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sandy craine on 29 August 2007

Category: Uncategorised

Replies: 3

Last updated: 8 November 2007

no access to Dasatinib in Newcastle? Paul
by PAUL (Nov 8)

Sharon is on + 50 today and doing marvellous, even the tiredness is subsiding.ill keep posting and hats of to Newcastle RVI.

by russ whales (Sep 14)

Hi Paul
Just to wish your wife (and you) the very best with the transplant - remember I had a mini 3 years ago so if any questions arise please post and I'll try to help. I'm sure you are getting

by PAUL (Sep 14)

Thanx Sandy for response. When we went to meet the coordinater steve Fox he told us that they were going to probably do the mini (nice to find out at the 11th hour)Anyway thats what is happening

by sandy craine (Aug 29)

BMT

Submitted by PAUL on Thu, 2007-08-23 17:54.
Well we are about to join you all in sept when my wife goes in for a bmt, her brother is a match and she seems fine about it all infact i think
Category: Uncategorised

Replies: 3

Last updated: 8 November 2007
sandy craine on 29 August 2007

Category: Uncategorised

Replies: 2

Last updated: 30 August 2007

Combination of Drugs Up Front in CML May Prolong Remission
by sandy craine (Aug 30)

hi paul,

this article is really opening a dialogue is suppose. i have heard many clinicians talk about combination therapy being the ideal and the future. even the sct that i had is a form of

by Paul Cooke (Aug 30)

I wonder about the practicalities of this approach.

We cannot get Dasatinib funded for single therapy in some parts of the uk at present - is it likely that the NHS would bear the cost of both

by sandy craine (Aug 29)

Combination of Drugs Up Front in CML May Prolong Remission
Zosia Chustecka

Information from Industry

Assess clinically focused product information on Medscape.

Click Here for
Category: Uncategorised

Replies: 2

Last updated: 30 August 2007
michelle on 26 August 2007

Category: Uncategorised

Replies: 9

Last updated: 12 September 2007

glivec is making feel so sick?
by denisetaylor (Sep 12)

I was diagnosed, november 2006, and take 400ml glivec. I eel sick, but counter this by taking cyclizine about 1/2 an hour before my breakfast, then toast and cereal, then tablet with large glass of

by fehr (Sep 2)

Hi Michelle,
For the first month or so of taking 400mg I experienced nausea. Then I split it in two halves, one half after breakfast and one after my evening meal. The nausea disappeared.

by AdamH (Sep 2)

Hi Michelle
I had bad nausea when I was on taken 800mg a day and tried various remedies. I was eventually prescribed 20mg of pantoprazole a day and it worked a treat. I have only had nausea a few

by julie hubbard (Aug 30)

Hi, i don't know if this will help but my son aged 10 has split his dose so he takes 150mg with his breakfast and 150mg after tea which seems to help. The only time he is sick at he moment is when
Category: Uncategorised

Replies: 9

Last updated: 12 September 2007
Elizabeth Rees on 25 August 2007

Category: Uncategorised

Replies: 1

Last updated: 4 September 2007

CML Seminar 24th November - Edinburgh
by Apryl (Sep 4)

Hi Elizabeth.
I would like to book two places for the seminar but when I down load the form I only get the page with the agenda and no indication of where to send it to etc. Is there another way of

by Elizabeth Rees (Aug 25)

Hi everyone

There are 40 places left for the Seminar - so hurry and book your place.

