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andrew on 1 October 2007

Category: Uncategorised

Replies: 3

Last updated: 3 October 2007

PCR results - Andy
by ivanbert (Oct 3)

Hey Andy
Congrats again on being PCRU, a truly fantastic result.
Cheers

Ivan (Perth)

W. Australia

Dx 11/12/2006

PCR 0.036%

by sandy craine (Oct 2)

hi andy,

this is really good news for you.... pcrU is a really good place to be ;o)

best wishes,

sandy C ;o)

by Elizabeth Rees (Oct 1)

Nice to see all these zeros ! Keep it up.

Elizabeth

by andrew (Oct 1)

Hi All
Just saw my specialist (well actually it was his assistant) and I have recorded another PCRU.
I think that this is now 5 from 6. Bloods are within range, liver counts are within range.
Category: Uncategorised

Replies: 3

Last updated: 3 October 2007
Jacky on 28 September 2007

Category: Uncategorised

Replies: 4

Last updated: 2 October 2007

ONE YEAR
by Jacky (Oct 2)

Just to say a great time was had by all on Friday evening. Maurice went back to work - on reduced hours - yesterday, so all is well in the Carter world at this time. One slight correction to my

by kestrel (Oct 1)

Thank you for the good news story! How wonderful for you both and your family. Hope you celebrated well!

Wishing you many more SCT birthdays,

kestrel

by skiinglaketahoe (Sep 28)

Jacky
Delighted to hear such good news.

I have just been for my pre-transplant blood tests; 15 test tubes!

I have finished work today and it is really happening now.
I am beginning to

by Elizabeth Rees (Sep 28)

Hi Jacky

Thank you so much for updating on Maurice. He has done exceptionally well and I hope you have a wonderful 1st birthday celebration this evening.

Prognostics from various
Category: Uncategorised

Replies: 4

Last updated: 2 October 2007
sue on 27 September 2007

Category: Uncategorised

Replies: 5

Last updated: 21 October 2007

holiday abroad
by Paul C (Oct 21)

The European Health Insurance Card (EHIC), as with most things European, does not always do waht it says on the card. The EHIC enititles you to the very basic of health care (normally enough to get

by Paul Cooke (Oct 15)

When we've travelled, even since the restrictions on what you can carry on board, my wife has always taken her medication on board with her.

There is no way we would want to risk losing the

by skiinglaketahoe (Sep 28)

Sue,

Another thought is that you must take your european health card, can't remember the actual number/name of it. In the unlikely event of your being ill (leukaemia or otherwise) they may

by Pennie (Sep 28)

Hello Sue
Wow 7 year CMLer, congratulations.
A holiday with CML and Gleevec is easy, but I would take a letter from your doctor. My GP suggested this as it will cover you going through customs,
Category: Uncategorised

Replies: 5

Last updated: 21 October 2007
Janet on 27 September 2007

Category: Uncategorised

Replies: 5

Last updated: 5 October 2007

CML Seminar - the Saturday evening....
by Janet (Oct 5)

Hi Angela
Thank you for posting - I shall look forward to meeting up. Looks like there will still be quite a few of us in Edinburgh on the Saturday night, which is great.
Regards, Janet

by angela (Oct 1)

Hi Janet
Just to let you know that I'm also staying at Houston House and that I fly back on Sunday morning. So it would be lovely to meet up. I'm arriving on the Friday but I see your not there

by Carol (Sep 28)

Hi Janet,
Great to hear from you so good to hear that you are staying at Houstoun House we are too & also flying up with BMI from Heathrow on the Friday. It looks like there will be a few of us

by Janet (Sep 28)

Hi Carol
Thank you so much for replying to me, it is great to hear that people will still be in Edinburgh on the Saturday, yes it would be super to meet up for a drink/chat etc. We are staying at
Category: Uncategorised

Replies: 5

Last updated: 5 October 2007
Paul Cooke on 27 September 2007

Category: Uncategorised

Replies: 3

Last updated: 29 September 2007

Comparative costs Dasatinib vs Imatinib (Spr ycel /Glivec)
by sandy craine (Sep 29)

some of you may be wondering why there has been a change to the recommended starting dose for chronic stage cml patients. i have copied a snip from a statement below. thanks for this link Rob.
....

by cmlblogger (Sep 28)

about the new recommended dose... although not an official web site
at
http://popmed.info/2007/09/26/emea-approves-new-starting-dose-for-spryce...
rob - http://cmlblog.spaces.live.com

by sandy craine (Sep 28)

