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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DJ on 31 May 2016

Category: Side effects

Replies: 7

Last updated: 13 November 2016

Managing high blood pressure from Tasigna - advice?
by DJ (Nov 13)

Thank you Sandy
Since the post she has gone up on her accupril and it seems to have brought her blood pressure under control. Now I'm a bit concerned since your post mentions they should

by sandy craine (Sep 23)

Hi DJ,
I feel for you! Your mum either needs to see a more engaged Haematologist who will take steps to change her TKI from nilotinib OR if she still cannot be persuaded then her current doctor

by DJ (Sep 20)

Thanks
I'm back to the thread, revisiting this issue yet again and reading your responses. Thank you all for responding.
We were hoping the blood pressure problem would go away, but here

by Ben K (Jun 7)

Hi there, Tasigna has cardio vascular side effects that are well documented. Your doctor must pay attention to this and arrange an appropriate referral to a cardiologist. She needs to be
Category: Side effects

Replies: 7

Last updated: 13 November 2016
Louise82 on 26 September 2016

Category: Side effects

Replies: 2

Last updated: 7 October 2016

side effects
by BeckyClark (Oct 7)

I've just started Imatinib (2 weeks)and consultant named this as a likely side effect. said to use Immodium if bothersome, but only I'm now only getting it once every other day, so just put

by Olivia (Sep 27)

Yep, me too, on & off over the years. Immodium generally sorts it.
Olivia

by Louise82 (Sep 26)

Okay-cant see any mention of this on Forum.
Has anyone been troubled by diarrhoea. I know Consultant & his registrar asked me every time I saw them if I had diarrhoea. I was & it
Category: Side effects

Replies: 2

Last updated: 7 October 2016
grells on 4 August 2016

Category: Side effects

Replies: 3

Last updated: 1 October 2016

New to this - have questions!
by Irishmammy (Oct 1)

HI everyone, my little one has been on Imatinab for 2 years and she went from blond curly hair to straight dark brown and it actually got thicker. I suppose patients are different, thank God for

by Louise82 (Sep 26)

Hi,
I noticed my hair was thinning before I was diagnosed-obviously one of the symptoms. It is still thinner & I guess something I have to realise is here to stay.
Take Care
Louise

by David Fitz (Aug 9)

Hi there!
Hair thinning is a documented side-effect of nilotinib, though I don't think it's particularly common. Unfortunately I don't think there's an obvious solution to it. When I

by grells (Aug 4)

Hi there. Am pretty new to all this, diagnosed in March this year and currently kicking back for the Summer having been signed off work until hopefully October. All going well so far on
Category: Side effects

Replies: 3

Last updated: 1 October 2016
KerrieLouise on 10 September 2016

Category: Side effects

Replies: 4

Last updated: 10 September 2016

Advice needed
by chrissie (Sep 10)

Hi Kerrie
Sorry to hear about your problem. You can certainly do without this. If i were you I would contact my doctor - GP/haemo/specialist nurse asap and ask for advice.
Hope things improve

by Parklife (Sep 10)

Hi Kerrie.
I am male with CML so can't comment direct, however I just wanted to mention someone I know who was diagnosed many years ago (she is doing well now!) to maybe make you feel better. One of

by KerrieLouise (Sep 10)

hi
I am on Imatinib 400mg
my white blood count was 31.6 and after 1 week and 4 days of treatment is down to 18.4 my platelet count is 1250 now it was 1841
the nurse said my

by David Fitz (Sep 10)

Hi Kerrie,
Welcome to our little club. No doubt it wasn't a membership you wanted but we're all here to help each other.
Do you have a copy of your latest blood report? I wonder perhaps if
Category: Side effects

Replies: 4

Last updated: 10 September 2016
sprycml on 24 July 2016

Category: Side effects

Replies: 12

Last updated: 28 August 2016

Questions from one newly diagnosed and on Tasigna
by bdmemphis (Aug 28)

I was 35 when I was diagnosed in March 2015. Male. I was on Tasigna before I had to switch to a new TKI. Like you I lived a pretty athletic life prior to diagnosis. I'm in the

by grells (Aug 4)

hi there. i am newly diagnosed too (march 2016). in response to your first question i take ibuprofen for the aches and pains i experience. don't get them all the time - perhaps on days of

by chrissie (Jul 29)

Thank you again. David, Yes, I'm taking 20mgs and it's working just great ( at the moment). Good to now that there's a choice if I need it.
Best
Chrissie

by David Fitz (Jul 28)

