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ckquinn on 4 July 2019

Category: Side effects

Replies: 2

Last updated: 4 July 2019

Dasatinib reduction
by ckquinn (Jul 4)

Thanks Karinne, this gives me great encouragement, maybe I'm a bit ambitious to go treatment free, but a reduction of dose and side effects would be great.

Keep well

K

by Karinne (Jul 4)

Welcome to the club!!! I was on Sprycel 100mg for 4 years and then I went to 50mg and my pcr settled to the same level quickly. They happened to change the sensitivity of the test in the same time.

by ckquinn (Jul 4)

Well after over 4 years since diagnosis, 3 of which in MMR, I have this week started a 50% reduction of Dasatinib to 50mg.

I'm a bit anxious and would be interested in others experiences
Category: Side effects

Replies: 2

Last updated: 4 July 2019
Stuart Johnston on 12 June 2019

Category: Side effects

Replies: 5

Last updated: 3 July 2019

Generic Imatinib side effects (WOCKHARDT BIO AG)
by Nimbus2 (Jul 3)

There is a view floating around that there is no difference between branded and generic imatinib, i.e. they are medically identical in all respects. I think that few would challenge that the

by Helen (Jul 3)

Hello, Very interested reading this as I was on generic Imatinib for about 18 months before I realised the aches and pains in pelvis/legs might be because of these generic tablets. Had

by Stuart Johnston (Jul 1)

hi thanks for the reply.
I have been on Glivec Novartis imatinib since 2008 never had any issues other than the usual associated side effects i.e. Cramps fatigue and diarrhoea. All of

by TJD (Jul 1)

Hi Stuart
I actually did the clinical trials for Imatinib in 2001,as such I had to fill in a daily diary ,the o my really bad side effect I.had was severe muscle cramps in my legs and hands.I do
Category: Side effects

Replies: 5

Last updated: 3 July 2019
Diane CW on 13 June 2019

Category: Side effects

Replies: 8

Last updated: 2 July 2019

Bosutinib and BCR-ABL Issues
by onekayaker (Jul 2)

Oh sorry forgot to answer your other question, yes I am in bosutinib as well. My counts on ALT go from 17-57 depending on diet. My doctor at MD Anderson was a thumbs up on the milk

by onekayaker (Jul 2)

So she thinks she is getting a “true” reading with you on steroids??? I’m not s Doctor, nor have I played one on TV, but really? Long term use of steroids are not the

by hannibellemo (Jun 30)

Diane, I took Gleevec for 9 months back in 2009. My liver enzyme counts went sky high very quickly, ALT 1500 and AST 1300. I was switched to dasatinib without a blip. I had other side effects but no

by Diane CW (Jun 29)

After reading about milk thistle on this forum I mentioned it to my onc but she said she would rather I didn’t try it because it would not give a true reading of my liver function, so I haven
Category: Side effects

Replies: 8

Last updated: 2 July 2019
Olivia on 2 July 2019

Category: Side effects

Replies: 0

Last updated: 2 July 2019

Gender differences in drug efficacy
by Olivia (Jul 2)

I have been reading a newspaper article, which highlights how many drugs work well for men, but less well for women (or the other way round). Does anyone know of any research into whether TKIs
Category: Side effects

Replies: 0

Last updated: 2 July 2019
Felix on 30 June 2019

Category: Side effects

Replies: 7

Last updated: 1 July 2019

Dasatinib any eye or pain problems
by David Fitz (Jul 1)

Your body your rules, as far as I’m concerned. I’ve had that discussion with my doctor a few times - she’s fab, probably at the more cautious end of the spectrum but fully respects

by Felix (Jul 1)

Hi David, on Scubas recommendation I am taking 50 mg ,my Doc and Consultant don't agree with me taking this lower dose of course they say 100 mg but I decided on lower dose cos it's my body

by David Fitz (Jul 1)

That is a good low number, heading down to MR4 soon - hopefully.
Assuming you are taking 100mg of dasastinib, perhaps you could discuss a dose reduction with your doctor. Scuba has explained many

by Felix (Jun 30)

Last one was 0.04 6 weeks ago had a test this week so hoping it's gone down a bit more .
Category: Side effects

Replies: 7

Last updated: 1 July 2019
jmonzione on 13 June 2019

Category: Side effects

Replies: 4

Last updated: 27 June 2019

Sprycel and pain/discomfort/fatigue
by Chuckster (Jun 27)

Thanks!
Chuck.

by onekayaker (Jun 25)

Awesome Chuckie!

