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carmeplas on 9 October 2007

Category: Uncategorised

Replies: 1

Last updated: 9 October 2007

Gleevec side effect- stomach pain
by Pennie (Oct 9)

Hi

Has he changed his diet recently? Sometimes this can trigger stomach problems.
If possible keep to a gentle food regime for a while, I have cut out acids like vinegar, citrus etc in the

by carmeplas (Oct 9)

Hi all,
my husband is having terrible stomach pain after taking gleevec.

He was dx at June, and until now he has been more or less tolerating Gleevec, but the last two weeks the pain in the
Category: Uncategorised

Replies: 1

Last updated: 9 October 2007
Steven D on 3 October 2007

Category: Uncategorised

Replies: 2

Last updated: 15 October 2007

Hammersmith Hospital and a change in dispensing Glivec
by fehr (Oct 15)

From the start, 6 months ago, my local hospital has been sending my Glivec prescriptions to the local Boots, for the reason of saving VAT. No problems, the pills are there within a day or so and

by Paul Cooke (Oct 10)

Hi,
I think that cml patients receiving Glivec are going to find a gradual change to the way in which they obtain their supply of medication (if they havn't already).

This is primarily down to

by Steven D (Oct 3)

Hi
I went to HH today and got a prescription for Glivec. I was told that the method of dispensing the drug was/has been changed and if I agreed my tablets would be sent directly to me by a home
Category: Uncategorised

Replies: 2

Last updated: 15 October 2007
CHRISTINE MURPHY on 3 October 2007

Category: Uncategorised

Replies: 3

Last updated: 3 October 2007

dasatinib
by CHRISTINE MURPHY (Oct 3)

Thank you Sandy and Elizabeth. Neither his onc, skin specialist or gp were happy for him to have steroids, he had to have a course again last week, and the steroids instantly improve matters, but

by Elizabeth Rees (Oct 3)

Hi Christine

We have spoken about this before. I sort of remember there is a reason for Brian not having steroids ? I was restarted on a low dose of Glivec combined with steroids and

by sandy craine (Oct 3)

hi christine,

i do know that a rash is common but have only heard of one that sounds as bad as brian's..... in fact elizabeth was hospitalised with her rash as it was so awful (this was a few

by CHRISTINE MURPHY (Oct 3)

Hi

Brian was diagnosed cml in Feb 2007 and been on glivec, everything is going ok except he has had a horrendous rash to deal with that is red, sore and itchy all over, plus his eyes being
Category: Uncategorised

Replies: 3

Last updated: 3 October 2007
leslie chambers on 7 October 2007

Category: Uncategorised

Replies: 3

Last updated: 9 October 2007

spleen removal.
by leslie chambers (Oct 9)

Hi Sandy,

I have been on Glivec since 2000, but came off in March,as blood levels keep dropping and spleen still growing,up from 18cm 30/3/07 to24cm on 9/8/07 and getting very painfull.When I

by sandy craine (Oct 9)

hi les,

yes i had my sleen removed but that was before Glivec was available and it was extremely enlarged at 24cms. i was also told that i had myelofibrosis but that this condition was

by Elizabeth Rees (Oct 8)

Hi Les

Sandy had her spleen removed after dx with CML. She will no doubt tell you of her experiences. Ian Portsmouth also had his spleen removed and I will ask him to get in touch. He is an

by leslie chambers (Oct 7)

Has anyone out there had an enlarged spleen removed,(24 cm).I would like to know of any problems they encountered, and recovery time afterwards, also has anyone firsthand experience of Myelofibrosis
Category: Uncategorised

Replies: 3

Last updated: 9 October 2007
matthew.hulbert on 3 October 2007

Category: Uncategorised

Replies: 2

Last updated: 3 October 2007

Disability Discrimination Act
by Steven D (Oct 3)

Hi Matthew.
David is right take legal advice.
I went through exactly the same in June 2006. You might have legal protection cover under one of your insurances. This might be under home contents for

by David (Oct 3)

Matthew
Sorry to hear of your concern. Maybe it won't come to you losing your job.
You can find some general advice on the government web site about the DDA in employment by clicking here:

by matthew.hulbert (Oct 3)

Does anyone know where I can get some advice. I am 47 and have had CML for 3 years and have been told it is one of the diseases covered under the Disability Discrimination Act. The company I am
Category: Uncategorised

Replies: 2

Last updated: 3 October 2007
CHRISTINE MURPHY on 1 October 2007

Category: Uncategorised

Replies: 3

Last updated: 2 October 2007

cml seminar in edinburgh note for carol
by CHRISTINE MURPHY (Oct 2)

Hi Carol

I have sent an email and I think it has gone through - great.
Thanks

Christine

by Carol (Oct 1)

Hi Christine,
Have just sent you an email to your email address. Lets hope you get it!! let me know then we can sort out your places for the Friday evening Social & we can sort the Saturday

by CHRISTINE MURPHY (Oct 1)

Hi Carol

my typing could be better! email is christinemurphy56@btinternet.com Thanks

by CHRISTINE MURPHY (Oct 1)

Hi carol

My computer is up the creek. Had an expert in today - but still email is not right. Although my email should now be christinemurphy56@btingternet.com - please try. I thought I had
Category: Uncategorised

Replies: 3

Last updated: 2 October 2007
cmlblogger on 1 October 2007

Category: Uncategorised

Replies: 1

Last updated: 1 October 2007

No reason to NOT join the gym?
by david barnes (Oct 1)

I have been taking glivec for two years and i go kickboxing twice a week .You may find it hard at first but if you used to be fit before i am sure will soon get back into it .All i can say is if you

by cmlblogger (Oct 1)

So a number of things...
1. I still suffer from the general fatigue in the evenings and weekends

2. Light exercise hits me hard later in the day (light as in playing 15 minutes in th egarned
Category: Uncategorised

Replies: 1

Last updated: 1 October 2007
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