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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hannah2010 on 9 August 2012

Category: Uncategorised

Replies: 3

Last updated: 10 August 2012

2 years on glivec rising results
by sandy craine (Aug 10)

Hi Hannah,
as David has said... do not worry.

You really need to see two consecutive rises of 5-10 fold before you need to worry that your bcr/abl levels are on the rise

Your sequence

by hannah2010 (Aug 9)

Thanks for ur advice x

by david_a (Aug 9)

Hi Hanna,

I know its not easy but try not to get too worried.

As your doc says it may be just a blip, or even an inconsistency in one of your results which can happen.

I think its

by hannah2010 (Aug 9)

hi there my name is Hannah, although I have always read the forum regularly and found it very imformative I have never joined as a member before until now.............................

I have
Category: Uncategorised

Replies: 3

Last updated: 10 August 2012
skiinglaketahoe on 8 August 2012

Category: Uncategorised

Replies: 4

Last updated: 16 August 2012

CML and broken bones
by Ali Loram (Aug 16)

Hi Susan,

This may be relevant or not!

You mention that you are/have been on steroids. From experience, long term steroids can lead to poor bone density & thus delayed healing. I was

by skiinglaketahoe (Aug 16)

Thank you both for your replies.
I have had loads of blood tests to try and establish anything else going to with regard to the broken hip. Nothing really found; I was even investigated for coeliac

by cmlblogger (Aug 16)

not sure it helps but I had a broken nose when I got hit the face by a softball (they are in no way soft!!!) whilst on imatinib some years ago. Seemed to heal ok, an in fact slightly smaller than

by fehr (Aug 12)

My wife had a problem with healing of bones. Nothing to do with CML - that's me. She fell off her horse and broke her leg - spiral comminuted fracture of the tibia running into the knee. Ended
Category: Uncategorised

Replies: 4

Last updated: 16 August 2012
teddyb on 6 August 2012

Category: Uncategorised

Replies: 6

Last updated: 15 August 2012

First PCR test results
by teddyb (Aug 15)

I have read that people use exercise for a way to help fight fatigue while on Gleevec.
As for the STIM trials, yes, that would indeed be something :)

by david_a (Aug 9)

I too get side effects, but nothing major. Good days and bad days. Fatigue is the main one, but I do plenty of excercise so maybe its a side effect from that?

My ultimate goal is to get off

by teddyb (Aug 8)

Good to hear your response has been so good on Glivec. Im hoping i can stay on Glivec too, as i have not had any major side effects so far. Some skin issues, fatigue and nausea, but nothing too bad

by david_a (Aug 7)

Hi,

Yes I'm on Glivec 400mg per day and the occasional wine for therapuetic purposes.
Category: Uncategorised

Replies: 6

Last updated: 15 August 2012
tartancaddy on 6 August 2012

Category: Uncategorised

Replies: 3

Last updated: 8 August 2012

eye problem
by tony morgan (Aug 8)

Hi Gary I was dx on 14thdec 2009. ,started imatinib 6th jan 2010. I get puffy eyes in the morning ,and like you intermittent bleeding ,one was so bad it was raised off my eye.just told to let it

by tartancaddy (Aug 6)

Hi Chris
Thanks for your reply. I'm on 400mg of Imatinib and have been for 2 1/2 years. The pressure on my optic disc was causing my eyes to go a bit weird and that's how i was diagnosed in 2010. I'

by cdw5000 (Aug 6)

Hello Gary,
I've had some eye issues but not to the extent you described. Which medication are you on? I'm on Nilotinib (Tasigna) and my eyes look very bloodshot and very glassy. I'm also having

by tartancaddy (Aug 6)

Hi Guys
Just wondered if anyone else has had problems with their eyes and in particular bleeding and abnormal veins appearing? Just been to the Eye hospital and they say i have to get laser
Category: Uncategorised

Replies: 3

Last updated: 8 August 2012
Pennie on 2 August 2012

Category: Uncategorised

Replies: 5

Last updated: 7 August 2012

Elusive zero
by skiinglaketahoe (Aug 7)

Hi Pennie
Just wanted to say hello and it was nice to hear how you are doing. It is so nice being off TKI's. I found it quite scary to realise how bad I felt on them. Take care and I know that you

by Pennie (Aug 6)

Yep tried dose reduction, and changing around dasatinib/nilotinib. Having time out is OK but scary. I cant tolerate Interferon, but people who can often get decent reduction in PCR hope this

by Ali Loram (Aug 6)

Hi Pennie,

Sorry to hear you are having problems still. We seem to be so alike, although my counts are high, hence the wait for a BMT! Its good they are keeping a close eye on you.

