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Paul Cooke on 6 December 2006

Category: Uncategorised

Replies: 4

Last updated: 2 May 2007

Desatinib (Sprycel) UK availability
by Ella (May 2)

My grandad last week after being on dasatinib for 3 months, despite dasatinib pushing him back from accelerated/blast phase to chronic phase, has been denied funding by his PCT (West Kent) and been

by Janet (Dec 7)

My consultant said yesterday that he has just made a business case to the Health Authority for using dasatinib - so maybe NICE and the Welsh and Scottish equivalents have already made their

by Paul Cooke (Dec 7)

I think patients could have a battle with this drug, as we're constantly being reminded, the NHS struggles with funding for all sorts of issues, not only drugs. Ultimately I guess it will be down to

by keith Pratt (Dec 6)

Thank you Paul for yourinformation. Does this mean that we will have the same tussle as we had in 2001 with NICE over Glivec ? If this is to be then should we not as a support site be starting to
Category: Uncategorised

Replies: 4

Last updated: 2 May 2007
sandy craine on 6 December 2006

Category: Uncategorised

Replies: 2

Last updated: 8 December 2006

ENACT trail UK
by skiinglaketahoe (Dec 8)

Thanks for that info Elizabeth

May be next step!

Lovely wedding photos, btw, your daughter looks beautiful and so do you!

Susan

by Elizabeth Rees (Dec 7)

Just heard.

Currently Dr Graeme Smith in Leeds is the Principal Investigator for this study and is open and recruiting. Dr Conneally in Dublin St James's is also recruiting.

Early 2007:

by sandy craine (Dec 6)

i have heard that one UK centre has opened its trial for nilotinib(tasigna)as part of the ENACT programme.

i know it is not HH as they are still waiting for clearance from their ethics
Category: Uncategorised

Replies: 2

Last updated: 8 December 2006
sandy craine on 6 December 2006

Category: Uncategorised

Replies: 1

Last updated: 6 December 2006

MDACC Leukaemia Insights newsletter
by kestrel (Dec 6)

How fascinating - so much positive research going on - fills me with hope.

kestrel

by sandy craine (Dec 6)

A new issue of Leukemia Insights, the quarterly

newsletter from The University of Texas M. D.

Anderson Cancer Center, has been published.

Simply click on this link to access the
Category: Uncategorised

Replies: 1

Last updated: 6 December 2006
keith Pratt on 5 December 2006

Category: Uncategorised

Replies: 2

Last updated: 7 December 2006

eye sight and Glivec
by keith Pratt (Dec 7)

Hi Dennis

Thank you very much for your info, I will pass this onto consultant eye lady when I see here next, possibly with only the one eye that works at present
Keep smiling
Keith

by Dennis (Dec 5)

Hi Keith,

I developed cataracts in both eyes about 2 years after a stem cell transplant. I've read quite a few posts from cml patients needing the same lens replacement operation as

by keith Pratt (Dec 5)

Good afternoon everyone

Interesting fact came my way today. Attended at local hospital in Henley today to have a problem I have with cateracts looked at. The dear consultant who examined my
Category: Uncategorised

Replies: 2

Last updated: 7 December 2006
Suzie Q on 4 December 2006

Category: Uncategorised

Replies: 1

Last updated: 5 December 2006

Frequency of tests
by sandy craine (Dec 5)

most clinicians say between 3 and 6 months for PCR testing.

good luck,

sandy C ;o)

by Suzie Q (Dec 4)

Hi all,

Im quite nervous, next week i have my regular 2 month appt at hosp and will have my white count checked as normal, however i haven't had another BMB since my diagnosis in January. They
Category: Uncategorised

Replies: 1

Last updated: 5 December 2006
Elle on 4 December 2006

Category: Uncategorised

Replies: 5

Last updated: 8 January 2007

Hemoglobin counts!!!!
by Anonymous (Jan 8)

my mom has had cml now for almost 3 years and her hemagbion has been dropping alot in like the last 5 months. Can someone please tell me if this is something serious or is the some what normal for

by David Morton (Dec 6)

