You are here

Forum

sandy craine on 14 April 2008

Category: Uncategorised

Replies: 1

Last updated: 15 April 2008

multi-targeted inhibitor AP24534 - ARIAD
by Dennis (Apr 15)

Sounds really, really promising Sandy. It's the T315I that we need to get!

by sandy craine (Apr 14)

AP24534 - a novel multi-targeted kinase inhibitor ARIAD’s second oncology product candidate, AP24534, is an internally discovered novel oral multi-targeted kinase inhibitor that has broad potential
Category: Uncategorised

Replies: 1

Last updated: 15 April 2008
Coyney on 12 April 2008

Category: Uncategorised

Replies: 2

Last updated: 13 April 2008

Im running the London marathon tommorow. Please sponsor me if you can afford to.
by Coyney (Apr 13)

Dear all,
Many thanks to all of you that sponsored my brother Craig and I for today’s London marathon. We returned home about an hour ago and are pleased to tell you all everything went really well

by kathy (Apr 12)

Good luck martyn,

kathy

by Coyney (Apr 12)

Dear all,
I'll be running the London marathon tommorow for the second time since my transplant in November 2005 for Leukaemia CARE.
The training's gone fairly well alhough I had a 3 week break
Category: Uncategorised

Replies: 2

Last updated: 13 April 2008
donnaberry on 10 April 2008

Category: Uncategorised

Replies: 7

Last updated: 18 April 2008

Weight Gain
by SwanValleySue (Apr 18)

Good topic
For those who do not want to use a diuretic -

if you go on an eating plan named Salt Skip Program

- which was devised for Menieres, High Blood Pressure control

and

by donnaberry (Apr 14)

Sandy

Thanks for your help I am seeing my Onc tomorrow will mention the plasma test.

Donna x

by sandy craine (Apr 12)

Hi Donna,

I understand why you might be unwilling to take a diuretic as this may have the effects of upsetting your sodium/potassium balance. Anyway you have to take Glivec every day so why

by donnaberry (Apr 11)

Thanks for your comments! Sandy I was given a pill for water retention by my onc but I don't take it regularly enough (my fault) to see the effects.

I was an avid runner before dx and now do
Category: Uncategorised

Replies: 7

Last updated: 18 April 2008
Dennis on 10 April 2008

Category: Uncategorised

Replies: 1

Last updated: 11 April 2008

Projection.
by sandy craine (Apr 11)

Hi Dennis.......... thanks for letting us know what your consultant said. We all know that doctors are generally conservative in their opinions/estimates about therapy so this is good to hear.

by Dennis (Apr 10)

Just a quickie. I saw my new consultant yesterday. He told me that the projections for CML patients survival, were 30 years now. Of course, he added that was only a projection and time will tell,
Category: Uncategorised

Replies: 1

Last updated: 11 April 2008
fselman on 10 April 2008

Category: Uncategorised

Replies: 5

Last updated: 13 May 2015

CML, Glivec, flu vaccine, and anti viral medicine
by David Fitz (May 13)

I had a flu jab this year (I take dasatinib, if that matters) and besides a sore arm for a few hours, no problems whatsoever.

by fselman (Apr 11)

Thanks everybody for the advice. I will take it as soon as I get the green light from my hematologist.

Cheers,

Fernando

by donnaberry (Apr 10)

I had the flu jab and pneumonia jab about 3 mos ago. My arm ached like hell for 2 days the pneumonia side but nothing from the flu jab. I am so glad I had them both. I was dx last May.

by kathy (Apr 10)

Hi fernando,ive had the flu jab every year since i was dx,never had any problems,

take care,kath
Category: Uncategorised

Replies: 5

Last updated: 13 May 2015
leslie chambers on 9 April 2008

Category: Uncategorised

Replies: 2

Last updated: 20 April 2008

Re alcohol levels.
by denisetaylor (Apr 20)

I am having a collection of my stem cells next month,and are to be given G.C.S.F. injections for five days prior to this. Does any one who has experienced this know if I continue to take Glivec

by sandy craine (Apr 11)

Thanks for the feedback Les. Good to know patients questions/thoughts can contribute to our doctors ideas about possible effects on therapy.

best,

Sandy

by leslie chambers (Apr 9)

Hi all,

Been to HH today and asked about low HGB counts and alcohol, there doesn’t seem to be any problem of it having a greater effect on low counts, as it’s about the volume of blood not the
Category: Uncategorised

Replies: 2

Last updated: 20 April 2008
clare on 9 April 2008

Category: Uncategorised

Replies: 6

Last updated: 12 April 2008

low white count
by sandy craine (Apr 12)

Hi Clare,

please do not worry.... the range for normal white cell count is 4 -11 but you must remember that that is for the general population who do not have CML and who do not need to take

by clare (Apr 11)

the doctors have never mentioned my white count before so i would have asumed it was normal!!! they havent ask me to go back before i travel on mon so hopefully i will be fine !!

app on the

by clare (Apr 11)

thankyou for your views will have a look on the website

by sandy craine (Apr 10)

It is with some agreement amongst clinicians that if your white count does not fall below 1.50 that you are quite OK. maybe in that case it would be best to stay out of crowded places but 2.2 is
Category: Uncategorised

Replies: 6

Last updated: 12 April 2008
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