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spence11 on 2 May 2012

Category: Uncategorised

Replies: 4

Last updated: 7 May 2012

More pcr confusion...
by sandy craine (May 7)

Hi Nigel,
FISH tests only up to 200 cells - it is thought to have a false/positive result- so in my view it is pretty inaccurate compared to RT-QPCR- but FISH is fine for the initial testing when

by nigel (May 7)

Morning,
Sorry to hear the confusion re the results so far, it is as I have found before very frustrating. I would look very much at the fact still falling.
A question please, why is a higher PCR

by spence11 (May 2)

Hi Sandy

You do make me feel so much better, thank you.

Yes, all those statements are all true.

I don't want to criticise the nurse as she has been so incredibly supportive and

by sandy craine (May 2)

I am not surprised your are confused! First- you need to see the consultant in NOT the nurse in future. She obviously needs to do a bit more study regarding pcr, cytogenetices etc.... and what zero
Category: Uncategorised

Replies: 4

Last updated: 7 May 2012
blueyes74 on 1 May 2012

Category: Uncategorised

Replies: 5

Last updated: 2 May 2012

London Calling
by blueyes74 (May 2)

Hey Sandy,

Thanks for that info. You really do know your stuff. Thanks so much for sharing.
Andy

by sandy craine (May 2)

Hi Andy,
Median age at diagnosis is around 55 - although this figure seems to differ depending on what document you are reading.

This means there are a lot more people diagnosed under that age

by blueyes74 (May 1)

Hi,

I was diagnosed back in March 2009 at the grand old age of 34. What concerned me back then was hearing from the oncologist about how unusual it was so see somebody of my age with CML.

by (May 1)

Hi Andy
I am not from London but was just reading your post and thought I would let you know that like you I was 37 when I was first diagnosed with cml - I am now 48 and thanks to Glivec, Nilotinib
Category: Uncategorised

Replies: 5

Last updated: 2 May 2012
EmChops on 30 April 2012

Category: Uncategorised

Replies: 2

Last updated: 6 May 2012

Philadelphia Negative Abnormal Cytogenetic Clone
by EmChops (May 6)

Thank you so very much Sandy. I really appreciate you taking the time to respond to me.

I am feeling a bit better about things but wish i was a Haematologist so i could understand what all

by sandy craine (May 1)

Dear Emma,
I understand why you are worried and 'scared' by the abnormal clones in Ph neg. cells. This phenomena has been documented over a long period since imatinb therapy was introduced and it is

by EmChops (Apr 30)

On my 12 month visit to my consultant two weeks ago, he said that my bone marrow aspirate results showed I am still in MMR, hooray, just waiting for result from Hammersmith to confirm levels. PCR
Category: Uncategorised

Replies: 2

Last updated: 6 May 2012
jacqui from Col... on 29 April 2012

Category: Uncategorised

Replies: 1

Last updated: 29 April 2012

Dasatinib
by bobosbo (Apr 29)

Jacqui,

This system does really seem a waste of expensive drugs.

When I switched from Imatunib to Dasatinib, my next 3 months supply of Imatunib had been delivered 3 days before the

by jacqui from Colchester (Apr 29)

Hi everyone
Just voicing a point of view.
I was on dasatinib for just over two years when i developed a plural effusion and I am now taking Imatinib. I had a months worth of drugs left over and
Category: Uncategorised

Replies: 1

Last updated: 29 April 2012
Rob W on 23 April 2012

Category: Uncategorised

Replies: 2

Last updated: 2 May 2012

Diagnosed One Year Ago At 22 - My First Post
by blueyes74 (May 2)

Hey Rob,

I was diagnosed in March 2009 at 34 years old. At the time it felt really odd for me as there was nobody in my age group whenever i went to hospital. Three years on and i still don'

by sandy craine (Apr 24)

Hi Rob, welcome to this forum and thank you for posting such a sensitive and positive message. I too hope it will encourage others, especially those who have been newly diagnosed.

I am sure

by Rob W (Apr 23)

Hi everyone,
I was diagnosed with CML in March last year at the age of 22, less than a week after proposing to my girlfriend. I had lost weight and was sometimes lethargic, both of which I put down
Category: Uncategorised

Replies: 2

Last updated: 2 May 2012
Johannah on 22 April 2012

Category: Uncategorised

Replies: 1

Last updated: 23 April 2012

Cortisone Injections
by Stuart Johnston (Apr 23)

Hi Johannah.

