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Walt1955 on 8 February 2018

Category: Side effects

Replies: 4

Last updated: 8 February 2018

Tasigna side effects
by chevyflame (Feb 8)

Hi Louise,

You're are very lucky to have a receptive oncologist. My previous oncologist was very resistant to questions and research. I did extensive research concerning an eye issue (diffuse

by LouiseS (Feb 8)

My husband has been on dasatinib for 4 months now. He has had some of the symptoms you describe your husband is experiencing. He felt like his heart was beating really loudly in his head but this

by cmljax (Feb 8)

I started on 600 mg/day Tasigna in October 2016. I did not have flushing effect or the pulse in my eyes and ears or the joint aches. The head hurting could be folliculitis - I had that

by Libby (Feb 8)

I am on Dasatinib, but I had the "heart beat in the ear" thing. I think this is due to low platelets, as mine has all but disappeared as my platelets have started to go back to a better
Category: Side effects

Replies: 4

Last updated: 8 February 2018
Guru on 6 February 2018

Category: Side effects

Replies: 3

Last updated: 6 February 2018

Nephrotic syndrome with Imatinib?
by Isla D (Feb 6)

Sorry you've had to go through this experience with your kidneys as I can only imagine it must be distressing. Fantastic response though reaching MR5!
TKIs can effect kidneys in some people. There

by Guru (Feb 6)

Hi,

Thank you , Will consult our consultant on the dosage.

by AlastairC (Feb 6)

Hi,
I don't know anything about nephrotic syndrome, but you clearly have a good understanding of that.
I was put on 200mg of imatinib rather than 400 about 9 months after diagnosis due to very low

by Guru (Feb 6)

Nephrotic syndrome with Imatinib?

I want to know from this forum if Imatinib can cause Nephrotic syndrome and if I can stop Imatinib temporarily

I will explain my case in detail.

I was
Category: Side effects

Replies: 3

Last updated: 6 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
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
LucyandMark on 29 December 2017

Category: Side effects

Replies: 4

Last updated: 4 January 2018

High liver enzymes
by LucyandMark (Jan 4)

Thanks Emily... As it happens neither of us has touched a drop since Mark's diagnosis!! Its seems a small price to pay to let the drugs have maximum effect!
Best wishes, Lucy

by Emily (Jan 3)

Hi Lucy and Mark,
You are most welcome.
I forgot to tell you that my doctor advised me to stay away from any alcohol while my liver enzyme, ALT was high. In fact, I seldom drink wine, maybe only a

by LucyandMark (Jan 1)

Thank you Emily, thats very encouraging. Thank you so much for all those dates too, really helpful. We'll tell the consultant on Friday. Just hope too much damage isn't done in the meantime!
Happy

by Emily (Jan 1)

Hi Lucy and Mark,
I was diagnosed as having cml on 12 Feb 2016. I started to take Nilotinib 300mg once daily, which was only half the standard dose (600mg). But on 26 Feb 2016, my liver enzyme ALT
Category: Side effects

Replies: 4

Last updated: 4 January 2018
starente on 11 November 2017

Category: Side effects

Replies: 2

Last updated: 31 December 2017

Migratory joint pain?
by DaveG (Dec 31)

I've been taking Sprycel now for almost three years. Had some minor aches and pains (Charlie Horse type) mainly in toe on right foot. Now, new pain in upper back near spine and numbness in two

by sue. R (Nov 22)

Hi there, I had joint pain before I was diagnosed in June 2017, no tablet or rub would stop the pain but my blood test would show Uric acid is high. Once I started spyrcel 100 in July I was

by starente (Nov 11)

Hi everyone
i was wondering if anyone has experienced sudden onset of joint pain months after starting gleevec or sprycel? The pain migrates so one day it can be in the jaw, the next day it
Category: Side effects

Replies: 2

Last updated: 31 December 2017
MartinZA on 21 December 2017

Category: Side effects

Replies: 1

Last updated: 21 December 2017

Question on drug switching
by David Fitz (Dec 21)

Hi Martin,
Sorry for the hurried response, but here's my quick take on things:
1. Switching to imatinib is generally not done because historically imatinib is where patients started. So

by MartinZA (Dec 21)

Good morning everyone
Yesterday I had my two-year follow-up appointment with my haematologist and I had two pieces of news, one good and one bad.
Good news: after two years, I have finally reached
Category: Side effects

Replies: 1

Last updated: 21 December 2017
Sue.J on 16 December 2017

Category: Side effects

Replies: 1

Last updated: 21 December 2017

Teeth
by T and M (Dec 21)

Hi Sue. My husband has been on Imatinib for about 2 1/2 months now and I noticed first his teeth, especially the molars, were looking brown. We have not yet seen a dentist and it is on

by Sue.J (Dec 16)