Hi Paul, thanks for the costing information. I have just heard from a friend involved in patient advocacy in eastern europe that there is soon to be an official change in the dosing of Sprycel. the

by Paul Cooke (Sep 27)

There is currently a lot of interest in the use of Dasatinib as an alternative to Imatinib due to some people being unable to tolerate Imatinib or who are not responsing well to it.
One factor which
Category: Uncategorised

Replies: 3

Last updated: 29 September 2007
eoghan on 27 September 2007

Category: Uncategorised

Replies: 3

Last updated: 28 September 2007

CML on Irish TV
by sandy craine (Sep 28)

is there any way we can access this broadcast in the UK?

sandy C ;o)

by walshb (Sep 27)

Hi Eoghan
It's good to know a TV star!! Let me know what date it's on when you find out and I'll be sure to watch as I'd be interested in it. Hope things are going well.
Brian (in Cork)

by kestrel (Sep 27)

i'll have to look and see if we can get RTE over here - wouldnt want to miss a good news story!

kestrel

by eoghan (Sep 27)

Hi
Just to let people know that there will be a series of programs on Irish television (RTE 1)called the "The Investigators" on inovation in Ireland. One program focuses on the Irish involment in
Category: Uncategorised

Replies: 3

Last updated: 28 September 2007
clare on 26 September 2007

Category: Uncategorised

Replies: 1

Last updated: 27 September 2007

Clever tests
by sandy craine (Sep 27)

Hi Clare,

without any details it is difficult to say what the zero your doctor is referring to means. however, it does not mean that your cml has gone. unfortunately we are not at the stage

by clare (Sep 26)

Hi

Hope somebody can help!!I have had a letter from my consultant saying the clever tests which he sends to liverpool have come back zero yet again what does this mean? I give more blood every
Category: Uncategorised

Replies: 1

Last updated: 27 September 2007
hoofinruth on 25 September 2007

Category: Uncategorised

Replies: 4

Last updated: 26 September 2007

Advice needed re bone pain please
by Nancy C. (Sep 26)

Dear Ruth,

For some, bone pain as a side effect of Gleevec persists and some patients even need a more heavy duty pain medication for it (one that is compatible with Gleevec).
I personally

by Elizabeth Rees (Sep 26)

PCR is very good Ruth - I have emailed you a few more suggestions.

Elizabeth

by hoofinruth (Sep 26)

Hello Elizabeth
Thank you for your quick response. I shall be speaking to my mother tonight and I will pass on your excellent advice.
Her counts are all OK - her last BCR/ABL was 0.2 - does that

by Elizabeth Rees (Sep 26)

Hi there

Your poor mother certainly has been dealt a raw deal with her many problems and no wonder she finds life frustrating ! Bone pain should not be ignored, it could be due to Glivec but
Category: Uncategorised

Replies: 4

Last updated: 26 September 2007
CHRISTINE MURPHY on 24 September 2007

Category: Uncategorised

Replies: 3

Last updated: 27 September 2007

CML support evening - Edinburgh
by kestrel (Sep 27)

We'll be newbies too, but Im sure they're all very friendly and we're looking forward to meeting folks!

kestrel

by CHRISTINE MURPHY (Sep 25)

Hi Carol

Please reserve us 2 places for the Friday night social. I have managed to arrange for relevant form to be sent so we can book for the Saturday.

Looking forward to meeting other

by Carol (Sep 24)

Hi Christine,
Just read your post about the Pre Seminar Social if you cannot email I can reserve you 2 places for the Friday night social but did you want to book for the Seminar itself on the

by CHRISTINE MURPHY (Sep 24)

Brian is now very keen to go to the CML support evening and we would like to book for both of us. However, thanks to my son, my email is not working at the moment. How can we go about making a
Category: Uncategorised

Replies: 3

Last updated: 27 September 2007
sue on 24 September 2007

Category: Uncategorised

Replies: 2

Last updated: 27 September 2007

live vaccine
by eoghan (Sep 27)

Sue
I was diagnosed with CML in Oct 2004. I also have worked, with CMl, in a live virus manufacturing facility. You are perfectly safe the virus is modified to produce anti-bodies and not give you

by Elizabeth Rees (Sep 24)

Hi Sue

I was advised not to change nappies and come into contact with bodily fluids when my grandaughter had her injections but I was just coming out of transplant and was very

by sue (Sep 24)

