CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

ShawnJ on 3 March 2020

Category: Side effects

Replies: 6

Last updated: 8 March 2020

Possible Heart Problems Sprycel
by jgionet (Mar 8)

Shawn,
I was diagnosed in January of 2016. I was 45. I am also an insulin dependent diabetic since I was 20. I also had high blood pressure controlled with multiple meds. I

by ShawnJ (Mar 4)

Tom,
Talked to the doctor today about dose reduction, denied again. He wants me to stick it out until I get a couple PCR results under my belt. He is still of the opinion that hitting the illness

by ThomasS (Mar 4)

Shawn, I felt terrible on 100mg. I had a hard time, but insisted and talked my Dr into dropping to 70mg then 50mg and so far for the past year everything is good with my counts... nothing has

by Aeje10327 (Mar 4)

I am on 100 mg of sprycel and at times I can feel my heart beat in random places. It has been most consistent in my lips. Super bizarre. I am not sure if what I'm experiencing is anything close to
Category: Side effects

Replies: 6

Last updated: 8 March 2020
johnw1001 on 10 May 2019

Category: Side effects

Replies: 4

Last updated: 8 March 2020

Peripheral neuropathy associated with long term imatinib therapy
by Arlene (Mar 8)

Hi,
I was diagnosed just this last September, female, 25. My levels were very bad, 52%. I took hydrourea for the first two weeks until they figured out I had CML. They then prescribed me Imatinib

by chrisbishop55 (Jan 15)

I have been diagnosed with peripheral neuropathy in my feet and legs after having one very painful ankle, swollen and tight skin. It was thought at first that I had damaged a ligament or

by Olivia (Jan 12)

I found this very interesting, although the symptoms described aren't exactly the same as mine. I have been on imatinib for over 10 years now, and my PCR results are good, so I don't

by ShawnJ (Jan 10)

John,
This is something that I am curious about because I have been experiencing symptoms that could be considered Peripheral Neuropathy but I have not been diagnosed. I am 34, I have been on
Category: Side effects

Replies: 4

Last updated: 8 March 2020
izhamredza on 2 March 2020

Category: Side effects

Replies: 4

Last updated: 5 March 2020

Nilotinib Side Effects
by izhamredza (Mar 5)

As for me, only my hair and my body hair was affected meanwhile my eyebrows stays the same. Anyway, thank you for your response.

by izhamredza (Mar 3)

Yes my PCR is below 0.1 now. I’ll talk to my doctor on reducing the dosage. Thanks for your response!

by Dustylloyd (Mar 2)

Hi Izham I’ve been on 800mg per day for nearly 5 years and the only change I’ve noticed (thankfully) appearance wise iv noticed is thinning of eyebrows, but my wife has commented my hair

by ColoradoGuy (Mar 2)

First I think that 800mg daily is very high dose for Nilotinib. I'm not sure that I have heard of somebody taking that high of a dose. I am on on 600mg and can't wait when God
Category: Side effects

Replies: 4

Last updated: 5 March 2020
Sd on 23 February 2020

Category: Side effects

Replies: 2

Last updated: 27 February 2020

Thrush
by Sd (Feb 27)

John,
Thanks so much for your help and suggestions. It turns out that I had a thrush first, which was successfully treated with the nystatin. I now have stomatitis, probably due to imatinib. I am on

by johnw1001 (Feb 27)

The usual approach is to try a course of Canisten- clotrimazole normally as a cream available off prescription I believe;if it re- occurs then it might be useful to seek medical advice as to whether

by Sd (Feb 23)

This has probably been discussed, but I am wondering about experiences some of you have had with thrush....treatment, duration of symptoms, recurrence, ways to ease the pain.
Category: Side effects

Replies: 2

Last updated: 27 February 2020
Beaners on 15 February 2020

Category: Side effects

Replies: 2

Last updated: 18 February 2020

joint pain
by Philiptibbs (Feb 18)

I'm on Sprycel and yes it causes joint pain . I take a multi vitamin, vitamin D3, potassium, Branch Chain Amino Acids, Magnesium, Calcium and Taurine for muscle cramps and my Hematologist

by snowman 35 (Feb 16)

Hi Beaners!

