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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Rebecca Bonnell on 22 August 2017

Category: Side effects

Replies: 0

Last updated: 22 August 2017

Severe dental erosion associated with imatinib mesylate therapy
by Rebecca Bonnell (Aug 22)

I have been having severe problems with my teeth breaking and eroding and i eat healthily and cook proper meals with veg or salad for myself(Trained Chef) and i wondered if this was down to
Category: Side effects

Replies: 0

Last updated: 22 August 2017
BrianUK on 21 July 2017

Category: Side effects

Replies: 2

Last updated: 18 August 2017

Nausea
by Richard42 (Aug 18)

Hi Brian
While not as bad as ulcers, I had significant acid reflux on imatinib (I was a bit prone to it before I started but it was much worse on imatinib). I think you may be right that the

by EvaH (Aug 17)

Oh thats interesting!
My cure for post imatanib nausea is 2 big squares of dark chocolate.

by BrianUK (Jul 21)

I have been taking Imatinib 400mg for a long time. After a few years I started to suffer from nausea shortly after taking the tablets. An endoscopy showed that i had stomach ulcers. This issue was
Category: Side effects

Replies: 2

Last updated: 18 August 2017
Hannah Geddes on 24 June 2017

Category: Side effects

Replies: 7

Last updated: 17 August 2017

Headaches - Please help!
by EvaH (Aug 17)

Meditation really helped with my migraines and mine were mostly stress triggered. i suspect the TKI headaches are triggering stress migraines. Check out Dhamma Dipa in UK for introductory 10 day

by sandy craine (Jul 3)

Hannah,
I think if you feel you are not being listened to then you should follow your instinct and ask for a referral... maybe to Bristol and the clinician that Chris has recommended. As there are 5

by cdw5000 (Jul 2)

Hello Hannah,

I'm sorry to hear you're having a bad time on nilotinib. When I first started taking nilotinib I had the same symptoms you describe but they settled relatively quickly. You're

by Hannah Geddes (Jun 30)

Hi Sandy,

Thank you for your reply.
My headaches are very similar to Migraines. When I say I have a migraine often I class that as me being bed bound, unable to move without being sick
Category: Side effects

Replies: 7

Last updated: 17 August 2017
Lady Doc on 10 July 2017

Category: Side effects

Replies: 7

Last updated: 17 August 2017

Need some peer support.
by EvaH (Aug 17)

Dear Lady
So very sorry to hear about your troubles. I cannot offer much in the way of medical advice, I have CML and some close friends have fibro and chronic pain and I cant imagine dealing with

by johnw1001 (Jul 14)

Hello,
i read your post with interest as back in the 1980 s I was eventually diagnosed and treated for pulmonary sarcoidosis.Initially I was mis-diagnosed and then mis-treated with 3000mg of strong

by Harsh (Jul 11)

Hi,

Iam sorry for your suffering from pain. I was dx in nov 2016 and started on nilotinib .I had body pain for last 10weeks,but not showing any thing on x ray and scans.It started with left

by sandy craine (Jul 11)

Hi and welcome,
As you are in the US you could try contacting the National CML Society - they advise on all aspects of CML for patients in the US and also on how to connect with others in your area
Category: Side effects

Replies: 7

Last updated: 17 August 2017
gordyboy on 13 August 2017

Category: Side effects

Replies: 0

Last updated: 13 August 2017

sprycel (dasatinib) side effects
by gordyboy (Aug 13)

have read that intolerance to some side effects are sometimes sorted by interruption of the treatment Be interested to hear if anyone has been in this position.
Regards
Category: Side effects

Replies: 0

Last updated: 13 August 2017
annie t on 31 December 2016

Category: Side effects

Replies: 9

Last updated: 1 August 2017

Cramps
by Richard42 (Aug 1)

Cramps were one of the main imatinib side effects I had. Hands, feet and back. They were quite significant at first but over time they reduced to the extent they had essentially

by annie t (Jul 22)

Hi - Yes even I get cramps in hands, abdomen and back. Breasts cramps are reduced to a greater extend. Good that you have started exercising. It does help.
Regards
Annie

by EvaH (Apr 19)