Steff

by Chuckster (Jun 25)

Going back on meds after being off of the 50 MG daily of Sprycel since May 24th.
I got my oncologist to agree with lowering the dosage of Sprycel to 20 MG Daily!
Starting the new dosage beginning

by Chuckster (Jun 16)

Hope you can get down to at least 50 MG !
CML confirmed Feb 2018.
I lasted not even 3 weeks on the 100 mg with side effects of real bad shortness of breath, fatigue, and loss of appetite.
Reduced
Category: Side effects

Replies: 4

Last updated: 27 June 2019
Gian P on 19 June 2019

Category: Side effects

Replies: 6

Last updated: 24 June 2019

Sprycel and brown urine?
by Tbrand (Jun 24)

I’m glad it was something that can be effectively managed. Best to you.

by Gian P (Jun 23)

As it turns out i have a kidney stone 1 cm at my right side.
I will see a urologist Monday, and drinks a lot of water. In the scheme of things, that was not a bad news. Thank you all.
g

by Gian P (Jun 20)

Thank you Ian
i appreciate that you share your story, i just did a ct scan and waiting for results, the doctor found some small particle of blood and also prescribed antibiotics.will keep you guys

by ipmaki (Jun 20)

Hi Gian,
I actually had something similar about 6 months ago. I have been on Sprycel 100mg for the last 16 months or so. I had a urinalysis that came up with nothing. The color went away after a
Category: Side effects

Replies: 6

Last updated: 24 June 2019
Poppert on 21 April 2019

Category: Side effects

Replies: 3

Last updated: 11 June 2019

Imatinib effect on vision?
by EvaH (Jun 11)

hi again
Very similar story and stats to me , i did not get eye problems till 6 months after diagnosis.
It likely isnt the same as what i had but if you are experiencing floaters or a

by Poppert (Apr 22)

15 months on Imatinib (whereof last 3 on 600 mg). WBC 323 at diagnosis on the scale where 3.5-8.8 is normal. I’m 45 and I already have had bifocals for 2-3 years.
Eyesight was ok at diagnosis

by EvaH (Apr 22)

How long have you been on imatanib?
How high was your white cell count at diagnosis?
What age are you?

Generally short sightedness will not get worse as you age, but you can need bifocals.

by Poppert (Apr 21)

For some time now I have been feeling my vision has become worse. Especially after I moved up to 600 mg Imatinib. I went to my optician last week and she was quite surprised of the change. I have
Category: Side effects

Replies: 3

Last updated: 11 June 2019
Mick E on 8 May 2019

Category: Side effects

Replies: 8

Last updated: 30 May 2019

Bosutinib treatments temporarily stopped
by Mick E (May 30)

Steff thanks for the supplement recommendations, milk thistle may be a good choice if liver function is going to be troublesome!
I have restarted meds but now on 400mg and have to have liver test in

by onekayaker (May 30)

Oh yes and I take 2 of the 175mg milk thistle a day for the liver counts.

by onekayaker (May 30)

Oh yes and I take 2 of the 175mg milk thistle a day for the liver counts.

by onekayaker (May 30)

Mick,
Scuba a very active member here has great posts on supplements for joint pain. 400 mg of Magnesium taurate a day is one. I take the D3 with K2 (MK-4 plus MK-7), B12 and a
Category: Side effects

Replies: 8

Last updated: 30 May 2019
Sonia0609 on 26 April 2019

Category: Side effects

Replies: 2

Last updated: 26 April 2019

BRUISING 600 MG IMATINIB
by Tbrand (Apr 26)

I have been on 600mg Imatinib for almost 3 years and never had bruises, only from obvious reasons.

by Felix (Apr 26)

Hi Sonia ,I was on 400 mg of Imatinib for about 15 months ,I did have some small bruising just along my bra line under my bust ,but it never bothered me and my Doc never worried about it .Once

by Sonia0609 (Apr 26)

Hi everyone,

Woke up this morning and found a bruise on my stomach. I'm worried, as it reminded me of my diagnosis in 2017. Could bruising be a side effect of imatinib (I started 600 mg on
Category: Side effects

