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sandy craine on 14 August 2009

Category: Uncategorised

Replies: 4

Last updated: 15 October 2009

CML Patient Seminar 2009-
by Apryl (Oct 15)

Hi Sandy
Are you planning on having the usual patient get to gether this year, cant see any details of it on the site. Can you let me know if you are, if we have to register for it and how much it

by sandy craine (Sep 8)

Hi Janet,
Sorry but I am not aware of the doctors that are due to speak at the Seminar in Nottingham. I have not been involved in the organisation of the day and was only provided with the details

by Steven D (Aug 24)

Hi.
It seems the phone number for the Crowne Plaza has recently changed to

0871 9429161
Steven

by Janet (Aug 24)

Dear Sandy and Steven
This looks a very interesting programme. Thank you for your input in organising the day.
Do we know yet which doctors are speaking?
Regards, Janet
Category: Uncategorised

Replies: 4

Last updated: 15 October 2009
jjhollis100 on 12 August 2009

Category: Uncategorised

Replies: 9

Last updated: 20 August 2009

Talk of a BMT
by Andy Parkin (Aug 20)

If it is any help trying to get your consultant to try the plasma level testing then the following may help.

I was diagnosed Spring 07 with CML and on 400mgs Imatinib from april '07. By 6

by jjhollis100 (Aug 18)

Thanks for all the information.
yes i am in CCR and my PCR's for the last couple of years are always around 2%.
I shall go back to hospital in 5 weeks armed with this new info and advice and see

by zaviemiller (Aug 17)

Hi,
I am puzzled at your doctor's comment that you should start thinking about a transplant.
He is the doctor and he should be looking at all the alternatives for you. What about the many drugs

by michael (Aug 14)

Nilotnib was discounted for me because I am Diabetic,without a full history its hard to decide treatment options,but dont let it put you off asking why your options are limited.

Mike
Category: Uncategorised

Replies: 9

Last updated: 20 August 2009
Ali Loram on 12 August 2009

Category: Uncategorised

Replies: 2

Last updated: 12 August 2009

LFT'S & drug interaction.
by Ali Loram (Aug 12)

slip of the fingers there, ofcourse I am taking nilotinib!

My Dr was ok with me taking both drugs together. Had he advised me to stop taking nilotinib then of couse I would have followed his

by sandy craine (Aug 12)

Dear Ali,
Your can get all the answers to these questions if you go to FAQ's/Glossary then scroll down to
What should my liver counts be?

# Total Protein

# Albumin

# ALT (SGPT)

by Ali Loram (Aug 12)

Hi, I had an infection in my leg that required anti-biotics but there has been a drug interaction that affected my liver. I am currently on imatinib. The hospital should have taken me off imatinib
Category: Uncategorised

Replies: 2

Last updated: 12 August 2009
tadlaw on 10 August 2009

Category: Uncategorised

Replies: 4

Last updated: 13 August 2009

US Health Care Reform - Need Single Payer System Advice
by sandy craine (Aug 13)

Hi Tracey,

It might help if you take a look at the following site:
healthcarereformmyths.org
as this one seems to be a little less partisan than some of the others I have read. But maybe

by Andy Parkin (Aug 12)

There was a report on the news in UK this am about President O talking at meeting yesterday while outside demonstrations taking place from some Republicans about likely costs of this reform to US

by tadlaw (Aug 11)

Thanks Michael. Actually, I haven't seen it (though I'm a Michael Moore fan.) I'll rent it. Thanks again.
Tracey

by michael (Aug 11)

Have you seen Michael Moores film Sicko? the Uk footage rings true for me.
Category: Uncategorised

Replies: 4

Last updated: 13 August 2009
Comkick1 on 7 August 2009

Category: Uncategorised

Replies: 6

Last updated: 11 August 2009

2 Log Increase
by cmlblogger (Aug 11)

thanks for the explanation :)
rob - http://cmlblog.spaces.live.com

by sandy craine (Aug 10)

Hi Rob,

I suppose that the figure given by Mark as his baseline PCR is a ratio... so that might confuse those of us that have baseline cytogenetics results given as a percentage.. thus 100% 70

by cmlblogger (Aug 10)

sorry to diverge from your topic of concern
but can anyone explain how you can have a pcr of over 100%?
I thought the PCR was a ratio of leukeamiac cells to toal cells
rob slightly confused by your

by sandy craine (Aug 7)

Hi Mark,

I think you should ring the hospital and ask to speak with your doctor or his secretary so that you can explain how worried you are given the leap in ratio % and that 3 weeks is a
Category: Uncategorised

Replies: 6

Last updated: 11 August 2009
tadlaw on 4 August 2009

Category: Uncategorised

Replies: 2

Last updated: 15 August 2009

Worried about results - Am I over stressing?
by sandy craine (Aug 15)

dear Tracey,
Please see my recent post which gives a link to an article about mutations and TKI therapy.

There is a PDF of the full article and I have made a couple of slides with the Traffic

by Andy Parkin (Aug 5)

Tracey, I can only reflect on my own range of PCR results, which started to trend upwards from a low of 0.139% over 6 months to 0.431%. A plasma level test at this point revealed low levels of drug

by tadlaw (Aug 4)

Hi all,
My 11 y/o son, Ben has cml and was performing phenomenally well on Glivec on 400/500 mg alternating doses. But his numbers started trending from down to upward: .65; .21; .076; .81 (July 1
Category: Uncategorised

Replies: 2

Last updated: 15 August 2009
sandy craine on 4 August 2009

Category: Uncategorised

Replies: 2

Last updated: 12 August 2009

Pneumonia vaccine may help limit swine flu deaths
by karen (Aug 12)

Just had mine as well - it hurt!!! Two days later and I still have a swollen arm - just wanted to winge and get soem sympathy!!! Better that though than bad Swine Flu!!!
Karen

by Ali Loram (Aug 12)

yesterday when I saw my consultant at the hospital, I asked about the Pneumovax vaccine & the consultant thought it a very good idea. So many thanks for the info Sandy, I had the jab done this

by sandy craine (Aug 4)

I was advised by my consultant at HH to have the Pneumovax vaccine in order to protect from a deadly form of bacterial pneumonia. So last week I went ahead had the vaccination at my local surgery.
Category: Uncategorised

Replies: 2

Last updated: 12 August 2009
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