We are trying to arrange room hire for a CML Support get together the night before and as soon as I
Category: Uncategorised

Replies: 1

Last updated: 4 September 2007
Anonymous (not verified) on 21 August 2007

Category: Uncategorised

Replies: 1

Last updated: 27 August 2007

Thank You
by sandy craine (Aug 27)

hi linda,
thanks for your encouraging note and for letting us know that this site has been of help to you.

with best wishes,
sandy C ;o)

by Anonymous (Aug 21)

I would just like to say a big thank you to everyone. I do not post very often as I am a bit under confident with writing..I do read this site a lot and it is great to have my own problems answered
Category: Uncategorised

Replies: 1

Last updated: 27 August 2007
sal on 21 August 2007

Category: Uncategorised

Replies: 1

Last updated: 21 August 2007

pcr
by Elizabeth Rees (Aug 21)

Hi Sal

May be it is a bit early to expect the PCR to vanish after just three months. I would say give it another 3 and then think about options. Rob is in a good position for a transplant if

by sal (Aug 21)

Hi everyone, Rob's 1st PCR after 3 months on Dasatinib is just back at 1.5% down from 2% for his last PCR on Glivec. Given that it took him over 2 years to get to 2% on Glivec He is concerned that
Category: Uncategorised

Replies: 1

Last updated: 21 August 2007
Debbie on 21 August 2007

Category: Uncategorised

Replies: 9

Last updated: 8 October 2007

Calcium Levels
by Debbie (Oct 8)

Hi Kathy,

Thanks for answering my question. I was also diagonised in 2005. I'm still on 3 week blood tests and six monthly bone marrow biopsy. My eyes are puffy most days also. My

by Katherine (Sep 18)

Hi Debbie

I'm from Brisbane too (though moved 6 months ago, but still visit Brisbane every 3 months) diagnosed Aug 2005!! My specialist is at the Mater too. I haven't had any problems with

by Debbie (Sep 6)

hi Vicki,

Thanks for replying to me. I will wait til next weeks when i have another blood test to see how my levels are then. I don't suffer cramps but I do get aching legs and arms. I

by v hird (Sep 3)

Hi all,

I posted a similar query a while back as I found my levels had dropped significantly - I need to take double the non prescription dose to maintain okay levels. If i don't take them I
Category: Uncategorised

Replies: 9

Last updated: 8 October 2007
Elizabeth Rees on 21 August 2007

Category: Uncategorised

Replies: 4

Last updated: 1 September 2007

Les - Spleen
by leslie chambers (Sep 1)

Hi Elizabeth,

We did meet Sylvie and her husband, and they are a lovely couple, but like the rest of us,they have their problems but they are definitly in the right place to get them sorted.

by leslie chambers (Aug 25)

Hi Elizabeth,

Will do,we should arrive about 11.00,traffic permitting.I look forward to meeting Sylvie, and thank you for your good luck wishes.

Les.

by Elizabeth Rees (Aug 23)

Hi Les

When you are there on 29th look up a lady called Sylvie - she is also there on that day. You can compare notes !

Good luck for a continued string of 00000000000 !

E.

by leslie chambers (Aug 21)

Hi Elizabeth,

back down to HH Wed 29th Aug,havent had a PCR result since July 18th, and that was for the test 6 weeks earlier.that was 0.000. Had a bone marrow Biopsy & Aspirate on Aug 9th
Category: Uncategorised

Replies: 4

Last updated: 1 September 2007
fehr on 18 August 2007

Category: Uncategorised

Replies: 4

Last updated: 23 August 2007

Stem Cell Harvest
by fehr (Aug 23)

Thanks Keith. I certainly haven't dismissed it yet, but I am inclining that way. Having said that, I didn't realise that the cells could be used in procedures other than a transplant.
I have a

by keith Pratt (Aug 20)

Hi John

Elizebeth is giving you good info here. Harvested cels are not always used for a transplant, but can be used for other proceedures within your drugs regime. I had a auto graft

by fehr (Aug 19)

Hi Elizabeth,
I read that chemo to kill remaining nasties was a precursor to cell growth stimulation, but I find that CML information on the net tends to be out of date very quickly.
There must

by Elizabeth Rees (Aug 18)

Hi John

With a very good response to Glivec it is unlikely that you will need your harvested cells. Even if you lost your response to Glivec there are other drugs there. I can understand
Category: Uncategorised

Replies: 4

Last updated: 23 August 2007
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