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Ali Loram on 4 April 2008

Category: Uncategorised

Replies: 7

Last updated: 8 April 2008

new member
by keith Pratt (Apr 8)

Hello Ali

You have found the right place, we are all here to help you along, and to make the life of the 'nasty' that is living with you, upleasant. Side effects of Glivec affect people in

by sandy craine (Apr 5)

Hello Ali,

Yes it is early days for you as you say, but the fact that you have already found this site and you have introduced yourself in a bid to contact others is a good sign. Glivec is a

by Phil Poole (Apr 5)

Hi Ali,
I'm so glad to hear that you have great family support. That truly is a godsend. Great to hear that you live in a lovely part of the country. I moved to Cornwall for about two and a half

by julie hubbard (Apr 4)

I am in somerset, my son was diagnosed in sept 06 aged 9, so looking from the other side so to speak but if you would like to chat/ meet then let me know.

Julie

email julie@mason67.
Category: Uncategorised

Replies: 7

Last updated: 8 April 2008
julie hubbard on 4 April 2008

Category: Uncategorised

Replies: 1

Last updated: 5 April 2008

dasatinib
by sandy craine (Apr 5)

Hi Julie,

sorry you have this worry. It is a little difficult to advise as you give no figure for the rise in your son's pcr. If it is not a large rise then I would say that you need to see at

by julie hubbard (Apr 4)

Has anyone experience of dasatnib for children with cml. My sons molcular level rose after the last pcr, a bone marrow biopsy was done on monday to check levels and we are meeting with the
Category: Uncategorised

Replies: 1

Last updated: 5 April 2008
sweet 24 on 1 April 2008

Category: Uncategorised

Replies: 11

Last updated: 17 November 2008

mum
by kestrel (Nov 17)

Hi Sweet 24

Thats such good news. It makes it easier for all of you if you can share it all as a family. Well done to you all!

Take care and very best wishes,

kestrel

by sweet 24 (Nov 14)

hi thank you to everyone so far i have learnt allot and mum is also allot better! she is doing well. i hope everyone else is also ok and i wish everyone luck!
THAN YOU
sweet 24

by kestrel (Apr 20)

Hi Sweet 24,

Thats great news - you've made my day! Sounds like there's a lot of love and care in your family. Im sure you will find it really helpful to dip in and out of this site when you

by julie hubbard (Apr 20)

glad you have shown your mum and dad, do keep in touch as any questions or problems you have can usually be answered and that goes for mum and dad as well. As you have found out you are not alone.
Category: Uncategorised

Replies: 11

Last updated: 17 November 2008
kestrel on 31 March 2008

Category: Uncategorised

Replies: 5

Last updated: 1 April 2008

awaiting BMT and need travel insurance
by julie hubbard (Apr 1)

glad you are sorted out, one less thing to worry about julie

by kestrel (Apr 1)

Hi All,

Success! I have just sorted cover thru Freedom (who we used last Summer). All aspects of Rio's CML are covered, together with the rest of us (me, husband with high blood pressure -

by sandy craine (Mar 31)

I am not sure that this is at all logical. How can you be refused cover because you plan to have a medical procedure in the future and after the proposed period of travel?

Rio will not be

by julie hubbard (Mar 31)

Hi Kestrel, I picked this up from somewhere ?BCH www.InsureCancer.com

01252 780190.I don't know if that is any good also when we went to lapland we used Citybond Suretravel www.citybond.co.uk
Category: Uncategorised

Replies: 5

Last updated: 1 April 2008
sandy craine on 31 March 2008

Category: Uncategorised

Replies: 2

Last updated: 4 April 2008

Processed meat and Bowel Cancer
by sandy craine (Apr 4)

Hi keith,

I think the meat in question is processed rather than fresh... like sausages/bacon/salami etc that has sodium nitrate as a perservative. If you eat these sort of preserved meats

by keith Pratt (Apr 1)

Hi Sandy

Intersting....read all of the article...so we cannot eat meat then, because if you follow the doctrine put forward, this covers all foods that can be bought over the counter. What are

by sandy craine (Mar 31)

Hi all, I know that this is a dedicated site for CML but the incidence of bowel cancer is very high in the UK.
This article is rather alarming particularly for those who love a traditional british
Category: Uncategorised

Replies: 2

Last updated: 4 April 2008
Pennie on 31 March 2008

Category: Uncategorised

Replies: 1

Last updated: 31 March 2008

Rash on AMN107 (tasigna)
by sandy craine (Mar 31)

Hi Pennie,

this must be a really annoying side effect. It sounds just like eczema and as I suffered from that for periods of my life I know just how uncomfortable it must be.

