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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cml.cure on 2 February 2016

Category: Side effects

Replies: 2

Last updated: 21 February 2016

Side effects of Imanib 400mg (Mfg by Intas, India)
by glo (Feb 21)

I get good results with having cereal that's fortified with iron. Taking pills is very hard on the stomach-but if you can get it through food it doesn't hurt and is supposed to get

by darley (Feb 3)

Seems she has iron deficiency anaemia. There's a lot of reasons why someone could have that and not necessarily linked to imatanib at all.
Suggest she discussed with her

by cml.cure (Feb 2)

My mother (age 69) is a CML patient and she is taking Imanib 400mg for last 3 years. Imanib helps reduce the WBC count from 100000 to 4000 which is within acceptable limit. Lately her haemoglobin
Category: Side effects

Replies: 2

Last updated: 21 February 2016
mrobinson on 12 December 2015

Category: Side effects

Replies: 2

Last updated: 14 December 2015

Support level needed for treatment
by sandy craine (Dec 14)

Hi Mike,
Like Darley has said, it is difficult for those of us based in UK/Europe to advise on the US healthcare system as it is based on the level of private health insurance plan you have.

by darley (Dec 13)

Hi and sorry to hear the news about your son.
I seem to be first to respond to your post so need to say that this forum is prodominently UK based members. Hence we have different challenges

by mrobinson (Dec 12)

Hi,
My son Jonathan, age 28, appears to have CML. He lives in Texas, we are in Maryland.
We are helping to enroll him in healthcare plans with a Dec 15 deadline looming. If we enroll him
Category: Side effects

Replies: 2

Last updated: 14 December 2015
ed hokaj on 8 December 2015

Category: Side effects

Replies: 2

Last updated: 12 December 2015

severe fluid retention
by ed hokaj (Dec 12)

Sandy
thanks for your reply
i will be off SPRYCEL for the nexxt 3 weeks and we may be using nilotinibl(TASIGNA)

the fluid came very quickly the last time
the thoracentesis was done at a local

by sandy craine (Dec 9)

Where are you being treated? If it is a specialist haematology centre- and therefore experienced in treatment of CML with TKIs - they should know that one of the adverse events caused by dasatinib (

by ed hokaj (Dec 8)

I have been on SPRYCEL for 6 months at this time. I have had 2 THORACENTESES in three weeks.a total of 4.4 liters of fluid was extracted.
shortness of breath has come back and it looks
Category: Side effects

Replies: 2

Last updated: 12 December 2015
stemeltony on 30 November 2015

Category: Side effects

Replies: 4

Last updated: 3 December 2015

Bitter taste/strain in lower left abdomen (lymph node)
by stemeltony (Dec 3)

Thanks Sandy.
will update once I have seen my doc on the 7th.
cheers
stephen

by sandy craine (Dec 2)

Hi Stephen, and welcome to this forum/website. I may be coincidental but if the symptoms only appeared after you changed the time you took dasatinib (Sprycel) then try going back to you previous

by stemeltony (Dec 1)

Thanks John.
spoke to my nurse and he told me to see GP if the pain is unbearable. At the moment I am fine. My appointment is next week so I will be informing my doc about this. Hopefully it goes

by Parklife (Nov 30)

Hi Stephen.
I had pain in the inside of my groin/leg (lymph node area) whilst on Imatinib in the first few months. This was looked and turned out to be nothing. It also went away.
However we are not
Category: Side effects

Replies: 4

Last updated: 3 December 2015
seanreed79 on 22 November 2015

Category: Side effects

Replies: 5

Last updated: 29 November 2015

Just a few questions for a newbie...
by darley (Nov 29)

Yep! We can most definitely confirm that's rubbish!

I was told I wouldn't see out 3 months. That was over 20 years ago. That was rubbish too :)

by seanreed79 (Nov 29)

Thanks Sandy, Nigel and Darley
Much appreciated for advise; Tonic water and bananas on the diet now, leg pain miraculously went early this week so 10 days of it, did 5k race Saturday and it

by darley (Nov 24)

Hi Sean,
Welcome to the club no one wants to join. ;) Hang in there mate. You will be going through a period of adjustment and shock!
I was 42 when diagnosed.

by nigel (Nov 23)

Hi Sean. welcome the the new world of being a CML patient. sorry you have had to join us. I was diagnoised at 45, and put on Imiatinib. I was a keen squash played before diagnosis, playing to a
Category: Side effects

Replies: 5

Last updated: 29 November 2015
On Fire on 28 November 2015

Category: Side effects

Replies: 2

Last updated: 29 November 2015

anger issues
by Parklife (Nov 29)

