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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lloyd152 on 1 February 2018

Category: Organising your life

Replies: 2

Last updated: 2 February 2018

Life Assurance
by lloyd152 (Feb 2)

Hi David,

Thanks for your reply. Yes I am living in the UK. Thank you for forwarding that thread, I'll investigate some of those options and will let everyone know if I come across anything

by David Fitz (Feb 1)

Hi Lloyd,
Are you in the UK? You'll probably find it night on impossible to buy life assurance that covers CML, and even if you do the cost is likely to be prohibitive.
However, you might be

by lloyd152 (Feb 1)

Hi all,
I have been on Dasatinib (Sprycel) for roughly 9 years and am just about to buy my first home. I'm struggling to find life assurance as I didn't already have any when I was diagnosed (I was
Category: Organising your life

Replies: 2

Last updated: 2 February 2018
sg3 on 24 October 2017

Category: Side effects

Replies: 3

Last updated: 2 February 2018

Dasatinib and headaches
by LouiseS (Feb 2)

Hi there
My husband is on 100mg Sprycel. He finds the key to avoiding headaches is to drink lots of water ( at least a gallon a day) . The days he forgets he tends to have a headache in

by Tidal-Life (Jan 23)

Yes, I have the same Headaches, only started with Dasatinib a bit over a week ago (switched from Imatinib due to lack of effect on ABL)
I take my 100mg in the early evening on nearly empty stomach (

by davewell (Oct 24)

Hello.
I am also on dasatinib, and when diagnosed I started with the 140mg dosage, taking my pill at 1 pm.
Invariably, at 4:30/5pm the headache used to hit me. It was mostly in my temples area.

by sg3 (Oct 24)

Has anyone got any advice how to deal with the daily headaches.?
My friend was initially on Imatinib but wasn't progressing enough,but side effects manageable. Then he changed to Nilotinib and
Category: Side effects

Replies: 3

Last updated: 2 February 2018
alroder on 30 January 2018

Category: Side effects

Replies: 7

Last updated: 2 February 2018

Nauesous after almost 3 years
by AdamJ (Feb 2)

I have also experienced nausea from Sprycel. It started for me after about 1 year occurs occasionally about 2 hours after I take my pill. Normally this is not too long after I have gone to sleep.

by scuba (Feb 1)

Below is a link to the pharmacology of Sprycel:
https://www.rxlist.com/sprycel-drug.htm
Elimination
The mean terminal half-life of dasatinib is 3 hours to 5 hours. The mean apparent oral

by loafer (Feb 1)

Having been on 100mg Sprycel for 14 months I continued with the nausea and blah days, I found these side effects last approx 6-8 hours for me (Trey or Scuba indicated Sprycel has a 5 hour life or a

by scuba (Feb 1)

Getting nauesous from Sprycel would be very unusual and not listed as a side effect. Perhaps something else is the cause.
I take mine just before retiring and with magnesium taurate (125 mg).
Category: Side effects

Replies: 7

Last updated: 2 February 2018
Amit on 29 January 2018

Category: Uncategorised

Replies: 5

Last updated: 1 February 2018

Nails
by Sue2 (Feb 1)

When I was first diagnosed, I was put on Gleevec. After a few months, my fingernails fell out and my toenails got very hard. I switched to Sprycel, and my fingernails grew back.

by David Fitz (Jan 30)

I hadn't really thought about this, but I have noticed faster and thicker growing fingernails in recent years. I didn't think of a CML / TKI reason ... just noticed it. Interesting others are having

by Amit (Jan 30)

There seems to be some correlation but I guess that will also come and go just like all the other side effects.

by Olivia (Jan 30)

Mine crack much more easily and I have to keep them very short. And yes, I think they are a little darker, but not enough for anyone else to notice. I hadn't thought about it until now!
Category: Uncategorised

Replies: 5

Last updated: 1 February 2018
scuba on 31 January 2018

Category: Uncategorised

Replies: 2

Last updated: 31 January 2018

Heart health ... role of vitamin D
by scuba (Jan 31)

I have read a lot of articles on CoQ10
(http://www.lifeextension.com/Magazine/2008/2/Coenzyme-Q10-And-Cancer/Pag...)
and I do have a bottle of it laying around, but I find myself not taking it

by cmljax (Jan 31)

Hey Scuba - what are your thoughts about taking CoQ10 for heart health as well? Good to see you over on this site.

by scuba (Jan 31)