Last thing from me on this ... I imagine your doctor has prescribed you 20mg. That's the normal starting dose. If it's not working 100%, just take more (discussed with your doctor, of course
Category: Side effects

Replies: 12

Last updated: 28 August 2016
GBear on 27 July 2016

Category: Side effects

Replies: 4

Last updated: 28 July 2016

Joint stiffness and bone pain after 5 years??
by GBear (Jul 28)

Thanks John, I will keep you posted if anything turns up! And thanks for your thoughts and info, it helps to know I'm not the only one feeling this way

by GBear (Jul 28)

Hi David,
Thanks for taking time to reply! I am 50 years old and have always been athletic and active up until May of this year when this problems started. It has gradually gotten worse in all of my

by David Fitz (Jul 27)

Hi,
I'm sorry for such a short message, but I'd prefer to reply quickly than not at all.
Some side effects of TKIs can come on late. For example, a pleural effusion can occur with a

by Parklife (Jul 27)

Hi
Sorry to hear about your joint stiffness and bone pain.
I have been on 4 TKI's since diagnosis in June 2013. Personally I started to experience joint stiffness approximately 7/8 month into
Category: Side effects

Replies: 4

Last updated: 28 July 2016
shawn_143 on 16 June 2016

Category: Side effects

Replies: 3

Last updated: 20 June 2016

Recently Diagnosed with CML
by shawn_143 (Jun 20)

Thank you So much Sandy and David, good to hear that and got more confidence
i have my Next visit to Dr in 4 days with my CBC (after 10 Days i am checking my CBC). and for the past 3-4 days i

by David Fitz (Jun 16)

HI Shawn,
I was the same age as you when diagnosed.
You're going to be fine - almost certainly. You ought respond well to therapy and live a normal life-span, even if complicated with medicine (

by sandy craine (Jun 16)

Hello Shawn and welcome,
To put your mind at rest I will say first that over 90% of patients diagnosed in chronic phase CML respond very well to TKI therapy and go on to live out their normal life

by shawn_143 (Jun 16)

Hi,
I am Shawn 34Yrs old, i live in India. I am recently diagnosed with CML (2-3 weeks back) and i am on Veenat 400 MG (Generic Version of Imatinib) once a day.
Initially I was 60K of WBC
Category: Side effects

Replies: 3

Last updated: 20 June 2016
insclrk on 5 June 2016

Category: Side effects

Replies: 1

Last updated: 5 June 2016

Itching with gleevic
by sandy craine (Jun 5)

He should talk to his doctor about a short course of steroids/hydrocortisone and/or stopping therapy for a few weeks to see if it is a side effect of this TKI. If the rash does not resolve with a

by insclrk (Jun 5)

My son has been taking Gleevec 400mg for over a year now. He has outbreaks of scabie type sores all over his body including his penis area. Has anyone else experienced this? What
Category: Side effects

Replies: 1

Last updated: 5 June 2016
Lopaulpa on 16 May 2016

Category: Side effects

Replies: 2

Last updated: 17 May 2016

Do you eat any supplements, vitamins and such?
by David Fitz (May 17)

Vitamin D because I'm low on that, but then again nearly everyone in the UK is!

by darley (May 16)

No. I just have a well balanced diet so get everything I need there. Also have regular blood,checks so i know I'm neither deficient or have problems with malabsorption.

I'm not a

by Lopaulpa (May 16)

I am wondering because of the low energy I have and all that side effect business with me taking Tasigna, I was wondering if ya'll take any vitamin supplements or something like that to get some
Category: Side effects

Replies: 2

Last updated: 17 May 2016
Parklife on 5 May 2016

Category: Side effects

Replies: 9

Last updated: 9 May 2016

Steroids and lesions
by darley (May 9)

Hey it's been fabulous and sunny here this week. Mind you we were white over with snow the week before.

by Parklife (May 8)

Hi Sandy
Many thanks for all this information and links.
Interesting point about the plasma testing, this is something that hasn't been mentioned, I'm not saying this hasn't been tested, but to my

by sandy craine (May 8)

John-Paul,
Re your vitamin D3 deficiency... well you can do something about that quite quickly-
a. sit in the sun as much a possible - Darley suggests a holiday but if you can't manage that

by darley (May 8)

For sure you've got a dilemma and a big decision to make. Sounds like you need a holiday in the sun to boost your vitamin D and give you some head space to think it through.
All the best.
Category: Side effects