Im

by Pennie (Aug 4)

Hi Lynn I think I have replied on the 'girls' group, but it might have got lost on the way!! Brain not in gear really. Speak soon I hope

Pennie
Category: Uncategorised

Replies: 5

Last updated: 7 August 2012
sandy craine on 1 August 2012

Category: Uncategorised

Replies: 1

Last updated: 16 August 2012

Brian Druker MD wins another prestigious science award
by gizmos mum (Aug 16)

Thank goodness we have people like Brian Duker in this world, who we owe our lives to.

by sandy craine (Aug 1)

Prize is Pitt School of Medicine’s most prestigious annual award
Brian J. Druker, MD, is the recipient of the 2012 Dickson Prize in Medicine from the University of Pittsburgh School of Medicine. Dr
Category: Uncategorised

Replies: 1

Last updated: 16 August 2012
Spitfire on 31 July 2012

Category: Uncategorised

Replies: 4

Last updated: 4 August 2012

New recruit!
by tony morgan (Aug 4)

Hi to all , just read your comment sue on felling weak and balance not quit right, to put you in picture , I was dx i14th dec 2009,started treatment jan 6th 2010. About aug 2009 I started a slight

by lynnsch (Aug 4)

Hi Sue and welcome to our club,
I was dx's in April 2009 and similarly to you responded well to Glivec but stuggled with the side effects. I took Glivec for about a year and a half and whilst the

by Spitfire (Aug 2)

Many thanks Sandy for your reply. I think it's been hard for me to make sense of what's going on and it's reassuring that you think the side effects seem difficult, as I have certainly been

by sandy craine (Aug 1)

Hi Sue,

thank you for posting your story so far. You have responded very well to imatinib as you are well within the latest research by D. Marin et al that cites for and optimal response less
Category: Uncategorised

Replies: 4

Last updated: 4 August 2012
ni2i on 23 July 2012

Category: Uncategorised

Replies: 1

Last updated: 24 July 2012

chewing gum
by sandy craine (Jul 24)

Hi Naomii,
Fingers crossed that your next pcr has lots of zeros.
Re: fasting and chewing gum. Given that gum is not a food as such and has no fat content....high fat foods present the biggest issue

by ni2i (Jul 23)

Hi All
Hope everyone is well. I have been on Nilotinib now for 6 wks with no side effects thankfully. I have not had any pcr results yet so don't know where i stand on that front. Anyway my question
Category: Uncategorised

Replies: 1

Last updated: 24 July 2012
jacqui from Col... on 18 July 2012

Category: Uncategorised

Replies: 2

Last updated: 22 July 2012

Lung Tap
by jacqui from Colchester (Jul 22)

Thanks Julie, Hope is all going well for you x

by gizmos mum (Jul 20)

Hi Jacqui

Sorry I do not know any thing about this but just to say hope it all goes ok and it was good and reassuring to speak to you the other day, and i wish you all the best

Julie

by jacqui from Colchester (Jul 18)

Hi

I have just had a lung Tap done (which wasnt too painful even without anesthetic). The liquid they drained from my pleural effusion in the lining of my lung was very cloudy it look liked
Category: Uncategorised

Replies: 2

Last updated: 22 July 2012
sandy craine on 14 July 2012

Category: Uncategorised

Replies: 1

Last updated: 16 July 2012

Travel FAQ
by sandy craine (Jul 16)

Please see updated Travel FAQ- I have added the world first as recommended yesterday.
If you have a recommendation please send it to me so I can continue to keep the Travel FAQ up to date.
thanks,

by sandy craine (Jul 14)

Thanks to Marsy's spreadsheet I have updated the Travel FAQ and included 2 new companies.

