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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
Basil from RSA on 29 March 2012

Category: Uncategorised

Replies: 13

Last updated: 24 December 2012

News from Basil in South Africa
by cousineg (Dec 24)

Hi Basil,

Many thanks for sharing your experience with imatinib discontinuation. You have to see this new video about the Stop trials.

Can we safely stop TKI therapies?

by Katherine (Dec 22)

Hello everyone, this is my very first post after reading many on my quest for information and research into stopping Glivec. I wish continued good luck for you Basil and Nancy and any one else who

by Basil from RSA (Apr 14)

Hi Nancy. Wow I virtually have a twin in the time aspect perspective. You stopped taking Gleevec on the 9th, and I on the 30th of April 2009.

I will certainly like to follow your posts on a

by LizzieD (Apr 11)

Hi Basil

Congratulations on doing so well stopping the Imatanib. I have been undetectable for the past 18 months and the last time I saw my consultant he said we were going to try and cut down
Category: Uncategorised

Replies: 13

Last updated: 24 December 2012
Don on 23 March 2012

Category: Uncategorised

Replies: 10

Last updated: 15 April 2012

Hello from Ireland
by Don (Apr 15)

Hi Moira,
I am from Newtowncunningham, Donegal, lived in Derry for a few years but moved back home last year. I was treated in Letterekenny. How is your husband getting on now ?
Regards

Don

by Moiraw (Apr 15)

Hi Don
Are you in the north or south, my husband was treated in Derry, Belfast and st.james in Dublin. Excellent care all round.
Thinking about you,

Regards

Moira

by JeffMowatt (Apr 1)

Sany, You remind me of this story, which some may know already.
http://en.wikipedia.org/wiki/Sadako_and_the_Thousand_Paper_Cranes

by ADJL (Mar 29)

Nice to hear from you Don, and hope that your treatment enables you to get back to a normal way of living as soon as possible.
For me, 2.5 years on Dasatanib, the tiredness comes and goes, but that
Category: Uncategorised

Replies: 10

Last updated: 15 April 2012
nigel on 23 March 2012

Category: Uncategorised

Replies: 3

Last updated: 20 May 2012

4 way translocation
by nigel (May 20)

Thought I would post an update, saw Prof. Craddock at QE-Birmingham on Thursday and ask with regard to this. It appears about 1 in 20 of us have this 4 way change, and very much is not something to

by nigel (Mar 29)

Thanks for the info Sandy had a read on this and others, interested to see if others out there and experience of 4 way transloactions. This change is under 10% of CMLers eg 50 or so a year. Great! a

by sandy craine (Mar 27)

Hi Nigel... just a quick skim of the various articles on variant PH translocations came up with the following article. It would seem that you should take the advice of your doctor and not worry

by nigel (Mar 23)

Morning all, Saw doctor yesterday who mentioned I had a 4 way translocation. She said this was not something to worry about. On Imatinib, my result yesterday from a months ago FISH test was 14% at 4
Category: Uncategorised

Replies: 3

Last updated: 20 May 2012
sandy craine on 22 March 2012

Category: Uncategorised

Replies: 2

Last updated: 23 March 2012

NICE publishes FAD: MTA dasatinib, nilotinib and imatinib in first line CML
by sandy craine (Mar 23)

Dear Rachael,
I agree, before any FAD there is always hope, even though we suspect that there will be a negative outcome. Of course it is good news for those who would respond better to

by RachaelB (Mar 22)

It is, as suspected, but until you see it in black and white, it doesn't hit home! For me, dasatinib has been the 'wonder drug'. I take two 50mg tablets once a day - either

by sandy craine (Mar 22)

Go to the NICE website to read the FAD on dasatinib/nilotinib and imatinib for first line therapy in CML.
Needless to say as we expected.
We will post our official statement this evening.
http://
Category: Uncategorised

Replies: 2

Last updated: 23 March 2012
Steven Davies on 22 March 2012

Category: Uncategorised

Replies: 2

Last updated: 22 March 2012

Off Bostutinib back on Nilotinib
by Steven Davies (Mar 22)

Hi Sandy
My consultant has said that my local PCT would have to be asked but thought that would not be a problem as they had agreed to fund my Nilotinib before it was approved.
However Im still

by sandy craine (Mar 22)

Hi Steven,
sorry to hear you could not tolerate bosutinib- or rather the side effects were worse. I hope all this is resolved soon for you. Just have one question- dasatinib is not approved for 2nd

by Steven Davies (Mar 22)

Hi.
Just come back from Hammersmith and have changed back from Bostutinib to Nilotinib because the side effects for me were worse on Bostutinb100mg than Nilotinob 600mg.
So have to wait a week
Category: Uncategorised

Replies: 2

Last updated: 22 March 2012
sandy craine on 22 March 2012

Category: Uncategorised

Replies: 4

Last updated: 11 April 2012

Welcome Marilu- new discussion thread - reposted from below
by joflo (Apr 11)

Glad to hear you're feeling better and back on the meds. I'm no expert but from what I have read in some of Sandy's responses on here I think acute is different from advanced cml - more

by marilu (Apr 11)

Not feeling so scared and very determined not to allow the illness to develop into acute - I met a lady at the hospital yesterday who has acute myeloid and she is STRUGGLING- in and out on chemo

by marilu (Apr 11)

Thanks Rod

I started the treatment and after 7 days had to stop due to pancreas problems, now back on since yesterday after a week off.

I feel less scared now- this site is really good.

by joflo (Mar 22)

Just to say hi and completely understand your fear especially for the first few weeks as it is a worrying time initally. Give yourself of time to adjust and you will feel better
Category: Uncategorised

Replies: 4

Last updated: 11 April 2012
chrissie on 21 March 2012

Category: Uncategorised

Replies: 1

Last updated: 22 March 2012

Spam
by sandy craine (Mar 22)

Hi Chrissie,
I agree- it seems so cynical doesn't it. However, since our worst ever spam hit- last summer- Roger, our web manager - instigated a new spam filter system which works very well.
As

by chrissie (Mar 21)

Looks like some warped individual has started a spam comment under postings again. What is wromg with these people?
Category: Uncategorised

Replies: 1

Last updated: 22 March 2012
joflo on 15 March 2012

Category: Uncategorised

Replies: 6

Last updated: 22 March 2012

3 Month Result
by joflo (Mar 22)

Well done to you too on your recent result. I know what its like also having a little one myself and pt job... juggling all those things ...good to hear the cml is one less thing

by EmChops (Mar 18)

Well done!
Emma x

by joflo (Mar 17)

Thanks for your kind words, yes I think I''ll treat myself to a glass of red tonight Sandy;). Nigel - onwards and upwards to 6 months ( or rather downwards L cells wise!) now

by nigel (Mar 16)

Well done, Jo, great result.
Nigel
Category: Uncategorised

Replies: 6

Last updated: 22 March 2012
karen on 13 March 2012

Category: Uncategorised

Replies: 1

Last updated: 14 March 2012

Holby City
by Alastair C (Mar 14)

I saw the episode, but didn't recognise the bowel conditions the "patient" had as a complication of CML I was aware of.
I went to look at the McMillan site and didn't find any

by karen (Mar 13)

Just wondering if anyone watched Holby tonight? Main character had cml with complications - mainly about the issues finding black and ethnic bone marrow donors.
Category: Uncategorised

Replies: 1

Last updated: 14 March 2012