We know TKI's put stress on the heart and cardiovascular system. And we also know CML is no longer a killer like it once was.
This is why it is important to focus on artery health overall and keep
Category: Uncategorised

Replies: 2

Last updated: 31 January 2018
Carolinemb on 20 January 2018

Category: About CML

Replies: 6

Last updated: 31 January 2018

Melanoma / CML
by cmljax (Jan 31)

I am the member who found the research on Niacinamide (actually my dermatologist found it and recommended it to me). To complete the story, the skin cancers I got were squamous cell and there

by AlastairC (Jan 29)

I believe flu jabs for those of us on TKIs are very important. The nurse practitioner at my GP is rigorous in making sure I turn up, and over this winter I have not had the level of flu/cold

by sandy craine (Jan 28)

Hi Caroline,
regarding skin cancers and Vitamin supplements. There is a member of this forum who developed non-melanoma skin lesions after starting therapy for CML - this is not thought to be

by Justine (Jan 21)

No supplements but I do try to eat well, mostly lean protein and vegetables. I have been on 400 mg Gleevec since day 1, going back and forth from brand name to generic because of insurance demands.
Category: About CML

Replies: 6

Last updated: 31 January 2018
Rebecca Bonnell on 12 November 2016

Category: Food & fitness

Replies: 7

Last updated: 30 January 2018

Extreme Fatigue with CML and the drug Imatinib
by Carolinemb (Jan 30)

Thanks for replying Sandy x

by sandy craine (Jan 30)

This list is personal to me... so it depends on what you personally need - generally I try to take the following Vitamins and minerals on a daily basis:
Vitamin C in the form of ascorbic acid powder

by Carolinemb (Jan 29)

Hi Sandy,

just wondered what the vitamin b complex is you take? And what other supplements you take?

Thanks Caroline

by EvaH (Feb 7)

Thanks....lot of info I didnt know there! Esp on citrus fruits and cranberry :-o
Your story got me wondering, I'm now 42 and was diagnosed last year. I have some savings and though some work
Category: Food & fitness

Replies: 7

Last updated: 30 January 2018
Melanie Preece on 14 January 2018

Category: Side effects

Replies: 2

Last updated: 22 January 2018

New and confused
by T and M (Jan 22)

Hi Mel,
Very sorry to hear about your mum. The first few months can be rough, especially when you have other medical issues.

My husband was diagnosed 3 months ago and has had some

by David Fitz (Jan 16)

Hi Mel,
That sounds really tough for your mum, and I am sure difficult for you too.
Stiffness and aching are common enough complaints, and in most people do subside after a while. Perhaps it takes

by Melanie Preece (Jan 14)

Hi all I’m new to this my darling 75 year old mother has been recently diagnosed with cml and has been taking imatinib for about a month now she didn’t feel well before hand but I’ve seen her change
Category: Side effects

Replies: 2

Last updated: 22 January 2018
T and M on 21 December 2017

Category: Getting help

Replies: 7

Last updated: 22 January 2018

Diagnosed with CML in September, 2017
by T and M (Jan 22)

Thank you so much for such a thorough response! I would have responded soon but he was airlifted up the road yet again with a UTI/kidney infection.
Since then they have performed a cystoscopy

by LucyandMark (Dec 30)

Hi Michelle and Tim. We're on that same journey with you! Mark was diagnosed late November 2017, just a few days before his 47th birthday. So sorry to hear of the UTI complications and your long

by ColoradoGuy (Dec 22)

Sorry I replied to your post in Sandy's reply as opposed to here. Please see reply below as we were diagnosed pretty much at the same time.

by ColoradoGuy (Dec 22)

Hello I too was diagnosed around the same time. Late August 2017. A week before my 37th birthday. My wbc is low on last checkup. 2.8 which is not in the normal range.

I don't think I have
Category: Getting help

Replies: 7

Last updated: 22 January 2018
cct121 on 19 January 2018

Category: Blood tests

Replies: 9

Last updated: 21 January 2018

Fluctuating Log Reduction results
by Justine (Jan 21)

I neglected to mention that I have been on 400 mg Gleevec since day 1.
Take care!

by Ellie Regina Grey (Jan 21)

Hello there,
My diagnosis was also in December 2016, with CML % count so high that even the lab commented: "unable to provide accurate number". Let's not talk about my white blood counts!
Funny,

by cct121 (Jan 21)

Thanks for the information pamphlet David!
Justine, that’s roughly the same trend I followed in the first year. It does look like you’re heading on a good recovery trend!!:)

by Justine (Jan 20)