Checked and Magnesium levels are fine. With a bit more weight lifting the hand cramps are not happening now, still a few pre-cramps on the old abs but prob due to non-usage also

by sandy craine (Apr 2)

Eva, you might want to check your magnesium levels and try supplementing with Mag. Sandy
Category: Side effects

Replies: 9

Last updated: 1 August 2017
Brynhenefield on 15 July 2017

Category: Side effects

Replies: 2

Last updated: 18 July 2017

Nausea/Vomiting & Intestinal Cramping
by johnw1001 (Jul 18)

Hi Bryn,
May I make a few observations but perhaps I really dont know the complete answer.It might be useful to revue when the imatinib is taken and with what type of food.There have been threads on

by David Fitz (Jul 15)

My gosh Bryn, that sounds awful.
In all honesty, the way I would manage that situation would be to demand to switch to another TKI. It seems, from what you have said, that imatinib is causing

by Brynhenefield (Jul 15)

Hi everyone!
My dad was diagnosed with CML in April 2017. He has been on 400mg imantinib since late April. Since starting he has struggled with severe vomiting and wretching. It happens
Category: Side effects

Replies: 2

Last updated: 18 July 2017
MartinZA on 28 June 2017

Category: Side effects

Replies: 4

Last updated: 4 July 2017

Neck lump issues
by johnw1001 (Jul 4)

Hi Martin,
I may be able to add to what you are experiencing in that I commenced Glivec in 2007 and in 2012 experienced a swollen lymph node "a small posterior triangle lymph node but there was

by MartinZA (Jun 30)

Dear Sandy and Philip
First, thank you once again for replying to my posting and for the very good advice you gave. Sandy, I decided to go under the knife after all because I felt it was the

by Philip (Jun 30)

Hi Martin: I have been on dasatinab for a little over 8 years now. I did have some sensitivity in the lymph node areas especially under my arms. I've not experienced the degree which you have

by sandy craine (Jun 28)

Martin,
This must have been really worrying for you and it is good that you didn't have to wait around too long for the results of your biopsies. Very reassuring that they were negative and I assume
Category: Side effects

Replies: 4

Last updated: 4 July 2017
MartinZA on 6 June 2017

Category: Side effects

Replies: 3

Last updated: 7 June 2017

Lumpy and grumpy
by MartinZA (Jun 7)

Hi Davide and Lucas
Thank you both so much for your detailed replies and for your reassurance. It's weird how I am like a different person in the week or so before I have to go for the

by Lucas (Jun 7)

Hey, Martin.
I have some words: as you know, i had problems with my response too and i had many "scaries" during my first two years. I have too had/have a lump and was really afraid

by davewell (Jun 6)

Hello Martin.
I was diagnosed in april 2016, in what they call "advanced phase", here in Italy at least: no real marker of the accelerated phase, so technically chronic, but a number of

by MartinZA (Jun 6)

Hi everyone

My 18 month PCR test is being done tomorrow, and this last week I've been experiencing two things that I hope are side effects and nothing more sinister. I would be
Category: Side effects

Replies: 3

Last updated: 7 June 2017
Walkereyles on 27 April 2017

Category: Side effects

Replies: 4

Last updated: 5 May 2017

Bone Pain
by johnw1001 (May 5)

Hi Garry,
Yes have had a number of episodes like this and have been on Glivec for over ten years.First some years ago it was drug interaction Glivec and antibiotic Ciprofloxacin but it

by David Fitz (May 4)

Hi Garry,
Though of course as others point out, not every ailment can be CML or TKI related I do have some experience in this regard that was very much related.
A few years back, when I was

by Olivia (May 4)

I was suffering from sciatica, too, and my GP recommended Pilates as an alternative to physio. For me, it works a treat - and I didn't have the 12-week wait for NHS physio which is the

by sandy craine (May 3)

Hi Gary and welcome,
I am not sure that changing TKI from imatinib to dasatinib would effect your replacement hip. TKIs work in a very selective way and only target the abnormal cells by shutting
Category: Side effects

