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Nshah on 3 December 2019

Category: Side effects

Replies: 2

Last updated: 3 December 2019

Bcr abl result after 6 months
by Nshah (Dec 3)

Thank you 😊
May we all get a good MMR soon.
Yes I am taking imatinib and i hope hair loss will settle soon.

by alexmcpee (Dec 3)

Hi there,
haha yes that’s a very very good result after 6 months (the guideline are less than 1.0% at 6 months) I am at 0.118% after 19 months. I was late late late chronic phase and thus had

by Nshah (Dec 3)

Hi everyone
well I got my first bcr abl result after 5 and a half months and it is 0.15%, so I wanted to know is it normal, good or very good , depending on your personal experiences. I had 42
Category: Side effects

Replies: 2

Last updated: 3 December 2019
mamodei on 24 November 2019

Category: Side effects

Replies: 13

Last updated: 2 December 2019

Has anyone else had speech difficulty on dasatinib (or nilotinib)
by mamodei (Dec 2)

I did have my first appointment with the speech therapist on Friday, an evaluation with lots of tests. There were two possible outcomes, the first being my speech problems have a neurological

by kat73 (Dec 2)

Just back and catching up here. Yes, yes, yes to the problems described above, and yes to the timing of it being after diagnosis and starting imatinib and then (especially) dasatinib.

by mamodei (Nov 26)

Well that is not reassuring as far as my finding a way to improve my speech while still on the TKI.
Dasatinib does cross the blood brain barrier. https://www.ncbi.nlm.nih.gov/pubmed

by Nimbus2 (Nov 26)

A patient meeting was held in Birmingham England on 9 November where Dr Manjov Raghaven presented and discussed the subject of TKI side effects. The majority of the patients present at that meeting
Category: Side effects

Replies: 13

Last updated: 2 December 2019
domonthebay on 11 November 2019

Category: Side effects

Replies: 3

Last updated: 15 November 2019

Update on side effects from Sprycel
by Mick E (Nov 15)

Thanks for the reply!
the current 600mg daily has today broken me. Struggled to even slow jog short distance and breathlessness walking, this cannot be normal! The only

by domonthebay (Nov 15)

My doctor (head of the Leukemia dept. at Hopkins) seems to think I respond well to these TKIs (despite the side effects) and he favors the lower doses to reduce the long term cardiac and other more

by Mick E (Nov 11)

Do you know why they decided to start the dosage at 150mg twice daily? I’m currently on 300mg twice daily and from what I have read that 600mg daily appears to be a lower dose than

by domonthebay (Nov 11)

First, thanks for all the feedback from everyone. Side effects are: shortness of breath, heart palpitations (minor) itching (major) and chest pains (worse at first then fading to almost never
Category: Side effects

Replies: 3

Last updated: 15 November 2019
koralia.pappi on 3 November 2019

Category: Side effects

Replies: 6

Last updated: 14 November 2019

Nilotinib and heart palpitations
by David Fitz (Nov 14)

I've had this from time to time as well. Recently, the 3-point ECG on my smart watch was indicating unusual results and I wasn't feeling 100% at the time. Like you, it cleared up on its own

by koralia.pappi (Nov 14)

Hi Alex, cmljax,
Thank you both for your answers. A week later, all I can say is that, whatever it was, it was cyclic, and went away after a week.
It could be stress, or it could be some minor

by cmljax (Nov 9)

Could be all caused by stress/anxiety, but I am pretty sure that my recurrence was not. I think for me the palpitations are caused by the TKI and perhaps exacerbated stress.

by alexmcpee (Nov 8)

Hi Koralia,
I have been on Nilotinib for 19 months after 3 months on treatment and I had palpitations that lasted for around another 3 months. The diagnosis affected me really hard mentally and
Category: Side effects

Replies: 6

Last updated: 14 November 2019
S Davis on 27 October 2019

Category: Side effects

Replies: 7

Last updated: 11 November 2019

Looking for treatment options for bumpy red rash from Dasatimib
by domonthebay (Nov 11)

one temporary relief I recently found to itching skin/rash from Dasatinib is Dr. Bronner Pure Castile Peppermint Soap - I am not sure if you can get it everywhere but likely on the web... (see

by S Davis (Nov 10)

The dose of Dasatinib I am on is 80 mg. The bumpy rash is persisting, but not worsening and is otherwise not symptomatic. Keeping skin well moisturized seems to help. Remarkably,

by Rosiem (Nov 9)