The first thing I can suggest you is to take curcumin and magnisium. Also check your vitamin D levels and if it is under 50 take a vitamin D3 supplament until you go around 70!

by Beaners (Feb 15)

I new to this so here a quick background.
May 2016 diagnosed with breast cancer - surgery and radiation - been cancer free 3 years Was place on Tamoxifen.
August 2019 had a total abdominal
Category: Side effects

Replies: 2

Last updated: 18 February 2020
ciprians on 20 October 2017

Category: Side effects

Replies: 6

Last updated: 18 February 2020

Nigh sweats
by Philiptibbs (Feb 18)

I feel you. I have night sweats all the time from Sprycel its a side effect. I wear tshirts to bed and a towel on my pillow. My hematologist at Karmanos is a joke. I told him of all the pain I was

by Eck (Feb 18)

I was diagnosed with CML May 2018, the night sweats and some other symptoms returned 5 weeks ago i've been in touch with my GP and the haematology department, the latter told me to see my GP my

by ciprians (Mar 27)

Hello SorubhMaggo,

How did the sweats come up? Is everything all right with you now? Since the previous post, I've experienced sweats like this but always they went away.

by SorubhMaggo (Nov 19)

It was last year December 2017 when I was diagnosed with CML with quite similar symptoms as Ciprians. Along with 2 months of history of night sweat which gradually increased, I went for a
Category: Side effects

Replies: 6

Last updated: 18 February 2020
thomas.c on 17 February 2020

Category: Side effects

Replies: 2

Last updated: 17 February 2020

strange temeperature
by hannibellemo (Feb 17)

Thomas, I also experienced the hot face syndrome (my term) with Sprycel but it went away after several months. I also experienced the same sensation in my upper arms and thighs. My tolerance to heat

by labros (Feb 17)

Hello Thomas,
I found your post really interesting, since I am on 100mg of dasatinib, since been diagnosed last June and from the 1st month I am experiencing strange temperature on my ears as well.

by thomas.c (Feb 17)

Hi Everyone!
I'm experiencing some strange symptoms, and i was hoping some of you may have an idea what might be going on. I was diagnosed about 2.5 years ago with CML, been taking 100mg
Category: Side effects

Replies: 2

Last updated: 17 February 2020
Justina on 8 February 2020

Category: Side effects

Replies: 4

Last updated: 10 February 2020

Side effects
by sandy craine (Feb 10)

Hi,
First, congratulations on such a low PCR result. From what I have read, imatinib induced amenorrhea (absence of menstruation) may be a side effect of therapy, but is certainly not a common one,

by kat73 (Feb 10)

How old are y'all? It's very common to have these changes in the decade before menopause. They even have a name for it: perimenopause. The 40's are not kind to women.

by Tater1 (Feb 8)

Hi
I am on 50 mg dasatinib and have seen huge changes in my period, but in my case more frequent and heavier as a result of the medication. From what I’ve read, it’s not

by VickyK. (Feb 8)

Hi Justina,

I had many abnormalities in my period cycle six months after being on TKI treatment, the only difference is that I am on nilotinib.Things now are much better but not perfect as
Category: Side effects

Replies: 4

Last updated: 10 February 2020
saifur360 on 2 February 2020

Category: Side effects

Replies: 2

Last updated: 9 February 2020

Eyes fold, burning
by johnw1001 (Feb 9)

Imatinib can cause sensitivity around the eyelids and a swelling of the tissues in that area-a condition called blepharitis.I use Blephasol which is basically a saline solution and wipe the eyelids

by David Fitz (Feb 2)

Imatinib can cause dry eyes. I don’t take imatinib, but have had dry eyes in the past and found carmellose sodium drops very effective for lubrication.
David.

by saifur360 (Feb 2)

I am on imatinib (Veenat 400 mg) 4 years.
Now my RQ-PCR is 0.015
ESR 84
Hemoglobin 11.2
Last 1 year my both eyes are burning, drop Water, and when I looking angle my eyes white
Category: Side effects

Replies: 2

Last updated: 9 February 2020
nicolaclubb on 3 February 2020

Category: Side effects

Replies: 1

Last updated: 4 February 2020

Enlarged Liver
by sandy craine (Feb 4)

