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sandy craine on 24 October 2008

Category: Uncategorised

Replies: 7

Last updated: 28 October 2008

Would you like to help? - potential research study on early symptoms of CML
by sandy craine (Oct 28)

For those of you who have requested email contact for Dr. Kapari ......
Tel: 0207 188 0910

email: marcia.kapari@iop.kcl.ac.uk
Sandy

by keith Pratt (Oct 26)

Hi Sandie

You can count me in but that week is out for me as in Snowdonia visiting family. You can pass on my e-mail address if you wish.

Have fun

Keith

by karen (Oct 26)

Hi there
I can't make it to London that week but would be more than happy to take part via email if thats possible?
K

by Janet (Oct 26)

Hello Sandy
Is there anything that can be done from a distance to help with the research? I live too far from London to be able to come up for meetings, to say nothing of not being able to get away
Category: Uncategorised

Replies: 7

Last updated: 28 October 2008
johnh on 23 October 2008

Category: Uncategorised

Replies: 2

Last updated: 23 October 2008

Milk Thistle (Silymarin) for Liver Protection?
by sandy craine (Oct 23)

Hi John,

I would say your wife has it right. Milk thistle has not been contra-indicated with Glivec, and lots of people with high liver enzymes have found it really useful.

Good to hear

by valandi (Oct 23)

There is some info at http://www.cmlsupport.org.uk/?q=node/913
Rgds
Phil Greenwood

by johnh (Oct 23)

I have just received my latest BCR result and am pleased to report that it remains at a healthy ZERO (that's two years now!). However, I was told of some evidence of liver stress (high enzyme count
Category: Uncategorised

Replies: 2

Last updated: 23 October 2008
tkrober on 19 October 2008

Category: Uncategorised

Replies: 7

Last updated: 26 October 2008

Ten year anniversary
by keith Pratt (Oct 26)

Hi Ken

Well done my friend, great to hear from one of the STI pioneers. Perhaps we should form a sub group now of veteren cml fighters ? I dx at 51, and now thanks to you pioneers, I am a

by sandy craine (Oct 22)

Many many congratulations Ken on reaching this importantand significant anniversary. Thanks for sharing your thoughts and experience on this forum.
best wishes,

Sandy

by jaynelister (Oct 21)

Hi Ken,
Congratulations on reaching this milestone, this is fantastic news!
You sound like you dont let anything hold you back and Im sure that many have alot to learn from you.
Well done!
Much love

by tkrober (Oct 21)

Ken Roberson

Hi Tracey,
Thanks for the note.
I would be pleased to communicate with you as I serve as a volunteer Peer Educator for adult CML patients with the Leukemia and Lymphoma Society,
Category: Uncategorised

Replies: 7

Last updated: 26 October 2008
Flora on 17 October 2008

Category: Uncategorised

Replies: 2

Last updated: 7 November 2008

stress
by Tufty3 (Nov 7)

Hi Flora
Sorry to hear about your recent events and concerns about the affect of stress on CML. I have to say, it is something I have thought about many times, since my diagnosis in January 2001.

by Janet (Oct 17)

Hi Flora
I am so sorry you have been under so much strain - I understand completely! 3 months after I was diagnosed my father was admitted to hospital and he died 2 months later. So I went through a

by Flora (Oct 17)

Does periods of prolonged stress affect cml?
I have been so very tired since mid August when I had to deal with the sudden death of my brother. Six weeks later my father-in-law passed away aged
Category: Uncategorised

Replies: 2

Last updated: 7 November 2008
kiruba ganesh on 16 October 2008

Category: Uncategorised

Replies: 1

Last updated: 22 October 2008

fish report
by sandy craine (Oct 22)

Dear Kiruba,
It may well be that you will need to switch to another TKI (dasantib or nilotinib)given that your PH+ cell poplulation has not reduced by any significant % over the last 16 months of

by kiruba ganesh (Oct 16)

dear zavie,
AT the time of diagnosis my fish test shows that 85% positive before 1 1/2 year.afte one year taking gleevec(400mg) FIsh was 84%. after 1 1/4 year taking gleevec of 600mg my fish was 85
Category: Uncategorised

