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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
Ali Loram on 6 July 2009

Category: Uncategorised

Replies: 2

Last updated: 9 July 2009

Tasigna & anti-biotics
by Ali Loram (Jul 9)

Thank you Sandy for your reply, so far the hospital have drawn a complete blank for anti biotics whilst on Tasigna. I have been prescribed doxcycyclin (if i were to need it) but would have to come

by sandy craine (Jul 8)

Dear Ali,
If you go to the Tasigna website you can get some informations about possible drug interactions. However, as with all the TKI's it is not a full list. I am not sure at all about the anti-

by Ali Loram (Jul 6)

Hi all,
Off on holiday soon & think its a good idea to take some anti-biotic cover, just in case & hope it wont be needed.I spoke to the pharmacy at the hospital before I ask my GP for a
Category: Uncategorised

Replies: 2

Last updated: 9 July 2009
Alastair C on 2 July 2009

Category: Uncategorised

Replies: 5

Last updated: 13 September 2009

PCRU!!
by Alastair C (Sep 13)

Bram, I'm being treated at Unive Hosp North Durham. Dr Keenan is my consultant, and is great -in many ways I am a difficult patient for doctors as 1) I am the only non-medical memeber of a medical

by sandy craine (Jul 7)

Congratulations to you too Bram..... ;o)
Sandy

by Bram (Jul 6)

Pleased to hear your news Alistair. Im not far away from you in Darlington and my last PCR came back as 0.00 which is also a first for me after a tad longer than you, 28 months.

I hope its

by Des (Jul 5)

There are no words that can describe the feelings when you first get a PCRU.Even passing your driving test fails into insignificance!!!

Well done Alistair, wonderful news.
Category: Uncategorised

Replies: 5

Last updated: 13 September 2009
cassidy62 on 1 July 2009

Category: Uncategorised

Replies: 7

Last updated: 19 August 2009

Baby Girl
by Martha Stuart-Berrisford (Aug 19)

I am so happy for you as we are awating the birth of our child in ten weeks time too!

by Andy Parkin (Aug 12)

Many many congratulations and best wishes to your whole family. Hope all goes well on the return onto Glivec

Andy

by Nansubuga (Aug 10)

i get encouraged by such news; just praying that God does the same for me

by kathy (Jul 2)

congratulations to you all,fantastic news.xxx
Category: Uncategorised

Replies: 7

Last updated: 19 August 2009
garym161 on 30 June 2009

Category: Uncategorised

Replies: 2

Last updated: 3 July 2009

Casino Night in aid of Leukaemia Research
by sandy craine (Jul 3)

Dear Gary,

I wonder if you could 'advertise' the Signature Campaign: call to action against rare cancers

(see direct link to the website on the left of this page) during your fundraising

by sandy craine (Jul 1)

Dear Gary,
I remember you advertised your event here last year but I missed your update.... Leukaemia Research are a worthy cause and lucky to have you as a volunteer as you are obviously a very

by garym161 (Jun 30)

Hi all,
Following on from the success of the sportsmans dinner I arranged last year where we raised over £7000 I have arranged a James Bond theamed Casino Night @ the Marriott Hotel Preston on Fri
Category: Uncategorised

Replies: 2

Last updated: 3 July 2009
sue on 30 June 2009

Category: Uncategorised

Replies: 3

Last updated: 11 February 2010

yorkshire region cml support meeting
by DPJ (Feb 11)

Can you give me directions to meeting at St. james hospital for Monday meeting. I am in Notts. + want to know what's happening with drugs for cml. Thank you

by sue (Jul 1)

susan dickerson

Hi Sandy, I shouldn't think that there are any restricted places at this meeting. The main reason for setting up a support group in this area, is that there are a number of

by sandy craine (Jul 1)

Dear Sue,

I am not sure if your post means that those that live near by but outside the boundry of Yorkshire... i.e Lancashire or Derbyshire... cannot attend this meeting...... are the number

by sue (Jun 30)

Hi to all, just a reminder that the first ever yorkshire region cml support meeting is next monday evening at st james hospital leeds. Dr Gramme Smith is opening the meeting it would be great if
Category: Uncategorised

Replies: 3

Last updated: 11 February 2010
Des on 29 June 2009

Category: Uncategorised

Replies: 3

Last updated: 1 July 2009

Still PCR Undetectable
by patricia dever (Jul 1)

Des well done on your negative result, im so delighted for you. Like you I've a tan for the first summer since starting Glivec I cant believe the difference in my skin colour, the white circles

by SwanValleySue (Jul 1)

Des
Thanks for sharing your info and it is so educational for all of us.
I did not realise that rosy cheeks meant lack of pigmentation

- my skin has becoming quite pale with rosy cheeks
My

by danielchee (Jun 30)

Hi Des,

Great news and do hope to see the PCRU's coming.

You have a lot of CMLers behind you. Do keep

the forum posted.

take care.

daniel

by Des (Jun 29)

Just returned from my monthly appointment with HH. Still undetectable since March. Like Patricia and Basil, I am a little disappointed that the weight gain does not come off as easy as it went on.
Category: Uncategorised

Replies: 3

Last updated: 1 July 2009
sandy craine on 29 June 2009

Category: Uncategorised

Replies: 3

Last updated: 30 June 2009

Rare cancers – more common than most people think
by karen (Jun 30)

Sadly I feel quite excited by that - as you say if you are going to get one get a 'good' one!!!

Kx

by Pennie (Jun 29)

Oh yes Karena, we have a rare cancer. As I always say if we are to have one of the dreaded things it might as well be a special one !! 1:100,000 chance of getting it I think is the statistic for

by karen (Jun 29)

I have just been on line and signed. Excuse my ignorance but does CML fall into that category?

by sandy craine (Jun 29)

Rare cancers – more common than most people think
Nearly half a million Europeans live with a rare cancer. Despite the rarity of each individual cancer type, rare cancers represent in total about 20
Category: Uncategorised

Replies: 3

Last updated: 30 June 2009
David on 26 June 2009

Category: Uncategorised

Replies: 1

Last updated: 26 June 2009

Fundraising for Leukaemia Research
by L0U (Jun 26)

My husband done this last year & is also taking part this year along with my 12yr old son,my brother & my 14yr old niece.

It really is a great event as well as raising lots of money

by David (Jun 26)

My son, Ed, is riding in the Leukaemia Research London Bikeathon on Sunday, 19th July. If any of you have a spare fiver or so in these difficult times, it would be great if you could sponsor him at
Category: Uncategorised

Replies: 1

Last updated: 26 June 2009