Hi,
I have done a quick search and understand that average liver sizes are as follows:
6.4 cm for 1 to 3 months
7.6 cm for 4 to 9 months
8.5 cm for 1 to 5 years
10.5 cm for 5 to

by nicolaclubb (Feb 3)

Hi.
Was wondering if anyone has experienced Liver enlargement since starting medication. Just had scan my liver is over double it’s normal size. It’s 17.5cm and should be 7.5
Category: Side effects

Replies: 1

Last updated: 4 February 2020
Sd on 16 January 2020

Category: Side effects

Replies: 0

Last updated: 16 January 2020

mouth issues
by Sd (Jan 16)

Besides dry mouth, is anyone trying to manage issues with the oral mucosa? Not sores or ulcers, but rough feelings in the sides of the cheeks (as when tasting something bitter). Also some tenderness
Category: Side effects

Replies: 0

Last updated: 16 January 2020
Karin on 12 January 2020

Category: Side effects

Replies: 2

Last updated: 13 January 2020

Coughing
by Nimbus2 (Jan 13)

Are you taking any other medicines that could cause a cough? I only mention this because I had the same issue and Ramipril proved to be the cause.

by David Fitz (Jan 12)

Have you tried using a humidifier in your bedroom? My children often have a cough, and it really helps them.
You need one suitable for the size of your bedroom. Tiny ones won’t really

by Karin (Jan 12)

I was diagnosed with CML one year ago. (69 yr old female) Have been taking 400mg of imatinib mesylate daily. Side effects have not been too bad and some are easing up. I have developed a chronic
Category: Side effects

Replies: 2

Last updated: 13 January 2020
labros on 11 January 2020

Category: Side effects

Replies: 3

Last updated: 12 January 2020

Transient drop of platelets due to Dasatinib
by Brett0503 (Jan 12)

I has posted the same in the other thread. Not taking the pill before the blood draw made the difference.
https://cmlsupport.org.uk/post/58732

by labros (Jan 12)

Hello Rosiem,
How low are your PLTs in general? What made me try this "experiment" was the fact that some days the PLTs were low (below 75, BUT still above 50) and some others normal (

by Rosiem (Jan 12)

I'm really excited about your post. I am currently on 70 mg Dasatinib and suffer from Myelosuppression and low platelets side effect.
I have an appointment with my consultant this Tuesday

by labros (Jan 11)

I would like to draw your attention to an "unreported" side effect of dasatinib that might affect someone's treatment plan and lead to discontinuation of Dasatinib due to
Category: Side effects

Replies: 3

Last updated: 12 January 2020
janita on 26 December 2019

Category: Side effects

Replies: 11

Last updated: 31 December 2019

Nilotinib
by kat73 (Dec 31)

Janita - Something I wish someone had said to me all those years ago when I was suffering like you: "You don't have to feel this bad!" But, strangely, not a single doctor (onc,

by janita (Dec 30)

Hey
all I know at the moment is the side effects are ruling my life!!!! I can’t plan things with my family as I never know how I’m going to feel from one day to the next. Is it normal to

by kat73 (Dec 29)

It's good that you are giving some time to getting used to the med, but keep in mind that, IF things don't get better, bad side effects are a legitimate reason to try a different TKI.

by janita (Dec 27)

Hey Alex
i guess it’s hard to think as well I’ve only been on these meds for 4 weeks ( seems like a lifetime) and need to give my body time to adjust. I’m such a family person and
Category: Side effects

Replies: 11

Last updated: 31 December 2019
Sd on 28 December 2019

Category: Side effects

Replies: 2

Last updated: 28 December 2019

Rash from imatinib
by Felix (Dec 28)

Hi, I used a simple vitamin E cream ,it eventually took the itchiness and redness out ,the little bumps remained but didn't bother me anymore .The whole lot disappeared within days when I

by Aeje10327 (Dec 28)

I think it depends. There seem to be some that do and some that don't. Mine didn't and I was recently switched to Sprycel.

by Sd (Dec 28)

How are people handling the rash from imatinib? Does it ever resolve?
Category: Side effects

