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Andytyneside on 9 November 2008

Category: Uncategorised

Replies: 3

Last updated: 16 November 2008

Very dry skin after BMT
by Andytyneside (Nov 16)

Thanks for the comments.
I haven't used Diprobase, I'll ask about it as I'm back at hospital later in the week.
My ciclosporin is being reduced and I think the dryness is being caused by the GvHD

by jaynelister (Nov 13)

Hi there, My Son had this problem as well post BMT. I think its quite a common one. We were told not to use anything scented, ideally aqueous cream. I also used diprobase on him and that seemed to

by kestrel (Nov 12)

Can you get Diprobase cream? My foster son had a BMT about the same time as you and was given Diprobase in hospital. Maybe it's available on prescription? Ask at your hospital. He no longer uses it

by Andytyneside (Nov 9)

6 months ago now, I had a MUD bone marrow transplant. Everything was going fine until 2 weeks where my skin has become very dry, itchy and flaky. Specialist has recommended moisturising cream, but
Category: Uncategorised

Replies: 3

Last updated: 16 November 2008
sandy craine on 9 November 2008

Category: Uncategorised

Replies: 2

Last updated: 12 November 2008

UK Seminar Sat 15th November
by sandy craine (Nov 12)

Hi Pennie,

I would email Mandy (prof. Apperley's sec) to make sure your registration went ahead and they have taken into account your dietary needs... I emailed her last week and she responded

by Pennie (Nov 10)

Sandy
Could you clear something up for me please? No info recieved re places booked, also Gluten free food availablity. Plus telephone number on the registration page dose not respond !!!
Thanks

by sandy craine (Nov 9)

There are approximately 28 places left for the seminar... so if some of you want to attend then you still have time to register.
CML support would like to invite all delegates for a post conference
Category: Uncategorised

Replies: 2

Last updated: 12 November 2008
Vangogh on 3 November 2008

Category: Uncategorised

Replies: 2

Last updated: 4 November 2008

New to CML
by sandy craine (Nov 4)

hello Tony and welcome to this forum. You are right to be really encouraged by your latest results... 13% PH+ represents a major cytogenetic response and it is within 3 months of starting Glivec

by tadlaw (Nov 4)

Hello Tony,

Just sending out some positive thoughts to you with this note. My son (age 10) was diagnosed with CML in May 2008. It seems you're responding well to Gleevec. You should be

by Vangogh (Nov 3)

Hi Everybody

Just to introduce myself. I was diagnosed in June this year after feeling fairly unwell for about about a couple of months, and losing 2.5 stone in weight. After the usual blood
Category: Uncategorised

Replies: 2

Last updated: 4 November 2008
tomall on 3 November 2008

Category: Uncategorised

Replies: 1

Last updated: 4 November 2008

breakthrough?
by tadlaw (Nov 4)

Hi Tom,

I read the study and it looks promising. Well, so much is more promising with leukemia these days. Recently, my father attended a conference in Boston sponsored by the European

by tomall (Nov 3)

hello im tom i was diagnosed with cml last july.
i read this today.
LEUKAEMIA sufferers were given fresh hope yesterday with a major DNA breakthrough.
The cancer is caused by abnormal production of
Category: Uncategorised

Replies: 1

Last updated: 4 November 2008
sandy craine on 31 October 2008

Category: Uncategorised

Replies: 2

Last updated: 7 November 2008

UK Seminar
by sandy craine (Nov 7)

Hi Phil,

I have been in contact with the organisers and they say there are 28 places left. 130 is their limit. So if you want to register then click on the link on the left hand side box and

by Phil Poole (Nov 5)

Could you please let me know if all the places have gone, or are there any places left?
Thanks in advance,
Phil.

by sandy craine (Oct 31)

I received confirmation of my registration at the UK CML patient seminar today. Hopefully all others have too?

From the programme I see they have managed to get Prof.Dina Ben Yahuda to attend
Category: Uncategorised

Replies: 2

Last updated: 7 November 2008
Michelle H on 28 October 2008

Category: Uncategorised

Replies: 2

Last updated: 28 October 2008

Wanting to confirm if low dose Glivec leads to resistance
by sandy craine (Oct 28)

Hi Michelle,

the recommended dose of imatinib for chronic phase CML is 400mg. If this is well tolerated and the patient takes the drug consistantly there is every reason to be confident that

by tadlaw (Oct 28)

Dear Michelle,
It's true that too low dose of Gleevec may lead to resistance. That's why some CML patients who have only minimal residual CML which is not detectable elect to stop taking the meds

by Michelle H (Oct 28)

I understood that if a CML patient was on too low of a Glivec dose that it could lead to a resistance. I'm now trying to find where I found this information
I am still new to CML as a carer and was
Category: Uncategorised

Replies: 2

Last updated: 28 October 2008
Flora on 27 October 2008

Category: Uncategorised

Replies: 6

Last updated: 8 November 2008

flu jab
by clare (Nov 8)

im the same as kathy i was told to have the flu jab asap

by Debbie (Oct 29)

Hi, I have a flu jab every year since dx. Specialist adviced it. It also depends on what type of people you come in contact with. My daughter works in childcare, so she can catch most things going

by SwanValleySue (Oct 29)

and as a CML person I will not have another jab as last season had a jab and was so ill for at least a week.
Sue

by kathy (Oct 28)

Hi guys,i was told to have one as we have low immune .
Category: Uncategorised

Replies: 6

Last updated: 8 November 2008
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