah Bracegirdle (Jul 10)

Hey Guys,

Not left a message on here for ages, just tend to read all the post and find it really interesting and helpful, so thank you for sharing.

I keep getting a sore
Category: Uncategorised

Replies: 2

Last updated: 11 July 2010
dmc23 on 9 July 2010

Category: Uncategorised

Replies: 1

Last updated: 9 July 2010

Viability of Mortgage Lending for CML Sufferers
by kathy (Jul 9)

Hi david,i managed to get a morgage but i couldnt get morgage protection,

kathy

by dmc23 (Jul 9)

Hello all,

As Rosie and myself will be getting married next year, we are discussing the possibility of buying a house.

However, I'm aware that my condition as a CML sufferer may well have
Category: Uncategorised

Replies: 1

Last updated: 9 July 2010
Pennie on 2 July 2010

Category: Uncategorised

Replies: 8

Last updated: 11 July 2010

PCT approval.
by vickiep (Jul 11)

Woo-hoo!! Fabulous news Pennie...well done girl!!

Vic

xx

by Ali Loram (Jul 4)

Pennie, what a relief for you. I am so pleased.

Have a great weekend.

Ali

by skiinglaketahoe (Jul 3)

Pennie

Delighted to hear your good news.

Keep well

Susan

by michael (Jul 3)

that is good news,but how comes changing from one TKI to another should be so stressful ? the costs must be about the same,and its better value for money to pay for one that works,Very pleased for
Category: Uncategorised

Replies: 8

Last updated: 11 July 2010
yogiB on 2 July 2010

Category: Uncategorised

Replies: 1

Last updated: 3 July 2010

donation for your great work!
by sandy craine (Jul 3)

Dear Beth, thank you so much for your donation. It is greatly appreciated and I am touched that you have thought to support us rather than other -very worthy- charities.

Thanks again,

Sandy

by yogiB (Jul 2)

Hi Sandy

I have forwarded a cheque to help towards the running of this amazingly supportive site for we CMLers! I hope you find the money useful and know that you have my deep appreciation
Category: Uncategorised

Replies: 1

Last updated: 3 July 2010
teddyb on 4 July 2012

Category: Uncategorised

Replies: 2

Last updated: 5 July 2012

Dry skin around the eyes, and bruises that dont go away, advice please.
by teddyb (Jul 5)

Thanks for replying Sandy.
Last platelet count was 141, that was 6 days ago, 2 weeks before that i think they were 120.
I think i will have to try ARNICA cream.

I found two types available in

by sandy craine (Jul 5)

Hi TeddyB,
I think that the dry skin might well be a side effect. I recently met a long term imatinib user and noticed the skin around his eyes was very dry and cracked. Hopefully this will go away

by teddyb (Jul 4)

Hello from Norway.
Ive been on Glivec 400mg for almost 3 months now, and lately ive been having some issues i thought maybe you could help me with.
The first thing im wondering about is my skin
Category: Uncategorised

Replies: 2

Last updated: 5 July 2012
sam on 26 June 2010

Category: Uncategorised

Replies: 4

Last updated: 29 June 2010

privacy in the workplace
by sam (Jun 29)

the company director got back to me and said the company has a right to tell any employee of my illness ?

he has sided with my line manager and has not taken furhter action against her?

where

by sam (Jun 27)

hiya thankyou for your input

i am very upset by what she has done, i have emailed the company director who is her manager and put a formal complaint in about her so will have to be an

by Bhiru (Jun 27)

First up - what an appalling lack of judgement and empathy your manager has shown.

Just to give a brief answer to your dilema, it strikes me that the information that you have provided to

by Olivia (Jun 27)

I'm so sorry to hear about this - what a dreadful breach of confidence. I wonder whether your manager realises just how much she has upset you? I hope it will not affect your
Category: Uncategorised

Replies: 4

Last updated: 29 June 2010
Lorraine Rollo on 26 June 2010

Category: Uncategorised

Replies: 2

Last updated: 28 June 2010

Ten years today
by sandy craine (Jun 28)

hello Lorraine,

thanks for your post. It is good to read... for all of us and especially for the newly diagnosed. It has been an amazing decade for those with CML and for others with the sort of

by yogiB (Jun 26)

Thanks SO much for sharing that uplifting bit of info!

I have only been diagnosed for 7 months and one of the continual intrigues is to know ... who is out there, on Glivec, still surviving and

by Lorraine Rollo (Jun 26)

Dear All,

It is ten years ago today since I was first diagnosed with CML after volunteering to give blood and find out if I could be a bone marrow donor for a five year old girl who had AML and
Category: Uncategorised

Replies: 2

Last updated: 28 June 2010
karen on 23 June 2010

Category: Uncategorised

Replies: 4

Last updated: 24 June 2010

Results
by Richard42 (Jun 24)

Hi Karena

The difference could be explained by the difference between cytogenic testing and PCR, which look at slightly different things though they are comparable in most cases. It's

by karen (Jun 24)

Hi Sandy

That is the weird thing - he tells me I have reached CCR even though the results are not 0. etc and that is what confused me (and still is!)

K

by michael (Jun 23)

Are you on 100mg ?it could be time to go to 140mg to get you over the last hurdle?

by sandy craine (Jun 23)

Hi Karena, I understand why you are seeking zero's. As far as 1.945 and 1.452 are concerned there is really very little difference between the results. More the issue is that you have not
Category: Uncategorised

Replies: 4

Last updated: 24 June 2010
Ali Loram on 22 June 2010

Category: Uncategorised

Replies: 5

Last updated: 23 June 2010

Reaction to all TKIs
by sandy craine (Jun 23)

Hi Ali,

this is a really bad reaction to dasatinib and is quite rare. It sounds like some form of myalgia -which is one of the side effects listed I think.

I attended a conference last

by ADJL (Jun 23)

Hi Ali,

So sorry to read that you're going through a tough period. I'm on Dasatinib and one of my biggest fears is exactly what you're going through- I can't imagine how scary

by skiinglaketahoe (Jun 23)

Hi Ali

I am sorry to hear that you are not able to tolerate the TKI's. I wasn't either; I had a variety of side effects albeit maybe not as severe as yours. I only tried glivec

by michael (Jun 22)

Transplant must be high on your option list so a donor search should be started to explore this avenue,that said how well the TKI are controlling your cml? perhaps other treatments might help
Category: Uncategorised

Replies: 5

Last updated: 23 June 2010