Replies: 2

Last updated: 28 December 2019
StewartOC on 9 August 2019

Category: Side effects

Replies: 7

Last updated: 27 December 2019

Bosulif / Bosutinib - Mobility Issues
by alexmcpee (Dec 27)

Hi Stewart!
We met at Kings college for the CML presentation back in the summer and got the tube together if you recall. I am glad that Bosutinib seems to be reducing your BCR, but sorry to hear

by StewartOC (Dec 27)

Hi all,
Just a wee update. My legs and fatigue remain pronounced but otherwise things seem ok. It's pretty frustrating only being able to do one thing a day and falling asleep in the late

by onekayaker (Dec 16)

Hello Stewart,

I was eased into 300mg bosilif after failing on sprycel 50mg. My issue was balance. I was unable to paddle board after starting Bos. and when walking down

by Diane CW (Dec 15)

Hi Stewart
I was diagnosed two years ago and started off on Nilotinib but had to come off because it reduced my platelet count too much. So I have been on Bosutinib for just over a year now, started
Category: Side effects

Replies: 7

Last updated: 27 December 2019
mamodei on 20 December 2019

Category: Side effects

Replies: 2

Last updated: 21 December 2019

Chest pain - Sprycel/dasatinib
by mamodei (Dec 21)

Thank you so much for taking the time to put together this list of links. I'll sit down tonight and go through all of them thoroughly as a quick reading shows there is even more

by RC Kirk (Dec 21)

Hi Maria,
I've experienced chest discomfort and weird heartbeats since starting dasatinib. I manage it by going back to imatinib for a while until it feels better. I've had some

by mamodei (Dec 20)

Has anyone had experience with chest pain/pulmonary issues with dasatinib? If so, how was it resolved? What did it feel like? If it was a matter of going off the Sprycel how long
Category: Side effects

Replies: 2

Last updated: 21 December 2019
ShawnJ on 22 November 2019

Category: Side effects

Replies: 4

Last updated: 6 December 2019

New Here Short Break from Gleevec
by doulakatiecasey (Dec 6)

It's interesting that you mentioned frequent kidney stones. Before he was diagnosed, my husband has had very frequent kidney stones for a few years and I kept telling him it wasn't normal at

by ShawnJ (Nov 23)

Thank you for the replies. I think some of my throat stuff is anxiety. I have been having a real tough time keeping a level head. I see a therapist soon, hoping it helps.

by mamodei (Nov 22)

I was given a 7 day break from nilotinib about the same amount of time into treatment you are. Like you my blood count numbers had come quickly back to normal ranges but I did not have a PCR

by Aeje10327 (Nov 22)

Hi, I understand your concerns being this early in treatment. I am just a few weeks ahead of you. I had to stop for a week because of neutropenia. My doctor assured me that its common practice early
Category: Side effects

Replies: 4

Last updated: 6 December 2019
Sd on 5 December 2019

Category: Side effects

Replies: 4

Last updated: 6 December 2019

Rash and imatinib
by ThomasS (Dec 6)

I developed a big brown spot on my forehead never did clear up. The Dermatologist said it was just because I was getting a little older. Once I switched to Spycel it went completely away. Of course

by Sd (Dec 6)

Is this pretty common? I am wondering how many others develop this rash? If you have had it, does it resolve eventually? Or did you change meds or dosages?

by Sd (Dec 5)

Thanks David. I do use a moisturizer, but it is a bit more than just dry skin. I don't have it on my face.

by David Fitz (Dec 5)

I’m sure you know this already, but don’t use that cream on your face.
I have used things like diprobase in the past, which is very good for keeping your skin moisturised if it
Category: Side effects

Replies: 4

Last updated: 6 December 2019
ThePilotLawyer on 22 October 2019

Category: Side effects

Replies: 1

Last updated: 5 December 2019

Bosulif Itching
by Catherine McC (Dec 5)

Hi Anthony,
Yes I've got very itchy shins! Do you have an actual rash? If you do, you could try using eczema creams which help a bit. My haematologist also gave me an anti-histamine though I don

by ThePilotLawyer (Oct 22)

Has anyone experienced itching on Bosulif and if so, what did you find to help soothe?
Thanks - Anthony
Category: Side effects

Replies: 1

Last updated: 5 December 2019