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amanda1977 on 9 September 2008

Category: Uncategorised

Replies: 6

Last updated: 7 October 2008

New Member
by julie hubbard (Oct 7)

Hi Tracey my email address if you want to get in touch is julie@mason67.fslife.co.uk
Julie

by tadlaw (Sep 25)

Helo Julie,

You're the first person I've seen with a young child with CML. My father just attended a conference in Boston, Mass sponsored by the European Hematologic Society on CML and none

by kathy (Sep 12)

Hi amanda,i was diagnosed at 26 im now 31 i also have a little boy who is 6 in november,if you would like to ask me anything then email me on kathy.prudence@homecall.co.uk .hope your ok its alot

by sandy craine (Sep 10)

Hello Amanda,

I am glad you have found this site so soon after your diagnosis. I am sure you will take some time to get to grips with it all and take on board all the information about CML.
Category: Uncategorised

Replies: 6

Last updated: 7 October 2008
SwanValleySue on 8 September 2008

Category: Uncategorised

Replies: 5

Last updated: 9 September 2008

Blood Test - Now PCRU
by sandy craine (Sep 9)

Hi Sue,

my pcr's have been negative for around 18 months now... but that is how it should be as I had a sib matched stem cell transplant (mini allo + glivec + DLI study at hammersmith) in

by SwanValleySue (Sep 9)

Thanks Sandy
I will add if you do not mind to the Australia Chat Group
A few other people have just made PCRU before me and also

maybe interested in this knowledge to discuss with their

by sandy craine (Sep 9)

Hi Sue,

IFN is an acronym for interferon.... sorry I should have explained. Interferon was used as front line treatment for chronic phase CML before Glivec and is self administerd by injection

by SwanValleySue (Sep 9)

Sandy
What is IFN and this type of treatment
Sue
Category: Uncategorised

Replies: 5

Last updated: 9 September 2008
Pennie on 5 September 2008

Category: Uncategorised

Replies: 3

Last updated: 8 September 2008

7 years since diagnosis
by sandy craine (Sep 8)

Hi Pennie,

Your post is very encouraging indeed and it is obvious that Tasigna has made a big difference to your quality of life. I am really happy to hear that you are responding to this 2nd

by johnh (Sep 6)

Thank you Pennie for your post. I'm about three years behind you and I have found your post very encouraging. I also found it very interesting that you changed to Tasigna after 5 years of Glivec.
So

by Janet (Sep 6)

Congratulations Pennie!
7 years and counting - here's to many more!! And I hope those zeros return for more lengthy stays as well.
Hugs, Janet

by Pennie (Sep 5)

Hi everyone,
As I sat this evening with the family I began to wonder just how far I will manage to get from that dreadful day of diagnosis. So far 7 years feels like a pretty good milestone to
Category: Uncategorised

Replies: 3

Last updated: 8 September 2008
Ali Loram on 4 September 2008

Category: Uncategorised

Replies: 3

Last updated: 6 September 2008

200mg Glivec
by Janet (Sep 6)

Hello Ali
Just saying congratulations on your first CML Anniversary! By coincidence, 4th September is also the date that I was diagnosed in 2006. All the best for many more anniversaries to come.

by Ali Loram (Sep 4)

may thanks for your quick respone. I will mail you privatly. thanks for your time sandi

by sandy craine (Sep 4)

Hi Ali,

whilst I am glad that you are not suffering such bad side effects on the reduced dose, I must say that I find your consultant is rather unusual amongst specialist CML clinician in that

by Ali Loram (Sep 4)

Hi All, I have previously posted about this subject before but I have been back to clinic today. Thanks Sandy for your reply to my last mail & I took your comments on board.

