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Diana Green on 30 July 2007

Category: Uncategorised

Replies: 1

Last updated: 31 July 2007

Bad taste...
by zaviemiller (Jul 31)

Y A H O O O ! ! ! Y I P P E E E ! ! !
Number 1083 in the Zero Club
Zavie
Please email me with your email address. Thanks, Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF

by Diana Green (Jul 30)

For a few days I've had an unpleasant metallic/bitter taste in my mouth. After eight months on Glivec, I thought I'd probably come across most of the side effects I was going to encounter: but this
Category: Uncategorised

Replies: 1

Last updated: 31 July 2007
Steven D on 29 July 2007

Category: Uncategorised

Replies: 6

Last updated: 5 August 2007

Celebrating my 50th.
by RACHEL HALSALL (Aug 5)

HAPPY BIRTHDAY STEVEN!
WE TOO WERE NOT GIVEN THE FULL FACTS AT DX AND THOUGHT GARY HAD ABOUT 4-5 YRS. TOMORROW WE'RE OFF TO MANCHESTER TO MEET GUY LUCAS AND PROBABLY GO ON NILOTANIB INSTEAD AS THE

by Parmjit (Aug 3)

Steve
Wishing you belated birthday wishes for your 50th. What a really upbeat posting. Hope Rhodes wasn't too hot for you and Carole.
As always best wishes

Parmjit & Maxie

by Steven D (Jul 31)

Thank you all for your good wishes.
I look forward to celebrating my 75th in due course. All will be invited.
Steven D

by Elizabeth Rees (Jul 31)

I echo what has been said above and wish you many many more happy years. Can't wait to celebrate the 75th !! Gives us some time to think where to go !!!

E xxxx
Category: Uncategorised

Replies: 6

Last updated: 5 August 2007
clare on 25 July 2007

Category: Uncategorised

Replies: 14

Last updated: 2 August 2007

over 4 years
by (Aug 2)

Hi Clare
Its a small world isnt it!!!
I lived in Nant Parc for 4 years.
My Brother actually lived in Brandy Brook as well!
You take care and try not to worry about anything - the people on this

by clare (Aug 1)

How mad
I used to live in johnstown in brandy brrok for 3 years and also lived in penycae for 10 years now living in pentrebroughton

by philcowtan (Aug 1)

Dear Clare,
It is a shame that stories like this are told to patients. I was diagnosed almost 14 years ago and the progress in medecine has been enormous. I started Gliven almost 7 years ago on

by (Aug 1)

Hi Clare
I was born in Ruabon but lived in Johnstown before I moved over to the Isle of Man.
I go to the Royal Hospital in Liverpool for my check ups every 3 months and I usually stay near Rhos with
Category: Uncategorised

Replies: 14

Last updated: 2 August 2007
Elizabeth Rees on 24 July 2007

Category: Uncategorised

Replies: 1

Last updated: 25 July 2007

Pancreatitus and Nilotinib - Skip
by skipd (Jul 25)

Thanks Elizabeth, I have been in contact with two others with

this problem. We all have continued with Nilotinib after a couple weeks but at a reduced dose. I think the higher doses

at

by Elizabeth Rees (Jul 24)

I have enquired about the incidence of the above with Novartis and here is their answer:

...........Pancreatitis has been reported with Nilotinib in the clinical trials to date in both the
Category: Uncategorised

Replies: 1

Last updated: 25 July 2007
kazza62blue on 23 July 2007

Category: Uncategorised

Replies: 1

Last updated: 24 July 2007

Novartis ENACT study
by Elizabeth Rees (Jul 24)

Thanks for this. I am hoping to get the latest update very soon for the other centres.