With refererence to your concerns.

I have bad arthitis and cml.

I have had numerous steroid injections and have had no implications regarding the cml.

To put it

by Johannah (Apr 22)

Hi, I have been having severe pain in my ribs for many months and have tried numerous pain killers/anti inflammatory medication. Following a bone scan, I have been told I have arthritis in my ribs
Category: Uncategorised

Replies: 1

Last updated: 23 April 2012
sandy craine on 19 April 2012

Category: Uncategorised

Replies: 2

Last updated: 19 April 2012

leg pains and imatinib-Mark and Don
by mneale (Apr 19)

Hi Sandy, Thank you for your reply and advice, it was greatly appreciated. Whilst at my last appointment with my consultant we did talk about nilotinib, and the possibility of going onto this, if

by Don (Apr 19)

only 7 more weeks :)
Don

by sandy craine (Apr 19)

Hi both Mark and Don,
regarding leg pains and imatinib (Glivec)... this is a very common side effect in the first 3 months of starting therapy with imatinib. I suffered this effect for exactly 12
Category: Uncategorised

Replies: 2

Last updated: 19 April 2012
chrissie on 18 April 2012

Category: Uncategorised

Replies: 3

Last updated: 24 April 2012

WIN trial
by chrissie (Apr 24)

Keeping fingers very tightly crossed for you and the other patients on this trial. Thanks for updating us.

I still trot along to my local hospital (Exeter) sometimes weekly and sometimes

by sandy craine (Apr 23)

Thanks Bryan for your update. There are many of us that are curious about this trial- I wish you good luck for your 6 month results.

I really hope this vaccine live up to its promise- best of

by bc (Apr 23)

Just to let you know i'm still on the trial. Have had 5 injections so far with the 6th on Wednesday.
As far as results go, chatting to the consultants at Hammersmith, they said in the other patients

by chrissie (Apr 18)

Just wondering how anyone on this trial is getting on and hoping for some exciting news.

best wishes to all

Chrissie
Category: Uncategorised

Replies: 3

Last updated: 24 April 2012
sandy craine on 17 April 2012

Category: Uncategorised

Replies: 4

Last updated: 19 May 2013

iPad/iPhone Apps for CML
by sandy craine (May 19)

Another one:
http://www.medivo.com/cml/

by sandy craine (May 19)

The CML Society of Canada have recently developed a PCR tracker App for iPhone/iPad users. I think it is also available it for android too but not sure if/when that is available.
See link here: http

by David Fitz (May 15)

They haven't even updated the app for the iPhone 4 retina screen, never mind the iPhone 5 screen size.
I think that a well designed spreadsheet is probably the better solution in the long run - at

by Steven Davies (May 10)

Hi Unfortunatly it the app crashed recently so today I have put the last 7 1/2 years of PCR's back in but i was unable to register o.ooo so I have reported both problems to Novartis and hopefully
Category: Uncategorised

Replies: 4

Last updated: 19 May 2013
sandy craine on 16 April 2012

Category: Uncategorised

Replies: 5

Last updated: 17 April 2012

another year!
by Richard42 (Apr 17)

And thanks for all your efforts. Here's to more successes in the future...

by marsy (Apr 16)

Hi Sandy,
Happy Birthday.....I'm sure you'll have a good one and on behalf of everyone who logs into this site just wanted to say 'you are an inspiration to us all'.

Thanks for all your hard

by Don Adkins (Apr 16)

Congrats Sandy! You have done so much already to keep the "light" on this disease. May you live a long, healthy, and joyful life..
From across the pond,

Don

by RodM (Apr 16)

Congrats, Gives all us newbie's hope!
Rod
Category: Uncategorised

Replies: 5

Last updated: 17 April 2012
ni2i on 16 April 2012

Category: Uncategorised

Replies: 5

Last updated: 19 April 2012

still not at ccr
by sandy craine (Apr 19)

Hi Naomii,
I think it's a good idea to push for the PCR results after 4 or 5 weeks. PCR tests do not take 3 months to do. In a busy hospital lab like Hammersmith they usually have them back within 4

by ni2i (Apr 18)