Hi Elaine

I had low haemaglobin levels for a while when I was on 400mg of Glivec. I had a virus and was a bit run down at the time and it took a couple of months to recover - but it did on its

by Elle (Dec 5)

Hiya Michelle
Thanks for your reply. The symptoms you mention are similar to mine. I will let you know how i get on with latest blood tests. Should know by the end of the week.
Thanks again. Take

by michelle (Dec 5)

Hi Elaine,
I also had this problem when I was put on 600mg of glivec, I am back to 400mg at the moment. I had to have a blood tranfusion every ohter week whislt on the higher dose although my hg
Category: Uncategorised

Replies: 5

Last updated: 8 January 2007
skiinglaketahoe on 3 December 2006

Category: Uncategorised

Replies: 3

Last updated: 6 December 2006

update on my BMS saga
by skiinglaketahoe (Dec 6)

Thanks Sandy for the words of the encouragement.
Realistically I realise that the AMN is unlikely to suit me if the other 2 drugs haven't. However I do have to try and then it is onto the BMT.

by sandy craine (Dec 6)

dear susan, sorry to hear of you problems with the inhibitor drugs. your doctor may well be right about you having the same problem with tasigna (amn107) as all three drugs target at least one of

by David Morton (Dec 3)

I am sorry you are having such a difficult time with BMS. If you ever want to talk things over, don't hesitate to get in touch.

Best wishes

David

by skiinglaketahoe (Dec 3)

Hi

This is an update on the topic of BMS that I posted a few weeks ago.

I have had to stop the BMS. I had an episode a couple of weeks ago where I felt very hot and unwell, no
Category: Uncategorised

Replies: 3

Last updated: 6 December 2006
ypoulton on 1 December 2006

Category: Uncategorised

Replies: 4

Last updated: 5 December 2006

cardiac toxicity
by sandy craine (Dec 5)

hi yvonne,

sorry to hear of your worries about your ecg tests etc.... as far is i know the connection between glivec/sprycel and presumably tasigna and caridotoxicity is tenuous, but those

by Pennie (Dec 2)

Hi Yvonne
Sorry you are having to have all the tests, fingers crossed that things turn out fine. There are other options out there for CMLers now, so if Glivec becomes a 'no no' you do have

by Bee (Dec 2)

Hi Yvonne

Fingers crossed for you - even the slightest blip can trigger further investigations in these days of high tech gadgets. This can be quite alarming at the time, because doctors don't

by Peter Miles (Dec 1)

Hi Yvonne

Good luck with your tests and the results.

Apparently there are a small number of CML Glivec patients with possible cardiotoxicity but not necessarily because of the Glivec. To
Category: Uncategorised

Replies: 4

Last updated: 5 December 2006
geemel79 on 1 December 2006

Category: Uncategorised

Replies: 4

Last updated: 31 July 2008

im so scared
by masmot (Jul 31)

Hope ur blood test will turns out ok. Be patient and stay calm.

by Anonymous (Dec 5)

my blood results have come back and once again its a low platelet count but they still cant explain why my platelets keep being so low but yet im ot in the least anemic, ive got to go for other test

by David (Dec 2)

However hard it is, and it is hard, Barbara is right. You have to wait for the results of the blood tests and that is inevitably a really worrying time. When my wife, Val, had her first blood tests

by Barbs (Dec 1)

I'm sorry that you're feeling so scared, I remember how frightened I was while I was waiting for the results of my blood tests. Please try & stay calm, you don't really know what you're up
Category: Uncategorised

Replies: 4

Last updated: 31 July 2008
michelle on 30 November 2006

Category: Uncategorised

Replies: 2

Last updated: 5 December 2006

pcr test
by sandy craine (Dec 5)

it will probably be sprycel... but it is going to be quite expensive so will have to go through a NICE assessment before it gets funding through the NHS!

sandy C ;o)

by Janet (Dec 1)

I think the new drug mentioned may be Dasatinib [Sprycel]. My consultant said at my last visit that it has been licensed for general use [as opposed to clinical trial] from January.