I have been on
Category: Uncategorised

Replies: 3

Last updated: 6 September 2008
sandy craine on 29 August 2008

Category: Uncategorised

Replies: 13

Last updated: 28 September 2009

Pregnancy and Glivec
by pratik (Sep 28)

I think u take a good decision.

sriti jha

by stella (Sep 26)

Thanks for posting this Sandy. It is interesting to see how other people have fared.
We have been to Manchester St Mary's MRI to see the fertility people and they have done some tests. They advised

by Martha Stuart-Berrisford (Sep 24)

35 weeks pregnant now. Counting down the weeks. Doctors were worried about my WBC which was up last week but have decided not to give me any treatment at the moment and monitor me weekly. I am sure

by Martha Stuart-Berrisford (May 28)

I am now 19 weeks pregnant and have been ok. Baby is growing well and my bloods are actually getting better as the pregnancy progresses. I wonder if anyone has had the same thing happen?
The only
Category: Uncategorised

Replies: 13

Last updated: 28 September 2009
SwanValleySue on 29 August 2008

Category: Uncategorised

Replies: 1

Last updated: 29 August 2008

One for the Gals
by sue (Aug 29)

susan dickerson
Thank goodness that they are finally listening to us gals it seems to be a big problem and needs addressing sue d

by SwanValleySue (Aug 29)

August 2008
Just opened a new box of glivec. (Australia)
New Updated Glivec Medicine Information pamphlet inside with Side Effect updates etc
Novartis Statements for Side Effects Added are the notes
Category: Uncategorised

Replies: 1

Last updated: 29 August 2008
sarahjane on 28 August 2008

Category: Uncategorised

Replies: 2

Last updated: 29 August 2008

mood swings with glivec
by sue (Aug 29)

susan dickerson

I have had terrible mood swings and been very emotional since being on glivec 6 years in all. Before this I was on interferon and always felt great, which my consultant thought

by sandy craine (Aug 29)

Please take a look at the discussion thread on natural progesterone therapy....go to pages 2 or 3.... it can help with imbalanced hormones that can trigger PMS and/or menopausal symptoms. My 22 year

by sarahjane (Aug 28)

Does anyone suffer with mood swings since being glivec
Category: Uncategorised

Replies: 2

Last updated: 29 August 2008
sarahjane on 28 August 2008

Category: Uncategorised

Replies: 2

Last updated: 29 August 2008

CML Weight Issues
by sandy craine (Aug 29)

Dear Sarahjane,

I really sympathise with you.... to put on so much weight must really be hard. It must affect your self confidence.

I am sure there are lots of us who can relate to this

by SwanValleySue (Aug 29)

Sarah
Weight issues is a side effect of glivec
In fact it is such an issue the CML 2 group in Canada

have made a chat group named Losing Weight with CML
http://us.rd.yahoo.com/evt=42879/*http

by sarahjane (Aug 28)

Hi I was diagnosed with CML four years ago, since then been on glivec and have put on at least 6 stone I was a comfortable size 12 before hand now am size 20. Does anyone still have problems with
Category: Uncategorised

Replies: 2

Last updated: 29 August 2008
kiruba ganesh on 25 August 2008

Category: Uncategorised

Replies: 3

Last updated: 26 August 2008

Regarding Glivec
by sandy craine (Aug 26)

Hello Kiruba... Yes you are right, by that test you seem to be 85% ph positive. How long ago did you have this test? This would explain why your doctor wants to increase your dose... in order to get

by kiruba ganesh (Aug 26)

Thanks sandy for your immediate response. ACtually i dont know about cytogenic response.Last time i take FISH test. The result shows that 85% positive.i think may it ph %.i dont know more about that

by sandy craine (Aug 25)

Hi and welcome to this forum.... Your doctor must have a good reason to increase your dose. Have you asked him why? It may be that he considers your response to 400mg is not as good as he would like

by kiruba ganesh (Aug 25)

I had CML for past 1 and half years. I take glivec 400mg for past one year. Now my doctor increased my dosage from 400mg to 600mg.I want to know it will good to increase the dosage or not? already
Category: Uncategorised