Replies: 1

Last updated: 22 October 2008
amanda on 15 October 2008

Category: Uncategorised

Replies: 2

Last updated: 21 October 2008

For Fiona - Pregnency
by SwanValleySue (Oct 21)

With your levels rising - does that mean you think that you are becoming resistant to glivec after 6 years.
Sue

by cassidy62 (Oct 16)

thanks amanda, thats really encouraging. I went to my consultant today and had a good discussion and i am doing really well, we have decided to put me up to 800mg a day and have a break in April so

by amanda (Oct 15)

Hi Fiona
I am amanda and 2.5 yrs ago i had my little baby boy Rhys.
I was DX nearly six years ago and came off my gilvec for three months before trying for a baby all went well.
I think your
Category: Uncategorised

Replies: 2

Last updated: 21 October 2008
kiruba ganesh on 14 October 2008

Category: Uncategorised

Replies: 3

Last updated: 16 October 2008

bone marrow
by kiruba ganesh (Oct 16)

dear zavie,
AT the time of diagnosis my fish test shows that 85% positive before 1 1/2 year.afte one year taking gleevec(400mg) FIsh was 84%. after 1 1/4 year taking gleevec of 600mg my fish

by tadlaw (Oct 15)

Hello,

My son has CML. He was recently switched from Imatinib (Gleevec) to Dasatinib (Sprycel.) At that point, our doctor advised us to check our other children for an HLA match as well.
While

by zaviemiller (Oct 14)

Hi Kirba,
It might be a good idea to see a (another) CML specialist for a second opinion. There are many other drugs that work where Gleevec doesn't.
In this day an age it doen't make sense to go

by kiruba ganesh (Oct 14)

dear all,

I had cml for past 1 1/2 years. I take 600mg gllivec till last month. but my doctor told that my fish test report shows any improvement. so he ask me to tissue matching test with
Category: Uncategorised

Replies: 3

Last updated: 16 October 2008
karen on 12 October 2008

Category: Uncategorised

Replies: 1

Last updated: 13 October 2008

Jaundice
by sandy craine (Oct 13)

Hi Karen,

maybe it would be helpful if you tried to support your liver with Milk Thistle which is a herb that is widely available and quite safe to take with Glivec.

Glivec is

by karen (Oct 12)

Hello all.

I have had a scroll through the discussion forums and I hope I am not doubling up on anything but has anyone had any problems with jaundice whilst on Glivec? I was diagnosed in
Category: Uncategorised

Replies: 1

Last updated: 13 October 2008
gymima on 9 October 2008

Category: Uncategorised

Replies: 8

Last updated: 5 December 2009

side effects dasatinib
by jacqui from Colchester (Dec 5)

Hi I have been taking dasatinib for 3 months and I havebeen fine - I do take supplements which I had to get agreed by my Consultants - I take omega 3,6,9, organic and evening primose and an Aloe

by gymima (Dec 3)

:-)

by vickiep (Nov 30)

Hi Gymima!!!!wink-wink, nudge-nudge!!!

Soo good to talk on the phone tonight...xxx

Vickie

by vickiep (Nov 30)

Hi Gymima,

Just wondering if you have any updates on the pain and insomnia? Amitryptaline now not working either, not til about 3.00 a.m. and I'm trying to get back to work at the moment with
Category: Uncategorised

Replies: 8

Last updated: 5 December 2009
angela on 9 October 2008

Category: Uncategorised

Replies: 1

Last updated: 10 October 2008

PCR result
by sandy craine (Oct 10)

Hi Angela.... what good news! and congratulations both for such a low pcr AND passing your exam ;o)
Best wishes,

Sandy

by angela (Oct 9)

Hi
I've just received my latest PCR result and it's the lowest it's ever been at 0.007 so I'm really pleased. I still try and keep myself fit, I play tennis about 3/4 times a week. I'm working
Category: Uncategorised

Replies: 1

Last updated: 10 October 2008
sandy craine on 9 October 2008

Category: Uncategorised

Replies: 2

Last updated: 9 October 2008

pregnancy
by cassidy62 (Oct 9)

Thanks Sandy for your quick response, i am hoping that i will get a break when i go next week as i am ready and have been in CCR since April. I am hopeful and it is good to know that others have

by sandy craine (Oct 9)