Best of

by michelle (Nov 30)

Hi everyone, I havent posted for a while. I had the results of my pcr able test today and although I am still in cyto remmision the number has risen and the consultant scared me a bit as started
Category: Uncategorised

Replies: 2

Last updated: 5 December 2006
Coyney on 30 November 2006

Category: Uncategorised

Replies: 11

Last updated: 23 December 2006

I'm 1 year post transplant today!!! :-)
by Coyney (Dec 23)

Hi Vanessa,
You can view any of the diaries by scrolling down on the CML support home page. Or just click on my name highlighted in blue below. You can contact me through email if you like it's m.

by Anonymous (Dec 6)

Hi Martyn

Congratulations that's fantastic news. BMT scares the living day lights out of me. I would love to hear your story.

Be well

Vanessa

by David Morton (Dec 6)

Well done Martyn,

You have been an inspiration to me and I have followed your progress thinking that if you do well, I will too - no pressure there then.

I remember reading about the

by jaynelister (Dec 2)

Hi Martyn,

Congratulations on your 1 year post transplant - you really have done SO well!
I will be raising a glass to you this evening.
Love Jayne xx
Category: Uncategorised

Replies: 11

Last updated: 23 December 2006
Vanessa Priest on 28 November 2006

Category: Uncategorised

Replies: 2

Last updated: 28 November 2006

Low WBC, 300mg v 400mg +Neulasta
by Vanessa Priest (Nov 28)

Thank you Nancy

That's helpful.

Vanessa

by Nancy C. (Nov 28)

In the lab, 350mg was the minimum effective dose......which translates to the 400mg dose (as 350mg is not made).
You did have a very quick response to Gleevec, becoming PCRU in only a few months

by Vanessa Priest (Nov 28)

Hi

Once again I find myself with low WBC and a low neutraphil count, so I have a week off from Gleevac while my counts recover. I have an appointment on Friday with my specialist. What I'd
Category: Uncategorised

Replies: 2

Last updated: 28 November 2006
Coyney on 26 November 2006

Category: Uncategorised

Replies: 60

Last updated: 18 February 2014

Does anyone think about what caused their CML??
by Ailie Marie (Feb 18)

My partner was diagnosed with CML in May 2008 just after his 50th birthday. He has been on Gleevec ever since. He worked in the Oilfield for over 30 years on the drilling rigs - most of the time as

by MelanieC (Nov 4)

Hi I am new to this forum and i have joined on behalf of my husband , he was diagnosed in January of this year. It is making very interesting reading as to what causes CML, I cant believe that no

by greg d (Oct 13)

Johan,
Your English is fine. I'm American but my mother was born in Leiden and grew up in Noordwijk and Haarlem. I was born and raised in California, but I've visited the Dutch side of my family

by greg d (Oct 13)

I have no idea what caused my CML. I was in the U.S Army from 1980-1983 and in the U.S Marines from 1984-1987. I've read about Viet-Nam vets getting Leukemia and other illnesses from exposure to
Category: Uncategorised

Replies: 60

Last updated: 18 February 2014
Paul Cooke on 24 November 2006

Category: Uncategorised

Replies: 1

Last updated: 28 November 2006

Dasatinib (Sprycel) announcement
by Anonymous (Nov 28)

Hooray! This is good news for CML patients!
I'd be interested what the source of this information is, as I haven't been able to locate it via Google, and haven't found anything on the EMEA site yet

by Paul Cooke (Nov 24)

Some interesting news about this drug:
Bristol-Myers Squibb has been granted European Union approval for Sprycel in the treatment of adults chronic myeloid leukaemia (CML) or acute lymphoblastic
Category: Uncategorised

Replies: 1

Last updated: 28 November 2006
arrowsc on 23 November 2006

Category: Uncategorised

Replies: 1

Last updated: 5 December 2006

Early Christmas present
by sandy craine (Dec 5)

hi craig......... such good news for you to have, especially before xmas ;o) many congratulations and wishing you many more zero's in future tests.

sandy C ;o)

by arrowsc (Nov 23)

Hello all,
Just got back from my latest appointment with Dr O'Brien at Newcastle, and he gave me the one thing that I asked Santa Claus for, I have been on Glivec for around 14 months, was 100 %
Category: Uncategorised

Replies: 1

Last updated: 5 December 2006
Paul Cooke on 23 November 2006

Category: Uncategorised

Replies: 3

Last updated: 24 November 2006

Elevated mcv
by Paul Cooke (Nov 24)

Thanks for the comments, noticed I'd left a bit out on my original posting - B12, Folate, and Thyroid function all being done, as all can contribute to elevated mcv.

