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sandy craine on 17 January 2011

Category: Uncategorised

Replies: 2

Last updated: 17 January 2011

I haven't posted in a long time- submitted by Clare
by clare (Jan 17)

thankyou steven good to know there is somebody else experiencing it i will keep u posted on my next visit to have my bloods checked in feb hopefully they are still at bay x

by Steven Davies (Jan 17)

Hi Claire,

At the Hammersmiths patient support meeting on the 8th Jan this year this very subject was bought up by a a cml sufferer similar to you.

Professor Jane Apperley said that at

by sandy craine (Jan 17)

new
I have reposted the following message from Clare. Please do not use old discussion threads when you put a new post on this forum. It is always best to use 'post a new comment' to
Category: Uncategorised

Replies: 2

Last updated: 17 January 2011
Andy Parkin on 14 January 2011

Category: Uncategorised

Replies: 1

Last updated: 16 January 2011

Article in January edition of Leukemia
by sandy craine (Jan 16)

Dear Andy... thanks as ever for the links to interesting publications and articles... I have uploaded the link - as PDF- on the home page

Best.... Sandy

by Andy Parkin (Jan 14)

I don't think the following article has been highlighted yet on the Forum postings . It appears in the January 2011 edition of Leukemia

"Seeking the causes and solutions to imatinib-
Category: Uncategorised

Replies: 1

Last updated: 16 January 2011
Jojo on 12 January 2011

Category: Uncategorised

Replies: 7

Last updated: 19 March 2011

lurking
by Jojo (Mar 19)

sorry Ali been a tad slow in replying. Thanks for your e-mail - will be in touch soon.

by Ali Loram (Feb 10)

Hi, I live not too far away from you in Devon. if you would like to meet up for a chat you could e mail me ali@loram.eclipse.co.uk

hope things are settling down for you.

All the best

by Jojo (Feb 10)

Thank you all for your replies and shared stories - it really does help. Unfortunately I couldn't make the conference but I am glad that many did and found it helpful. Jacky - I live in

by Richard42 (Jan 17)

Hi

My story also not that different and I wanted to echo some of the things Sandy says.

I was diagnosed in May 09, at age 42. I have two children then aged 7 and 9. I
Category: Uncategorised

Replies: 7

Last updated: 19 March 2011
bobosbo on 10 January 2011

Category: Uncategorised

Replies: 3

Last updated: 10 January 2011

MMR at last
by david_a (Jan 10)

Really pleased for you. I had similar news today with a PCR of 0.07%.

All the best!

by Steven Davies (Jan 10)

Hi Bob.

What fantastic news, Carol & I are so happy for you.

You must celebrate tonight for sure. You must be over the moon at that great result & reaching MMR.

Enjoy your

by lynnsch (Jan 10)

The wonders of Dasatinib, enjoy your celebration tonight!

Lynn x

by bobosbo (Jan 10)

Had a call earlier from Stoke Mandeville Hosp, my last Pcr result shows a drop to 0.06, I have finally reached MMR, & got that elusive extra zero. Not sure who was more excited, me or my
Category: Uncategorised

Replies: 3

Last updated: 10 January 2011
Janet on 4 January 2011

Category: Uncategorised

Replies: 6

Last updated: 17 January 2011

PCR sensitivity - maths question
by Janet (Jan 17)

Hi Sandy - congratulations on the continuing PCRU - maybe I'll get there sometime....sigh...:-)

No, I won't be at the seminar this year - father-in-law is 84 on Friday so there is a

by sandy craine (Jan 16)

Hi Janet.... my PCR's tests continue fail to show any presence of bcr/abl- as should be the case post SCT and as I hope it remains in the future.

It would be great to meet up again, as it

by fehr (Jan 13)

I am consistently being told 0.002% by Hammersmith, which I make a 4.8 log reduction. I guess your maths is right.

