You are here

Forum

sandy craine on 15 February 2007

Category: Uncategorised

Replies: 2

Last updated: 20 February 2007

Sal- Rob's pcr
by sandy craine (Feb 20)

hi sal,

well this is a difficult situation for you.... having to watch/advise as opposed to act/be proactive is hard and i am sure a lot of the 'carers' on this site will understand only too

by sal (Feb 19)

Thanks Sandy,Will have to have another go, unfortunately it is complicated by the fact that I want to be proactive and Rob is happy to let things go on as they are. He's a very laid back sort of

by sandy craine (Feb 15)

"could someone please explain to me where a pcr of 3.7 % is in terms of CCR/MMR."

...................

hi sal,

3.7% is regarded by hh doctors as PH+...

anything below 1.5% is
Category: Uncategorised

Replies: 2

Last updated: 20 February 2007
teresa on 14 February 2007

Category: Uncategorised

Replies: 3

Last updated: 16 February 2007

Donor Matches
by teresa (Feb 16)

Thank you both very much for sharing your experiences, much appreciated

Very Best to you all

Teresa

by Jacky (Feb 14)

I am not myself a CML patient, but my husband Maurice Carter is. We thought it would be good to let you know that he has just undergone a transplant, i.e. 28.09.2006, with an unmatched donor. Our

by kestrel (Feb 14)

Our 13 year old has no sibling donor and the register has come up with a 90% matched potential donor. We were told by our Consultant that success rates for 100% sibling donor transplants are about

by teresa (Feb 14)

Being without a sibling donor I have a few questions I would be grateful for help with- Is a donor always 100% match? If so what is the difference in effect between a stranger and a sibling? Is a
Category: Uncategorised

Replies: 3

Last updated: 16 February 2007
suzanne on 12 February 2007

Category: Uncategorised

Replies: 7

Last updated: 15 February 2007

NICE review of imatinib
by sandy craine (Feb 15)

"I was referred by my doc after initial consultations about my PCR remaining at around 2.5%, to be moved onto Nilotinib. However, I've just found out that I don't qualify because I attained CCR but

by MJS (Feb 15)

Hi Sal,
I'm not as clued up as alot of people on the correct terms but thought I'd give you info based on my experience...
I achieved a PCR of only 2.8% at 12 mths (600mg Gleevec). The only way to

by suzanne (Feb 14)

Thanks Sandy. That is extremely reassuring.
Sue x

by sal (Feb 13)

Hi could someone please explain to me where a pcr of 3.7 % is in terms of CCR/MMR.

This was Robs 18 month result. he went yesterday for bloods taken for his 21 month test. he was told if the
Category: Uncategorised

Replies: 7

Last updated: 15 February 2007
Elizabeth Rees on 11 February 2007

Category: Uncategorised

Replies: 1

Last updated: 14 February 2007

CML Learning Objectives - Drs Druker/Talpaz/Sawyers
by Paul Cooke (Feb 14)

A very interesting read!
I was particularly interested in the comments upon the reported possible links between Glivec and cardiotoxicity.

It appears that the risks associated with Glivec

by Elizabeth Rees (Feb 11)

This conference write up is free to all but you do have to register to have access. A must for everyone who wants to know more about CML and Clinical Options.

Click below - then click on Begin
Category: Uncategorised

Replies: 1

Last updated: 14 February 2007
Steven D on 10 February 2007

Category: Uncategorised

Replies: 4

Last updated: 14 February 2007

Travel Insurance with a bank account.
by Barry Allsop (Feb 14)

Elizabeth
Many thanks for the in formation about Milk Thistle. I will give it a go.
Thanks
Barry

by Elizabeth Rees (Feb 14)

Hi Barry

Have you tried taking Milk Thistle to help your liver metabolise Glivec ? Milk Thistle is a herbal remedy which helps the liver to clean itself. I took it when I had some liver

by Barry Allsop (Feb 13)

Barry Allsop
I have had good treatment from Lloyds TSB with travel insurance. They likewise cover me for world travel on an annual basis with my Gold Account. They wanted to know full details but

by RACHEL HALSALL (Feb 13)

Thanks for the info Steve. We have always accepted that we will not be covered for Gary's CML but have always travelled within Europe, taking an E111 with us. We just decided that IF anything went
Category: Uncategorised

Replies: 4

Last updated: 14 February 2007
Peter Miles on 8 February 2007

Category: Uncategorised

Replies: 1

Last updated: 9 February 2007

UK Transplant Games - Edinburgh July 2007
by sandy craine (Feb 9)

hi peter,

how about sending us some photo's of this event .. with you in them of course ;o)

we can upload them on our photo section.

sandy C ;o)

by Peter Miles (Feb 8)

Hi Everybody

This year's UK Transplant Games take place in Edinburgh at the end of July.

