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Breast pain?


I am recently 39 (not in menopause) and have been two years on Sprycel 100mg.  My BCR ABL is .32 😔 and my doctor is thinking of increasing my dose to 140 mg.  😭

I have been having burning breasts on and off for a few weeks.  One breast hurts consistently more than the other.  My second covid shots was over three months ago; my doctor originally suspected it was COVID jab related.  I also have an ovarian cyst which is big enough that the doctor is considering surgery.  My doctor says that the cyst should also not affect my breasts.

Honestly, I am starting to get get so down about everything.  I know CML does not technically make us more cancer prone, but I have become so skeptical about anything medical.  CML was a total shock.  Then the fact that I do not respond to TKIs like most other people has me doubting my body’s ability to do anything anymore. 

Does anyone have constant sore breasts to put my mind at ease?  I wish I felt confident in my health, but I feel like I am always battling or worrying about something.  I am so tired.  😔

Hi Heidi,

A few weeks back my wife was having the same issue as described by you. She was detected with CML in Dec 2020 and is on Dasatinib 100 mg. In her case too one was hurting (burning sensation) more than the other. She took Vitamin E for a couple of weeks and it seemed to have helped her. 

We are 35 and just before planning for a family we got this shocker of CML. And now every other day there is a different side effect to get bothered with.  Puffiness in the face is constant, greying of hair, fatigue, some mornings eyes can barely open

This forum helps you get answers and get some relief (atleast it does to me). There are some good posts from Scuba, Alex and many others which help you with some additional supplements which you can take. (Vit D, K2 I remember )

There are new drugs coming into the market so you dont have to worry. 

Wish you a lightspeed recovery :)


Thank you SO much!  I will have to try that!  I am so appreciative of your reply.  Thank you!!!  

Hi Heidi,

I don't have the same side effects, but you're not alone in your response, mine is not altogether great either. I'm on 100mg Sprycel and after 18 months I'm only .38

I'm trying not to let it get me down and hope that over time my BCR-ABL level will drift lower, although the magnitude of the drops decreases and the length of time to drop increases...

I'm no Dr, but everything I've read on these forums doesn't suggest increasing Sprycel dose is a good idea. In fact people have written that at relatively low CML levels like ours we should even think about decreasing dosage.

The ELN 2020 guidelines don't necessitate changes unless you're over 1%, and are conservative about changing treatment unless MMR is reached within 36-48 months. See:


Have you had your D3 level tested and if so do you know your level? I have just read an article on non-specific pain and thought it might be helpful for you to take a look to see if it might be a way of countering this effect. Pain can be so debilitating, both physically and emotionally.

Personally, I feel best (after some experimentation) when I keep my D3 levels at the higher end.


Hi Heidi,sorry you are having pain.No way would I agree to a dose increase when you feel like this .Your Doc probably isn't a CML specialist .Probably a dose reduction to 50 mg would actually make you feel better and even maybe decrease your BCR - ABL.This is your body don't be afraid to suggest this you don't have to just do as they say .You can always go back up to 100 mg if it doesn't work but I think it might .Good Luck ,Denise.

Thanks Phil,

I guess I can give myself one more year to see if it makes a difference. 🤷🏼‍♀️ I am not very confident right now that it will, but I do not want to change my TKI if I can help it.  I am also worried that an increase might cause me to lose my ability to use Sprycel due to side effects.  My doctor keeps reassuring me that I am fine.  I just want to step away from this CML cliff and stop feeling like a porcelain doll but I also not ready to take any unnecessary risks either.

Thanks for responding,


Dear Sandy,

I did check my Vitamin D level and it is in normal range.  I do take a multivitamin D3K2.



Dear Denise,

I have seen studies as well that argue for reduced dose.  I doubt that those studies had any slow responders though.  For most people it is probably true.  I wish there were more studies done on suboptimal responders.



Hi Heidi,

Just out of interest, what's your BCR-ABL trend been like? Has it been around this level for a long time? 

Mine's been going down overall, just excruciatingly slowly...


Heidi, as Phil mentioned, there is absolutely no reason for your onc to increase your Sprycel dosage to 140mg.   Any reading below 1.0% means there is no danger to your health from the CML; by far the greater danger comes from the TKI itself and an increased dosage would undoubtedly only make things much, much, worse.  Rather, from the side-effects you are currently experiencing, strong consideration should be given to reducing your dosage, first to 70mg and then quickly to 50mg and then continuing lower.  Please post your BCR-ABL testing history to allow a better understanding of your situation.  I'm betting that your BCR-ABL will continue to drift lower over time, regardless of dosage.   

Thanks in advance,

Buzz Thanks for the response.

7/21   .32%

4/21   .09%

1/21.   .12%

11/20  I don’t remember the other ones… but they were mostly between .5 and MMR…. My small MMR victory was so short.

Heidi, MMR is not nearly as important as reaching CCyR (1.0).   Talk to your onc about lowering your Sprycel dosage to 70mg.  It is unlikely to have an adverse effect on your BCR-ABL readings; they may continue to bounce around while drifting lower, regardless of dosage.  Be your own best advocate.  


PS: one of the biggest mistakes that oncs make is prescribing an increased super high TKI dosage in an attempt to push through that last very low level of CML, which is not presenting any real danger to the CML patient, to reach undetectable.  It typically only results in making the CML patient much worse off from the increased side-effects.

Hi Heidi,you sound like you are on a real downer ,upset and depressed please don't be .try to have a more positive mind set .You say you take a multivitamin that's no good ,there's not enough of anything in those . A lot of us take a whole cocktail of vitamins to help .Do you only take d3 and k2 ?.I take turmeric with black pepper ,fish oil .selenium,zinc, magnesium,Vit c,B12 , have a look at previous posts of others on what they take and why.Google the benefits of these for us CMLERS .Get back to your doctor for a dose reduction and keep your chin up .Very best of luck ,Denise.

Ovarian cysts come and go , i had em before cml and i have em now.

I also had beign lump on my brest removed, before cml. All of this happened between 35-40 for me. Its kinda just the age for it.

Cml puts us in more regular medical check up so more will be found than might have been normally.

Sorry about the burning boobs though , that's not fun!

Heidi, when your onc allows you to begin reducing your dosage, let us know what your new BCR-ABL readings are: 

2021 (01) 0.12; (04) 0.09; (07) 0.32
2019 find your prior readings in the interim

they will be added to your case history demonstrating successful gradual dosage reduction 

You are your own best advocate.  Have your onc (who is thinking of increasing your Sprycel dosage to 140mg) to admit that beyond CCyR (1.0) there isn't any real danger to the CML patient from the disease.  When CML patients are plateaued, or rangebound, at low CML levels (below 1.0), for a prolonged period of time, they can gradually reduce their dosage. without it having an adverse effect on their CML level.  


PS: you will feel increasingly better as you lower your dosage.  


'Normal' range depends on who is saying it - ie. from which reference. Do you have the actual figure or did your doctor tell you?