Hi folks, I have been taking imatinib for 7 week now (diagnosed september) and am responding well, I have however noticed my teeth are becoming increasingly discoloured, I am finding this quite
Category: Side effects

Replies: 1

Last updated: 21 December 2017
jessicagrn94 on 30 November 2017

Category: Side effects

Replies: 1

Last updated: 4 December 2017

Side effects from Dasatinib (100mg per day)
by David Fitz (Dec 4)

Oh dear, that sounds really unpleasant for your husband.
If dasatinib is otherwise working well for your husband, I would suggest seeing a GI doctor before thinking about switching to another TKI. A

by jessicagrn94 (Nov 30)

Hi,
My partner was diagnosed with CML 6 years ago (he is now 27). About a year ago he was put on Dasatinib (100mg) and had some bad side effects for a while but they subsided and was pretty much
Category: Side effects

Replies: 1

Last updated: 4 December 2017
Stuart Johnston on 14 May 2017

Category: Side effects

Replies: 21

Last updated: 29 November 2017

Generic imatinib and associated side effects.
by fehr (Nov 29)

I went on to Intrapharm tablets some 5 months ago without problems. I have been on Activis for about 6 weeks and experienced some intense pains at the extremities - toes, feet

by Tony b (Nov 27)

To Stuart, hi and very sorry not to have replied sooner, had appointment waited 21/2 hrs, eventually a doctor came to see me and advised me that my consultant had been taken ill, asked if it was

by Kathyp (Sep 20)

I was on these for 3 months, the taste of the coating was awful, I was sick 30 mins after taking them, I'm now back on glivec x

by Stuart Johnston (Sep 20)

Hi Tony.

How are things progressing.

Since I have gone back on imatinib things have improved significantly.

But I still have a long way to go my joint movement is improving and I
Category: Side effects

Replies: 21

Last updated: 29 November 2017
alanmc on 20 October 2017

Category: Side effects

Replies: 4

Last updated: 20 November 2017

Blood clots in my fingers
by chrissie (Nov 20)

A black finger which throbbed for about 3 weeks is how I got diagnosed 8+yrs ago as my GP asked for a full blood count. I still get a bruised finger - not always the same one - for what reason I don

by AlastairC (Oct 23)

Hi. I'm not sure I'd say the issues with your fingers are probably not Glivec related, but I'd certainly get any alternative causes checked. Always wary of an assumption that something is due to a

by alanmc (Oct 22)

Hi Alastair,

Thanks for your reply. So these vein issues are probably not related to Glivec then. I'll definitely have a chat with my haematologist about serum levels in my blood. Even though

by AlastairC (Oct 21)

Alan, your symptoms in your fingers are not one I've heard before, and after 10 years on Glivec/Imatinib and being active on this site for a lot of that time I've heard of most of what it can throw
Category: Side effects

Replies: 4

Last updated: 20 November 2017
Firas Roustom on 5 November 2017

Category: Side effects

Replies: 1

Last updated: 7 November 2017

fever
by David Fitz (Nov 7)

I haven't heard of imatinib causing a high fever in an individual, but fever is listed as a potential side-effect of imatinib. I am not sure if this side effect is meant directly, or because

by Firas Roustom (Nov 5)

My father 79 years old was diagnosed with CML ph+ before three months.his white blood cell count was 126000, he took hydria to decrease the white blood cell count and after one month the white blood
Category: Side effects

Replies: 1

Last updated: 7 November 2017
K Rivera on 2 November 2017

Category: Side effects

Replies: 2

Last updated: 2 November 2017

Help dealing with CML Sprycel medication side effects! Diarrhea (sorry for tmi)
by David Fitz (Nov 2)

That sounds terrible. Dasatinib isn't massively associatd with diarrhoea - it's usually bosutinib that causes that. However your husband wouldn't be the first to experience bowel problems on

by alliswell (Nov 2)

sorry to hear about side effects that your husband having .
during my mothers diagnosis period , not cml but use of gleevec ( imatinib) and its side effect scared me most . espically pain but

by K Rivera (Nov 2)

Hello, I am writing here on behalf of my husband. He is only 26 but last week we found out he has CML and he was put on Dasinitab (Sprycel).. Ever since he has horrible diarrhea and cannot keep his
Category: Side effects

Replies: 2

Last updated: 2 November 2017
sue. R on 26 October 2017

Category: Side effects

Replies: 4

Last updated: 30 October 2017

Off spyrcel 100 for 10 days
by sue. R (Oct 30)

Back on spyrcel 100 for 4 days now, blood test in two days. Side effect, all over body itch with tiny red bumps, looks more like measles, but it's not, had that as a child. Not sure of

by sue. R (Oct 27)

Thanks, will look it up. Also will let otter know in a week after on tablet what happens.