I can only

by Pennie (Mar 31)

I have been on 400mg Tasigna since early feb. I have the most horrid itchy spots on face and parts of body, behind knees and in various creases! Anyone else getting this problem? My face looks like
Category: Uncategorised

Replies: 1

Last updated: 31 March 2008
Elaine on 29 March 2008

Category: Uncategorised

Replies: 4

Last updated: 6 April 2008

Long time!!!
by Elaine (Apr 6)

Hi Sandy
Thanks. I am at the hospital on Tuesday. I will let you know how i get on.
Elaine

by sandy craine (Apr 4)

Hi Elaine... if your last 2 pcr's read the same then at least the results are not increasing which is a good sign.
as for increasing the dose of Dasatinib, I am not sure. I think I am right in

by Elaine (Apr 1)

Hi Sandy
I have had 2 back already ( both read the same ). I take 100mgs of Dasatinib already. Can they increase it? I thought i was on max doze.
Elaine

by sandy craine (Mar 31)

Hi Elaine,

I hope your pcr results resolve. sometimes they do vary from result to result, which is why most doctors like to see 3 in a row to compare. sometimes it can be just a bad sample and
Category: Uncategorised

Replies: 4

Last updated: 6 April 2008
Bill Yellowley on 29 March 2008

Category: Uncategorised

Replies: 17

Last updated: 21 April 2008

Glivec side effects
by SwanValleySue (Apr 21)

Bill
I am on 600mg (Australia our haem. seem to give higher doses.
I started on 100 mg - then 200mg - then 400mg and now on 600mg

which will be my normal dose.
100mg - a doddle in the park -

by Basil from RSA (Apr 8)

Hello Sandy,

I reached my "undetectable" target but had to reduce my dosage from 600mg to 400 mg per day due to the severe side effects, especially constant eye-bleeds.

My "undetectable

by sandy craine (Apr 4)

Hi Bill,

My comment to Basil about the dose reduction was only in the context of him having acheived a molecular response. What the CML doctors in Italy were saying was that to reduce doses

by Bill Yellowley (Mar 31)

Thanks Sandy
I must admit I feel vunerable on a reduced dose. While I hope the side effects arent as strong, I have another test this week and I hope my 2 week break from 400mg hasn't allowed the
Category: Uncategorised

Replies: 17

Last updated: 21 April 2008
sue on 28 March 2008

Category: Uncategorised

Replies: 6

Last updated: 20 April 2008

how often should we have a pcr and hospital visits
by denisetaylor (Apr 20)

I am going to have my cells collected next month. and need to have injections of G.C.S.F, does anyone know if you continue to take Glivec, while you are having these growth injections.I am having

by keith Pratt (Apr 1)

Hello

I am happy, as I have gone from having a Bone Marrow Aspirate every six months, to not having one for over a year, but PCR done at every visit, so about every six weeks.

Funny how

by Dennis (Mar 31)

I have a PCR every 6 months, with a FBC every three months. Never had a BMA for years now.
I'm PCR negative, but not undetectable.

by sandy craine (Mar 31)

Hi Sue,

depending on how long you have been on therapy and how stable your counts are it is normal to have PCR's done every 3 months. It usually take 4 weeks for me to get the results of the
Category: Uncategorised

Replies: 6

Last updated: 20 April 2008
Rio on 28 March 2008

Category: Uncategorised

Replies: 2

Last updated: 31 March 2008

My website..
by sandy craine (Mar 31)

Hi Rio,

I have put the link on the home page... you are top of the diary list!
Sorry it has taken me a few days to do this but I have been away in Florence at the EBMT (european bone marrow

by David (Mar 29)