Hi
I would personally be inclined not to rule out your TKI causing or at least contributing to your symptoms. I believe if you Google low mood or depression and Nilotinib (Tasigna) in the side

by darley (Nov 29)

Frankly, I don't think it's the medication and I think it would be wrong to try to look purely at that as an explanation.
Cancer diagnosis is a BIG thing to deal with and you are you

by On Fire (Nov 28)

Hi all
Its been a while since logging in. It's now a year 2mths since cml diagnosis. All is going well and I'm responding very well to treatment. However I feel sad at time I don't know why. In
Category: Side effects

Replies: 2

Last updated: 29 November 2015
Lisabragg on 28 September 2015

Category: Side effects

Replies: 5

Last updated: 29 October 2015

spyrcel side effects
by Anonymous (Oct 29)

I will be on Sprycel 3 years this January. Initial dose caused severe fatigue, so severe I could not get out of bed. My oncologist decreased it to 70mg/day, 5 days a week and I can now

by Andey (Oct 2)

I have been on Sprycel (dasatinib) for several years now, after I stopped responding to Gleevec. My experience has been that the side effects are at their worst when first starting on the treatment

by sandy craine (Sep 28)

Hi Lisa, I am sure the side effects will subside eventually. Maybe your son needs to know how TKIs actually work - you have to keep the plasma level of the drug (whichever one it is) constant

by LS (Sep 28)

Hi, Lisa,
My friend takes Sprycel for a little more than two weeks now. He has nausea and could not eat properly. As a result, he has lost 3 KG... Wee hope that it will disappear with the time
Category: Side effects

Replies: 5

Last updated: 29 October 2015
Moirah on 14 October 2015

Category: Side effects

Replies: 3

Last updated: 19 October 2015

1st 3 months of imatinib - your experiences?
by darley (Oct 19)

Bug away all you like. It's a huge thing getting a cancer diagnosis. There'll be "stuff" you want to know and better understand.
I saw your post last

by sandy craine (Oct 17)

Hi Moirah,
good to see your haemoglobin is going up... you should feel less tired the higher it goes (check the CML Facts page for normal ranges of all blood counts) . You wbc is well within the

by Parklife (Oct 15)

Hi Moirah
First of all, don't be sorry for asking questions and never feel like you are bothering people, that would be my first bit of advice. Especially on this forum, that is what we are all

by Moirah (Oct 14)

Hi everyone I hope you are all doing well, I was dx July this year been on imatinib 400mg since 20/7.

I'm a worrier, overthinker and think I prob do bug people with my need for reassurance for
Category: Side effects

Replies: 3

Last updated: 19 October 2015
Judith on 3 October 2015

Category: Side effects

Replies: 8

Last updated: 17 October 2015

Dasatinib side effects
by Judith (Oct 17)

Hi Andey
Thank you so much for your helpful comments. My doctor has agreed to lower my dosage to 80mg so I hope this will ease my symptoms. In the meantime I will certainly ask about a '

by sandy craine (Oct 13)

Hi Andey, good to hear you have some control over your 'difficult friend' (what a great way to describe your therapy ;o). I do know of others who manage their disease very well with even

by Andey (Oct 11)

Hi. I understand just what you're going through. I have also been on Dasatinib for about the same amount of time, after about 1 year on Gleevec. Fluid buildup around the heart and lungs has been

by wshi2001 (Oct 10)

Hi, Judith,
I also took Dasatinib at one stage. But due to heart pumping caused breathless, I switched to Glivic. If your counts are low enough, say below 0.1%, I think you can try other
Category: Side effects

Replies: 8

Last updated: 17 October 2015
nithisevaguru on 5 August 2014

Category: Side effects

Replies: 14

Last updated: 5 October 2015

CML and Hip and Back pain
by sandy craine (Oct 5)

That's very interesting ... which method of supplementing with magnesium did you use?
Sandy

by Beekayporter (Oct 5)

I had extreme muscle cramps in my calves, feet and hamstring, turned out my magnesium levels were very low, doctor suggested supplements and after several months the cramps abated

by angela (Sep 9)

Hi Sandy I have been TKI free now for 15 months under Prof Jane Apperley

When I came off TKI's I had awful pains mainly in my toes/ feet , hands and fingers

Now it in my finger joints

by angela (Sep 9)

As a result of stopping, 111 of the 200 patients (56%) remained therapy-free after stopping TKIs , and 89 relapsed. Like in the STIM study, most relapses occurred very quickly within the first 6
Category: Side effects

Replies: 14

Last updated: 5 October 2015
Phillip A on 17 September 2015

Category: Side effects

Replies: 5

Last updated: 5 October 2015

Stopped Glivec Destiny Trial
by darley (Oct 5)

Seems I can't think logically. Though I can count ;)
I've done a year on half dose but I have to continue on half a dose for 13 months and until my NEXT appointment when I

by chrissie (Sep 20)

First I must congratulate you, Barry. What a great result - long may it last for you on TFR. Hope the pains soon go.

