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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Kiranyolarotti on 18 January 2019

Category: Treating CML

Replies: 5

Last updated: 24 January 2019

Peripheral smear report shows 0% myeloblast
by AlastairC (Jan 24)

Richard, your account of the issues the lady has experienced is very sad. There is good research to indicate that treatment free remission is achievable under conditions which are becoming better

by Richard (Jan 23)

I have read recently about a 40 year old lady of Asian descent who had been diagnosed with CML. She responded very well to drug treatment, so well, in fact, that the treatment was

by charissa (Jan 20)

Hi kiran,
Good thing you can afford tasigna. Very expensive. I hope your doing ok.
Charissa

by Kiranyolarotti (Jan 19)

Thank you so much Scuba. My creatnine level increased to 1.5 and even Total count - increased fro 6600 to 10500 with 0% blast. Is it bcoz of tasigna?
Regards

Kiran
Category: Treating CML

Replies: 5

Last updated: 24 January 2019
Stas on 23 January 2019

Category: About CML

Replies: 1

Last updated: 24 January 2019

I need help ASAP
by AlastairC (Jan 24)

I hope this link may help.

by Stas (Jan 23)

I’m an international person , but have lived in Cleveland area for a few years. My friend’s dad got diagnosed with GIST and he is in need of Glivec 400 mg. for treatment. It’s not possible to get in
Category: About CML

Replies: 1

Last updated: 24 January 2019
piyush sharma on 23 January 2019

Category: Treating CML

Replies: 3

Last updated: 24 January 2019

Increase in bcr-abl1% from 0.02548 to 0.0431
by AlastairC (Jan 24)

The increase between the last two results is not significant, and well within the range of accuracy of the test technique. I agree that another test in 3 months to out your mind at rest would be a

by RC Kirk (Jan 23)

Yes, I agree with Justine. But, if it were me, I would ask for another PCR test in three months just to be sure.

by Justine (Jan 23)

Your results are great!
As someone with CML who did not achieve MMR until 21 mos. after diagnosis, I will say that your trend is wonderful.
My understanding is that small changes like this are

by piyush sharma (Jan 23)

Hi,
I am little worried as my bcr-abl1 IS% slightly increased in the recent test result . Please help me understanding if i need to consider change in therapy.
I am on Imatinib 400 mg since
Category: Treating CML

Replies: 3

Last updated: 24 January 2019
Justine on 23 January 2019

Category: Treating CML

Replies: 0

Last updated: 23 January 2019

Recent publication on TFR from US Leukemia & Lymphoma Society
by Justine (Jan 23)

Just ran across this very recent document.
http://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS3...
It is helpful to understand CML basics and where we stand with TFR
Category: Treating CML

Replies: 0

Last updated: 23 January 2019
Kiranyolarotti on 23 January 2019

Category: Treating CML

Replies: 4

Last updated: 23 January 2019

How do i know if i am responding
by Kiranyolarotti (Jan 23)

Nice! Thanks David.

by David Fitz (Jan 23)

That's not uncommon. The logic is that the TKI kills off the cancerous cells, of which there are a lot. So your counts can dip quite low, but then start to build up to a more healthy level, with

by Kiranyolarotti (Jan 23)

Ohh okay! Thank you. One strange thing i did not understand my wbc count came down till 6600 and than increased again to 10500 with 0% myeloblast. Is it good or bad?
Regards

Kiran Yolarotti

by David Fitz (Jan 23)

Hi Kiran,
The fact that your WBC count has reduced like that shows that you are responding. So that is good news!
In time, you will have further tests showing how much BCR-Abl is in your body. That
Category: Treating CML

Replies: 4

Last updated: 23 January 2019
bendicco on 14 January 2019

Category: Treating CML

Replies: 12

Last updated: 22 January 2019

CML USA meetup
by Jason1435 (Jan 22)

Well hopefully everything is under control now. This is all new to me and I'm learning as much as I can. Its great your cml is under control. Since I started back on my meds I've had no side effects

by Jason1435 (Jan 22)

Had my testicle removed. I had chemotherapy no radiation.