Rio
Well done and good luck with it all.
David

by Rio (Mar 28)

hello people
iv set up a caring bridge site for friends and family and for people with CML. Iv put my back ground story on but il suspect il start using it a lot more in june when i have my BMT...
Category: Uncategorised

Replies: 2

Last updated: 31 March 2008
Phil Poole on 28 March 2008

Category: Uncategorised

Replies: 2

Last updated: 31 March 2008

Reply from DH on Dasatinib/Nilotinib
by sandy craine (Mar 31)

Hi Phil,
thanks for the copy of your MP's answer from DH. Same information as usual but I think the more MP's that annoy the DH ministers then the more we make them aware of us ... the patients who

by keith Pratt (Mar 28)

Well done Phil

perhaps we should print this off and shove under the noses of the respective PCT's who deny patients this life saving preparation. At the risk of annoying an awful lot of ladies

by Phil Poole (Mar 28)

Dear all,
I received the reply from my MP who wrote to Dawn Primarolo, Minister of State for health re the issues surrounding Dasatinib & Nilotinib. The Minister states that Dasatinib was
Category: Uncategorised

Replies: 2

Last updated: 31 March 2008
sueparsons on 26 March 2008

Category: Uncategorised

Replies: 15

Last updated: 16 January 2009

change to dasatinib?
by vickiep (Jan 16)

I have read all of the above with great interest. I was started on 400mg of Glivec daily some 18months ago, with the doseage increased to 600mg about 6weeks ago as I am failing to reach satisfactory

by donnaberry (Jun 15)

Tell him a cure is just around the corner......

And hug him tight from me xxxx

Donna x

by sueparsons (Jun 12)

For all of us pcr fans here's a song-

go to: pcrsong.notlong.com

It is an ad for biorad who manufacture pcr equipment.

Sue

by sueparsons (Mar 30)

I'm really grateful for all the comments here and above about the side effects of Glivec and Dasatinib. They are going to be a great help to me in making the decision to change, if only temporarily
Category: Uncategorised

Replies: 15

Last updated: 16 January 2009
fselman on 26 March 2008

Category: Uncategorised

Replies: 1

Last updated: 27 March 2008

News about SGX393 pre-clinical trials
by sandy craine (Mar 27)

Thanks for this link, I have put the full article under the Newswire column.
Sandy

by fselman (Mar 26)

There was a news release on 25 March 2008 about SGX393. You can find it at
http://www.medicalnewstoday.com/articles/101541.php
It seem that pre-clinical trials show that this drug can be effective
Category: Uncategorised

Replies: 1

Last updated: 27 March 2008
keith Pratt on 26 March 2008

Category: Uncategorised

Replies: 1

Last updated: 27 March 2008

PCR today`
by sandy craine (Mar 27)

Hi Keith........ great news once again. Maybe your tiredness is due to the relief of finally finding a drug that your stubborn cml cells respond to? You have kept your nerve for a long time now so

by keith Pratt (Mar 26)

Hello everyone

Hammersmith today, bloods all behaving as best they can, platlets reachinag an all time high (unassisted) of 70, PCR (from 20,02.08) now at 0.763 so must now be 0.000763 last
Category: Uncategorised

Replies: 1

Last updated: 27 March 2008
chris murphy on 23 March 2008

Category: Uncategorised

Replies: 4

Last updated: 27 March 2008

No PCR tests in Ayrshire and Arran - help needed
by Annie Kennedy (Mar 27)

Chris

I think you may have difficulty getting support just because of patient numbers - there may simply not be many people with CML in your healthboard. My consultant is in Edinburgh and

by sandy craine (Mar 27)

Hi Chris....... yes I was surprised that you didn't get any response from others in Scotland, maybe easter holidays has something to do with it?
Do not hesitate to use this forum to support any

by chris murphy (Mar 27)

Hi Sandy

Once again you come to my aid. Thank you very much for all the info. I haven't had any response from other cml patients in this part of the world, perhaps there are very few.

by sandy craine (Mar 26)

Hi Chris,

this article is quite technical but I have cut and pasted the relevant paragraph dealing with PCR/FISH etc. Basically it says that FISH is a very good diagnostic tool but for
Category: Uncategorised