Elizabeth

by kazza62blue (Jul 23)

Tessa Holyoake's centre in Glasgow now open for ENACT.
Category: Uncategorised

Replies: 1

Last updated: 24 July 2007
kathy on 22 July 2007

Category: Uncategorised

Replies: 1

Last updated: 22 July 2007

chickenpox
by Elizabeth Rees (Jul 22)

Hi Kathy

Chances are you have had chicken pox when you were a child. If your resistance is low chicken pox can bring on shingles in adults, this usually happens after a transplant. I would

by kathy (Jul 22)

Theres chickenpox in my family and my son is now showing symptoms of it,ive just been reading on the internet that people with leukaemia should stay away(how when youve got children ,i will never
Category: Uncategorised

Replies: 1

Last updated: 22 July 2007
CHRISTINE MURPHY on 21 July 2007

Category: Uncategorised

Replies: 4

Last updated: 23 July 2007

previously discussed skin rash
by CHRISTINE MURPHY (Jul 23)

Hi Sue

Thank you for your comments, so good to hear from someone else who has been in a similar situation, hearing back from yourself and Elizabeth tends to put things into perspective.
I know

by suzanne (Jul 23)

Hi Christine
My husband also has CML. He was diagnosed just over two years ago and is taking Glivec. He started with a really bad red itchy rash which covered nearly all his body. He also started

by CHRISTINE MURPHY (Jul 23)

Hi Elizabeth

Thank you very much for responding. The rash had accelereated to impossible levels last week and Brian saw our GP on Friday, and she has organised a skin specialist hopefully

by Elizabeth Rees (Jul 22)

Hi Christine

The rash seems to be due to Glivec. Should he have to come off Glivec there are other inhibitors Brian could try such as Sprycel and Tasigna. If the consultant deemed it
Category: Uncategorised

Replies: 4

Last updated: 23 July 2007
Phil Poole on 20 July 2007

Category: Uncategorised

Replies: 6

Last updated: 27 October 2014

Hammersmith Referral.
by son_of_a_true_hero (Oct 27)

Hello all,

I just want to thank you all for the support you have given my dad when he was going through an incredibly tough time!

I'm now 19 years old and still as proud of my Dad as I'

by son_of_a_true_hero (May 25)

Hi Dad,

it's Chris, and I know this post has been here for a few years or so, but I just wanted to post this reply to say how very proud I am of you, and no matter what happens to you, I

by Phil Poole (Jul 24)

Look forward to meeting you there one day. Next there 22.8.07.

Phil.

by keith Pratt (Jul 22)

Hi

You are certainly at the right place my friend, I've ben a member since 1996, coffee is good as are the 'breakfasts' on clinic mornings. Look forward to meeting you there sometime, I'm the
Category: Uncategorised

Replies: 6

Last updated: 27 October 2014
Linda Corcoran on 20 July 2007

Category: Uncategorised

Replies: 5

Last updated: 20 February 2008

Life Mel Honey
by jerusima (Feb 20)

Thought I'd pass on some helpful advice that one might want to consider to boost the immune system & anemia problems during chemo. The best prices I found at www.lifemelisrael.com

by jerusima (Oct 9)

I found a site that has the cheapest prices for Life Mel Honey

www.lifemelisrael.com

by cmlblogger (Jul 21)

I cannot find reference to that on the site if it is pasturised
I had read somewhere on seths 'surviving leukaemia blog (http://survivingleukemia.wordpress.com/neutropenic-diet/) that for a

by skipd (Jul 20)

I was warned not to take Echinacea as it may cause a side effect, affecting the liver.. As does Glivec and Nilotinib may cause liver problem it is best to always talk with a doctor when you are
Category: Uncategorised

Replies: 5

Last updated: 20 February 2008
leslie chambers on 19 July 2007

Category: Uncategorised

Replies: 2

Last updated: 1 August 2007

18 weeks off imatinib
by Belinda Whitting (Aug 1)

hi everyone, hope that you are all doing ok? my husband has been on gleevac for exactly a year. his last bone marrow tests showed that he is in complete molecular remission. can anyone explain what

by Elizabeth Rees (Jul 22)

Hi Les

Thanks for the update. I can see you carry on being a 'problem'. It is a very unusual situation, well for me anyway, your PcR is undetectable and yet you have all these other problems

by leslie chambers (Jul 19)

visited HH yesterday (18th) its been 18 weeks since being taken off imatinib & not much has changed,blood levels about normal for me ,but platelets at 157 are down from the dizzy hights of 185.(
Category: Uncategorised

Replies: 2

Last updated: 1 August 2007
hcy0da on 18 July 2007

Category: Uncategorised

Replies: 26

Last updated: 11 September 2007

New Member on Working
by derren (Sep 11)