Since my dose of Dasatinib was increased to 70 mg, I have an itchy, scaly rash in both eyes and around the left eye. I moisturise the ears with tea tree cream twice a day and that seems to control

by S Davis (Nov 6)

Thank you for sharing your experience. After two weeks, the widespread bumpy, red rash seems to be dissipating a bit. It is not itchy or burning. I too think just keeping my skin
Category: Side effects

Replies: 7

Last updated: 11 November 2019
chrissie on 27 February 2018

Category: Side effects

Replies: 14

Last updated: 9 November 2019

Higher creatine level (kidneys)
by chrissie (Nov 9)

Hi Richard
Thank you for your thought. No problem with kidneys now - and I can't remember what the outcome was back in 2018- so I guess all was OK
Funnily enough I had my latest results back

by Richd478 (Nov 9)

Hi,
I wanted to follow up with you to see if your doctor ever found out the cause of the elevation. Currently I’ve been on Gleevec for 8 years with no issues and full MMR remission. However,

by chrissie (Mar 3)

Thanks for your reply Isla .I printed off the article for my GP .David also gave me the link. Thanks also for your reassurance,
Hope you are doing well
Best
Chrissie

by Isla D (Mar 2)

Hi Chrissie
My creatinine levels have increased and my eGFR levels have decreased since starting dasatinib so I've done a fair bit of panicking and research on TKIs and kidney health myself.
In 2016
Category: Side effects

Replies: 14

Last updated: 9 November 2019
domonthebay on 22 October 2019

Category: Side effects

Replies: 4

Last updated: 23 October 2019

Dasatinib Side Effects and any suggested remedies or counter agents?!?
by David Fitz (Oct 23)

Muscle pains ... magnesium cream or oil can help if it’s a crappy sort of pain. Personally, I find a long hot bath very helpful and often combine that with magnesium flakes. You can get a kilo

by domonthebay (Oct 23)

Thank you David for your response... I plan to speak with my doctor on both suggestions. Any ideas about what you or others have done for the muscle/chest pains or the itching? I keep

by David Fitz (Oct 22)

Breathlessness on dasatinib warrants a couple of checks ... firstly, you want to rule out pleural effusion, so that would be a quick chest x-ray to rule that out. Secondly, PAH (pulmonary arterial

by Mick E (Oct 22)

I was having unexplained breathlessness even on 25mg. I have since been taken off them but the problem although not as bad is still present. Currently investigating for the possibility
Category: Side effects

Replies: 4

Last updated: 23 October 2019
johnw1001 on 21 October 2019

Category: Side effects

Replies: 2

Last updated: 22 October 2019

Stopping /discontinuation-side effects
by Vikram (Oct 22)

Alastair c
Last pcr.......
TFR.... One year complete????
Any problem..... In TFR (last one year)???
Imatinib side effects discreases....... In TFR........
Your experience....... Please share last

by AlastairC (Oct 21)

Hi John,
After over 11 years on 400mg imatinib, I followed the Destiny protocol (I think your Lancet paper was probably on this) and cut to 200mg two years ago. 12 months ago tomorrow I took my last

by johnw1001 (Oct 21)

Hi All,
After being on Glivec/imatinib for nearly 14 years we are going to stop for up to 3 months in a few days as in early November we are scheduled for the implantation of iodine-125 seeds into
Category: Side effects

Replies: 2

Last updated: 22 October 2019
mamodei on 9 September 2019

Category: Side effects

Replies: 12

Last updated: 18 October 2019

Neurological side effects with nilotinib or dasatinib
by kat73 (Oct 18)

Terrific! That's a wonderful result. I use to bargain with the gods in the early days: Either let me feel better or give me a good number so I can carry on through feeling bad

by mamodei (Oct 18)

It took a week for my lightheadedness to dissipate. I can drive to work again! I'm still having some other problems but hoping they will continue to minimize based on the experience

by mamodei (Oct 7)

My dose has been reduced to 50. Hoping this will turn things around for me.

by mamodei (Oct 2)

I have Lymes disease, which certainly muddies the water about what symptoms are what. This is not my first time with Lymes and usually the doxycycline gets the symptoms under control in just a
Category: Side effects

Replies: 12

Last updated: 18 October 2019
Tedro on 22 September 2019

Category: Side effects

Replies: 3

Last updated: 23 September 2019

Skin and Dasatinib?
by Tedro (Sep 23)

Thank you!
I pretty much just do what they say, PCR?
I know this: my resukts went from 100 to 10 to 1 or something, pretty much cured. my cll keeps my wbc up, not much maybe 20,000.
I will ask.

by kat73 (Sep 23)