Please visit their website at the following address

http://www.transplantsport.org.uk/
Category: Uncategorised

Replies: 1

Last updated: 9 February 2007
David Morton on 8 February 2007

Category: Uncategorised

Replies: 9

Last updated: 20 February 2007

Day 365 post transplant
by Parmjit (Feb 20)

David
Great news on your first birthday! Hope you celebrated well. Max is awiting news of when he is likely to undergo his immunisations having just returned from a school ski trip. He hasn't

by sandy craine (Feb 9)

hi david..... great news and good reason for you to celebrate this 1 year milestone.

i wish you many more celebrations to come.

love,

sandy C ;o)

by Maurice H Carter (Feb 9)

Congratulations David. I am so pleased everything is going so well. Your diary was so helpful to me during my own transplant and I really enjoyed meeting you at the Royal Free.

by Elizabeth Rees (Feb 9)

Hi David

I'm approaching my two year anniversary and it does feel like such a major achievement, I'd never pictured myself doing so amazingly well after all my problems two years later
Category: Uncategorised

Replies: 9

Last updated: 20 February 2007
Linda Corcoran on 8 February 2007

Category: Getting help

Replies: 3

Last updated: 7 August 2015

Support Groups
by Moirah (Aug 7)

Hi
I am newly diagnosed live in Liverpool please can I ask when and where the support group is?

Xx

by sandy craine (Feb 9)

dear linda, good to see you posting here at last. i am also really glad to hear that you have made contact with other cml patients in liverpool.

it is great to hear that the liverpool group is

by Peter Miles (Feb 8)

Hi Linda

Pleasure to meet you last night. Congratulations on your first posts!

I can certainly endorse what Linda says about support groups either on-line or local. If you are not sure

by Linda Corcoran (Feb 8)

Hello fellow CML'ers Today is the first day I have posted. I was diagnosed last August and am doing well on Glivec (so far so good anyway!)and after a few months of readjustment and despite
Category: Getting help

Replies: 3

Last updated: 7 August 2015
Peter Miles on 7 February 2007

Category: Uncategorised

Replies: 2

Last updated: 8 February 2007

Hi Julie and Linda
by Linda Corcoran (Feb 8)

Hi Peter and Julie

It was very spooky to finally pluck up the courage to post only to find a nice note from you on the forum.

It was great to meet you too (and you Julie!) and I am so

by (Feb 8)

It was lovely to meet you yesterday after all this time. So sorry that I didnt get much chance to speak to you - I had to go and get an ECG done after my appointment and didnt get chance to tell

by Peter Miles (Feb 7)

Hi Julie and Linda

Absolute pleasure to meet you both today in Liverpool. Good luck with your treatment - you are both looking wonderful.

Keep in touch

Peter
Category: Uncategorised

Replies: 2

Last updated: 8 February 2007
David on 7 February 2007

Category: Uncategorised

Replies: 4

Last updated: 8 February 2007

More good news
by skiinglaketahoe (Feb 8)

Delighted to hear your good news.

Hope you managed to get away on your holiday..............somewhere warm and sunny hopefully.

Susan

by Elizabeth Rees (Feb 8)

So happy for you both. Have a wonderful holiday. CML can really be put at the back of your mind now.

Roll on many more PCRU PCRs !

Much love to you both

Elizabeth xxxx

by sandy craine (Feb 8)

dear david and val, many many congratulations for such a great result. i can hear your elation ;o))) wishing you both a wonderful holiday,

love,

sandy C ;o)

by Peter Miles (Feb 7)

Dear David & Val

Wonderful news - have a great holiday!

God Bless!