Hi Sandy,
I was told that it takes 3 months for the results to come back. What i am going to do is wait 4 weeks then give them a call to see if they are back. I think my doc wants me to wait another

by sandy craine (Apr 17)

Hi Naomii,
I am not sure why you will have to wait for 3 months for a pcr.? It takes around 4 weeks for most of us to get results from a test done on a peripheral blood sample- rather than wait for

by ni2i (Apr 16)

My PCR was done the same day as my BMA, but the results were lost, i now have to wait 3 months for the next result arrrgggghhhhh. never mind i'm sure the next result will bring me some good news and
Category: Uncategorised

Replies: 5

Last updated: 19 April 2012
sandy craine on 15 April 2012

Category: Uncategorised

Replies: 2

Last updated: 16 April 2012

CMLSg's comment on FAD: 1st line use of dasatinib, nilotinib, imatinib. CMLSg will not appeal this FAD.
by sandy craine (Apr 16)

Hi Rod,
Thanks for your input. I can assure you that we have asked, and will continue to ask, for clarification on the future position of Spirit 2 trial patients, as well as other issues. To date,

by RodM (Apr 16)

For those of us on Dasatinib as part of the Spirit 2 trial, the wording of the FAD appears to say that we should be permitted to continue on the drug after the trial ends. That is 5 years from now,

by sandy craine (Apr 15)

In the circumstances we feel we have done all we can and that an appeal against the current FAD is not a positive option for us.

We feel our focus must now shift to ensuring that applications
Category: Uncategorised

Replies: 2

Last updated: 16 April 2012
Anonymous (not verified) on 15 April 2012

Category: Uncategorised

Replies: 4

Last updated: 8 May 2012

Price of Generic Drug is just 10% of the Cost- Rafaye
by Gerry (May 8)

I doubt there would be an issue with Patent, but if you are taking more than 3 months worth of medication you will need to declare it. Contact your local Australin Embassy to find out exactly what

by Refaye (May 5)

I am planning an extended trip to Australia around 6months. So would it be better to stock up on the medication from india itself? Or would they prohibit bringing the drug from india since its

by Gerry (Apr 17)

Hi

In Australia we have a similar system to the English one. Gleevec, Tasigna and Sprycel are all covered by our Pharmaceutical Health Scheme.
Regards

Gerry

by sandy craine (Apr 15)

Rafaye, in the UK the cost of medication is covered by the NHS - regarding CML drugs. Imatinib 400mg is first line therapy and has been approved as such since 2003. Nilotinib and dasatinib have just
Category: Uncategorised

Replies: 4

Last updated: 8 May 2012
Sam B on 13 April 2012

Category: Uncategorised

Replies: 1

Last updated: 14 April 2012

Nilotinib and palpitations
by sandy craine (Apr 14)

Hi Sam,
it might be that the palpitations you describe are caused by other things...i.e low HGB can cause the same effect- especially on lying down in bed. ... do you also have breathlessness? Low

by Sam B (Apr 13)

I have been taking Nilotinib for about a year now, when I first started taking the drug my life was very stressful and I started to get palpitations, I have reported these to my GP and also the the
Category: Uncategorised

Replies: 1

Last updated: 14 April 2012
Refaye on 11 April 2012

Category: Uncategorised

Replies: 3

Last updated: 15 April 2012

Stopping the drug - imatinib
by Refaye (Apr 15)

Hi Sandy,
Thanks for the Reply..
Regards

Refaye

by sandy craine (Apr 11)

Hi Refaye,
For the majority, yes as things stand at the moment your doctor is right. Imatinib (and other TKIs) needs to be taken regularly as prescribed and for the long term. When you say you are

by JeffMowatt (Apr 11)

Hi Refaye,
There was an encouraging post on this issue recently:
http://www.cmlsupport.org.uk/node/7319

by Refaye (Apr 11)

Hi All,
I am 30 Yrs Old and i have CML and have been taking imatinib for 8 months. Went thru the period of weakness and all hardships. Now i am quite healthy like a normal person. Is there any one
Category: Uncategorised

Replies: 3

Last updated: 15 April 2012
Hannah on 9 April 2012

Category: Getting help

Replies: 13

Last updated: 8 August 2015

2 month ago was diagnosed with CML - Submitted by Hannah on Sun, 08/04/2012 - Reposted from thread below
by Bmckenna (Aug 8)