There has been a list of companies on the FAQ for some years, but I rarely get feedback on how the
Category: Uncategorised

Replies: 1

Last updated: 16 July 2012
teddyb on 13 July 2012

Category: Uncategorised

Replies: 2

Last updated: 14 July 2012

CX-5461 treatment for CML?
by teddyb (Jul 14)

Thank you Sandy.
Hope everything is well with you.
My 3,5 month checkup is coming up in 12 days, and i can feel myself getting a bit anxious as im hoping for a good response. Not easy to enjoy the

by sandy craine (Jul 14)

Hi Teddyb,

yes that is fine. see further posts about this below.
best wishes,

Sandy

by teddyb (Jul 13)

Some interesting news the last few days regarding CX-5461:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=29700

http://www.abc.net.au/news/2012-07-10/newbreakthrough-gives-hope-to-
Category: Uncategorised

Replies: 2

Last updated: 14 July 2012
Ali Loram on 12 July 2012

Category: Uncategorised

Replies: 1

Last updated: 13 July 2012

Interferon pen problems
by sandy craine (Jul 13)

Hi Ali,
sounds difficult! It's stressful enough learning the techniques of self-injection without the technology being faulty or difficult to use as well. I suppose the fact that interferon is not

by Ali Loram (Jul 12)

Hi, I am using a Roferon pen to inject the interferon & am having terrible trouble with it. Its not just me as the hospital had trouble with putting in a new cartridge last week when trying to
Category: Uncategorised

Replies: 1

Last updated: 13 July 2012
cousineg on 10 July 2012

Category: Uncategorised

Replies: 1

Last updated: 13 July 2012

New blood cancer treatment to be tested
by sandy craine (Jul 13)

Yes I have seen this..... it is not yet in clinical trial but seems it will be in phase 1 later this year.
Cancer Cell Article Demonstrates First Definitive Evidence for Targeting of Pol I as New

by cousineg (Jul 10)

New blood cancer treatment to be tested

http://www.adelaidenow.com.au/technology/sci-tech/new-blood-cancer-treat...
Other link: Cure possible for Chronic Myeloid Leukemia (CML) ?
Category: Uncategorised

Replies: 1

Last updated: 13 July 2012
chrissie on 6 July 2012

Category: Uncategorised

Replies: 3

Last updated: 18 July 2012

WIN trial
by sandy craine (Jul 18)

Hi Bryan... disappointing for you I am sure.. but as you say, it might need a little longer to see the results. Hopefully over the next few months there might be a residual effect. I know when I had

by chrissie (Jul 18)

Hi Bryan
Many thanks for posting. So sorry the news wasn't more positive for you or, indeed, for the other 3 people at HH. It will be interesting to hear the results overall from Southampton.

by bc (Jul 18)

Just had my follow-up this morning on the WIN trial where they look at the results over the last 6 months of vaccines and see whether there is any value in continuing. Unfortunately I haven't

by chrissie (Jul 6)

Hi everyone
Just wondering if any of you lucky enough to have had the injections on the above trial have any news. I still trot along to the hospital regularly to give blood and get prodded and
Category: Uncategorised

Replies: 3

Last updated: 18 July 2012
sandy craine on 3 July 2012

Category: Uncategorised

Replies: 2

Last updated: 4 July 2012

Reminder for all those who took part in the recent Survey
by sandy craine (Jul 4)

Hi Chris,

thank you for donating your payment to us, it is very much appreciated. The easiest way to do it is is to ask Denise to transfer your payment directly to CMLSg account- bank details

by cdw5000 (Jul 3)

Sandy,
I got the email; however, I would like to donate the money directly to CML support. Can you advise the best way to do this? or would it be easiest to simply accept the payment from Denise and

by sandy craine (Jul 3)

Denise of 'Denise Salinger Research Services' has asked me to remind those of you who took part in the survey and have not already sent on your bank details, to send them to her so that she can
Category: Uncategorised

Replies: 2

Last updated: 4 July 2012
jacqui from Col... on 3 July 2012

Category: Uncategorised

Replies: 12

Last updated: 15 July 2012

What will happen to me now
by sandy craine (Jul 15)

Hi Jacqui... don't worry it is very easy to forget that this is an open access site. many people throughout the world read it (average number of individual visitors is upwards of 6500 per month

by jacqui from Colchester (Jul 14)

Thanks Sandy, hadden thought - sorry jacqui

by gizmos mum (Jul 13)