Rob,
I am at James Cook University Hospital in Middlesbrough under Dr Millar and I have been having treatment for three weeks now and the blood levels are all starting to return to normal levels and

by mariansy (Sep 9)

Hi Helen
You ask what exercise I do - well I try and get to a bodypump (weights) class once a week, although college hours may well put paid to that and I do lots of walking. My previous job was

by cmlblogger (Sep 6)

Derren - hope all is going well and the holiday went ok, are you on any treatmnent yet? where are you being treated?
rob - http://cmlblog.spaces.live.com

by derren (Sep 4)

Rob,
Just read your comments and I find myself in exactly the same situation.
Was DX early last month (Aug 07) after attending a blood donor session. I gave blood on the Monday evening, Tuesday
Category: Uncategorised

Replies: 26

Last updated: 11 September 2007
technician69 on 17 July 2007

Category: Uncategorised

Replies: 2

Last updated: 18 July 2007

Mouth Ulcers
by technician69 (Jul 18)

Hi Sandy, thank you for that. I have contacted Beckys consultant and they are going to send a prescription through the post for something. I really get panicky about these things. Thanks for

by sandy craine (Jul 18)

mouth ulcers can be a sign of a low immune response. one way of helping ofset this is by encouraging Becky to supplement her diet with vitamins and minerals. Vit C is good and beta carotine too, for

by technician69 (Jul 17)

Hi everyone, I need some information please if anyone can help me. Becky has been on Glivec now for 5 weeks and she is okay, but she has developed a mouth ulcer. I went to the doctor to see if he
Category: Uncategorised

Replies: 2

Last updated: 18 July 2007
ivanbert on 16 July 2007

Category: Uncategorised

Replies: 4

Last updated: 18 July 2007

6-7 Month PCR Results
by sandy craine (Jul 18)

Ivan,

this is wonderful news for you and i must thank you for sharing your obvious elation with all of us.

so often we forget the fact that this drug has, and is still, saving a lot of

by zaviemiller (Jul 17)

Y A H O O O ! ! ! Y I P P E E E ! ! !
Number 1076 in the Zero Club
Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/01 (400

by Elizabeth Rees (Jul 17)

Well Ivan you are a text book result of Glivec therapy. You have done extremely well. You can get on with your life and leave CML in the background.

You are having similar weather to us in

by Patricia Ormrod (Jul 17)

Ivan,

Congratulations, that is lovely news.

Trish.x
Category: Uncategorised

Replies: 4

Last updated: 18 July 2007
Patricia Ormrod on 14 July 2007

Category: Uncategorised

Replies: 27

Last updated: 25 September 2008

Children with CML
by Michelle H (Sep 25)

Hello all,
Our son who is nearly 3 years old was diagnosed with CML 3 weeks ago. He is a fit and healthy toddler and I only took him to the doctor because my mum noticed he had a firm tummy. I now

by kestrel (Sep 10)

Hi Mary,

I can identify with what you say about your son not wanting to talk about cml - Rio hates talking about it too, so we try to keep it all very low key. I sometimes think he would

by kestrel (Sep 10)

Hi Juanita,

I know Mary has registered with Jayne's new site - I think that makes 5 of us so far, but we're getting going! - have you got the details? It's childrenwithcml.org.uk.

Its

by juanitac (Sep 10)

Hi Mary,

No, my son isn't back at school yet, hoping to phase him back in from next week, then it will be almost 3 months since diagnosis. His back is getting slowly better, he is still quite
Category: Uncategorised

Replies: 27

Last updated: 25 September 2008
skipd on 14 July 2007

Category: Uncategorised

Replies: 2

Last updated: 19 July 2007

pancreatitus and Nilotinib(AMN107)
by skipd (Jul 19)

Thank you Elizabeth

I have restarted at 400mg a day. I have read of three others with the same effect here is example of some of the email

quote

Hi Skip, I'm the Ruth that Anjana

by Elizabeth Rees (Jul 16)

Hi Skip

Sorry to hear of your problems. Thank you for alerting us to this possible side effect of Nilotinib/AMN 107/Tasigna - I had not heard of this and will check it out with Novartis to

by skipd (Jul 14)

Good Morning/evening to all.