I had something similar to that, only it didn't itch and never affected my scalp. Still, it was bumpy and mysterious. It came and went (several months of it) a couple of times (so, a

by Snowman35 (Sep 23)

I have a friend that had exactly the same problem at the start of her therapy(she take tasigna) after a few months all the skin oumos where gone. I think when you will get used to the drug all thw

by Tedro (Sep 22)

I've been taking 100mg Sprycel qd.
CML is pretty much gone. I also have CLL, which is not being treated and perhaps never will.
I have itch bumps on my back, upper arm(s), abdomen, neck... head
Category: Side effects

Replies: 3

Last updated: 23 September 2019
shayner on 13 September 2019

Category: Side effects

Replies: 16

Last updated: 15 September 2019

Fatigue increase
by shayner (Sep 15)

Hi ffiorellino, I’m ready to try anything! I’ll give ginger a try, I know it’s great for digestion but if it helps the exhaustion too that would be great. I do exercise but gently

by shayner (Sep 15)

Thanks for coming back to me on that William, think we are all tempted by the thought of coming completely off the medication, but having CML makes us all realise how precious every day we have is

by ffiorellino (Sep 15)

Hi shayner, I've similar effects (I'm on generic Imatinib 400 mg/d and had dx 2yrs 6 mnts ago). I try not to give up in doing some excercise. Also, something that looks to help me is

by William1567 (Sep 15)

Shayner, I didn't take breaks for trials. It was just a personal choice. I needed relief from the fatigue and other side effects. My onc always says that a two week break every couple of years
Category: Side effects

Replies: 16

Last updated: 15 September 2019
saifur360 on 3 September 2019

Category: Side effects

Replies: 0

Last updated: 3 September 2019

Head pain (Back side)
by saifur360 (Sep 3)

I have continue imatinib 400 mg last 2 years 9 months. I also do tension for my financial crisis. I also trying to get a official job.But last one month sometimes I feel a little head pain of back
Category: Side effects

Replies: 0

Last updated: 3 September 2019
ColoradoGuy on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 29 August 2019

Dull Pain In Left Buttocks
by johnw1001 (Aug 29)

Hi there,
Thanks for the update .I think that I know have a better picture of the issues involved if one does not reduce to MMR or when one loses MMR.Some years ago I lost my MMR and the PCR s rose

by ColoradoGuy (Aug 21)

John - Thank you very much for the reply as I sometimes post and never know when I will get info back (it's like fishing, lol).
I have been treated for almost exactly 2 years (two

by johnw1001 (Aug 21)

Hi there,
I am responding because I have had similar issues and it might be interesting to relate these to you.You do not say how long you have been treated for CML nor the PCR scores etc .I do not

by ColoradoGuy (Aug 16)

Just wanted to get everyone's thoughts as I have been feeling a dull pain in my left butt cheek and was wondering if It could be a result of changing to Nilotinib. I had an ultrasound in
Category: Side effects

Replies: 3

Last updated: 29 August 2019
Bmckenna on 22 September 2018

Category: Side effects

Replies: 7

Last updated: 21 August 2019

Has anyone had to stop working due to tki side effects?
by michaelnall1009 (Aug 21)

My sister was diagnosed with CML back in 2010 when she was 46 and was immediately put on Tasigna and had a quick move to remission. However, as you all discuss she did have side effects from

by jab (Oct 8)

I was told potassium and for the most part the leg cramps went away.

by cmljax (Sep 24)

Sorry your TKI is causing so much pain. Side effects often get better with time, but if not, you should discuss switching TKI or if your PCR response is good, reducing dose.

by Philiptibbs (Sep 23)

I have all the same side effects and I'm sorry to say but the only way I cope is Percocet 3-4 times a day and I try and sleep 8-9 hours a night to heal. I do construction and have to work because I'
Category: Side effects

Replies: 7

Last updated: 21 August 2019
Sunita Parhar on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 16 August 2019

Ponatinib
by AlastairC (Aug 16)

Sunita you're welcome. Bone Marrow Biopsy is he right thing to do and take decisions when you have the results. Let us know what happens.
Good luck
Alastair

by Sunita Parhar (Aug 16)

Hi Alastair, you’re absolutely right - I got the name of the drug wrong. We are doing a bone marrow biopsy next week to determine mutations. Thank you for the suggestion.

by AlastairC (Aug 16)

Hi Sunita, can you check the name of the drug - I think it may be ponatinib, which is one the recognised newer drugs for CML patients. Also has your husband had any mutation testing done - this

by Sunita Parhar (Aug 16)