Chemo didn't work, so had the lipnodes removed that were infected with cancer. Was cancer free for over 10 years until this.

by RC Kirk (Jan 19)

Jason, have you considered going to a lower dose of Sprycel? It could possibly give better results, since you had low platelets.
I was DX after giving a blood donation to the Red Cross.

by AlastairC (Jan 18)

Hi Jason,

Interested to read that you have a CML diagnosis some years after testicular cancer, which is exactly my experience. Did you have radiotherapy for your testicular cancer? I
Category: Treating CML

Replies: 12

Last updated: 22 January 2019
Nimbus2 on 15 October 2018

Category: Uncategorised

Replies: 8

Last updated: 22 January 2019

In the United Kingdom, does a CML diagnosis preclude a person from leaving his/her body for organ donation or for medical research?
by Nimbus2 (Jan 22)

I have the answers now. I wrote to the University of Birmingham in November, but they failed to reply.
The University of Leicester responded promptly and agreed that CML does not preclude the use of

by Nimbus2 (Nov 25)

Thank you, Nigel. I have had it confirmed that a person with CML cannot donate his/her organs to others. This is out of the question. However, my consultant sees no reason why a person with CML in

by Nimbus2 (Oct 16)

Thank you, Nigel. I think, having read these postings, that organ donation is a virtual no-go (save for eyes) for those diagnosed with CML. I loosely used the term "medical research" in the

by nigel (Oct 15)

I actually made this enquiry some years ago, I’ll have a look if I still have the email. I was told that technically yes, we can still donate as the issue is in the blood, not the tissue, however
Category: Uncategorised

Replies: 8

Last updated: 22 January 2019
Tanya Cuffe on 19 January 2019

Category: Uncategorised

Replies: 9

Last updated: 22 January 2019

Fatigue is ridiculous!
by Tanya Cuffe (Jan 22)

Thanks for that Dawn,much appreciated and much love to you as well ❤️Better get on antidepressants than trying self medicate on opioids!

by DawnD (Jan 21)

Hi Tanya, I took Lexapro after the breast cancer diagnoses. I was anxious and depressed. It worked really well. There are so many new ones out now, all having different ways of action, but they all

by Tanya Cuffe (Jan 21)

Thank you for that,Dawn.May I ask if you take antidepressants and if so,what?I will look into the books you mentioned as well.

by DawnD (Jan 20)

Hi Tanya, I too experience severe fatigue but it is more prevalent when my hemoglobin and Red blood cells are low. I also fight depression. Depression can have many causes, some chemical but other
Category: Uncategorised

Replies: 9

Last updated: 22 January 2019
logisnews on 19 January 2019

Category: Side effects

Replies: 7

Last updated: 21 January 2019

Chylous Ascites as a TKI side-effect? Specifically Sprycel?
by kat73 (Jan 21)

Jim, didn't realize you were an American! I reiterate you should additionally post on the LLS Forum, because of Trey. Obviously, I can't guarantee that he can/will add anything

by logisnews (Jan 21)

Every new thread of information is helpful.... I'm trying to connect the dots. I'm flabbergaseted (or I guess you guys across the pond would say Gobsmacked... (?) that my previous

by logisnews (Jan 20)

It's funny you should mention this -- I had this thought the other day. The cardiac meds keep my blood pressure so low (typically 95/70).
Metroprolol 75 mg x 2
Digoxin 250 mcg

by Isla D (Jan 20)

Thanks for posting Jim and so sorry to hear you are going through this. I really hope you get some relief soon.
I shouldn't comment as I'm not qualified to do so, but it strikes me that
Category: Side effects

Replies: 7

Last updated: 21 January 2019
charissa on 20 January 2019

Category: Side effects

Replies: 2

Last updated: 21 January 2019

Tasigna
by charissa (Jan 21)

Thank you Sid. I hope this forum can help me. I am happy to be part of this org as this will help me tell my stories and talk to someone who has the same condition as mine.

by Sid35 (Jan 21)

Hello Chacha,
I am so sorry to hear that.
Have you checked with Max foundation? I heard they have a help network. Please refer to this link.
https://www.themaxfoundation.org/global/asia-pacific/
I

by charissa (Jan 20)

Hi i am chacha from the philippines, i was diagnosed with CML 2013. before i used gleevec but my doctor change it to tasigna. It is very expensive maybe someone help me who still has tasigna
Category: Side effects

Replies: 2

Last updated: 21 January 2019
AF on 28 December 2018

Category: About CML

Replies: 14

Last updated: 18 January 2019

What’s new in CML
by LabNoir (Jan 18)