Hi to all, silly question really,but my daughter is concerned because my 14 month old grandson is due to have the MMR VACCINE this Friday and she is worried that I may be at risk because it is a
Category: Uncategorised

Replies: 2

Last updated: 27 September 2007
kestrel on 20 September 2007

Category: Uncategorised

Replies: 4

Last updated: 27 September 2007

Ups and downs
by kestrel (Sep 27)

Thank you Jayne! Its just a shock the first time it happens I guess, but it helps to hear about Aaron's experiences. Im feeling a bit calmer now than I was last week and trying to keep things in

by kestrel (Sep 27)

Hi Parmjit,

Its been a year, almost exactly now. The Consultant has mentioned the other drugs but no more than that. I am holding onto the idea that the pcr can bounce a bit! He is having the

by jaynelister (Sep 25)

Kestrel, Just wanted to let you know that Im thinking about you - you must be going out of your mind!
There is no easy way to wait for results, its so tough.
What I will say is that on several

by Parmjit (Sep 23)

Kestrel
I was sorry to learn that Rio's recent PCR tests have indicated an increase. A second test should hopefully confirm whether this is the case or whether it was just a 'fluke' result which can
Category: Uncategorised

Replies: 4

Last updated: 27 September 2007
RACHEL HALSALL on 18 September 2007

Category: Uncategorised

Replies: 6

Last updated: 29 September 2007

DASATANIB
by RACHEL HALSALL (Sep 29)

THANK YOU FOR YOUR EMAIL REGARDING FUNDING FOR DASATANIB. WE ARE NOT DUE TO SEE THE HAEMO. IN BOLTON UNTIL DECEMBER AS GARYS TREATMENT WILL BE OVERSEEN IN MANCHESTER FOR THE NEAR FUTURE. WHEN WE GO

by sandy craine (Sep 27)

if you are experiencing problems in getting access to Dasatinib (Sprycel) please email me directly on sandr1ne@aol.com

i will be able to give you some contact information that will help your

by Carol (Sep 20)

Hi Rachel,
We are both so pleased that Gary has managed to get Dasatinib which hopefully you will see Gary's PCR improving.
You have been in our thoughts very oftern are you back online at home

by David (Sep 20)

Rachel good luck with this.
As Elizabeth says, CML Support can help with an established procedure to support your consultant in trying to get funding if Gary gives permission (patient
Category: Uncategorised

Replies: 6

Last updated: 29 September 2007
kestrel on 17 September 2007

Category: Uncategorised

Replies: 9

Last updated: 22 September 2007

Ph negative
by Belinda Whitting (Sep 22)

thats lovely news 4 u and your family.

by kestrel (Sep 19)

Just to say thanks to you all for the messages - it makes so much difference to know you are all out there!

Love,kestrel xxxx

by sandy craine (Sep 18)

just to add another wonderful. this is such great news. give my best wishes to Rio,

sandy C ;o)

by jaynelister (Sep 18)

Hi Kestrel, Thats brilliant news.
Love to you and Rio.
Jayne xxx
Category: Uncategorised

Replies: 9

Last updated: 22 September 2007
Carol on 13 September 2007

Category: Uncategorised

Replies: 1

Last updated: 14 September 2007

Accommodation For The CML Seminar In Edinburgh
by Elizabeth Rees (Sep 14)

Hi everyone

Flybe from Manchester and Newcastle have very good fares to Edinburgh.

If you are still looking for accommodation please get in touch with Carol who has obtained some good

by Carol (Sep 13)

We hope that many of you will be coming to the annual seminar in Edinburgh in Novemeber.
For those of you who are coming up on the Friday as I am sure many of you are for the Seminar & also THE
Category: Uncategorised

Replies: 1

Last updated: 14 September 2007
michael on 12 September 2007

Category: Uncategorised

Replies: 6

Last updated: 14 September 2007

GCSF
by michael (Sep 14)

Thanks Russ,

Iam treated at Darent valley hospital,Dartford,And your right I should jump my fences when I get to them.

Best regards Michael

by michael (Sep 14)

Thanks Sandy thats a good idea,my notes I have been told are reviewed on a regular basis from someone at guys.