These are my results. My tests are done in a lab in New Jersey, USA.
7 April 2017 date of dx
BCR/ABL1 of b3a2 Type: 59.08% International Scale Ratio: 49.0364%

6 July 2017 3
Category: Blood tests

Replies: 9

Last updated: 21 January 2018
shebako on 19 January 2018

Category: Uncategorised

Replies: 2

Last updated: 19 January 2018

Help
by shebako (Jan 19)

Many thanks. I had lost close to 2kgs weight before diagnosis and i have also maintained my kgs ranging 61 - 63kg in my life initially.
Apparently i just wished to add a little more.
I thought of

by David Fitz (Jan 19)

Hi there, and welcome!
Lucky you! No side effects is fantastic, and does not mean that the treatment isn't working. Some people are just lucky, others unlucky! When you think about it, it's natural

by shebako (Jan 19)

Hi am new here,am shem.

I have been using glivec close to one and a half months but i do not experience side effects.Is it normal?

For weight gain... i am 9.5 stones and would want to
Category: Uncategorised

Replies: 2

Last updated: 19 January 2018
JacqJohn on 10 January 2018

Category: Blood tests

Replies: 2

Last updated: 19 January 2018

Low WBC and sensitivity to TKIs
by AlastairC (Jan 19)

Hi John. Low WBC on imatinib has been my experience since I was diagnosed in 2007.
I always had low wbc, first investigated in the 1980s when I had a testicular cancer. (it is likely that the

by sandy craine (Jan 14)

Hi John,
your overall white cell count is lower than the normal ref count but given you are being treated with TKI therapy (and so recently diagnosed) your white cell count will be lower than

by JacqJohn (Jan 10)

Hi all,
ive been diagnosed with CML back in Sept 2017. Was first put on hydroxyurea then started on Nilotinib. However after a week into Nilotinib, my liver function test went up very high
Category: Blood tests

Replies: 2

Last updated: 19 January 2018
Carolinemb on 17 January 2018

Category: About CML

Replies: 2

Last updated: 18 January 2018

Wbc in urine analysis
by Carolinemb (Jan 18)

Thank you David, very kind of you to research that for me, I appreciate it..

by David Fitz (Jan 18)

Hi Caroline,
It's not something I've heard before, to be honest.
As far as I know, blood cells in urine is usually either a UTI issue or a kidney issue. Following a thought that the CML itself might

by Carolinemb (Jan 17)

Hi,

just wondered if anyone has had high white blood cells & / or microscopic amount of blood found in urine whilst having this condition? I’ve just been diagnosed with cml and wondered
Category: About CML

Replies: 2

Last updated: 18 January 2018
chrissie on 17 January 2018

Category: Uncategorised

Replies: 4

Last updated: 18 January 2018

Decisions
by Olivia (Jan 18)

Hi Chrissie
You are in a better place than I am - after some time on 200 mg of imatinib, my PCR was up to 0.06 in October 17, and I went back up to 300 mg. I had my latest test today, and am

by chrissie (Jan 18)

Thanks to both David and Lucas for replies which chime with my way of thinking. it's so low anyway I'm not worried.
best
Chrissie

by Lucas (Jan 17)

Hey, chrissie! I would wait some more time. maybe one or two more tests. If the upward trend continues, maybe you can have 300mg and 400mg in alternate days. Good Luck. As david said: your last 2

by David Fitz (Jan 17)

Hi Chrissie,
I wouldn't change anything. I'm actually in a similar situation to you at the moment - dropped dose, but saw a small spike soon after. I'm holding firm for the time being.
In your case
Category: Uncategorised

Replies: 4

Last updated: 18 January 2018
Carolinemb on 17 January 2018

Category: Blood tests

Replies: 2

Last updated: 17 January 2018

PCR / BCR
by Carolinemb (Jan 17)

Thank you for taking the time to explain this..

by David Fitz (Jan 17)

Hi Caroline,
Welcome to the forum.
This is one of those occasions where people get confused, and you regularly see them mixing up their terminology. But you have found the right place to get the

by Carolinemb (Jan 17)

Hi,
i am newly diagnosed this week & trying to understand everything. Could anyone explain if a BCR test is the same thing as a PCR test? And what is the difference between BCR & what PCR
Category: Blood tests

Replies: 2

Last updated: 17 January 2018
MartinZA on 16 August 2017

Category: Side effects

Replies: 2

Last updated: 12 January 2018

Benign lymph node swelling resembling lymphoma
by Tidal-Life (Jan 12)

