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Soph on 15 August 2007

Category: Uncategorised

Replies: 7

Last updated: 23 August 2007

Poem from CML sufferer
by jaynelister (Aug 23)

Hi Soph, Have emailed you.
Jayne xx

by Soph (Aug 22)

I would love to help you if you need it. I look after some websites for bands and an artist so it's really no trouble at all.
Drop me a line at hoonay2003@yahoo.co.uk at any time and I'm more than

by Jayne (Aug 21)

Hi Soph, Have only just picked up Elizabeth's message.
Have just had a look at Davo's site and poems and they are truly wonderful.
His story has particularly struck a chord with me as Aaron is also

by Soph (Aug 20)

Hi Elizabeth,
Thank you for your lovely, inspirational reply. It's always so good to hear about more and more battles being won against the big L and I very much look forward to seeing a cure and
Category: Uncategorised

Replies: 7

Last updated: 23 August 2007
CHRISTINE MURPHY on 14 August 2007

Category: Uncategorised

Replies: 4

Last updated: 21 August 2007

Fast breathing at night/skin rash update
by CHRISTINE MURPHY (Aug 21)

Thank you Nancy C for your reply. We seem to be getting there as the rash is generally not too bad, it comes and goes and hopefully will just die out. Sorry I haven't replied before this but we

by Nancy C. (Aug 18)

Hi Christine,

I do know of at least one person who went off Gleevec and onto Sprycel because of a very bad rash on Gleevec. Other times they do a short course of steriods to deal with the rash

by CHRISTINE MURPHY (Aug 17)

Thanks Elizabeth for replying. What a worrying illness with all these side effects. Things are quieter again breathing going down to 17 breaths a minute, people will think I am paranoid but of

by Elizabeth Rees (Aug 17)

Hi Christine

I waited to see if anyone was going to pop up with similar problems. I must say I have not come across this and such a problem is best dealt with and monitored by Brian's
Category: Uncategorised

Replies: 4

Last updated: 21 August 2007
Elizabeth Rees on 10 August 2007

Category: Uncategorised

Replies: 3

Last updated: 11 August 2007

Britta Faulkner raising money whilst having her transplant
by Elizabeth Rees (Aug 11)

If you click on the above it will or should takeyou to the site.

Best wishes

Elizabeth

by Parmjit (Aug 11)

Nancy
The website is:http://www.justgiving.com/britta4leuka. I wish her well in both her fundraising and through her transplant.
Best wishes

Parmjit

by Nancy C. (Aug 10)

Hi Elizabeth,

How do you find her site? I am not familiar with Just Giving.

Nancy C.

by Elizabeth Rees (Aug 10)

Britta Faulkner Fundraising
This young woman is fundraising during her transplant. She aims to climb 10000 steps on the step machine and ride 500kms on her bike while she is an inmate at Hammersmith
Category: Uncategorised

Replies: 3

Last updated: 11 August 2007
Belinda Whitting on 8 August 2007

Category: Uncategorised

Replies: 2

Last updated: 9 August 2007

molecular remission
by Belinda Whitting (Aug 9)

hi nancy, thank you so much for your reply. and thanks for the info about the fact that he probably wont have a relapse, i didnt know that. were off 2 norfolk 4 the week so im definately going 2

by Nancy C. (Aug 8)

Hi Belinda,
No, the drugs for CML are not a cure, which is why you have to keep taking the drugs. Your husband has had a very good response to Gleevec and he is not likely to relapse with this

by Belinda Whitting (Aug 8)

hi everyone, i hope you are all doing ok. can anyone help me? my husband has been on gleevac 4 a year he has just had a year anniversary bone marrow test and the results show that the philedelphia
Category: Uncategorised

Replies: 2

Last updated: 9 August 2007
kestrel on 6 August 2007

Category: Uncategorised

Replies: 4

Last updated: 31 August 2007

BMT
by (Aug 31)

Hello! It is cool! My name is d0b81e

by (Aug 31)

Hello! It is cool! My name is 89ac3a2c

by jaynelister (Aug 7)

Hi Kestrel
As Parmjit has already mentioned I think it very much depends on the individual and what side effects they suffer after BMT.
In our case Aaron was on Cyclosporin for approx 10 months. He

by Parmjit (Aug 6)

Kestrel
Have e-mailed you on this matter but as you say, many post BMT treatments are individual given the donor match status. As we found nothing is given or set in stone, as post BMT follow-up can
Category: Uncategorised

Replies: 4

Last updated: 31 August 2007
suzanne on 6 August 2007

Category: Uncategorised

Replies: 4

Last updated: 7 August 2007

Increased Glivec dose to 600mg
by suzanne (Aug 7)

Hi Skip
Thanks for your reply. Sorry to hear that you need to have transfusions, but as long as they do the trick, thats what counts.
Your comments regarding low/zero Platelet counts are reassuring

by suzanne (Aug 7)

Hi Phil
Thanks very much for your response. It really helps to hear of other peoples experiences in similar circumstances.
We are both most encouraged that low Platelet counts do not seem to be a

by skipd (Aug 6)