Replies: 2

Last updated: 26 April 2019
Ontasigna on 15 April 2019

Category: Side effects

Replies: 5

Last updated: 17 April 2019

Severe stomach pain
by David Fitz (Apr 17)

My other post provides more detail, but yes it will reduce your absorption of nilotinib. However, for 10 days only I would not be concerned. Long term use is the problem.
David.

by onekayaker (Apr 17)

My understanding is that it interferes with absorption of TKIs. There is a time span between taking them. Pull up the info of your drug on line or the paperwork supplied with the

by Ontasigna (Apr 16)

Hi all,
Visited GE today, he says pain may be due to bacterial imbalance.
He prescribed me to take antacid for 10 days and live -Probiotics for 10 days.
Question - would taking antacid (

by Felix (Apr 15)

Hi, if pain is in the lower right hand side of your abdomen it could be your Appendix ,please don't wait any longer if it is ,Good Luck ,Denise.
Category: Side effects

Replies: 5

Last updated: 17 April 2019
Andy on 5 April 2019

Category: Side effects

Replies: 6

Last updated: 10 April 2019

Joint and muscle discomfort
by sorin real (Apr 10)

I'm on Tasigna. Being an inveterate consumer of curcumin and being curious to know if it is appropriate to take it with Tasigna, I wrote an email at Novartis headquarters in Switzerland.

by scuba (Apr 10)

Just to be clear.
Magnesium does not need to be taken with vitamin D. Magnesium is water soluble, vitamin D is not. Vitamn D is long lived in the blood (half life = 2 months). As long as vitamin D

by bendicco (Apr 10)

Just my thoughts, Magnesium should be taken with fit D. My oncology pharmacist has done research on Curcumin and warned me NOT to take its it may interfere with the med. I had been taking it for

by scuba (Apr 8)

Magnesium and Curcumin !!
Category: Side effects

Replies: 6

Last updated: 10 April 2019
Gitel on 15 March 2019

Category: Side effects

Replies: 17

Last updated: 1 April 2019

Lymphoma and CML. Anybody know anything?
by kali (Apr 1)

Very happy for you that it is not lymphoma!! What a relief you must feel. I wish you the best!

by onekayaker (Mar 30)

SWEET !!! Great news G. Very happy for you

steff

by mozart8 (Mar 29)

very glad to hear it is not lymphoma!

by kat73 (Mar 29)

Hurray! Hurray! Hurray! I know what you mean about unicorn-ness. My bazillion year old MIL has disasters, but they all get diagnosed and - amazingly - FIXED. And she just
Category: Side effects

Replies: 17

Last updated: 1 April 2019
Mike1523 on 12 March 2019

Category: Side effects

Replies: 7

Last updated: 20 March 2019

Side effects
by EvaH (Mar 20)

Have you checked for other causes? Obviously TKIs are the prime suspect but low B vitamin levels might also cause fatigue/brain fog

by Ray Sell (Mar 16)

Hey Mike I was diagnosed Aug 2016 and started with 600mg Imatinib. Jan 2019 was lowered to 400mg. I do feel some better, but have to pick my battles. Ditto what everyone is

by Justine (Mar 14)

Hi Mike, I have had similar experience to yours. Fatigue is persistent, and absolutely does affect my ability to think clearly. Dx April 2017 -- almost 2 years! -- and on 400 mg Imatinib ever since

by kat73 (Mar 12)

The fatigue you describe is very familiar to almost all of us. For me, it was far worse on Gleevec than on Sprycel. I finally got my energy back after dropping another med I was on (
Category: Side effects

Replies: 7

Last updated: 20 March 2019
Fillette on 13 March 2019

Category: Side effects

Replies: 2

Last updated: 15 March 2019

Melanin and Tkis
by Fillette (Mar 15)

Thank you, David. For your considered response. I see there is nothing major to worry about.

by David Fitz (Mar 14)

Hello,
"Hypopigmentation" - lightening of the skin is a known side effect of imatinib. Though it does not affect everyone, a lot of CML patients will report burning in the sun easier than

by Fillette (Mar 13)

Good day everyone.
Before being diagnosed last year, I was a normal brown dark skinned woman. After, starting Glivec, people are literally telling me that I look like a mixed person. There is a Cml
Category: Side effects

Replies: 2

Last updated: 15 March 2019
Gillispie on 14 March 2019

Category: Side effects

Replies: 6

Last updated: 14 March 2019

Vomiting with Gleevec increased dose
by Poppert (Mar 14)