I am currently just into month 12 on half dosage in DESTINY (and waiting

by Phillip A (Sep 18)

Many thanks for your comments Sandy.

I will try some Vitamin D3 supplement. Although I get plenty of sunshine as I am a keen vegetable gardener and beekeeper, it may still not be

by sandy craine (Sep 18)

Barry,

congratulations, that's really good news. Tonight I attended a conference in London where patient's TFR was being discussed. It seems that a lot of clinicians -throughout Europe- are
Category: Side effects

Replies: 5

Last updated: 5 October 2015
Parklife on 18 September 2015

Category: Side effects

Replies: 2

Last updated: 19 September 2015

Bosutinib and stomach/abdomen pain.
by Parklife (Sep 19)

Hi Sandy.
Thanks for getting back.
I have had bloods ran this week and apparently my liver results are normal but the Consultant said my Haemaglobin was low. He requested an Ultrasound and the

by sandy craine (Sep 19)

John... from your description of where the pain radiates from it sounds like it may be your liver. Maybe a good idea to ask for your liver enzyme levels. If they are raised it may explain the pain-

by Parklife (Sep 18)

Hi everyone. I just wondered if anyone out there currently taking Bosutinib has had any issues with abdomen/flank/lower back pain. I have been on here before for muscularskeletal pain which I have
Category: Side effects

Replies: 2

Last updated: 19 September 2015
Moirah on 7 September 2015

Category: Side effects

Replies: 3

Last updated: 11 September 2015

spleen pain?
by cdw5000 (Sep 11)

Hi Moirah,
Mt spleen took ages to feel normal again. My white blood cell count was 108,000 at diagnosis, which resulted in my spleen being twice its normal size. I recall i had twinges for up to one

by Moirah (Sep 8)

Thank you Sandy yes I'm very lucky to be at the royal in Liverpool prof Clark and the CML nurses are fab. I just feel like I would b bugging them prof Clark did say when I mentioned the pain that it

by sandy craine (Sep 8)

I am sure your notes will indicate how large your spleen was at diagnosis, but without knowing that it is difficult to say how long it will take to get back to normal. You are still at an early

by Moirah (Sep 7)

Hi Please can I ask how long it takes for spleen to go back to normal Or at least stop hurting, I was dx 20/7 been on imatinib since this date an I am getting twinges of pain around spleen area
Category: Side effects

Replies: 3

Last updated: 11 September 2015
Gst on 24 August 2015

Category: Side effects

Replies: 6

Last updated: 3 September 2015

My SCT
by Parklife (Sep 3)

Hi
Just wanted to drop by and say best wishes. I think I speak for everyone on CML Support in wishing you the best in the next few weeks and your speedy recovery moving forward.
Please keep us all

by Gst (Aug 28)

Thanks for all your replies and kind words. I'm coming up to a week now post transplant. My neutrophils have increased slightly but should go up over the next couple of weeks. I will keep you

by skiinglaketahoe (Aug 28)

Hi, just wanted to wish you all the best. I am coming up to 8 years post SCT. In reality, I had a very easy ride with it all. I was only in hospital for about 17/18 nights and really wasn't at all

by darley (Aug 25)

It's just gone past 19 years since I had my MUD BMT.
Take each day as it comes. Try not to worry about what you can't control and effect. Don't bother dwelling on other people's experience.
Category: Side effects

Replies: 6

Last updated: 3 September 2015
Moirah on 16 August 2015

Category: Side effects

Replies: 3

Last updated: 22 August 2015

Left side tummy, back pain spleen/kidney?
by David Fitz (Aug 22)

Just to reassure you, in the early days of treatment your body is probably breaking down a lot of the disease with the help of your medication. That means there's a lot of 'waste' to get rid of,

by Moirah (Aug 18)

Thank you Lucas x

by Lucas (Aug 17)

probably your spleen getting to the normal size. try not to worry much, it happens a lot. :)

by Moirah (Aug 16)

Hi Please can I ask I've been on imatinib now coming up to 1 month and yesterday I've started to feel some pain in my left side front & back but more back, I'm thinking spleen or
Category: Side effects