Hi, my husband has been on Nilotinib for almost 2 years now but seems to be developing a resistance to it. The doctor has mentioned a drug called Pinotinib as an option. Has anyone been on it? Were
Category: Side effects

Replies: 3

Last updated: 16 August 2019
BrianUK on 21 July 2017

Category: Side effects

Replies: 3

Last updated: 1 August 2019

Nausea
by EURO (Aug 1)

Hi EVA,
Thank you for your tip , it works perfectly . I use 2-3 squares of dark chocolate every morning after imanitib 400 mg and no more 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: 3

Last updated: 1 August 2019
Beanosbeetle on 29 July 2019

Category: Side effects

Replies: 9

Last updated: 31 July 2019

Side effects imatinib
by Beanosbeetle (Jul 31)

Cheers Kenny my specialist nurse got in touch today I have been taking ibuprofen and magnesium tablets but she has told me to just take paracetamol or cocodomol but I have an appointment this Monday

by Kenny (Jul 31)

I'm in Scotland too, I was diagnosed in 2003 and was put on imatinib and went through the same side effects and others, I remember walking and finding it hard, but it did clear eventually, so

by Beanosbeetle (Jul 30)

Thanks Alastair its hard from being the big strong man of the house with a heavy manual job on the railway to being a broken man in so much pain since being on the tablets but hopefully they can

by AlastairC (Jul 30)

Hi, I think I've replied to your wife on this subject on a different thread. I have sent her the link to the talk on side effects from last year's patient day. In that talk Sebastian Francis
Category: Side effects

Replies: 9

Last updated: 31 July 2019
jess81 on 29 July 2019

Category: Side effects

Replies: 3

Last updated: 30 July 2019

Newly diagnosed
by alexmcpee (Jul 30)

Hi Jess,
Sorry to hear of the diagnosis it’s a scary time for all. But it’s not as scary as it all seems. I was diagnosed with a massive spleen and a wbc of 330!
15 months later I am

by jess81 (Jul 30)

Thank you so kindly for the informative response. I’m very appreciative. This is all new to my father and myself so I’m trying my best to be as informed as possible. As he gets more test

by AlastairC (Jul 29)

Hi Jess. The normal range for WBC is between 4 and 11, which makes 53,000 sound pretty scary. However, there are people on this forum who were diagnosed with WBC into the hundreds of thousands, and

by jess81 (Jul 29)

Hi there. My father has recently received some blood results and doctors are pushing towards a CML diagnosis. He is 61. His CBC came back with an elevated wbc 53,000 and spleen slightly enlarged.
Category: Side effects

Replies: 3

Last updated: 30 July 2019
Chuckster on 14 July 2019

Category: Side effects

Replies: 4

Last updated: 16 July 2019

Thoracentesis: What to expect.
by Chuckster (Jul 16)

Thanks and all the best to you also!

by Mick E (Jul 16)

Thanks for the reply Chuck
i started 100mg a couple of weeks ago and experiencing exactly the same problems. Had chest x Ray today to check for fluid. Pleased to hear you are doing well

by Chuckster (Jul 16)

Hi,
My dosage has been lowered from 100mg to 80 mg to 50mg and just recently to 20mg.
This is all over a span of approx 1 and a half years.
CML was confirmed on FEB 12, 2018 till present.

by Mick E (Jul 16)

Hello Chuck
cannot offer any advice on the procedure to drain your chest but I’m interested to know why you were dropped to 20mg dosage of sprycell?
i recently started taking 100mg but that
Category: Side effects

Replies: 4

Last updated: 16 July 2019
DJ on 14 June 2019

Category: Side effects

Replies: 14

Last updated: 12 July 2019

Is Sprycel bad for side effects?
by DJ (Jul 12)

THank you for all your replies.
She is having heart palpitations when she is out of breath. She has to sit down. Did you guys have that? Also, it seems random - the shortness of breath/

by alison (Jun 25)

My husband had to go off Sprycel because of shortness of breath. He never developed pleural effusion. He is 75 ad in great shape. He was on 70 mg and then 50 mg. I have followed

by DJ (Jun 25)

Thanks Chuck
He put her on the sprycel 20mg because her side effects were so bad with the others. He was hoping she could tolerate that.
It's been two weeks and we've not seen him yet with a

by Chuckster (Jun 25)

Real sorry to hear your mom is getting very sick on the 20MG of Sprycel.
What does her oncologist say about the meds and the real bad side effects etc?
All the best to your mom!
Category: Side effects

Replies: 14

Last updated: 12 July 2019