Replies: 4

Last updated: 5 May 2017
carmeplas on 18 April 2017

Category: Side effects

Replies: 4

Last updated: 25 April 2017

Generic IMATINIB
by carmeplas (Apr 25)

thank you. It is being very useful, since some docs does not believe that generic may doing that.

by carmeplas (Apr 25)

It is nice to see, because our doc... does not care so much about the fact that some generic give harder troubles to patients...

by iffat (Apr 23)

i used gleevec for six months then switch to teva imatinib which is a generic drug.it seems that the side effects get more noticible for me,more puffy eyes,joint pain which i never had with gleevec.

by EvaH (Apr 19)

I had more nausea on Veenat, which is an indian generic, having taken imatanib before. I tend to like Sandoz imatanib over Teva, not sure why really...Zentiva Imatanib tabs are quite large for some
Category: Side effects

Replies: 4

Last updated: 25 April 2017
EvaH on 20 April 2017

Category: Side effects

Replies: 0

Last updated: 20 April 2017

Anemia research paper
by EvaH (Apr 20)

I've been reading up on anemia, as mine appears to be persistent. Although its thought to be "simply" a side effect of imatanib, this paper from Czech republic suggests that post
Category: Side effects

Replies: 0

Last updated: 20 April 2017
EvaH on 7 February 2017

Category: Side effects

Replies: 4

Last updated: 18 April 2017

Update on my eye issues and side effects with Veenat
by EvaH (Apr 18)

I've now had an avastin injection in both eyes, leftie about one month ago and rightie one week ago. Vision problems seem to have completely cleared in the left, I still have some residual in

by EvaH (Mar 9)

Thanks Sandy!

I have since learned that high blood counts cause VEGF a protein which leads to neovessel proliferation in the retina - basically the starving retina grows its own vessels but

by sandy craine (Mar 9)

Good luck with the eye issues Eva... Please let us know how this additional therapy works,
Sandy

by EvaH (Mar 4)

Update 2: We ve moved on from lasers to treat my retina problems to an off-label use of Avastin injection to kill off all the abnormal vessels at once. At least I hope it will!
Category: Side effects

Replies: 4

Last updated: 18 April 2017
cmljax on 19 February 2017

Category: Side effects

Replies: 9

Last updated: 10 April 2017

Skin Cancer - 7 and counting in 4 months
by David Fitz (Apr 10)

That must all feel encouraging - an excellent response to CML in a relatively short period of time.
Keep us up to date!
David.

by cmljax (Apr 10)

I am happy to report that after approximately 1 month on reduced Tasigna dose (from 600 to 450 MG), my PCR improved again from .006% to <.003%. The incidence of skin lesions has also

by cmljax (Mar 13)

After a lot of discussion with a lot of different people, some on this site and some on the LLS site, I decided to press my oncologist for a dose reduction from 600mg - 450mg after just 5 months on

by sandy craine (Mar 5)

I have sent you a private message today. It seems that there is some evidence of nilotinib and SCC but it is rare. You have a really good response to TKi therapy so you can be confident that
Category: Side effects

Replies: 9

Last updated: 10 April 2017
chrissie on 10 March 2017

Category: Side effects

Replies: 4

Last updated: 14 March 2017

Bone density
by chrissie (Mar 14)

Thanks, Sandy. I shall definitely look into this.
Best Chrissie

by sandy craine (Mar 11)

Hi Chrissie... sorry to hear you are having ongoing problems since you broke your arm. Not sure how to respond other than to suggest you take a look at natural progesterone cream and the link

by chrissie (Mar 11)

Thank you, Olivia. I think that as well as sex education in schools, they should teach kids what getting old is like so they, at least, are prepared!!
Best
Chrissie

by Olivia (Mar 11)

Hi Chrissie
I haven't had any breakages - I just wanted to say that I'm sorry you have had all this to cope with. I'm sure you will let us all know how you get on.
Best
Olivia
Category: Side effects

Replies: 4

Last updated: 14 March 2017
sprycml on 27 February 2017

Category: Side effects

Replies: 7

Last updated: 11 March 2017

Itching in ... sensitive places?
by sprycml (Mar 11)