MD anderson in Houston is the only place offering this as a trial.
No trial in my case..me and doc decided we should give it a try based on early clinical results.I live in a free country

by AF (Jan 16)

Which hospital is offering this trial ? Is it in US or UK ?

by LabNoir (Jan 15)

I am close to MR4 after 6 month, been on and off Venetoclax. hard to say until I up the dose.
the important thing is that at 50mg, I don’t feel any side effect.

by AF (Jan 14)

Can you tell us more how long were you on the combination ( Dasatinib and Venetoclax) trial. Did your pcr drop ? Are u treated in the US ?
Category: About CML

Replies: 14

Last updated: 18 January 2019
Tedro on 18 January 2019

Category: Treating CML

Replies: 1

Last updated: 18 January 2019

missed my dose
by David Fitz (Jan 18)

No, just take it again at 4pm as normal and don’t worry.
David.

by Tedro (Jan 18)

Hello,
I take Sprycel 100mg once a day at 4pm. I missed it today and took it when I remembered at 1am, 9 hrs late.
Should I, then, take my next dose 4.5hrs later (8:30pm) and then the next day back
Category: Treating CML

Replies: 1

Last updated: 18 January 2019
Damian Gabilondo on 17 January 2019

Category: Uncategorised

Replies: 2

Last updated: 18 January 2019

New here
by Damian Gabilondo (Jan 18)

Muchas gracias estamos en contacto e iré informando, voy a ver si puedo traducir lo que publique gracias y espero que siga bajando ese par pronto

by Job Guerra (Jan 17)

Hola Damian. Primeramente disculpa mi ortografia porque casi nunca escribo en espanol y adicionalmente mi teclado no se presta para escribir en espanol. Pero de todos modos queria

by Damian Gabilondo (Jan 17)

Hello colleagues, I write from Argentina, I am Damián and I am 42 years old, 1 beautiful woman and 2 beautiful daughters of 10 and 13 years old, looking for this page and I really liked the
Category: Uncategorised

Replies: 2

Last updated: 18 January 2019
gemmatins on 13 January 2019

Category: Getting help

Replies: 5

Last updated: 17 January 2019

Supporting my dad
by Ray Sell (Jan 17)

Bless your heart. My three children are very supportive and it means the world to me. NCCN Guidelines for patients Chronic Myeloid Leukemia is a very good publication to purchase.

by gemmatins (Jan 14)

Hi there thank you so much for responding to me! Your words have touched me greatly thank you. I'm sending love and prayers to you and your own diagnosis thank you again x

by gemmatins (Jan 14)

Hi, thank you so much for responding! I will continue researching and will take full advantage of this site, thank you for your advice its really helped!x

by AlastairC (Jan 14)

Hi, your Dad is lucky that he has you to help him. The vast majority of CML patients do very well, and the mental side is often every bit as challenging as the symptoms and side effects of the drugs
Category: Getting help

Replies: 5

Last updated: 17 January 2019
Kiranyolarotti on 16 January 2019

Category: Treating CML

Replies: 5

Last updated: 17 January 2019

Newly Diagnosed with CML
by Tbrand (Jan 17)

I was diagnosed AP/officially BP. Had 44% PCR and 96000 WBC. Put on 600mg Gleevec. All milestones met. MMR at 12 months and Undetectable at 30 months. I believe the trend is all important.

by Kiranyolarotti (Jan 17)

Thanks Rogue.

Does 88% bcr-abl% (International scale) and cml-ap makes it hard to acheive MMR than with lesser bcr-Abl% (cml-cp).
Regards

Kiran

by r06ue1 (Jan 16)

1. Is Blast % from Bone marrow - 12% considered to be CML-AP or CML - CP? 10 - 19% is accelerated phase which is likely why you were started on Nilotinib.
2. Is BCR-ABL/ABL % -of

by Kiranyolarotti (Jan 16)

Thanks David.
88% Bcr Abl is PCR test - with normilized IS standards.
Yes, my spleen was 22 cm at dx. Not sure if its considered very large.
I was on hydroxyurea for a week to bring down the wbc
Category: Treating CML

Replies: 5

Last updated: 17 January 2019
Dustylloyd on 17 January 2019

Category: Uncategorised

Replies: 4

Last updated: 17 January 2019

Support at work
by Dustylloyd (Jan 17)

Many thanks John for your informative reply, what as niggled me for the last 2 years is the fact prior to my diagnosis 4 years ago I had no intention of ever contemplating reducing, or retiring

by johnw1001 (Jan 17)