Best regards Michael

by sandy craine (Sep 13)

hi michael, it must be a little lonely being the only CML patient treated at your clinic. there are many members here who find that a referral to a larger CML specialist centre such as Kings or Guy

by michael (Sep 13)

Hi thats great news,I am treated at the chemo clinic, Darent valley hospital (Dartford)Ands its a little like little britain being that Iam the only CMLer in the clinic,I some times feel such a
Category: Uncategorised

Replies: 6

Last updated: 14 September 2007
david barnes on 12 September 2007

Category: Uncategorised

Replies: 3

Last updated: 17 September 2007

Glivec 800mg
by Paul Cooke (Sep 17)

Hi David

I suggest that you confirm with your Doctor at your next appointment why you are on Glivec 800mg a day.

Do you know what your last pcr test results are? - whilst most people

by david barnes (Sep 13)

Hi Paul I was diagnosed in Oct 2005.I started taking 400mg at first then it went up to 600mg but this had an effect on my blood count ,which was being checked every two weeks at christies .They put

by Paul Cooke (Sep 13)

Hi David,
You don't say how you came to be taking this dose, or for how long.

Most people are started on 400mg. sometimes progressing to 600mg if insufficient response, and occasionally to

by david barnes (Sep 12)

Hi i take 800mg of glivec and i would like to know if this is the maximum amount you can take , as most people seem to take 400 or 600mg

thanks David
Category: Uncategorised

Replies: 3

Last updated: 17 September 2007
Elizabeth Rees on 12 September 2007

Category: Uncategorised

Replies: 2

Last updated: 14 September 2007

6th Annual CML Seminar - Edinburgh
by Elizabeth Rees (Sep 14)

Hi Angela

OK try this - elizabethm.rees@btinternet.com

or erees@hotmail.com or info@cmlsupport.org.uk

I have not been having any problems with the hotmail account and am puzzled

by angela (Sep 13)

Hi Elizabeth
I've tried emailing you to let you know that I will be attending the Friday evening buffet but your email address shown above keeps coming back address unknown.
Many thanks
Angela

by Elizabeth Rees (Sep 12)

Hello everyone

I have just been informed that a larger venue has been booked for the above seminar in order to accommodate everyone. This room has 400 places so now everyone can come and enjoy
Category: Uncategorised

Replies: 2

Last updated: 14 September 2007
Pennie on 12 September 2007

Category: Uncategorised

Replies: 5

Last updated: 30 September 2007

0.0000 PCR
by ypoulton (Sep 30)

Great news Penny Im so glad for you.

Yvonne

by jaynelister (Sep 18)

Hi Pennie, Just wanted to say what great news it is that your pcr level is 0.0000!!!
Hope the supplements help with the tiredness.
Much love
Jayne xx

by Carol (Sep 13)

Congratulations Pennie,
You really deserve to have all those zero's!! after your bouncy year with PCR's both Steven & I are so happy for you.
Your post is so positive about life with CML &

by sandy craine (Sep 13)

dear Pennie, this is truly wonderful news. i know you are trying to work out why and how this has happended after a very bouncey trend in your pcr's.. hopefully this will be the new trend for the
Category: Uncategorised

Replies: 5

Last updated: 30 September 2007
Lin on 10 September 2007

Category: Uncategorised

Replies: 1

Last updated: 10 September 2007

More on Tiredness
by hcy0da (Sep 10)

Hi Lin
I have now been back at work for 5 weeks but mostly work from home; even so I have only once managed a full week. I am beginning to develop a routine that I can cope with but tend to be a

by Lin (Sep 10)

Dear All
I read with interest the many comments in response to helen's query about CML and working. I wondered if anyone had some info or advice I could use.

I was dx June 06 but we think I
Category: Uncategorised

Replies: 1

Last updated: 10 September 2007
skiinglaketahoe on 9 September 2007

Category: Uncategorised

Replies: 8

Last updated: 6 November 2007

Caringbridge site
by kestrel (Nov 6)

Well done Susan - what great news - keep it up!!

All good wishes,

kestrel

by skiinglaketahoe (Nov 2)

Hi Day +8 and I am home!!

Feeling very good and no problems............so far so they sent me home!
Susan

by skiinglaketahoe (Oct 25)

Just to say that I received the stem cells this afternoon - now we sit and wait.
Feeling ok so far, had a couple of rough days with the chemo.
Susan

by skiinglaketahoe (Oct 16)

A LIVE UPDATE.........
Sitting in my room, fab view over the City of London, unpacked, they had to go get me a fan it was so hot in the room. They also bought me a fridge. I am now waiting to see
Category: Uncategorised

Replies: 8

Last updated: 6 November 2007