Thanks everyone! Glad to know I'm not the only one. Will definitely be trying some of these remedies.

by davewell (Mar 10)

Sprycml, I had exactly the same problem, same exact areas. I am on 140mg Sprycel.
For, ahem, the front:
One thing that helped me a lot was using 100% cotton underwear; I believe because

by sandy craine (Mar 9)

Hi Adolfo,
I am not surprised that the cream you used has helped with the itching you have experienced as a side effect of taking nilotinib as it is a (synthetic adrenocorticosteroid for

by Adolfo (Mar 6)

I had these problems on my anus. I was getting crazy. I used several products recommended by doctors and nothing worked. One day, after taking a shower, I decided to use a cream that I use for the
Category: Side effects

Replies: 7

Last updated: 11 March 2017
DJ on 11 February 2017

Category: Side effects

Replies: 3

Last updated: 20 February 2017

What will happen if mom takes Tasigna 9 hours apart instead of 12?
by DJ (Feb 20)

Thanks you guys. She took it once and it about knocked her out - she's very sensitive to it - so she decided to go back to taking it before bed because it's so strong for her it's

by sandy craine (Feb 16)

Hi,
You should advise your mother that if she eats a meal within 1 hour of taking her nilotinib the she is risking an increase in the levels of nilotinib in her blood and therefore an increase in

by Ben K (Feb 13)

Hi,
I can't tell from your post if your mum wants to take her Tasigna always 9 hours apart or if she is just trying to adjust her dose times.
I recently travelled overseas and needed to adjust

by DJ (Feb 11)

She's trying to adjust her eating schedule in the evening. She is in remission now. She just took one (it's right before dinnertime) but says she is feeling dizzy.
Category: Side effects

Replies: 3

Last updated: 20 February 2017
sg3 on 13 February 2017

Category: Side effects

Replies: 1

Last updated: 16 February 2017

Nilotinib side effects
by sandy craine (Feb 16)

I suggest your friend talks with his clinician as the side effects you describe seem to be quite severe. It may be that they do diminish over time as most side effects do.... however, if his quality

by sg3 (Feb 13)

My friend is on 800mg of nilotinib a day, since Jan 17. May-Dec 16 previously 400mg of Imatinib a day, but had to change as didn't reach 2nd stage remission.
He has a headache through the left
Category: Side effects

Replies: 1

Last updated: 16 February 2017
xdesireemartinez90 on 22 July 2016

Category: Side effects

Replies: 11

Last updated: 7 February 2017

6 year old with imatinib bone pain
by EvaH (Feb 7)

In case its ever useful there is a world specialist in CML based in Galway....Prof Micheal O Dwyer.

by Irishmammy (Oct 10)

Thanks David, it was a very useful discussion! i really appreciate you making the link.

by David Fitz (Oct 1)

If you don't get the answers you want on the dental front let me know. My sister is a paediatric dental consultant in Crumlin hospital and is much more clued up on CML than your average dental

by Irishmammy (Oct 1)

Janey Mac!
Thanks David for the tips.
It's still all a bit new to us, we were muddling through and trying to go on as normal even though it will never BE normal.
We have dental on Wednesday to
Category: Side effects

Replies: 11

Last updated: 7 February 2017
pharmatuk on 12 November 2016

Category: Side effects

Replies: 2

Last updated: 25 November 2016

need help
by johnw1001 (Nov 25)

Hi Pharmatuk,
If you are dragging one leg this would indicate that you should investigate the source of the weakness that is contributing to the problem-it may be joint or muscular weakness that

by sandy craine (Nov 15)

Hi,
side effects do lessen over time... but fatigue seems to be a pretty consistent one so you need to pace yourself- at least for the first 6 - 12 months. Conversely many of us have found that the

by pharmatuk (Nov 12)

came down with CML about 4 months ago....using Gleevic 400....had no side effects until about 3 weeks ago....no am tired all the time....have lost strength in m y left leg....hard to stand up from a
Category: Side effects

Replies: 2

Last updated: 25 November 2016