Replies: 3

Last updated: 26 August 2008
richard bolam uk on 22 August 2008

Category: Uncategorised

Replies: 1

Last updated: 24 August 2008

anyone know how i can get a job working in fund raising for a cancer org ?
by sandy craine (Aug 24)

Hi Richard,

try the Third Sector online.... see direct link below for fundraising jobs in health/medical charities... best of luck ;o)

Sandy
...thirdsector-jobs-here

by richard bolam uk (Aug 22)

hi all you fellow club members, time to try and put somthing back i think. i am a 44 yr old highly qualified sales profesional. i would love the chance to do somthing for someone else while i am
Category: Uncategorised

Replies: 1

Last updated: 24 August 2008
Pennie on 21 August 2008

Category: Uncategorised

Replies: 2

Last updated: 22 August 2008

New tretment for AML at the Royal Free
by sandy craine (Aug 22)

....this link explains this study in a little more detail
....camden journal article
Sandy

by skiinglaketahoe (Aug 22)

Always delighted to hear/read publicity for the RFH. They do a 'mean' CML and transplant treatment there as well. The haematology team,

headed by Professor Stephen Mackinnon is excellent,

by Pennie (Aug 21)

Follow the link for info on this pioneering development for the treatment of AML. Fingers crossed this route might lead to developments for CML in the future.
http://www.hamhigh.co.uk/content/
Category: Uncategorised

Replies: 2

Last updated: 22 August 2008
Steven D on 18 August 2008

Category: Uncategorised

Replies: 10

Last updated: 23 August 2008

4th Anniversay today.
by Diana Green (Aug 23)

Diana G
Hi Susan!
You too - and any other celebratory CMLers can enjoy a free bottle on your CML anniversary...the restaurant is part of a national chain called Ego (sorry about the free 'puff' here

by skiinglaketahoe (Aug 22)

Diana
that is audacious...........but it really made me laugh.......good for you!

Enjoy
regards
Susan

by jaynelister (Aug 21)

That is truly great news!
Lots and lots of luck with the new business, hope it all goes well for you - you deserve it.
Much love
Jayne xxx

by Diana Green (Aug 21)

Diana G
My local Italian restaurant offers a free bottle of wine on the anniversary of 'a special date'. My special date was October 11 2006 when I was diagnosed with CML, so I'll be raising a glass
Category: Uncategorised

Replies: 10

Last updated: 23 August 2008
ypoulton on 28 August 2008

Category: Uncategorised

Replies: 1

Last updated: 29 August 2008

fluid round heart
by sandy craine (Aug 29)

Hi Yvonne,

I have not heard of problems with fluid around the heart being caused by imatinib. However there were some reports of a possible link to cardiac side effects last year. I think

by ypoulton (Aug 28)

Just realised I posted my original in the wrong place.

I have fluid round my heart, just wondering if any 0ne else has had this. My local dr is not sure if it is glivec related 400mg daily.
Category: Uncategorised

Replies: 1

Last updated: 29 August 2008
SwanValleySue on 13 August 2008

Category: Uncategorised

Replies: 3

Last updated: 16 August 2008

Explanation of High White Blood Count?
by sandy craine (Aug 16)

As Julie has suggested, you can find information on blood cell counts on the FAQ button on the left hand menu... see snip below:
...White Blood Cell (WBC) count is important to monitor as a

by zaviemiller (Aug 13)

Hi Sue,
A WBC count of 101 at diagnosis time is not that high. Many patients have WBC counts over 500 at diagnosis. Mine was 145.
The normal range for WBC is 4-11. On Gleevec the WBC will often be

by julie hubbard (Aug 13)

the answers you need are listed in FAQ normal is 4-11

by SwanValleySue (Aug 13)

Does anyone know how high your white blood counts should not be

or what is normal.
Can someone answer this question.