Hi! I just read marilus comment . I'm newly diagnosed with CML . Found out when I went to hospital with bad side pain. I don't feel sick other than being really tired and nauseous plus I'm short of

by Richard (Jul 11)

I had never had it before I had CML, however, as I have fairly frequent heart procedures, which involve catheterisation, angiograms, angioplasty and stents, pericarditis is always a risk. Apparently

by nigel (Jul 10)

Hi Richard and all,
Just read you post, I have no heart issues that I know of and regard myself as fit, however 12 years ago did have Pericarditis, I was surprised to see you post. Is pericarditis

by Richard (Jul 10)

Welcome to this very exclusive club! You will find that they are a very intelligent and extremely kind group of people. It is not a club you want to join, but, once you qualify (as you have) you
Category: Getting help

Replies: 13

Last updated: 8 August 2015
nigel on 5 April 2012

Category: Uncategorised

Replies: 6

Last updated: 30 June 2013

Scuba Diving
by David Fitz (Jun 30)

I just did a days diving in Asia last week - no problems at all. My doctor (both oncologist and GP) were happy for me to give it a go, so long as I promised not to push myself as it would be the

by RodM (Jun 25)

Hi
Just for future reference of anyone else who is interested in Scuba Diving on TKIs.
I'm on Dasatinib, current PCR 0.17% IS, Dx Feb 2012, stable blood counts, no complications.
Diving

by nigel (Apr 8)

Hi Thanks Stuart and Sandy, the dive would be a couple of try dives thus 10 meters max, very helpfully, thank you for the info.
Nigel

by Stuart Johnston (Apr 8)

Hi Nigel

I was a diver prior to contracting Cml and then my other cancer.

If you are diving then the only issue I think that may be apparent would be as a result of depth,absorption
Category: Uncategorised

Replies: 6

Last updated: 30 June 2013
karen on 3 April 2012

Category: Uncategorised

Replies: 6

Last updated: 10 April 2012

Differing opinions
by sandy craine (Apr 10)

Good! I hope you can better tolerate this dose. but it is good to hear you are not without therapy while you wait for access to ponatinib
best of luck,
Sandy

by karen (Apr 10)

They are going to try 70mg of Dasatinib to try and reduce the pleural effusion and to keep me going

K

by sandy craine (Apr 7)

Hi karena.... what will you be treated with whilst you are waiting for ponatinib to come through?
Sandy

by karen (Apr 5)

Many thanks for both comments. I must admit I was scared after my appt at Kings and a lot happier after HH!

My bone marrow biopsies always come back clear and I have no mutations so other than
Category: Uncategorised

Replies: 6

Last updated: 10 April 2012
Pennie on 2 April 2012

Category: Uncategorised

Replies: 1

Last updated: 3 April 2012

Paper Cranes
by JeffMowatt (Apr 3)

Pennie, this was something I'd remembered when Japan was hit by a tsunami which damaged a nuclear plant.
Prior to my own diagnosis I'd visited Ukraine several times in the preceding decade but not

by Pennie (Apr 2)

Thank you Jeff for this link I had no idea these beautiful paper birds had a connection with Leukeamia.

Bill and I made our first ones last night - difficult and the first attempt really
Category: Uncategorised

Replies: 1

Last updated: 3 April 2012
EmChops on 1 April 2012

Category: Uncategorised

Replies: 2

Last updated: 2 April 2012

Rash and itching - is it Nilotinib?
by Pennie (Apr 2)

Hello Emma I had terrible skin rashes when first on Nilotinib, and going out in bright sunlight, even in winter made it worse on my face. Saw dermatologist at hospital and was given various

by JeffMowatt (Apr 2)

Emma, I had a similar experience with imatinib.
About a decade earlier I'd been diagnosed with guttate psoriasis, seeming triggered by a heavy URT, so took this experience as a latent health issue

by EmChops (Apr 1)

I don't like to constantly blame the drug that is fighting my CML but for the last 4 weeks I have had a horrid bumpy rash on my face that is sometimes red spots sometimes just bumps under the skin.
Category: Uncategorised

Replies: 2

Last updated: 2 April 2012