by alliswell (Oct 26)

ok it seems like there is a problem with my first link .
google sprycel tablets fda
in my country second link that starts with
https://www.accessdata.fda.gov/drugsatfda.../

by alliswell (Oct 26)

i am copying my post from your other thread
Hi sue,
my mother has a similar situation with imatinib / gleevec at the start of her treatment . her Neutrophils and platelets werent at the danger
Category: Side effects

Replies: 4

Last updated: 30 October 2017
sharriott7379 on 20 October 2017

Category: Side effects

Replies: 2

Last updated: 29 October 2017

One year in- looking towards the future- will I ever feel better?
by sharriott7379 (Oct 29)

Hi Naj. Thanks for responding! I started off on 300mg twice a day. Had tons of skin issues- a full body rash and tons of fatigue. My doc lowered my dose to 300 once a day which makes the fasting so

by Naj (Oct 21)

Hi,
Sorry to hear about the side effects you are having with Tasigna . I was diagnosed on Jan 2017 and have been taking Tasigna 300mg twice a day. for the first 3 months I had no side effects at

by sharriott7379 (Oct 20)

Hi all! Just found this support group site and I am so happy! I was diagnosed with CML in August of 2016 just 4 months after giving birth to my daughter. I was put on Tasigna
Category: Side effects

Replies: 2

Last updated: 29 October 2017
sue. R on 24 October 2017

Category: Side effects

Replies: 3

Last updated: 26 October 2017

Diagnosed June 2017
by alliswell (Oct 26)

Hi sue,
my mother has a similar situation with imatinib / gleevec at the start of her treatment . her Neutrophils and platelets werent at the danger zone but they were falling too fast.

by sue. R (Oct 26)

Thanks David. I'd be glad when it settle down. Now I am off the tablet because all blood counts were down. After two days of not taking the tablet, tiredness seem to go away.

by David Fitz (Oct 24)

Hi Sue,
I'm glad you found us. The first few months are often very tough on people. It was for me, I know. Often things settle down - but sometimes they don't, or everything but one important thing

by sue. R (Oct 24)

Glad I found this site. Very useful forum, lots of interesting advise. Let me introduce my condition, age 59, female, healthy, exercise, lives in Canada. Was treated for knee pain etc,
Category: Side effects

Replies: 3

Last updated: 26 October 2017
Parklife on 5 October 2017

Category: Side effects

Replies: 5

Last updated: 14 October 2017

Increased cramps/spasms
by Parklife (Oct 14)

Hi Eva/John
Many thanks for your responses.
I will raise the tests you have both stated in your kind replies. I did raise any tests that may show over saturation of TKI at the last appointment with

by johnw1001 (Oct 10)

John,
Have you had a blood test for CK- Creatine Kinase,as inflammation of the muscles known as myositis is a possible cause of some musculo- sketelal issues associated with TKI s and an elevated CK

by EvaH (Oct 9)

I had a routine test done last year, it was checking how much TKi I was left in my system after 24 hours. They said the result was good ie most was eiliminated. You could ask them to test for that.

by Parklife (Oct 7)

Hi Alastair
This is all interesting stuff.
Thanks for your input and mention of Prof Flanagan, I shall look at this further.
If anyone else have any thoughts I would be interested to hear them too.
Category: Side effects

Replies: 5

Last updated: 14 October 2017
coco on 5 October 2017

Category: Side effects

Replies: 2

Last updated: 10 October 2017

Looking for Tasignia patient to share symptoms
by Arthur (Oct 10)

Hi Coco,
I was diagnosed with CML on June 8, 2015. I was on Gleevec until September 30, 2017 (ten days ago), when the doctors decided I had developed resistance to imatinib and had to move to

by Harsh (Oct 7)

I am on 800mg per day nilotinib from past 10 months.In the first month i had skin rashes which subsided later on,but didn't have other 2 symptoms.Pls check with ur oncologist.

by coco (Oct 5)

Hi,
I was taking Gleevec for 1yr and Dr. Just switched me to Tasignis. I am experiencing blood in sputum, not too much every other day, but I am very concerned. I feel something in my throat
Category: Side effects

Replies: 2

Last updated: 10 October 2017
Simon D on 16 September 2017

Category: Side effects

Replies: 2

Last updated: 28 September 2017

Dasatinib side effects
by Simon D (Sep 28)

Hello Sandy
I'm back on Nilotinib for the moment... need to decide whether to try Dasatinib again, will be seeing the specialist on Tuesday about it. In my mind it was definitely a direct reaction

by sandy craine (Sep 24)

Hi Simon,
I was wondering if the effect you had was to do with a reaction to dasatinib or it turned out to be another issue entirely. I hope all is well and you have resumed therapy?
Sandy

by Simon D (Sep 16)

Hello, wondering if anyone has had a similar experience to me when switching to Dasatinib. Having been on Imatinib, then Nilotinib for over 3 years our consultant discussed with us the option to
Category: Side effects

Replies: 2

Last updated: 28 September 2017