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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
RachaelB on 26 June 2009

Category: Uncategorised

Replies: 10

Last updated: 16 July 2009

Good news - Glivec seems to be working
by hcy0da (Jul 16)

Hi Rachael
As Sandy says Addenbrooke's is the place you would probably get transferred to from Bedford; it is where I went when I needed more specialist help. Dr Huntley is a CML specialist who also

by michael (Jul 5)

Please do keep us informed about your CML journey,Yes very lucky to to be at Kings,Leukaemia research(they have about 20m to spend per year) currently invest£800,000 in scientific research in

by RachaelB (Jul 5)

Thanks Michael. Your recent post has certainly convinced me that I need to discuss this with my current consultant. Kings sounds like it has great facilities - you are very lucky. Will keep you

by michael (Jul 4)

At Kings you have

1 Cml patient/carer surport group

2 specialist CML nurses

3 phamacy that dispences cml specialist drugs

4 has a specialist lab that tests for BCR-ABL,
Category: Uncategorised

Replies: 10

Last updated: 16 July 2009
Pennie on 21 June 2009

Category: Uncategorised

Replies: 1

Last updated: 3 July 2009

INFa and multi dose pen.
by sandy craine (Jul 3)

Dear Pennie...... how are you managing with the Ifn pen? Sorry I had no advise as I have never used one of those but I hope you overcame your initial fears and now finding it easier.
Sandy

by Pennie (Jun 21)

Hi

is anyone using the Inf multi dose system to self inject? I am starting tonight and the instructions are daunting. Been through it with the clinic but feeling a bit wobbly about starting
Category: Uncategorised

Replies: 1

Last updated: 3 July 2009
patrice on 21 June 2009

Category: Uncategorised

Replies: 9

Last updated: 4 September 2009

Newly dx and pregnancy
by Martha Stuart-Berrisford (Sep 4)

Hi everyone, I've been trying to post my progress on here for a while. I was diagnosed with CML in Nov 07 after a year on Glivec and on only 200 mg a day I did not respond to it. Stopped taking

by Nansubuga (Sep 2)

That is what i want to hear too.... attimes my heart disagrees with the results. I am in germany and was dx with CML at 25yrs (this year). That was not good news though but hopefully, there will be

by cassidy62 (Jun 22)

Hi Patrice, i live in the uk and i was in complete cytogenetic response when i fell pregnant not far off negative. I had been on glivec for 12 mths with no major side affects and durng pregnancy i

by kathy (Jun 22)

Hi again,yes i have a son ,i was dx just after he was born,they did think i had the cml during pregnancy,email me if you want and feel free to ask anything,kathy.prudence@homecall.co.uk

it
Category: Uncategorised

Replies: 9

Last updated: 4 September 2009
diwasholla on 18 June 2009

Category: Uncategorised

Replies: 3

Last updated: 24 June 2009

Consumtion of Glivec ,It's good and bad effects and the ways to lower the bad effects................. please Help.
by lynnsch (Jun 24)

Hi Diwas,
I have only recently been diagnosed so am pretty new at this but I also have water retention and I fully agree with John that keeping your body fully hydrated is the best way to help. My

by johnh (Jun 24)

I sometimes wake up with swollen or puffy eyes and it is always because I have not been drinking enough liquids (or too much of the wrong liquid LOL).
As soon as I increase my water intake I return

by Francis (Jun 21)

The only thing I've found useful is a drug called "Lasix:"Flourisomide". The side effects from that are those of a fairly high-powered water pill "diuretic". This has its own problems. For me its

by diwasholla (Jun 18)

Hi everyone, My name is Diwas and i am from Germany. Last year my mom was very sick and had to be admitted in Hospital in Nepal. My parents Live in Nepal. Doctors in Hospital told that she has high
Category: Uncategorised

Replies: 3

Last updated: 24 June 2009
Douglas G on 18 June 2009

Category: Uncategorised

Replies: 3

Last updated: 20 June 2009

Diagnosed late Jan 09
by Janet (Jun 20)

Yes, I'm foggy!! I agree with Annie, it hasn't got any worse over the 3 years I've had CML. For me, it has meant that a lot of little things just disappear completely under the radar - tricky at

by Annie Kennedy (Jun 19)

Doug

I was diagnosed 5 years ago age 40 (400mg Glivec ever since) and became aware fairly quickly that my short term memory was playing tricks on me - could not remember simple things like

by technician69 (Jun 19)

Hi Doug, my daugher (17) is on 500mg Glivec per day, she has found her concentration levels are very low, also she is very forgetful. I think this could be to Glivec as she was very alert before

by Douglas G (Jun 18)

Hi everybody

My name is Doug and I was diagnosed in January. I'm 58 years old and self employed and have no insurance. Any input on getting insurance with preexisting would be welcome.

I
Category: Uncategorised

Replies: 3

Last updated: 20 June 2009
Ali Loram on 18 June 2009

Category: Uncategorised

Replies: 2

Last updated: 24 June 2009

4.8 log reduction on Nilotinib
by sandy craine (Jun 24)

Dear Ali,

just seen your note about your fantastic response. What a great result given that you were so fearful that you would not be able to continue taking Tasigna due to the initial skin

by zaviemiller (Jun 19)

This is an outstanding result. Most labs' PCR equipment is not sensitive enough to report PCR values greater than 4.0. Consider your result as being the elusive PCRU.
Well done,
Zavie

by Ali Loram (Jun 18)

Just come back from Hospital today & would like to share some good news with you. My BCR ABL results were back, a suprise as the bone marrow biopsy was only taken 2 weeks ago. I have acheived a
Category: Uncategorised

Replies: 2

Last updated: 24 June 2009
RachaelB on 18 June 2009

Category: Uncategorised

Replies: 9

Last updated: 19 June 2009

Hello I'm new...
by hcy0da (Jun 19)

Hi Rachael
I will definately get in touch when I am home but in the mean time please feel free to email and say hi my address is hcy0da@googlemail.com
Best wishes
Helen

by RachaelB (Jun 19)

Hi Helen
Thank you for your reply.
It would be great to chat when you are back home recovering. I hope it all goes well at Addenbrooke's - please keep in touch
Take care and best wishes x

by hcy0da (Jun 19)

Hi Rachael
Just wanted to say hi and let you know there are a couple of us on this site that are from Bedford. I was dx back in 2007 and have found a very good friend also from Beford via this site

by chrissbb (Jun 18)

Hiya, i dont want to repeat what everyone has already posted, but this site is the best around for genuine no bull support, Sandy is the lady to ask if you have any main medical Questions.

It
Category: Uncategorised

Replies: 9

Last updated: 19 June 2009