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sandy craine on 3 August 2009

Category: Uncategorised

Replies: 2

Last updated: 4 August 2009

Monitoring CML
by sandy craine (Aug 4)

I am not sure you will find that current guidelines will differ that much year on year. So guidelines from 2007 will be pretty much the standard in 2009.
I have taken a look at the European

by Sneezy123 (Aug 3)

I can only find the 2007 Guidelines, Sandy. Thanks, Frank

by sandy craine (Aug 3)

The British Committee for Standards in Haematology (BCSH) has published “Recommendations for the Management of BCR-ABL-positive Chronic Myeloid Leukaemia” 3 which is available to download from the
Category: Uncategorised

Replies: 2

Last updated: 4 August 2009
sue on 1 August 2009

Category: Uncategorised

Replies: 3

Last updated: 2 August 2009

bone marrow tests in newly diagnosed patients and falling platelet counts
by zaviemiller (Aug 2)

Dear Sue,
Michael is correct. She needs to see a CML expert or at least see a consultant who follows the established guidelines set out by the top CML doctors. Her consultant is making them up as

by zaviemiller (Aug 2)

repeat of above comment

by michael (Aug 1)

Platelet counts of sub 50 is the point that problems occur,I have a 62 platelet count at the moment and have been for some time,but my bone marrow has improved so I am waiting for my platelet count

by sue (Aug 1)

Could anyone tell me how often a newly diagnosed patient should have a bone marrow test, when I was first diagnosed in 2000 I was having them every 3 to 6 months at first until I was clear then if
Category: Uncategorised

Replies: 3

Last updated: 2 August 2009
bobosbo on 29 July 2009

Category: Uncategorised

Replies: 5

Last updated: 10 August 2009

Glivec & Grape Seed Extract
by sandy craine (Aug 10)

Hi Bhiru,

thanks for your information and update about your husband. I remember clearly that you were looking at other possible options. Feverfew has been under discussion on several forums

by Bhiru (Aug 7)

Hello there,

Just to chip in my two cents...

My husband's PCR results plateaued too high last year. Around the same time a mutation was also detected. At that stage there were

by bobosbo (Aug 4)

Hello All,

Having checked with the Hospital, I have been advised not to take grape seed extract as any possible side effects are not known, as clinical trials have not been carried out.

by bobosbo (Jul 30)

Thanks Sandy,

Thanks for that, before going any further I had better touch base with my Dr at the hospital, don't want to upset anyone.

Bob
Category: Uncategorised

Replies: 5

Last updated: 10 August 2009
Pennie on 27 July 2009

Category: Uncategorised

Replies: 7

Last updated: 30 July 2009

Rebecca - CML and AML
by sandy craine (Jul 30)

Dear Rebecca,
Do you mean 3 weeks without having an appointment?

You are following your instincts and if you feel you do not need to know too much detail about your blast cell % at this time

by rebecca (Jul 29)

I had my weekly appt today and all is still fine with blood test, I'm still anaemic though, but it's improving slowly. The best bit is that because of the consistant results I've been given 3 weeks

by sandy craine (Jul 28)

Dear Rebecca,

You doctor is indeed very well respected haematologist with an research interests in 'the pathogenesis and treatment of both chronic and acute myeloid malignancies'.
I think

by sandy craine (Jul 28)

Dear Rebecca,
It might help you (and us) to better understand your exact situation if you asked your doctor what the % of blast cells were in your marrow/peripheral blood at diagnosis and what he
Category: Uncategorised

Replies: 7

Last updated: 30 July 2009
karen on 24 July 2009

Category: Uncategorised

Replies: 5

Last updated: 25 July 2009

PCR Question
by michael (Jul 25)

Early Days,Its a small reduction but hey overtime these add up,its good news and I for one would swap results with you,

depending on white cell counts and plattlets,its quite common for a

by karen (Jul 25)

Hi Susan
I am on 100mg of Dasatanib a day (2 x tablets) and have been since Christmas. This is only my second PCR on Dasatanib so I think the gaps are around 4 - 6 months. I agree that if the next

by skiinglaketahoe (Jul 24)

Hi Karena
I am inclined to say that the change in your PCR is really insignificant (sorry) and that the levels really are identical. I think that if your next PCR doesn't show any significant drop

by karen (Jul 24)

I guess as the trend is going in the right direction I should accept it but we all want the Holy Grail of 0.1 and it doesn't seem to be going down quick enough! He seems to look at the other counts
Category: Uncategorised

Replies: 5

Last updated: 25 July 2009
Steven D on 22 July 2009

Category: Uncategorised

Replies: 1

Last updated: 23 July 2009

Annual Patient-Carer Seminar
by Barbs (Jul 23)

Well done for the PCR Steven!