Thats brilliant, i will call you over the weekend, Julie

by jacqui from Colchester (Jul 13)

Hi Julie
It is nice to hear from someone who is local to me. Would love to meet up my mobile number is :::::
Jacqui
Note: for your personal protection please do not give out personal phone numbers
Category: Uncategorised

Replies: 12

Last updated: 15 July 2012
Adolfo on 27 June 2012

Category: Uncategorised

Replies: 2

Last updated: 30 June 2012

Rash with Nilotinib, from Portugal.
by RodM (Jun 30)

Hi, I started with Dasatinib and for the first 2-3 months had problems with skin rashes particularly on skin exposed to the sun. Keeping out of the sun definitely helped.
I also experienced what I

by sandy craine (Jun 28)

Hi Adolfo, and welcome to this forum. Please do not apologise for your English, it is excellent and certainly better than my Portuguese!.
Many people find that a skin rash is one of the side

by Adolfo (Jun 27)

Hello,
I'm from Portugal, and there are about 4 months I was diagnosed CML. I initially started treatment with Imatinib, but had a lot of muscle pain. Right now I'm with Nilotinib, there are already
Category: Uncategorised

Replies: 2

Last updated: 30 June 2012
jamesashwell on 23 June 2012

Category: Uncategorised

Replies: 17

Last updated: 18 August 2012

2 years gleevec 400mg and whats going on
by chrissie (Aug 18)

After dx sept 2009 I reached 0.04 within 6 months. Since then my PCRs have fluctuated between 0.1 and 0.07 which i find somewhat frustrating. Like you I am loathe to move onto 600mg IM or Nilotonib

by karen (Aug 16)

Hi Sandy

I have to say David Marin is lovely, always happy to have an appointment with him!

K

by sandy craine (Aug 15)

Congratulations on the extra zero! You must be so relieved. I understand completely why you do not want to change to another therapy if imatinib suits your life-style and is -gradually- getting your

by teddyb (Aug 15)

I read in another forum that someone had contacted Dr Druker, and he said no more than 4 hours apart each day, but i would never take my pill 4 hours apart each day on a regular basis. (Gleevec)
Category: Uncategorised

Replies: 17

Last updated: 18 August 2012
Coyney on 22 June 2012

Category: Uncategorised

Replies: 5

Last updated: 2 July 2012

Penicillin - Post transplant
by sandy craine (Jul 2)

Hi Martyn,
Being 'Asplenic' just means you have had your spleen removed for one reason or another. Many people who have damaged spleens...i.e through road traffic accidents etc.... have to have them

by Coyney (Jun 30)

Hi Jo,
Thanks for the response; I hope your doing well.
As I said in my response to Sandy I also feel that my body will start to rely on it and I've done well so far without it. Don't get me wrong I

by Coyney (Jun 30)

Thanks for the response Sandy,
I'm the same, as I said in my initial post haven't taken Penicillin and have been fine with no infections for years. No I didn't have TBI which is why one of the

by sandy craine (Jun 25)

Hi Martyn,
I had my spleen removed at diagnosis and was told that I had to take antibiotics for life. I was not happy to do this and had quite a few disagreements with medical staff. I did agree to
Category: Uncategorised

Replies: 5

Last updated: 2 July 2012
ni2i on 13 June 2012

Category: Uncategorised

Replies: 12

Last updated: 23 July 2012

nilotinib
by sandy craine (Jul 23)

Hi Paul,
I think your lack of side effects might be because they are generally not the same on the different TKIs. So you will see the main side effects from imatinib disappear on nilotinib. You

by paul orourke (Jul 19)

Hi Sandy

just had second visit whith temp consultant.Still have trouble understanding her lingo.She sais that i am doing fine from my blood count, but i thought the only way that the can tell

by sandy craine (Jul 3)

Hi Paul,
I can understand your frustration and disappointment. It is hard to deal with a diagnosis of CML in the first place and made even harder when you are not responding fast enough to therapy

by cdw5000 (Jul 1)

Paul,
Welcome to the group. It seems like you're very frustrated and maybe a touch angry? I get the impression you're having difficulty understanding all the information being thrown at you, and
Category: Uncategorised

Replies: 12

Last updated: 23 July 2012