This is for a friend - I actually did not get my first couple of
Category: Uncategorised

Replies: 3

Last updated: 16 August 2008
skiinglaketahoe on 12 August 2008

Category: Uncategorised

Replies: 1

Last updated: 21 August 2008

interesting article from this week's Sunday Times
by David (Aug 21)

Susan
Thanks for that article.
I have suggested to Tessa Holyoake that she might want to look at seeking a research grant from the Lady Tata Memorial Trust, whick was established by Sir Dorabji

by skiinglaketahoe (Aug 12)

http://www.timesonline.co.uk/tol/life_and_style/health/article4491852.ece
Susan
Category: Uncategorised

Replies: 1

Last updated: 21 August 2008
Don Adkins on 10 August 2008

Category: Uncategorised

Replies: 1

Last updated: 11 August 2008

Interesting Article from the latest LLS news letter
by sandy craine (Aug 11)

Hi Don,
Thanks for posting this article. I do hope you are well and thriving.
I am reminded that today (August 11th) is the day I took Glivec (then STI 571) for the very first time 9 years ago. I

by Don Adkins (Aug 10)

Hi Everyone,
Although this method of testing can now only be used in research, my guess is that it will be fast-tracked (hopefully) soon
Category: Uncategorised

Replies: 1

Last updated: 11 August 2008
kathy on 9 August 2008

Category: Uncategorised

Replies: 1

Last updated: 11 August 2008

hemoglobin
by sandy craine (Aug 11)

Hi Kathy,
It really depends on the individual. An hgb count of under 10 is usually considered low. 10.8 is not too bad but it does depend on what you are used to.
I found that when I was taking

by kathy (Aug 9)

Hi all,had an appointment yesterday and my hb was 10.8 is this quite low,thanks guys.
Category: Uncategorised

Replies: 1

Last updated: 11 August 2008
fehr on 5 August 2008

Category: Uncategorised

Replies: 1

Last updated: 6 August 2008

Side effects advice
by sandy craine (Aug 6)

Dear John,

Thanks for sending this post. I am sure it will be of help to many who read this forum. I will copy it if you don't mind and put it on a more permanent page, that way your effort

by fehr (Aug 5)

I picked this up from the US Leukemia and Lymphoma Society forum and thought it may be some use here.
John

-------------------------------------
There are a lot of side affects that come with
Category: Uncategorised

Replies: 1

Last updated: 6 August 2008
anhenbo on 7 August 2008

Category: Uncategorised

Replies: 4

Last updated: 28 August 2008

side effects
by ypoulton (Aug 28)

Hi all

Not posted for quite some time but need some advice just come back from seeing doc and it seems I have fluid round my heart at the moment he's not sure if it is glivec related and is

by sandy craine (Aug 15)

It might be worthwhile doing a little research on this amino acid and its possible use in peripheral neuropathy
...Acetyl-L-carnitine has been evaluated in a pilot study by Maestri and colleagues[43

by anhenbo (Aug 7)

Hi Sandy
Thanks for the quickest respons ever.

Om August 18 I will see my docter in Amsterdam and discuss the possibilities for measuring plasma levels.

by sandy craine (Aug 7)

Good to hear from you.
There have been a few posts about neuropathy as a side effect of Glivec/imatinib. You can find them by using the search box... just type in neuropathy.
It may be that your
Category: Uncategorised

Replies: 4

Last updated: 28 August 2008
Rick Anderson on 29 July 2008

Category: Uncategorised

Replies: 1

Last updated: 1 August 2008

ALL & MDS
by sandy craine (Aug 1)

Hi Rick,

Thanks for sharing your story here. I must say you have endured a lot and I do not envy you the decision to go for a transplant. However you are aware of the consequences of 'sticking

by Rick Anderson (Jul 29)

Hello to everyone in this very special club where all members are leukemia patients.

I was initially diagnosed with leukemia while serving with the US State Department in Lagos, Nigeria. That
Category: Uncategorised

Replies: 1

Last updated: 1 August 2008