I just hope that it's not the weekend Nov. 14th - we've got the first annual CML day here in France then,

all the best to Carol,

Barbara

by Steven D (Jul 22)

Hi All.

I was at the Hammersmith today and was informed that the annual seminar will be in Nottingham in November. More info will follow shortly. Good results today. PCR 0.029

Steven D
Category: Uncategorised

Replies: 1

Last updated: 23 July 2009
andrew on 20 July 2009

Category: Uncategorised

Replies: 5

Last updated: 22 July 2009

PCRU - Exercise question.
by Andy Parkin (Jul 22)

Andy, Hope following comments might be helpful. I was diagnosed with CML in March '07. On 400mgs of Gleevec from April'07 and 600mgs from June '08 ( low plasma levels of drug were reason for change

by cmlblogger (Jul 21)

banana I do quite regualarly either by themselves or in smoothies, but avocado is one of those fruits that I cannot face, i think it is the texture :S
Cheers - Rob
rob - http://cmlblog.spaces.live.

by sandy craine (Jul 20)

Hi Rob/Alistair/Kathy,
If you are doing quite full one exercise it might be a good idea to make sure you are supplementing with potassium tablets/foods rich in this mineral, as you need to maintain

by kathy (Jul 20)

Hi andy,im glad its not just me,i get this quite often,right down my shins they are even sore to touch,how odd.

take care,kathy
Category: Uncategorised

Replies: 5

Last updated: 22 July 2009
louisepim on 19 January 2010

Category: Uncategorised

Replies: 15

Last updated: 25 January 2010

Getting Glivec free whilst abroad
by Barbs (Jan 25)

Glivec costs 2518 euros a box here (about 80 euros) per tablet.

I've been living here in France for 18 years & when I was in the UK in 2007 & fell ill with diarrhoea & vomiting, I

by skiinglaketahoe (Jan 24)

Louise
I am in the UK, I was on glivec and am now post transplant. Yes, obviously patients don't now pay anything for the glivec but that is the price that Novarits sell it to the NHS.
I do in fact

by louisepim (Jan 24)

Susan - Thanks for that info. Is that in America? I wonder whether the price in Europe is different. Are you in the medical profession or are you a patient who has to pay for Glivec? We can get

by Bee (Jan 23)

We were also given plenty of conflicting advice. Considering the high cost of Glivec - I'd get it in writing that you will be refunded.

Bee
Category: Uncategorised

Replies: 15

Last updated: 25 January 2010
chrissbb on 19 July 2009

Category: Uncategorised

Replies: 2

Last updated: 21 July 2009

Interactions Checker
by chrissbb (Jul 21)

Sandy,

Thank you for that information, i was unaware that there were different types of vaccine. You certainly make it very clear in your reply, i,m 100% sure that most would be asking the GP

by sandy craine (Jul 20)

Dear Chris,
Vaccines are generally not given if they are live vaccines. This is the sort that are flagged up on the drug interaction site linked in your post.
I have just been given pneumovax (

by chrissbb (Jul 19)

To whom it may concern,

I found this interactions checker on a website, when you type in imatinib, it brings a list of other drugs which interact with Glivec. In the Major interactions list is
Category: Uncategorised

Replies: 2

Last updated: 21 July 2009
rebecca on 18 July 2009

Category: Uncategorised

Replies: 7

Last updated: 20 July 2009

Glivec 800mg single dose?
by rebecca (Jul 20)

Hi
Before starting Glivec I was taking 1g of Hydroxycarbamide per day, I took this for 1 week then I took Glivec 400mg + 1mg Hydroxycarbamide per day for another week, then for 3 weeks just 400mg

by sandy craine (Jul 19)

Dear Rebecca,

I am sorry you have been diagnosed with CML and that you are in blastic phase.