I was recently moved up from 400mg to 600mg too. I had one ”blip” upwards (0.18 at 9 months, 0.47 at 12 months).
They talked about some ”GUS sensitivity” which ”was

by johnw1001 (Mar 14)

I was on 600 mg Glivec for two years as I lost my molecular remission and now with a number of undetectable PCRs,have since December 2018 been back to 400mg thank goodness. I found 600 mg

by scuba (Mar 14)

Yes, if bosutinib had been available to me back in the day, I would have chosen it as my TKI of choice.

by David Fitz (Mar 14)

Though bosutinib is well renowned for rather 'explosive' GI issues for the first couple of weeks! It seems to settle pretty quickly for most people.
I don't have the data to hand, but I
Category: Side effects

Replies: 6

Last updated: 14 March 2019
Parklife on 25 October 2014

Category: Side effects

Replies: 25

Last updated: 7 March 2019

Joint and Muscle pain?
by scuba (Mar 7)

Take 400 mg magnesium citrate or magnesium taurate (avoid magnesium oxide) - split 200 at night before bed and 200 in the morning.
Good chance your muscle cramps will disappear. You'll know the

by bendicco (Mar 7)

My oncologist agreed that muscle cramps in my calves and fingers can be from the Gleevec.

by Philiptibbs (Mar 6)

I feel your pain . I was on Tasigna but could not take the rashes and itchyness all the time. I went back on Gleevec and the bone pain and joint pain has returned so bad and everytime I get hurt it

by LouiseS (May 17)

Hi Harriet
so sorry to hear about your pain. Restarting see if your doctor will agree to 50 mg instead of a 100. Def less side effects and hopefully just as effective with the CML. What helped
Category: Side effects

Replies: 25

Last updated: 7 March 2019
John J on 3 March 2019

Category: Side effects

Replies: 1

Last updated: 5 March 2019

Losarton recall
by johnw1001 (Mar 5)

I believe that just one of the many generics of Losartan has been recalled.I used to take a version of Losartan but on seeing the article by Haouala et al "Drug interactions with the tyrosine

by John J (Mar 3)

Last weeks Losarton (blood pressure) recall got me thinking. I have been taking Losarton for 2 years, I was diagnosed with CML last May, could there be a link between the two ? My Losarton is
Category: Side effects

Replies: 1

Last updated: 5 March 2019
Dshyam Prasad on 16 February 2019

Category: Side effects

Replies: 4

Last updated: 3 March 2019

please go through my report and help me in understanding it
by Dshyam Prasad (Mar 3)

thank u so much for u r response if possible go through my next post as i had side effects of dasatinib too within 3 doses

by Dshyam Prasad (Mar 3)

thank u so much for u r response if possible go through my next post as i had side effects of dasatinib too within 3 doses

by Job Guerra (Feb 17)

Unless I misunderstood something you are saying that you went from bcr/abl 0.02% to 64% and that is not good. Is it possible that the medication was already not working when your doc told you to

by RC Kirk (Feb 16)

Hello Shyam,
There are several other tyrosine kinase inhibiting (TKI) medications that may work better for you than imatinib. Ask your doctor which one he thinks would be best for you.
Category: Side effects

Replies: 4

Last updated: 3 March 2019
Sandra Djureholt on 28 February 2019

Category: Side effects

Replies: 6

Last updated: 2 March 2019

Side effects Imatinib / depression
by Sandra Djureholt (Mar 2)

Thank you! I will keep that in mind!
See, even if it's not the drugs then changing the drugs would still help due to the placebo effect. I'm guessing I must seem very strange to you :P

by David Fitz (Mar 2)

Sandra,
One last thing. When you stop taking imatinib, it takes about 5-7 days to “wash out” of your system (give or take). So if imatinib is causing you these problems, you’d hope

by Sandra Djureholt (Mar 1)

Thank you for your answer!
I understand why you would think I haven't processed this. Trust me I have and I'm fine with it. The CML diagnosis is not the cause of my depression and anxiety. I

by kat73 (Mar 1)

Sandra - Wise words from David. Certainly, there are multifactorial elements for depression and anxiety, not the least of which is unprocessed reaction to the diagnosis and its lifelong
Category: Side effects

Replies: 6

Last updated: 2 March 2019