Yes unfortunately employees with disabilities whatever they might be are still discriminated against despite legislation, employment tribunals and other safeguards in place.If you have been

by Dustylloyd (Jan 17)

Many thanks Alastair.

by AlastairC (Jan 17)

This link gives some information on the Equality Act, which now includes the requirements of the former Disability Discrimination Act. Hope that's useful - might be worthwhile repeating the
Category: Uncategorised

Replies: 4

Last updated: 17 January 2019
Felix on 15 December 2018

Category: Blood tests

Replies: 10

Last updated: 17 January 2019

Am I becoming resistant to Imatinib ?
by AlastairC (Jan 17)

Hi Denise
Sorry to hear this but glad you are now in the care of an expert team who can deal with this situation effectively. The bone marrow is necessary to see the types of mutation(s) you are

by Felix (Jan 16)

Hi all, just had my appointment with a new consultant in a different hospital .It looks like I am becoming resistant to Imatinib so might soon change to Nilotinib.How are the side effects with this

by Ray Sell (Dec 28)

That sounds really positive. Please post updates on your progress. A belated Merry Christmas to you and a Happy New Year to you.
I have blood draw Jan 3 and am looking forward to it.

by Felix (Dec 26)

Hi Ray ,yes following rules non of the forbidden fruits ,it's the squished red grapes I am missing the most especially with my Christmas dinner 🍷🍷🍷.I am just waiting for an appointment with a
Category: Blood tests

Replies: 10

Last updated: 17 January 2019
Riggered on 14 January 2019

Category: Uncategorised

Replies: 7

Last updated: 16 January 2019

Looking for advice on storing extra Sprycel
by Riggered (Jan 16)

Thanks to you all. Appreciate the help.....

by RC Kirk (Jan 15)

On page 34 -
"6.3 Shelf life
3 years.
6.4 Special precautions for storage
This medicinal product does not require any special storage conditions."

by scuba (Jan 15)

Yes. That's it, thank you.
http://www.ema.europa.eu/docs/en_GB/document_library/WC500251572.pdf

by gof (Jan 15)

This is because link was shorten (three dots in the middle).
I think this is the link Sprycel Assessment Report ?
Category: Uncategorised

Replies: 7

Last updated: 16 January 2019
POPPY on 16 January 2019

Category: Blood tests

Replies: 3

Last updated: 16 January 2019

PCR TEST @ 12% & Low Levels of Platelets
by David Fitz (Jan 16)

I would not worry about the dose. 300mg (twice daily) is the standard dose for nilotinib, and is in no way a low dose.
David.

by POPPY (Jan 16)

thanks David. what worries me is the next PCR test as dose has been reduced to 300mg. However, with dose reduction, side effects are definitely well managed.
The platelets were 70,000 per ml

by David Fitz (Jan 16)

10% at 3 months is considered "optimal", and 12% is as near as makes no difference to that so it's an excellent result. Exactly what you would hope for.
How low are your

by POPPY (Jan 16)

Hi All!
3rd month results of PCR @ 12% , is it alarming? This test was taken when at Nilotinib 4oomg (twice a day).
After the blood test was taken for PCR, dose reduced to Nilotinib 300mg (twice a
Category: Blood tests

Replies: 3

Last updated: 16 January 2019
ipmaki on 15 January 2019

Category: Blood tests

Replies: 3

Last updated: 15 January 2019

Elevated Lactate Dehydrogenase Test (LDH)
by ipmaki (Jan 15)

Thank you for the responses. I didn't do anything too strenuous before the test, but as I read more about LDH I am starting to think that it could be influenced by a cold I've been fighting

by RC Kirk (Jan 15)

Hi Ian,
Looking back at some of my lab results, it looks like the "normal" range for LDH is 110 to 250. Your result is barely above high normal so I wouldn't worry about it. I'd

by cmljax (Jan 15)

Hi. The most important thing for you right now is the trend in your PCR which has been continually falling. There are hares and there are turtles and while it feels better at the time to be a

by ipmaki (Jan 15)

Hi all. Just got my 12 month results (PCR of 0.256%). I've been on Sprycel 100 mg for the past year and not quite meeting the 0.1% goal. I guess I am a slower responder. Previous results were:
Category: Blood tests

Replies: 3

Last updated: 15 January 2019