I would advise that you must ask you doctor exactly what this means in your case. The fact

by rebecca (Jul 19)

Thank you Pennie,

I am being seen at the Royal Hallamshire hospital in Sheffield under the guidance of Prof. Reilly who I understand is highly respected in the CML world; he is really lovely

by Pennie (Jul 19)

Hello Rebecca
Where are you being treated? Perhaps if its not a specialist centre you could ask for a second opinion at one? 800mg would be the norm for someone Dx in blast crisis I think, taken in
Category: Uncategorised

Replies: 7

Last updated: 20 July 2009
chris on 17 July 2009

Category: Side effects

Replies: 8

Last updated: 25 June 2015

Leg Pain.
by johnw1001 (Jun 25)

Hi Sandy and other fellow contributors,

Have been on imatinib for over 8 years and have always experienced muscle cramps especially at night usually at 3 or 4 in the morning.Taking advice from

by Bee (Jun 25)

It could possibly be sciatic pain if they touched a nerve whilst doing one of the BMB's? especially if you had four done in one month.

An Osteopath might be able to help?

by Ahmadsiraj62 (Jun 24)

Hi i am 6 month on with CML taking 400 mg glivec tabs.i have done 4 bone marrow biopsy in one month.and now my right leg is paining very hard.I would really value a few thoughts from anybody who

by Annie Kennedy (Jul 19)

Chris

This may be a red herring but worth investigating - a few years ago (I am 6 years after dx) I had excruciating pain in my foot - it turned out to be sciatica - a slipped disc in my back
Category: Side effects

Replies: 8

Last updated: 25 June 2015
RACHEL HALSALL on 16 July 2009

Category: Uncategorised

Replies: 1

Last updated: 17 July 2009

GRAPE SEED EXTRACT
by sandy craine (Jul 17)

Dear Rachel,

thanks for updating here and for the interesting outcome post Gary adding Grape Seed Extract.

Can you let us know how much of the extract he takes and also which brand. I

by RACHEL HALSALL (Jul 16)

Hi all, I've not posted for ages but thought I'd let you know whats going on with Gary.
5 years ago he was dx and started on Glivec. He reached CCR quite quickly but then lost it. 2 years ago he
Category: Uncategorised

Replies: 1

Last updated: 17 July 2009
chrissbb on 16 July 2009

Category: Uncategorised

Replies: 1

Last updated: 21 July 2009

Support groups for people with CML
by sandy craine (Jul 21)

Dear Chris,

I have now provided a link to the group website on our Links page. Scroll down page to patient groups.
Best wishes,

Sandy

by chrissbb (Jul 16)

As more and more places are setting up support groups for CML I would like to introduce the website for our support group in Leeds. The site is not just for Yorkshire people, it also has general
Category: Uncategorised

Replies: 1

Last updated: 21 July 2009
Pennie on 15 July 2009

Category: Uncategorised

Replies: 6

Last updated: 25 September 2009

Latest PCR 0.006
by shelleycharing (Sep 25)

Hi Pennie.

Hadn't looked at the forum for ages and really pleased to see you're doing so well.

Alan (Quarterman) has been on Dasatinib for over a year and has just had his best result

by skiinglaketahoe (Sep 1)

Hi Pennie
Delighted to hear that Tasigna is working so well for you. I hope that it continues to both work well and agree with you.
best wishes

Susan

by Andy Parkin (Jul 22)

Well done Pennie, really good news. Within a whisker of zero!!Andy

by michael (Jul 18)

Thats great news,thanks for sharing it with us,
Category: Uncategorised

Replies: 6

Last updated: 25 September 2009
Matthew Wilson on 15 July 2009

Category: Uncategorised

Replies: 2

Last updated: 3 August 2009

Hello, an explanation and an appeal.
by Maria137 (Aug 3)

Hi Matt, I hope your sponsored ride went well and you are recovering from your exertions. I have stopped taking Glivec since April 2009 and now take Dasatinib. Regards Maria

by Pennie (Jul 15)

Hi Matt,
Have you looked at the PDF file to the left of the screen on the home page? Headed Treatment We Need. I have recently won my case with the local Primary Care Trust using the advice in the

by Matthew Wilson (Jul 15)

Hi everyone,
My name is Matt Wilson, I am 35 years old, married with a 16 month old son and live in Cambridge, England. I am an Airline Pilot.
In April 2008 I was diagnosed with a very rare form of
Category: Uncategorised