Replies: 3

Last updated: 22 August 2015
robert mcadie on 23 July 2015

Category: Side effects

Replies: 11

Last updated: 13 August 2015

dasatinib
by robert mcadie (Aug 13)

Quick update, I am starting on 100mg bosutinib next Monday. Raigmore hospital did not have a license to dispense it but applied for one and got it. My consultant is starting me off on 100mg but she

by David Fitz (Aug 6)

I've been having a few problems with elevated pulse and a pounding heart recently too. Not too bad, but enough to warrant it to be checked out.
Chest x-ray, CT and EKG all were pretty normal.

by robert mcadie (Aug 4)

Thanks for advice Sandy. Still waiting for phone call from hospital but am very short of breath when I do anything physical- stairs, washing car etc. Will defo ask for a second opinion in Glasgow.

by wshi2001 (Jul 31)

hi, Rab,

I've just stopped dasatinib 3 days ago, the symptoms of heart has improved a lot, I can finally have a good night of sleep. I'm not sure why you have to take 800mg Imatinib at this
Category: Side effects

Replies: 11

Last updated: 13 August 2015
imatinib fatigue on 10 July 2015

Category: Side effects

Replies: 4

Last updated: 13 July 2015

been on imatinib 5 months
by darley (Jul 13)

Having had it for 22 years and gone through hell and back in the "old days" before TKI's when treatment options were severely limited, I can absolutely confirm that taking the likes of imatanib is a

by darley (Jul 13)

Rather than just adjusting things and reducing your medication, I'd strongly advise you to talk this through with your consultant. Believe me, you REALLY don't want to run the risk of your

by sandy craine (Jul 13)

You should not under any circumstances reduce your daily dose- You do not say which TKI your are taking 400mg of--- I assume it is imatinib? Fatigue is a side effect but as you go on you will find

by imatinib fatigue (Jul 10)

the adhd drug really helps with my energy and makes me feel normal, but im sure this is not good long term. but at the same time i feel its the only way to go out and enjoy a day out at times.
has
Category: Side effects

Replies: 4

Last updated: 13 July 2015
wshi2001 on 11 June 2015

Category: Side effects

Replies: 2

Last updated: 12 June 2015

Can I switch back to Imatinib from Dasatinib?
by wshi2001 (Jun 12)

Thanks Martin for sharing your experience. I did raise my quaestion in the forum, whether it is necessary to change from Imatinib to Dasatinib in the first place. Many fellow CMLers have also said

by martin1960 (Jun 11)

Hi William,

I have also experienced slow response but have a totally different experience to you.

My Bcr/Abl results at diagnosis 06/12/2013 were 66.5%, dropping to 10.9% by 17/04/2014

by wshi2001 (Jun 11)

hi, All, A question has been puzzling me for the last 2 months and wonder if anyone can help or somebody who has similar situation could give some advice . I was given Imatinib for the first 6
Category: Side effects

Replies: 2

Last updated: 12 June 2015
Rosary on 6 June 2015

Category: Side effects

Replies: 1

Last updated: 7 June 2015

CML, Lupus, sojrens, FM, Luckoclastic Vasculitis and microsidic anemia
by sandy craine (Jun 7)

Hi, I am sorry you have so many issues to deal with as well as CML. As you are in the US you might find the following organisation of some help with how you can source financial support for your

by Rosary (Jun 6)

I was diagnosed last year with Lupus and just 3 months ago CML. I had never heard of this before and was shocked that I was diagnosed with it. I kept telling my Primary NP that I just didn't
Category: Side effects

Replies: 1

Last updated: 7 June 2015
KS on 31 May 2015

Category: Side effects

Replies: 3

Last updated: 4 June 2015

Can Tasigna be hastening mom's dementia?
by darley (Jun 4)

I'm thinking "coincidence". A most unfortunate coincidence. I really feel for you having to cope with your mum's dementia. The thing is with dementia that it's somewhat unpredictable and

by KS (Jun 3)

Thank you Sandy,

Maybt. She is significantly more drugged on it - for instance, she used to get a second wind around 11 at night and have all this energy, and that has stopped (Which

by sandy craine (Jun 2)

Hi, I am sorry your mother is having to battle CML as well as dementia. It is not easy for you I am sure. However, I do not know of and TKi -including nilotinib (Tasigna) causing progression of

by KS (May 31)

Hi, Mom (76 years old) has been taking Tasigna (300 mg per day) for 8 months (along with a number of other unrelated meds for thyroid, blood pressure and such). The main side effects she has are
Category: Side effects

Replies: 3

Last updated: 4 June 2015