Peter

Peter Miles

Southport UK
Category: Uncategorised

Replies: 4

Last updated: 8 February 2007
Claire on 7 February 2007

Category: Uncategorised

Replies: 9

Last updated: 8 February 2007

Bone Marrow Transplant
by David Morton (Feb 8)

Hi Claire. I really enjoyed meeting your Dad before Christmas and I am pleased to hear is doing well. Pass on my regards to him.

David

by Elizabeth Rees (Feb 8)

Hi Claire

So happy to hear the good news about your Dad, this will be real encouragement for those contemplating going down this route. Transplant is not an easy option and the going is tough

by Peter Miles (Feb 7)

Hi Claire

Congratulations to your Dad and family - fantastic news.

God Bless

Peter

Peter Miles

Southport UK

by Coyney (Feb 7)

Hi Claire,
Congratulations that's great news, you and your family must be really pleased. Wish him all the best from me.
Take care,

Martyn
Please sponsor me!
Category: Uncategorised

Replies: 9

Last updated: 8 February 2007
sandy craine on 6 February 2007

Category: Uncategorised

Replies: 2

Last updated: 6 February 2007

How Glivec works -animation
by wkeeping (Feb 6)

I agree, it's fascinating. However, was it just me or may be it was the accent, but I half expected to be told that the glivec was "on a mission to seek out strange new life forms and to boldly go

by Peter Miles (Feb 6)

Wow - incredible! I'm a grey boring accountant on the outside - hadn't realised I was so colourful and interesting on the inside!

Peter Miles

Southport UK

by sandy craine (Feb 6)

hi all,

take a look at the 'And then there was Glivec' box on the bottom right of this page and click on the link 'here' to see the animation of how a molecular inibitor drug like Glivec
Category: Uncategorised

Replies: 2

Last updated: 6 February 2007
Elle on 5 February 2007

Category: Uncategorised

Replies: 2

Last updated: 6 February 2007

800mgs!!!!
by sandy craine (Feb 6)

hi elaine, one way of looking at dropping white counts etc. is that it is a sign that glivec is successfully supressing ph+ white cells.

so maybe, as nancy has said, you can remain on the drug

by Nancy C. (Feb 6)

Hi Elaine,
I assume you were increased to 800mg for a reason? In the US (where I am) if you have a problem with low whites or anemia with the higher dose, they give you a cell booster (like Procrit

by Elle (Feb 5)

Hi All
I havent posted for a while but i've been checking up on you all. I've been on 800mgs Glivec now since Oct. Other than side effects and having to split my dose morning and night i've been
Category: Uncategorised

Replies: 2

Last updated: 6 February 2007
kathy on 3 February 2007

Category: Uncategorised

Replies: 1

Last updated: 3 February 2007

my so called normal life.
by zaviemiller (Feb 3)

Erin is an editor at Glamour Magazine. She wrote a column in the magazine while she was undergoing treatment. It was the inspiration for the book.
She has just started a new column, “What I’ve

by kathy (Feb 3)

Hi all,i was given a book by elizabeth called my so called normal life by erin zammett,its about a girl who was dx with cml,its a fantastic book,all my family read it which helped them understand
Category: Uncategorised

Replies: 1

Last updated: 3 February 2007
Diana Green on 31 January 2007

Category: Uncategorised

Replies: 5

Last updated: 5 February 2007

Cost of Glivec
by Bee (Feb 5)

Atta Girl !

Don't try to overload yourself with knowledge just yet. Learn what you need to know at the moment, but don't worry too much about all the ins and outs, and don't get too hooked up

by Diana Green (Feb 1)

Diana G
Hi,Paul - Thank you very much for your very informative reply to my query: I knew Glivec was big bucks, but had no idea quite HOW big.
In future, I shall treat those little ochre-coloured

by Diana Green (Feb 1)

Diana G
Hello, Bee - Thank you for taking the trouble to respond to my question about the cost of Glivec: Wow! Pricey stuff! Thanks also for your bracing words of comfort and encouragement!
I was

by Paul Cooke (Feb 1)

Hi Diana,
The cost of Glivec to the NHS in the UK depends upon whether it is supplied through a hospital pharmacy or through a local community pharmacy (chemist).