Replies: 2

Last updated: 3 August 2009
Barbs on 15 July 2009

Category: Uncategorised

Replies: 5

Last updated: 17 July 2009

CML earth
by sandy craine (Jul 17)

Hi Barbara and Chris,

CML Earth is not available for UK or Australian citizens to join. This is because that rules set out by the ABPI (Association of British Pharmaceutical Industry) do not

by Barbs (Jul 16)

I went to university at Bradford & used to love the curries & Harry Ramsden's fish & chips, i spent many a sunday at Howarth, & York etc.

by chrissbb (Jul 16)

Thanks for that Barbara, i have just set a support group website up for Yorkshire and surrounding areas, Our site is not a patch on cml earth :) put please feel free to join yourself, it would be

by Barbs (Jul 16)

Hi Chris,

I live in France - so that must be why i could register.

I know that people from patient groupus have been involved in the setting it up for France - maybe you should contact
Category: Uncategorised

Replies: 5

Last updated: 17 July 2009
david barnes on 14 July 2009

Category: Uncategorised

Replies: 4

Last updated: 16 July 2009

nearly 4yrs on glivec and did the man -blackpool bike ride
by david barnes (Jul 16)

this is my email address if you want to contact me davidbarnes65@hotmail.co.uk

by Matthew Wilson (Jul 15)

Nice one!! I am proud for you to be able to achieve a milestone such as that!! Can I sponsor you somewhere? Even though you've done it!!

by sandy craine (Jul 15)

Hello David... 62 miles!! what a fantastic achievement. Well done ;o)

Sandy

by Tufty3 (Jul 14)

Hi David
Great effort-well done!
Chris
Category: Uncategorised

Replies: 4

Last updated: 16 July 2009
Barbs on 12 July 2009

Category: Uncategorised

Replies: 3

Last updated: 13 July 2009

Swine flu
by sandy craine (Jul 13)

Dear Barbara, take a look at the June 12 post under Newswire on the right as it gives guidance on the available vaccines and those groups that might be more at risk (transplant patients/immuno-

by Dennis (Jul 12)

Hi Barbara,

I've been advised to have the Flu jab every year and do so. I was also given the Pneumonia jab about 8 years ago.

The thinking is that it's wise to cover all infections from

by michael (Jul 12)

I had the pneumonia jab with my Flu jab last year no problems

by Barbs (Jul 12)

Has anyone asked their doctor whether we need to get vaccinated against pneumonia?

I saw that half the Uk population and one third of the french are expected to contact it this winter. My
Category: Uncategorised

Replies: 3

Last updated: 13 July 2009
Pennie on 9 July 2009

Category: Uncategorised

Replies: 3

Last updated: 10 July 2009

Thyroid Nodules - al clear
by sandy craine (Jul 10)

Dear Pennie..... good to hear this news. Now you can enjoy the summer ;o)

Sandy

by L0U (Jul 10)

Thats great news Pennie you must be so relieved .

Take Care ~ Louise.

by Ali Loram (Jul 10)

Hi Pennie,
Oh what a relief. I am so pleased for you, we dont need other things to worry about.

Ali

by Pennie (Jul 9)

At long last after two biopsies I have an all clear on the thyroid 'lumps'. This is a huge relief. I have been worried beyond words that this might be another cancer to deal with, and the all
Category: Uncategorised

Replies: 3

Last updated: 10 July 2009
kathy on 7 July 2009

Category: Uncategorised

Replies: 2

Last updated: 7 July 2009

6 years on
by kathy (Jul 7)

Hi barbara im 32,im worse in the mornings to,the sickness is dreadful,it just seems to be getting much worse ,i really dont like complaning as this drug is keeping me alive but having accidents when

by Barbs (Jul 7)

I've got exactly the same problem - it's generally worse in the mornings & I feel quite sick with it; It's terrible when you're in the middle of a supermarket!

If you don't mind me asking

by kathy (Jul 7)

Hi guys ,ive been taking glivec now for 6 years and my results are great mmr.Ive always had the side effects which hasnt really bothered me as these wonderful drugs are keeping me alive but lately
Category: Uncategorised

Replies: 2

Last updated: 7 July 2009