Hi,

It is not recommended that you become pregnant whilst taking Glivec. However some women have managed to have babies by stopping Glivec for some months and then managing their disease with

by sandy craine (Oct 9)

I have copied this new post from another thread as it might have been missed by some.
Sandy
Submitted by cassidy62 on Thu, 2008-10-09 00:19.
Hi i am new to all this but looking for some answers, was
Category: Uncategorised

Replies: 2

Last updated: 9 October 2008
Pennie on 8 October 2008

Category: Uncategorised

Replies: 2

Last updated: 3 November 2008

Impared glucose tolerance?
by ruth (Nov 3)

Hi
Hope this is of help ,

I have type 1 diabetes for approx 15 years.

When i started glivec i had to reduce my insulin quite a bit as i was always getting hypos. Long acting droped from

by sandy craine (Oct 9)

Hi Pennie.... good news that it is not diabetes ;o)

I am not sure however what 'impaired glucose intolerance' would mean...nor how is might be remedied.

Maybe you should take a look on

by Pennie (Oct 8)

Latest results show Blood sugar=6.5; glycated Hb within normal range, suggesting impaired

glucose tolerance rather than frank diabetes.
Not sure what this means any answers anyone please?
At
Category: Uncategorised

Replies: 2

Last updated: 3 November 2008
Ali Loram on 8 October 2008

Category: Uncategorised

Replies: 4

Last updated: 9 October 2008

Shared care and Q-PCR
by zaviemiller (Oct 9)

Ali,
Reducing the Gleevec dose to 200 mg daily should never be done unless you had serun level testing to confirm that the 200 mg dose for your body is the same as the 400 mg dose for the rest of

by zaviemiller (Oct 9)

Ali,
Reducing the Gleevec dose to 200 mg daily should never be done unless you had serun level testing to confirm that the 200 mg dose for your body is the same as the 400 mg dose for the rest of

by sandy craine (Oct 9)

For more information on PCR's go to the FAQ section on the left hand menu.
Here is a snip from the info on there which explains what PCR's are and what you should expect:
.....polymerase chain

by Michelle H (Oct 9)

Hi Ali,
Not sure if this helps, I'm very much learning all this stuff myself.
I found a telephone interview from Dr Druker (assisted getting Glivec on the market) kindly referred to by someone on
Category: Uncategorised

Replies: 4

Last updated: 9 October 2008
Pennie on 6 October 2008

Category: Uncategorised

Replies: 1

Last updated: 6 October 2008

Weight watchers - Keith
by keith Pratt (Oct 6)

Good start Pennie, you will be amazed at the amount of nice things to munch, that seemingly does you good, now I have to take my specs shopping as have to read every label!.

Maybe cutting down

by Pennie (Oct 6)

Hi Keith
Thanks for your help, pleased that Carole has found the Weightwatchers No Count diet system helpful. I will look into it.
Weigh in today showed that I have lost 2.5kg in 3 weeks, so on
Category: Uncategorised

Replies: 1

Last updated: 6 October 2008
Pennie on 6 October 2008

Category: Uncategorised

Replies: 5

Last updated: 7 October 2008

meeting Louise at Kings
by L0U (Oct 7)

Hiya Paul,
Kings is a great hospital isnt it !! I was 'lucky' enough to be transferred there following my diagnosis of CML at my local hospital. I spent a month at Kings & received great care

by L0U (Oct 7)

Thankyou Sandy , I really appreciate it !

Also thankyou for the advice regarding the Calcium Supplements.
Best Wishes,

Louise.

by sandy craine (Oct 7)

Hi Louise,

I am due to attend the European Leukaemia Net conference in France in mid October and will try to find out more about this sort of complication. One of the abstracts I looked at

by Paul C (Oct 7)

Hello to another Kings CMLer.
Good to hear that the CML is responding and that you have met up with Pennie who proved to be a valuable source of information when I was first diagnosed back in Feb04
Category: Uncategorised

Replies: 5

Last updated: 7 October 2008
Des on 6 October 2008

Category: Uncategorised

Replies: 6

Last updated: 9 October 2008

long term side effects of G|ivec - HH Survey
by angela (Oct 9)