I thought that I would post this to anyone starting AMN107 (Nilotinib) trials. I would warn you that it can cause pancreatitus which is rather painful. I was put
Category: Uncategorised

Replies: 2

Last updated: 19 July 2007
v hird on 13 July 2007

Category: Uncategorised

Replies: 1

Last updated: 13 July 2007

calcium levels
by Elizabeth Rees (Jul 13)

Hi

Glad you found us and sorry that you had to. Calcium levels has been a problem for some patients. A good Calcium/Magnesium supplement helps and also helps with the cramps. I would say

by v hird (Jul 13)

Hi,

I am logging on for the first time although I was DX back in 2002 and have been on glivec for 5 years now. It's been going very very well - all tests clear for some time.
But for a year
Category: Uncategorised

Replies: 1

Last updated: 13 July 2007
Coyney on 10 July 2007

Category: Uncategorised

Replies: 3

Last updated: 15 July 2007

My son has measles. Any advice??
by mariansy (Jul 15)

Hi Martyn
How is Reece doing - measles is horrible - I had it as a child. Hope that you're okay too.
Thinking of you all
Marian

by Parmjit (Jul 10)

Martyn

Like Marian unable to provide a definitive answer, but would suggest that you seek medical advice from your BMT hospital. The protocol from our hospital for post BMT children is that

by mariansy (Jul 10)

Not sure here Martyn- but a few years back when James was 6 he had chickenpox and gave it to Tony. He was really very ill with it. I don't know if measles is worse for an adult than a child, but

by Coyney (Jul 10)

Hello all,
My 4 year old son woke up this morning covered in a rash which we think is measles. I just wondered if anyone thinks I should stay clear of him or not? I'm now 18 months post transplant,
Category: Uncategorised

Replies: 3

Last updated: 15 July 2007
cmlblogger on 9 July 2007

Category: Uncategorised

Replies: 1

Last updated: 9 July 2007

Elizabeth trying to email you
by Elizabeth Rees (Jul 9)

Our tech guy is away and I will ask him to have a look as soon as he returns.

E.

by cmlblogger (Jul 9)

but keep getting errors back, saying your inbox is full
this was to info at cmlsupport.org.uk, is that the best way to get in touch
rob - http://cmlblog.spaces.live.com
Category: Uncategorised

Replies: 1

Last updated: 9 July 2007
Steven D on 8 July 2007

Category: Uncategorised

Replies: 2

Last updated: 9 July 2007

Reply to my MP from the Minister of State (Reposted 27/09/07)
by David (Jul 9)

Stephen
Thank you for posting this letter here. As Elizabeth says, it is helpful.
I have a few additional comments.
A lot of the letter re-iterates what we already knew but there are many helpful

by Elizabeth Rees (Jul 8)

This is a good letter from Rosie Winterton and will give some ammunition to those seeking funding for Dasatinib. Thank you Steven.

Is there anyone out there having trouble with Dasatinib

by Steven D (Jul 8)

Please find copy of the wording received my my MP and forwarded to me.
Quote

"Thank you for your letter of 29 May to Patricia Hewitt enclosing correspondence from your constituent about the
Category: Uncategorised

Replies: 2

Last updated: 9 July 2007
Elizabeth Rees on 6 July 2007

Category: Uncategorised

Replies: 10

Last updated: 13 July 2007

Travel Insurance - Rob
by Des (Jul 13)

I was diagnosed in 2003 and for the last 2 years had annual cover with JD Consultants, underwritten by Fortis insurance.

This year however, Fortis revoked the cover and would not cover CML as

by fehr (Jul 12)

Age Concern turned me down flat.
John

by Steven D (Jul 10)

Thanks Janet,
I am looking into it. Our holiday this week is covered however there is a dispute about any further cover. They are looking into it for me.
I will keep you posted
Regards
Steven D

by Janet (Jul 9)

Hi Steven
I have one of these accounts as well, and took your advice a few months ago to get a letter in writing from them. However - I'm not sure if you are aware but the terms and conditions have
Category: Uncategorised

Replies: 10

Last updated: 13 July 2007