Replies: 4

Last updated: 27 March 2008
chris murphy on 23 March 2008

Category: Uncategorised

Replies: 8

Last updated: 26 March 2008

coughs and colds when taking Glivec/Dasatanib
by fselman (Mar 26)

I have been taking Glivec for almost two months and have also been affected by flu and coughing. The coughing was reduced (but not eliminated) after I stopped taken Alopurinol. I work at high

by cmlblogger (Mar 25)

any slight cold I get I seem to have for no more than 24-48 hrs and then feel fine afterwards
rob
rob - http://cmlblog.spaces.live.com

by Debbie (Mar 25)

I have been on Glivec for nearly 3 years now. Each year I get a flu jab in the beginning of winter and each year I get a cough not long after the jab. I don't know if it is related or not.
Debbie

by cmlblogger (Mar 24)

been on Imatinib for over 12 months, I have not sufferred any serious colds or flus at all in that time, even though my family have been ill at times.
I put it down (unscientifically) to my body
Category: Uncategorised

Replies: 8

Last updated: 26 March 2008
Pennie on 23 March 2008

Category: Uncategorised

Replies: 1

Last updated: 23 March 2008

Tasigna update
by sandy craine (Mar 23)

Hi Pennie,

good to hear that the side effect profile for Tasigna is so much better for you than Glivec.

good luck for Wednesday....and your PCR status. as you say it may be too early to

by Pennie (Mar 23)

I have been on the reduced dose of 400mg since early Feb. So far the side effects for me are very few. Some strange spots on my face that make me look as if I am reverting to teenage! Also got
Category: Uncategorised

Replies: 1

Last updated: 23 March 2008
technician69 on 23 March 2008

Category: Uncategorised

Replies: 1

Last updated: 23 March 2008

Happy Easter Everyone!!!
by Rio (Mar 23)

hope everyone has lots and lots of easter eggs 2day :-)
Rio

by technician69 (Mar 23)

Just a quick message to wish you all a happy easter. Hope you eat loads and loads of easter eggs!!! Love Dawn xxx
Category: Uncategorised

Replies: 1

Last updated: 23 March 2008
Rio on 22 March 2008

Category: Uncategorised

Replies: 11

Last updated: 28 March 2008

My BMT
by Rio (Mar 28)

thanks for supporting me and being really friendly..
il put my website address on here soon. im not really using a lot at the moment but i guess il be using it when i have a BMT.
Rio

by Patricia Ormrod (Mar 23)

Hi Rio,
I have been closely following your CML journey. I spoke to your mum in Edinburgh.
Both Jack and myself will definatly look into your site on a frequent basis.
I have a feeling that you will

by Steven D (Mar 23)

Hi Rio,
Carol and I will be visiting your site regularly.
We both wish you all the best.
It was nice to meet Kestrel in the flesh in Edinburgh.
All our Love
Steven and Carol

by Rio (Mar 23)

thanks everyone for supporting me and il have a look at peoples website soon. thanks for letting me have your email address martin, if im worried about something to do with the BMT il probably give
Category: Uncategorised

Replies: 11

Last updated: 28 March 2008
hcy0da on 20 March 2008

Category: Uncategorised

Replies: 5

Last updated: 25 March 2008

Thoroughly Cheesed Off
by Steven D (Mar 25)

Hi Helen,
You should be able to communicate with the person responsible for your well being.
My advice would be to ask for an immediate referral to somewhere like the Hammersmith which is a center

by skiinglaketahoe (Mar 25)

Helen
I was sorry to hear of your problems at your local hospital. I would think that everyone here would empathise with you. There is nothing worse than the building up of anticipation and tension

by Des (Mar 25)

Des
I live in Wales and was diagnosed in April 2003. After almost a year I requested a referral to Hammersmith as I felt(after reading on this site) that they were far more familiar with CML than

by valandi (Mar 22)

Interesting comments and I doubt you are alone- Val is seen by any one of several doctor's in the haemotology dept of the local hospital (at least 6 different doctors in the last 12 months).
Category: Uncategorised

Replies: 5

Last updated: 25 March 2008