Thanks for your in depth post, Martin;
I'm starting Dasatinib (in a few days) after 6 months on Imatinib (due to my BCR-ABL & Ph+ still being too high)
I'm shocked (but it doesn't come at a

by David Fitz (Aug 16)

Bloody hell! That all just have cranked up the stress levels to 110%. I’m so pleased this had a good ending for you, and thank you for the detailed post. I have no doubt that everything you’ve said

by MartinZA (Aug 16)

Hi everyone
This is a follow-on message from a previous post I made where I had issues with neck lumps on dasatinib but I thought that the results of a difficult six-week experience merited their
Category: Side effects

Replies: 2

Last updated: 12 January 2018
Shammell on 8 February 2016

Category: Food & fitness

Replies: 7

Last updated: 12 January 2018

6 Months into treatment and wanting to get fit again. But the weight wont shift!
by chrissie (Jan 12)

Oh goodness yes, yes ,yes. I got fed up with the weight gain on 400mgs imatinib and hit the gym 3 times a week + keep fit class+ walking miles in hilly Devon - and the weight remained the same

by Tidal-Life (Jan 12)

Just my few cents, not necessarily useful, just my experience as I find the topic interesting: "before" cml can be "way before" or just up-to/before diagnosis...in my case I started dieting 6

by EvaH (Jan 12)

Hi there

My sympathies, I also find it harder to shift weight now on imatanib. It took 3 months of being on 1500cal per day for me to shift anything and I visited my mum for 3 weeks and

by abhay (Jan 8)

I know this is tough task to do but doing ragular workout than you will found the changes in your body trust me keep practicing hard and harder as all as i can say to you now.

http://
Category: Food & fitness

Replies: 7

Last updated: 12 January 2018
Tidal-Life on 26 September 2017

Category: Uncategorised

Replies: 3

Last updated: 12 January 2018

Introduction
by Tidal-Life (Jan 12)

Update: after around 6 months on Imatinibmy bloodcounts are basically back to normal, BUT the Philadelphia Chromosome / BCR-ABL is still too high in percentage, so the Doc (the "European LeukemiaNet

by Tidal-Life (Sep 28)

Nice meeting you David; yes, I read in the other thread you were switched to dasatinib - I'll see how I respond/what happens reg.side effects ;)

Great to hear you respond well and feeling good

by David Fitz (Sep 28)

Hi there, and welcome to our little club that we'd all prefer not to be members of! Thanks for introducing yourself.
It sounds like you're responding well to your treatment - which is great. I was

by Tidal-Life (Sep 26)

Was looking for a section in the forum or the profile to introduce myself, but didn't find any - as you can sense I'm new in here..my apologies if this isn't the right section, please move my post.
Category: Uncategorised

Replies: 3

Last updated: 12 January 2018
vonnie on 2 January 2018

Category: Uncategorised

Replies: 2

Last updated: 7 January 2018

Flu
by vonnie (Jan 7)

Hi and thanks David for your reply this is where i think the forum is good it gives you confidence and reassurance so thanks again

Vonnie

by David Fitz (Jan 4)

Hi Vonnie,
Despite all the warnings the Australian flu doesn't seem to have spread as much as expected.
At this time of year I always am extra careful to be near to people obviously a bit sick. I

by vonnie (Jan 2)

hi i havent been on for a while and doing really well but just wondering with all these reports of australian flu about do you need to be extra careful if you have cml and if you did have flu
Category: Uncategorised

Replies: 2

Last updated: 7 January 2018
rsgiles on 2 January 2018

Category: Blood tests

Replies: 10

Last updated: 5 January 2018

PCR test
by Justine (Jan 5)

Ellie a big thanks to you, too (please see my response to David; same to you).

by Justine (Jan 5)

David, I just want to thank you for that very smart, kind, reassuring and helpful reply. After 9 months since diagnosis I am still constantly perplexed by it. Your statement clarifies a great deal.

by Ellie Regina Grey (Jan 5)

Hello,
I concur with what David has put down regarding the term "undetectable" to translate a PCR test result.
To me, the word "undetectable" has a close link with the word ""impossible" in my

by David Fitz (Jan 4)

Hi,
0.004% means four in one hundred thousand. 0.0092% means ninety-two in a million (nine and a bit in a hundred thousand). If one is IS and the other is not IS (international standard) it
Category: Blood tests

Replies: 10

Last updated: 5 January 2018