John

by Janet (Jan 11)

Dear Sandy and Andy

Thank you for your replies - good to hear from you. I'm really pleased by this result, 3.9log is the best so far by a long way. I just like to try to puzzle the
Category: Uncategorised

Replies: 6

Last updated: 17 January 2011
jolanda on 4 January 2011

Category: Uncategorised

Replies: 7

Last updated: 7 April 2011

1 year with CML
by jolanda (Apr 7)

I am now on 50 mg Sprycel and still have low platelets (15) should be 140-450 and hemogobine 5,4 (should be 8-12). If the counts are still low on fridayI will get a bloodtransfusion. Wbc still

by sandy craine (Feb 22)

Dear Jolanda, I am sure it will be fine to take the 50mg dose for just 5 days. I hope you are allowed to see if 70mg Sprycel will control your CML and give you an optimal response before

by jolanda (Feb 21)

I am back on low counts, 49 rbc. So they reduced my Sprycel for 70 mg, but sadly they could not get the pills of 20 mg, so i am now on 50 mg for about 5 days, hope it will not be a problem.

by jolanda (Jan 26)

Sandy, thanks for your support. Next wednesday, i hear if my bloodcounts will be ok. I am very nervous about it, but i still have faith in the sprycel.

Gr. Jolanda
Category: Uncategorised

Replies: 7

Last updated: 7 April 2011
Pennie on 31 December 2010

Category: Uncategorised

Replies: 1

Last updated: 1 January 2011

happy healthy 2011
by lynnsch (Jan 1)

I hope we meet again in 2011! I believe another coffee in Croydon is in order. Or maybe a glass of the good stuff.

Happy New Year and I hope you are well

Lynn x

by Pennie (Dec 31)

Wishing everyone a Happy healthy 2011.

ATB

Pennie.
Category: Uncategorised

Replies: 1

Last updated: 1 January 2011
Bill on 31 December 2010

Category: Uncategorised

Replies: 2

Last updated: 1 January 2011

Question regarding results
by Bill (Jan 1)

Hi Zavie, hope you had a great new years eve! Thanks for the response put my mind at rest. Also it helped explain why some of the peoples readings on the forums have more decimal places. It is the

by zaviemiller (Dec 31)

Hi Bill,

You are doing simply fantastic. As good as it gets.

The reason that you bounce in and out of PCRU (0.000) is due to the sensitivity of the PCR test that is being done at your facility

by Bill (Dec 31)

Hello All,

Merry Xmas and hope you are all prepping for a good new year!

I have a question regarding BCR/ABL Results. I had what appears to be a bit of an increase in my last results in the
Category: Uncategorised

Replies: 2

Last updated: 1 January 2011
alison28 on 31 December 2010

Category: Uncategorised

Replies: 10

Last updated: 5 January 2011

confused and scared
by stella (Jan 5)

Hi Alison,

We are in the same boat! I was diagnosed in June '09 and am responding well to Glivec. For the last 2 of my 8 weekly checks I've been 'hovering above zero'.

My

by CS (Jan 5)

Ps Congratulations on getting married!! :-)

by CS (Jan 5)

Hi Alison,

I am in a similar situation, my husband and i got married last year too and would love to have children!! it is on my mind a lot and understand how difficult it is! my specialist has

by Jojo (Jan 2)

hi Alison

Glad to hear your wedding and honeymoon have gone so well - I was only wondering about you the other day as I knew you were hoping to get married. I don't know much about the
Category: Uncategorised

Replies: 10

Last updated: 5 January 2011
michelle on 29 December 2010

Category: Uncategorised

Replies: 7

Last updated: 3 February 2011

Mannesium bath oil?
by Olivia (Feb 3)

I've been using it for about a month now, and think it is helping. My leg cramps have been a little easier than previously, I think - at least I haven't been woken up by them

by sandy craine (Feb 3)

Hi Alistair... looking forward to the 3 month data from your phase 1 trial ;o))) this might be the start of something very helpful for cramping side effects of I (Glivec).