Replies: 9

Last updated: 9 May 2016
Lopaulpa on 3 May 2016

Category: Side effects

Replies: 6

Last updated: 8 May 2016

New here, I am having a difficult time.
by Lopaulpa (May 8)

Also, sex life is not very good at the moment because of all of this.. my energy is not good at all and I have used Cialis from the doctor and it helps with keeping it up but then also the energy

by Parklife (May 4)

It may be worth asking where you are from a molecular perspective. If you have a very good response and therefore are sensitive to TKI's that may also be worth discussing a redution of Tasigna

by Lopaulpa (May 4)

Thank you for the reassuring David, I am glad I am not the only one this is happening to.
It has been so hard, I am 28 and I can barely clean up around the house without being exhausted and dripping

by Lopaulpa (May 4)

Hi and thanks for kind words, I am also glad I found this forum.
I switched the meds because I think the side effects were even worse on Imatinib, and I was moving from Iceland to Denmark so my
Category: Side effects

Replies: 6

Last updated: 8 May 2016
Ben K on 4 May 2016

Category: Side effects

Replies: 1

Last updated: 5 May 2016

Nilotinib and Lipase
by sandy craine (May 5)

Hi Ben and welcome to this forum. Nilotinib can cause elevated seem lipase, but unless you have had a previous history of pancreatitis or are suffering abdominal symptoms then it is most likely that

by Ben K (May 4)

Hi - I am Ben and am a 50 year ex-Pom living in Australia - there doesn't seem to be a support group like this in Oz so I decided to hang out here - hope that's OK!
I was diagnosed in March
Category: Side effects

Replies: 1

Last updated: 5 May 2016
BillyW on 19 April 2016

Category: Side effects

Replies: 4

Last updated: 21 April 2016

Sore feet, numbing of toes, toes turning white and aching calves
by sandy craine (Apr 21)

Hi Billy,
It seems from what you say that you are suffering from a side effect common to most TKIs... muscle cramps, stiffness etc. I, and I think a few others, have used supplements to good effect

by BillyW (Apr 20)

David forgot to mention these symptoms started when I was on NILOTINIB

Billy

by BillyW (Apr 20)

Hi David,
Thanks for replying. When I am resting my feet at times feel numb and cold. I have done stretching, my daughter is a sports injury therapist and I have been to a private osteopath and

by David Fitz (Apr 20)

Hi Billy,
That doesn't sound nice at all. I'm on dasatinib, and have found since I started I have somewhat ankles and calves. It feels like strong stiffness and I cramp up easily. I've
Category: Side effects

Replies: 4

Last updated: 21 April 2016
Emily on 15 April 2016

Category: Side effects

Replies: 2

Last updated: 15 April 2016

Nilotinib side effects
by Emily (Apr 15)

Hi Sandy,
Thanks so much for your information and encouragement!
Emily

by sandy craine (Apr 15)

Hi Emily,
it is not unusual for clinicians to manage the effects of TKIs by dose reductions in the first few months of therapy, especially in the case of raised liver enzymes. I am sure your body

by Emily (Apr 15)

Hi,
I was diagnosed as CML on Feb 2016 and was started on Nilotinib, 300mg once per day. 3 weeks after that, my liver enzymes level was 5 times above normal. I was asked to stop Nilotinib for 2.5
Category: Side effects

Replies: 2

Last updated: 15 April 2016
Emmawill1 on 13 April 2016

Category: Side effects

Replies: 2

Last updated: 15 April 2016

Nilotinib symptoms - missing a dose
by sandy craine (Apr 15)

Hi.... it is very likely - as David has already said - that it is coincidental that your husband felt these symptoms when he had missed a dose. What is worrying is that he had chest pain and

by David Fitz (Apr 14)

Hi Emma,
It sounds purely coincidental to me. Was it the first time he missed a dose? If so, he might have found that quite stressful in itself which could have lead to him feeling a bit off-colour

by Emmawill1 (Apr 13)

Hi,
My husband has been diagnosed with CML.
He currently takes Nilotinib 300mg x2 a day.
He recently missed his morning dose and just took his evening dose due to time lapse. Later that day he
Category: Side effects

Replies: 2

Last updated: 15 April 2016
Parklife on 14 March 2016

Category: Side effects

Replies: 3

Last updated: 27 March 2016

CML/TKI and Steroid injection advice
by Frenchguy (Mar 27)