Hi Suzanne

I had a similar thing happen while on Glivec (Gleevec) and also on AMN107. I have very low platelet counts as well as low red cells and need transfusions. I feel well and live a

by Phil Poole (Aug 6)

Hi Suzanne,
I took the standard 400 mg. dose from March 2004 to October 2005 (19 months)similar to your husband. My consultant increased my dose to 600 mg when the PH Chromosome increased from 2.5
Category: Uncategorised

Replies: 4

Last updated: 7 August 2007
Elle on 4 August 2007

Category: Uncategorised

Replies: 2

Last updated: 7 August 2007

Blood counts....
by Elle (Aug 7)

Hi Elizabeth
I'm doing ok . A bit tired but i'm putting that down to being on holiday and keeping up with a 12 year old!!! No seriously i am tired could sleep for Scotland. Lost a wee bit of weight

by Elizabeth Rees (Aug 5)

Have a look at the trend Elaine. If you have an infection it is very likely your wbc will rise. You are getting monitored weekly so you will soon see. I do hope everything goes ok for you.

by Elle (Aug 4)

Hi
Hope everyone is well. Just a wee question???? Been on Dasatinib now 6 weeks. Firstly i was Anaemic then that sorted itself out. Last visit showed my WBC had gone up to 11.2% , platelets also
Category: Uncategorised

Replies: 2

Last updated: 7 August 2007
technician69 on 3 August 2007

Category: Uncategorised

Replies: 10

Last updated: 23 August 2007

Disability Living Allowance
by technician69 (Aug 23)

Hi Keith, Thank you for your response. I think that it is a fact that sometimes they do not want to give you DLA. I would have given in but then I thought that I am entitled like you said. I have

by keith Pratt (Aug 20)

Hi Everyone - a subject in itself, one could write a book on the intricacies of DLA. Firstly it does seem to be post coded, I applied in 1997 but was denied, as did over 500 applicants in the

by technician69 (Aug 6)

Hi Belinda, I am going to write a letter to appeal tomorrow. I will let eveyone know the outcome when I find out. Thanks for replying to my thread everyone. Love Dawn xxx

by Belinda Whitting (Aug 6)

hi dawn, my husband was turned down for this at first but i appealed,explaining the side effects that he was suffering from, and i won the appeal.
Category: Uncategorised

Replies: 10

Last updated: 23 August 2007
emanuels_daughter on 3 August 2007

Category: Uncategorised

Replies: 4

Last updated: 3 August 2007

Glivec questions
by emanuels_daughter (Aug 3)

The haematologist is in Malta but he has had the bone marrow biopsy etc in Gozo and has a good dr there.
He actually maintains people's farmhouses while they are away so he could very well know your

by Elizabeth Rees (Aug 3)

Hi Irene

It would be a good idea to see what his blood count is doing after 2 weeks and to be monitored until the counts get into acceptable ranges and stay there. Better safe than sorry.

by emanuels_daughter (Aug 3)

Thank you for your response Elizabeth.
Actually he is on Gozo (smaller island) and there are only 2 other people on Glivec there.
I thought he said that he was taking 4 tabs x 400mg every day but it

by Elizabeth Rees (Aug 3)

Hi Irene

Where is your Dad being seen in Europe ? The good thing is that he is on Glivec and should do very well. I would say that follow up should be every two weeks until he is established
Category: Uncategorised

Replies: 4

Last updated: 3 August 2007
David on 2 August 2007

Category: Uncategorised

Replies: 2

Last updated: 5 August 2007

Lymphatic Drainage
by Nancy C. (Aug 5)

I did goggle it....lymphatics, dry brushing and here are some references:
Body WisdomDry brushing is a skin care technique that assists the skin in waste removal. ... in the underlying organs,

by Nancy C. (Aug 5)

Hi David,

I am in the US. Some time ago, I had some lymphatic massage done by an LMT (licensed massage technician). It is very gentle as the lymphatic system is just below the skin. The LMT

by David (Aug 2)

Val has had it suggested to her by an osteopath that having manual lymphatic drainage (not from the osteopath) might help with reducing water retention from Glivec.
Does anyone have any experience
Category: Uncategorised

Replies: 2

Last updated: 5 August 2007
zaviemiller on 2 August 2007

Category: Uncategorised

Replies: 2

Last updated: 5 August 2007

THE CAUSE OF CML
by Steven D (Aug 5)

I 100% agree with Elizabeth.
I find the whole email very strange as the person does not want to be identified, even under a pseudonym.
Lets be frank. There is no known cure for CML other than a BMT

by Elizabeth Rees (Aug 3)

The first thing I would like to say is that we would absolutely NOT RECOMMEND anyone to come off Glivec to follow a 'natural' path. The fact that this person wishes to withdraw his/her email

by zaviemiller (Aug 2)

hello dear friend

I tried to send the following info to the CMLSUPPORT .CO.UK

but couldn't get through for some reason.

I saw your name and address and thought you might consider
Category: Uncategorised

Replies: 2

Last updated: 5 August 2007
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