Sandy

by Alastair C (Feb 2)

Hi all,

just back from my 3 monthly appointment - still PCRU at 0.00% BCR/ABL - 21 months now.

The hospital are doing a serum magnesium on the bloods taken today, and happy to do it

by sandy craine (Jan 6)

Dear Alistair,

firstly thank you for ordering your magnesium oil via 'easyfundraising.co.uk'..... and for helping to raise funds for the CML Support Group: it is really appreciated.
Category: Uncategorised

Replies: 7

Last updated: 3 February 2011
michelle on 29 December 2010

Category: Uncategorised

Replies: 1

Last updated: 4 January 2011

Is Cranberry Juice with Glivec ok?
by sandy craine (Jan 4)

Dear Michelle

I am sure cranberry juice is not contraindicated.. so do not worry. As far as I am aware the only juice that you should not drink is grapefruit as this seems to increase the plasma

by michelle (Dec 29)

Hi I just wanted to see if any of you knew if it was ok have cranberry concentrate 100% pure and no sugar added with Glivec? I have had a UTI infection and I am on antibiotics but my GP said drink
Category: Uncategorised

Replies: 1

Last updated: 4 January 2011
david_a on 10 January 2011

Category: Uncategorised

Replies: 5

Last updated: 11 January 2011

PCR and BMB results 6 months in
by zaviemiller (Jan 11)

Hi David,

Well done. Could you send me your email address zmiller@sympatico.ca

This is just the beginning. There is plenty of time to get to PCRU. Just look at my signature. I've

by zaviemiller (Jan 11)

YAHOOO!!! YIPPEEE!!!

Number 1375 in the Zero Club

Zavie

by vickiep (Jan 10)

Yippee...you're doing really, really well!!!

xx

by lynnsch (Jan 10)

That is fantastic new David! What a great way to start 2011.

Lynn
Category: Uncategorised

Replies: 5

Last updated: 11 January 2011
cousineg on 27 December 2010

Category: Uncategorised

Replies: 1

Last updated: 27 December 2010

Holiday food precautions for CMLers
by jackieb38 (Dec 27)

Does anyone know if it is ok to use grapefruit in skincare products?

Jackie

by cousineg (Dec 27)

I wish you all a Happy New Year. During the holidays, we

tend to indulge in a great variety of foods. However, several fruits can cause

problems and thus CMLers should not drink
Category: Uncategorised

Replies: 1

Last updated: 27 December 2010
cmlblogger on 7 January 2011

Category: Uncategorised

Replies: 10

Last updated: 26 January 2011

Mutation and increased PCR
by cmlblogger (Jan 26)

Hi Ali - all ok really been on Dasatanib since Thursday had some reactions to it but slowly improving.

Sorry we missed each other, i think I heard you being called, but then I got the call to

by Ali Loram (Jan 26)

Hi Rob, I am just wondering how you got on at HH last week? It would be good to know what the next course may be for you and I do hope all went well? I hope funding doesn't become a problem. I

by sandy craine (Jan 16)

Dear Ali,

please see home page for summary and link to article using data from the BELA trial of bosutinib.

Sandy

by cmlblogger (Jan 11)

Ali - BTW The drug is called Bosutinib with a u , search with that and you get plenty of info

rob
Category: Uncategorised

Replies: 10

Last updated: 26 January 2011
DavidABall on 26 December 2010

Category: Uncategorised

Replies: 33

Last updated: 26 February 2011

Imatinib Resistance/Intolerance
by John M (Feb 26)

Well I can suggest a few things...

Wishing you a good match.

You are worth every bit of the care and attention you will receive.

Wishing you a safe journey. Strength in the tough times, joy

by DavidABall (Feb 22)

Started transplant proceedings today. What else is there to say ?

by DavidABall (Feb 18)

Hello to all,

Thank you as always to everyone who has shared their stories and offered their advice. As Lisa explained the operation which was originally for a suspected appendicitis took a

by John M (Feb 8)

Hello Lisa,

First of all, I hope David is feeling a bit better by the time you read this? I know everyone who reads your message will wish him better.