Hi Rob
Would be nice to meet you on 5th. My appointment is at 11.45 and I'm always early for my appointments. So we should be able to meet up.
Take care
Angela

by cmlblogger (Oct 8)

but it was a lot!!
I will also be there on the 5th ISTR appointment at 11 ish
rob - http://cmlblog.spaces.live.com

by sandy craine (Oct 7)

Hi Des,

Maybe you could ask the HH patient support group to take this subject up with the Hospital managers? It is really costly. Otherwise you could ask if you could get a note from the

by Phil Poole (Oct 7)

I had a similar experience to the others above - Echocardiogram/Ultrasound, ECG found I had a low heart rate at 59 per minute. Told I must be fit! Eyesight test all OK. Dr. Marin started me on
Category: Uncategorised

Replies: 6

Last updated: 9 October 2008
Pennie on 3 October 2008

Category: Uncategorised

Replies: 6

Last updated: 6 October 2008

3 log reduction !
by sandy craine (Oct 6)

Hi Pennie,

I am due to attend the upcomong ELNet conference in Cannes on 17th... it is specifically for CML and I am pretty lucky to be able to get access to this medical conf.

I will

by Pennie (Oct 5)

Hi Sandy ... Yep the tests for diabetes were done last week, and I am having a repeat 'starving' blood test tomorrow am. There seems to be some evidence that Gleevec keeps cholestrol and blood

by sandy craine (Oct 5)

Dear Pennie... that is really good news! Blood sugar levels can be effectively controlled by changing your diet..... did your doctor check for diabetes? I hope you can continue with Tasigna as it

by SwanValleySue (Oct 5)

the reason to keep of shellfish prawns etc is that they have a very high sodium level
You can have any fish with gills but not that of Salmon and Tuna as they are aslo high in sodium
If you look at
Category: Uncategorised

Replies: 6

Last updated: 6 October 2008
tadlaw on 1 October 2008

Category: Uncategorised

Replies: 8

Last updated: 7 October 2008

Reduced Intensity Conditioning Transplant
by tadlaw (Oct 7)

That's great information. I'll be visiting Hutch in a week. We're not making any decision on bmt yet, so I'll have plenty of time to head over to Minnesota as well! :-)
Much thanks.
Regards,

by sandy craine (Oct 6)

Hi Tracey,

There is a high level translant centre at University of Minnesota... see link below... who are at the cutting edge and have been doing both RIC sct's and umbilical cord as source of

by tadlaw (Oct 5)

Thanks for sharing your story Susan. I will keep praying that "cured" is the word to describe you, even if your consultant won't make that pronouncement just yet.
The information about the mini

by skiinglaketahoe (Oct 1)

Hi Tracey,
So sorry to hear about your son, I hope that the treatment goes really well.
I have had a reduced intensity transplant, almost 1 year ago and for me it was a very easy procedure with
Category: Uncategorised

Replies: 8

Last updated: 7 October 2008
chattena on 30 September 2008

Category: Uncategorised

Replies: 1

Last updated: 30 September 2008

Support Group
by sandy craine (Sep 30)

Hi Alison,

good to see another support group being set up. I agree it is important that should groups should be patient led.
Sandy

by chattena (Sep 30)

Update for Yorkshire Cancer Network CML patients.

I have now completed the Indepenent Nurse Prescribing course and my next project is to facilitate the development of a CML support group.
Category: Uncategorised

Replies: 1

Last updated: 30 September 2008
sandy craine on 27 September 2008

Category: Uncategorised

Replies: 8

Last updated: 30 September 2008

2 Year Old Son with CML chronic phase- post from another thread
by Michelle H (Sep 30)

Cell count down to 82.3. Relief for another week.

by Michelle H (Sep 30)

Hi Tad,
Sorry to hear about Ben. It must be incredibly hard supporting Ben through the various procedures and helping him deal with this emotionally.
If an expert in the field is happy with his

by jaynelister (Sep 30)

Hi Tadlaw,
Im so sorry to hear that Ben has been diagnosed with CML.
I think that what you are doing at the moment is exactly the right thing to do. Take as much advice from as many different people

by Michelle H (Sep 29)

Hi Jayne,
Thank you for your reply and completing my registration for the Children with CML support.
I'm hoping the white cell count will be down again tomorrow.
I don't know when we will take out
Category: Uncategorised

Replies: 8

Last updated: 30 September 2008