Hi All,
Since 2 months, I am struggling with strong leg problems from the arch of the feets to the top ho the leg, including calf pains and a lot of muscles spasms every where which I manage to

by Parklife (Mar 21)

Hi John
Interesting to hear your experience of non conventional supplementation of Chinese and Thai treatments for your pains, and sorry to hear about your troubles.
I have since spoken to my

by johnw1001 (Mar 18)

Hi John,
Musculo-skeletal effects of TKi s
If you look at the product literature for many of the TKI s, for some CML patients, there are substantial issues of bone pain,joint inflammation and muscle

by Parklife (Mar 14)

Hi all.
As I have mentioned in previous posts. I am still struggling with ongoing issues. Since resuming Bosutinib I would say I have had even more of a flare up with groin, hip, knee, back and neck
Category: Side effects

Replies: 3

Last updated: 27 March 2016
Bmckenna on 7 September 2015

Category: Side effects

Replies: 4

Last updated: 7 March 2016

Sprycell as time goes in....
by Lynette (Mar 7)

Hi Stephen and Barb, I've been taking 100mg of Sprycel daily for just shy of a year now. With my Profs' approval, I take 50mg each morning when I wake up and 50mg each night when I get home

by stemeltony (Mar 5)

Hi buddy,
am on sprycel 100mg ever since after dxed last Oct 15. 2 days ago started experiencing stiff neck which started from lower back.rapid heart beat and pain in forearm as well. Went and got

by Bmckenna (Sep 9)

Thank you Sandy. I appreciate you answering in such detail and also for the links. This is all new to me. I have been out of work since my diagnosis. At times I read of people who " haven't missed a

by sandy craine (Sep 8)

Hi,

quite a few people complain of muscle and bone pain (myalgia, arthralgia) as a side effect of TKI therapy. In a lot of people this effect does ease over time and many find that it
Category: Side effects

Replies: 4

Last updated: 7 March 2016
wshi2001 on 28 February 2016

Category: Side effects

Replies: 4

Last updated: 6 March 2016

Eye hemorrhage, floater relate to Imatinib
by MartinZA (Mar 6)

Hi William
I'm not sure that this is relevant to your post, but I had a serious eye problem after starting dasatinib, so perhaps it is similar to what you are experiencing. I was watching

by johnw1001 (Feb 29)

Hi William,
Yes in the first two years of treatment eye bleeds are a known and possible side effect for some CML patients and can be quite disturbing and upsetting.In some instances this is

by darley (Feb 28)

In such circumstances I always say Get thee to an eye specialist. I always think it's best not to 2nd guess what it might be and presume it's "just" stuff that happens.

by nigel (Feb 28)

Hi William. Thank you for your post like you might also have suffered with eye bleeds, they have been quite infrequent and look worse than they are. By eye bleeds I mean this is where I am
Category: Side effects

Replies: 4

Last updated: 6 March 2016
Ole Fart on 25 February 2016

Category: Side effects

Replies: 1

Last updated: 3 March 2016

Fibromyalgia
by Parklife (Mar 3)

I have noticed that your post has dropped off without a reply yet. It may help you getting a response by perhaps some kind of picture about your stage of CML and what TKI you are on.
Hopefully

by Ole Fart (Feb 25)

Has anyone experienced change in severity of symptoms of pre-existing fibromyalgia after beginning treatment?
Category: Side effects

Replies: 1

Last updated: 3 March 2016
Parklife on 13 February 2016

Category: Side effects

Replies: 10

Last updated: 1 March 2016

Update in response to Chrissie.
by Parklife (Mar 1)

Bubble wrapped indeed.
Many thanks for your kind words. Hopefully as the weeks go by, I become closer to a more stable platform to build upon. Interesting that my IGA marker has now been clarified

by darley (Feb 27)

What a very difficult situation for you. I just sincerely hope that one way or the other that a root cause can first of all be found and then treated or managed so you've not in so

by Parklife (Feb 25)

Hi Sandy
I have researched alsorts. My only trouble being I have no idea what I am attempting to treat. I have mentioned Fibromyalgia, and have been told no, perhaps, then no again, had points

by sandy craine (Feb 21)

Hi John and Lucas,
ABL001 Phase 1 trial is - unfortunately - not open here in the UK. http://www.cmlsupport.org.uk/clinical-trials/abl001%E2%80%8B.
John... have you tried researching
Category: Side effects

Replies: 10

Last updated: 1 March 2016