It's unfair, but David is getting the
Category: Uncategorised

Replies: 33

Last updated: 26 February 2011
belljc on 26 December 2010

Category: Uncategorised

Replies: 2

Last updated: 26 December 2010

Blood Count Interpretation
by belljc (Dec 26)

Thanks. Yes, many have told us we need to turn to the ocologist but he's not willing to project (for what appear to be well-intended reasons). The options you list are not open to

by michael (Dec 26)

Only a Specialist CML consultant with a full medical history,with up to date blood and marrow results could give you the information you want.

There are other CML drugs newer and more

by belljc (Dec 26)

My mom was diagnosed with CML two years ago. She was not able to tolerate Glevek and Hydroxyurea. She's been NOT treating her CML now for two weeks during which her white blood cell counts went
Category: Uncategorised

Replies: 2

Last updated: 26 December 2010
Barbs on 24 December 2010

Category: Uncategorised

Replies: 1

Last updated: 24 December 2010

Merry Christmas!
by Stuart Johnston (Dec 24)

Wishing everybody a super Christmas.xxx

by Barbs (Dec 24)

Just to wish you all a very merry Christmas & a happy & healthy 2011!

Who knows - it may be the year of the CML cure!

XXX
Category: Uncategorised

Replies: 1

Last updated: 24 December 2010
sandy craine on 22 December 2010

Category: Uncategorised

Replies: 2

Last updated: 4 January 2011

video interview with Dr. Rosti
by sandy craine (Jan 4)

Hi Pennie... sorry for the late reply but I have unfortunately had flu, so I have not been doing my usual job.

I am not sure why you could not access the link to Dr. Rosti video ... it

by Pennie (Dec 23)

Hi Sandy I don't seem able to access this video. Is there somewher we have to log on or register to view?

All the best for the holidays to you and the family

Pennie.

by sandy craine (Dec 22)

Another interesting video from ASH: an interview with Dr. Gianantonio Rosti .

http://oncologystat.com/video/ASH_2010/Nilotinib_for_Myeloid_Leukemia.html;jsessionid=
Category: Uncategorised

Replies: 2

Last updated: 4 January 2011
Bill on 15 December 2010

Category: Uncategorised

Replies: 1

Last updated: 16 December 2010

Fathering a Baby on Glivec
by sandy craine (Dec 16)

Dear Bill... thanks for sharing your lovely uplifting news of the birth of your baby daughter. It will give confidence to lots of people who worry about birth defects from taking imatinib. As you

by Bill (Dec 15)

Hello everyone apologies for taking so long to post. I am on Glivec 400mg and was diagnosed with CML a few years ago and my results over the years after being awarded the magic "Zavie Number
Category: Uncategorised

Replies: 1

Last updated: 16 December 2010
ypoulton on 15 December 2010

Category: Uncategorised

Replies: 5

Last updated: 18 December 2010

glevec reduction
by ypoulton (Dec 18)

I am having a few problems with side effects so he suggested it, I have said no for the moment as he has put me on something for the nausea and sickness, I have been on glivec since april

by LizzieD (Dec 17)

Hi Yvonne

It is the first time I have posted anything on this site since I was diagnosed in September 09, although I have watched it regularily.

At first I had lots of side effects from the

by zaviemiller (Dec 16)

Hi Yvonne,

The only way you can be sure that it is OK to reduce your Gleevec to 300 mg is to have your serum level tested. If your serum level was at 1100 ng/ml on 400 mg of Gleevec, then it

by sandy craine (Dec 16)

Dear Yvonne... what is the reason for you to drop the dose? 400mg is the recommended standard. Are you suffering from side effects?

Sandy
Category: Uncategorised

Replies: 5

Last updated: 18 December 2010