TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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ruddoug09 on 9 May 2012

Category: Uncategorised

Replies: 5

Last updated: 10 May 2012

Where should I be after 18 months?
by ruddoug09 (May 10)

Many thanks Sandy, no doubt there will be a discussion with my doc in a few months but hopefully there will be an additional 0 in there! I only saw the registrar last time and he was quite happy

by sandy craine (May 10)

Hi Chris..
I bet you were surprised! All I can say is that this is a big problem for US patients. Labs there are not standardised with one another or use the IS.
The quest for international

by sandy craine (May 10)

First- your pcr track looks pretty good to me and shows a consistent downward trend, apart from March result which shows a slight rise on the previous result. I would say that you should discount

by ruddoug09 (May 10)

Thanks Chris for the reply. That seems very strange to see your results at 0.000% in the USA but then to be 0.17% in the UK.
I was 31 when I was diagnosed so I'm more relaxed to know that you are
Category: Uncategorised

Replies: 5

Last updated: 10 May 2012
tartancaddy on 8 May 2012

Category: Uncategorised

Replies: 4

Last updated: 10 May 2012

Digestion problems
by tartancaddy (May 10)

Thanks Sandy
This sounds really promising. I'll be heading to the local health food shop asap.
Thanks again
Gary

by sandy craine (May 9)

Hi Gary and Richard... there was a previous discussion on this.

I found the Apple Cider Vinegar totally dealt with the problem for me.... details in previous thread post below
http://www.

by tartancaddy (May 9)

Thanks for you comments Richard. I suppose i have to count my blessings in terms of side affects as it's manageable.
Thanks again
Gary

by Richard42 (May 8)

Hi Gary
I suffer these - not so bad now (3 years in) but still there. Both indigestion - which I take omeprazole for (and it works for me); and what I have heard rather euphamistically called "
Category: Uncategorised

Replies: 4

Last updated: 10 May 2012
sandy craine on 8 May 2012

Category: Uncategorised

Replies: 3

Last updated: 14 May 2012

Alexandra's post re pregnancy: reposted from below
by technician69 (May 14)

Hi Alexandra, My daughter was 28 weeks pregnant when she found out she was expecting. She was taking Dasatinib throughout, although she did say she was vomiting up the tablet as soon as she took

by cousineg (May 13)

Hi Alexandra,

You can obtain information at http://www.cmleukemia.com/cml-and-pregnancy.html. Pregnancy with CML is a big responsibility for a doctor. I hope that your hematologist is a

by sandy craine (May 8)

Alexandra,
I can understand why you are worried about conceiving whilst on TKI therapy- in your case Tasigna (nilotinib). The advice from the various drug companies is not to conceive before

by sandy craine (May 8)

Im Pregnant

Submitted by alexandra2012 on Sat, 05/05/2012 - 00:09.

Hi Debra!

like you I was diagnosed when I was 28 weeks preganat of my first baby, as soon as I gave birth, I
Category: Uncategorised

Replies: 3

Last updated: 14 May 2012
Vonnie46n2 on 6 May 2012

Category: Uncategorised

Replies: 1

Last updated: 7 May 2012

Brother dx with CML about a year ago. Need information.
by sandy craine (May 7)

Hi and welcome.
It is difficult to know exactly where to start. I cannot comment specifically about your brothers case as it is obviously complex,but I can try and give an overview- first of CML and

by Vonnie46n2 (May 6)

My brother was diagnosed with CML about a year ago when he was 18 (no health problems). He immediately started Gleevec, he has been taking it for awhile until recently. He had to go for two blood
Category: Uncategorised

Replies: 1

Last updated: 7 May 2012
sandy craine on 5 May 2012

Category: Uncategorised

Replies: 3

Last updated: 17 September 2012

fundraising Pages-JustGiving.com
by sandy craine (Sep 17)

Dear Rachael,
please pass on congratulations to Ian for
1) completing the run with a personal best time ;o)

and

2) Choosing CMLS Group to raise funds for.
I hope you and the kids

by RachaelB (Sep 16)

Thanks everyone for your support. Ian completed the Great North Run in 2 hours 4 minutes (personal best). Hot bath when we got home & awaiting the stiff muscles tomorrow :-)

by RachaelB (Sep 15)

Ian and I have arrived in the North East in readiness for the Great North Run tomorrow! Ian's running for the CML Support Group. He's just had a lovely pasta dinner and lots of water in preparation

by sandy craine (May 5)

Ian is running in support of CMLSg. Racheal (Ian's wife) is an active member of CMLSg and helped appeal the NICE FAD which refused dasatinib in 2nd line therapy.
Ian's page- http://www.justgiving.
Category: Uncategorised

Replies: 3

Last updated: 17 September 2012
Patricia Ormrod on 3 May 2012

Category: Uncategorised

Replies: 5

Last updated: 4 May 2012

Frequency of Hospital Appointments
by sandy craine (May 4)

Dear Trish,
I absolutely understand why you would feel nervous that Jack's appointment schedule is changing... I would feel the same if my daughter were the one with CML. However, given that you say

by Richard42 (May 4)

Hi Andy
My two BMAs were pretty hard work for me and the doctors involved: I have hard bones apparently, and the whole thing was very unpleasant. And with the second test two years ago, when I was "

by blueyes74 (May 4)

Hey Richard,

Great news on the three year anniversary. I had mine back in March.
I remember the first BMA as clear as day. They said "It hurts just a little bit." What liars! After the

by Richard42 (May 4)

Hi Both
I'm just coming up to my 3rd CML anniversary. At first, like everyone, I was seen frequently. After about 6 months this went to every 3 months and now it is every 4. My translocation is/
Category: Uncategorised

Replies: 5

Last updated: 4 May 2012
Debs on 2 May 2012

Category: Uncategorised

Replies: 2

Last updated: 4 May 2012

Hi All
by Lyndsey (May 4)

Hi Debs,

Just wanted to say hi and welcome to the forum and sorry about your recent diagnosis which must have come as a huge shock. I'm glad you have found the site and I'm sure you will find

by sandy craine (May 3)

Dear Debs... thanks for sharing your experience. Good luck for a continued good response to dasatinib and best wishes for a lovely holiday in Canada.
I am really glad that you have found this site

by Debs (May 2)

Just wanted to say hello, and thank you for this website/forum and all the useful information - its been invaluable.
A brief history: I'm 41 and was diagnosed 7 weeks ago after donating my usual
Category: Uncategorised

Replies: 2

Last updated: 4 May 2012
Alastair C on 2 May 2012

Category: Uncategorised

Replies: 1

Last updated: 2 May 2012

Anniversaries
by sandy craine (May 2)

Congratulations on all those milestones/anniversaries...actually maybe not the first one ;o) but especially the 3 years stable MMR at 0.00%.
Best of luck for a win with your league tennis match

by Alastair C (May 2)

Just back from my latest check-up at Durham, and noted a few anniversaries with my specialist I thought I would share.
It is 5 years since my diagnosis, just after my 50th birthday.
It took me 18
Category: Uncategorised

Replies: 1

Last updated: 2 May 2012
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