Interesting to see others

by Bee (Nov 23)

Hi Paul,

Yes Ted had these "obese" red cells at one point. We laughed when Barbara called them that! They checked out his B12 and folic acid levels - but all ok, so put it down to Glivec.

by Barbs (Nov 23)

Dear Paul,

if it's of any help, my red cells have been "obese" as my Dr calls them since starting Glivec, they were upto 120 at one point, I take Lederfoline (a folic acid supplement) &

by Paul Cooke (Nov 23)

I wonder if anyone's had problems with elevated mcv (mean corpuscular volume)?

This relates to the size of the red blood cells, and can be elevated for a number of reasons - just wondered if
Category: Uncategorised

Replies: 3

Last updated: 24 November 2006
sandy craine on 20 November 2006

Category: Uncategorised

Replies: 1

Last updated: 20 November 2006

GLIVEC- 5 years on
by David (Nov 20)

Joseph - thank you for this link. Like Sandy, I felt very emotional watching it and in particular watching Dr Druker to whom so many owe a huge debt of gratitude, including Val and me. Perhaps the

by sandy craine (Nov 20)

joseph posted the link to the novartis video which celebrated 5 years of glivec therapy this year. some of us were able to watch this UK version of the video at a recent function organised by
Category: Uncategorised

Replies: 1

Last updated: 20 November 2006
ypoulton on 16 November 2006

Category: Uncategorised

Replies: 5

Last updated: 24 November 2006

HH app
by Paul Cooke (Nov 24)

My wife also gets cramp intermittently, but at present doesn't take anything.

In answer to some of the problems people have experienced in getting Quinine or Magnesium Glycerophosphate

by keith Pratt (Nov 19)

Hi

Quinine in tonic water, according to my GP is better than the drug itself. Supppose one could try a little gin in it as well ?

Worth atry, I have used it in the past, but without the

by Paul Ralph (Nov 17)

On advice from my GP I drink Tonic Water, contains quinine, and it has proven to be very good at controlling the cramps.

PaulR

by Des (Nov 17)

I asked HH last week about this problem and Dr Marin suggested magnesium glycophosphate (which he prescribed) and calcium which he said I could get in a health shop. An alternative would be quinine
Category: Uncategorised

Replies: 5

Last updated: 24 November 2006
Bee on 16 November 2006

Category: Uncategorised

Replies: 4

Last updated: 1 December 2006

10 weeks - but worth the wait
by Bee (Dec 1)

Hi David

So pleased to read of your negative PCR - this must have been due to the Retro Bar as well! Hope you enjoyed your break in Spain? As we don't have to go back to the hospital till Feb

by David Morton (Nov 28)

Congratualations to you and Ted, that is great news.
Keep drinking and keep dancing.
David

by Anonymous (Nov 21)

Hi Bee
Great news with Ted's results, I'm really pleased for both of you. It was lovely to meet you and Ted in Manchester.
Take care
Angela

by sandy craine (Nov 18)

hello bee,

what fantastic news for you both. give td my very best....... i am sure you will be celebrating this wonderful news.

love,

sandy C ;o)
Category: Uncategorised

Replies: 4

Last updated: 1 December 2006
jjhollis100 on 16 November 2006

Category: Uncategorised

Replies: 2

Last updated: 17 November 2006

PCR 1st result
by Bee (Nov 17)

Sorry, I meant of course, Helana - a beautiful name.

Bee

by Bee (Nov 16)

Congratulations on the birth of Helena !

Marvellous news.

It won't be till your next PCR result that you'll see the % creeping down - some people take ages and others quite quickly. (Not

by jjhollis100 (Nov 16)

Hello All
Been a few weeks since my last post, which was regarding my 1st pcr result and stem cell banking.
Well firstly the good news we now have a baby daughter born last week 8/11/2006 7.3lbs and
Category: Uncategorised

Replies: 2

Last updated: 17 November 2006