The reason being, there are
Category: Uncategorised

Replies: 5

Last updated: 5 February 2007
Bee on 30 January 2007

Category: Uncategorised

Replies: 5

Last updated: 5 February 2007

The Future....
by Bee (Feb 5)

Good for you Keith ! I think that is the way to go nowadays.

Give us a wave as you pass by on your travels!

Keep Smiling !

Bee

by Bee (Feb 5)

Hi Paul
Whilst on holiday, we used the E111 (now the EHIC) and received excellent treatment from the Spanish Health Service. The problems start when you want to actually live abroad. The DoH

by Paul Cooke (Feb 5)

I have found this link to the Dept Health web site, but it does not give any detailed information for the individual countries:
http://www.dh.gov.uk/PolicyAndGuidance/HealthAdviceForTravellers/

by Paul Cooke (Feb 5)

Hi Bee,
Your comments about health care in Europe has set me wondering. I've always understood that ay EU citizen was entitlled to the same level of health care as applied to the citizens of the
Category: Uncategorised

Replies: 5

Last updated: 5 February 2007
Vaidyan on 28 January 2007

Category: Uncategorised

Replies: 2

Last updated: 28 January 2007

Vedic healing for leukemia
by sandy craine (Jan 28)

i am sorry to say i have to ask you to not advertise your business on this site. if you would like to apply for us to put your website on our links page then you are welcome. click on our contact us

by zaviemiller (Jan 28)

Are you a CML patient and did Videc healing bring you into CCR?
I am always searching for new members for the Zero Club. I don't care how they get there.
Zavie
Zavie Miller (age 68)

Ottawa,

by Vaidyan (Jan 28)

I am happy to share with all my readers about the glorious things that happen at this corner of the world, in India.
Whether you are in the initial stages of leukemia wondering what treatment
Category: Uncategorised

Replies: 2

Last updated: 28 January 2007
sandy craine on 27 January 2007

Category: Uncategorised

Replies: 1

Last updated: 27 January 2007

Pat's fundraising plea
by skiinglaketahoe (Jan 27)

I am delighted to help, my husband and kids will all help as well.

I will email Pat
Susan

by sandy craine (Jan 27)

please make sure you take a look at the home page and read pat preston's ideas for fundraising for our group.

as some of you will know, pat has done lots of 'public awareness days' in the
Category: Uncategorised

Replies: 1

Last updated: 27 January 2007
lynn on 23 January 2007

Category: Uncategorised

Replies: 9

Last updated: 2 February 2007

work, diarrhoea and moving out of your original area
by Paul Cooke (Feb 2)

Hi Diane & Janet,
I am aware of at least one hospital which labels Glivec with this warning about avoiding caffeine - that's the hospital where my wife attends.

I do not know why that is,

by Diana Green (Jan 27)

Diana G

Hi, Janet - Thank you for your choccie observation: you have unwittingly shamed me into admitting that I haven't read the sinister small print that accompanies my boxes of Glivec. The

by Janet (Jan 27)

Hi Diana
I just saw that you are taking your glivec with some dark choccie - the instrustions on my carton say specifically not to take with caffeine. I asked why and was told that glivec is hard on

by Diana Green (Jan 26)

Diana G
Not a glamorous subject with which to make my Forum debut, but here goes! I was diagnosed with CML in October and was put on 400mg Glivec a day in December. Problems in the bowel department
Category: Uncategorised

Replies: 9

Last updated: 2 February 2007
sandy craine on 23 January 2007

Category: Uncategorised

Replies: 3

Last updated: 19 February 2007

CML survey
by mariansy (Feb 19)

Received mone to - suppose it's still something for very little - shipping cost from Amazon USA is about $8 so you still have a spare $13 - I just can't decide whether to buy a study book or

by Janet (Feb 13)

I have received mine today as well - I think that the Amazon US site has international shipping, has anyone tried it?

Janet

by skiinglaketahoe (Feb 13)

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=s...
I received my certificate today but unfortunately it can only be used on the US site. I am going to give mine to my

by sandy craine (Jan 23)

you might like to take part in the following survey and earn yourself an amazon gift token.
www.zoomerang.com/recipient/survey.zgi?p=WEB225YWZV8CSS
this link might also be of help.....
http://www.
Category: Uncategorised

Replies: 3

Last updated: 19 February 2007