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Adjusting (?) to TKI Side Effects


Hello, I am new to this group. Thank you for including me. I was diagnosed three weeks ago in Boston. Have been trying to adjust to Bosutinib for 13 days. It has been a harrowing experience, as each side effect pops up and stays….or should I say lingers. 

I have a great clinical team and can communicate with them easily. I’ve also read every article on Bosutinib that I can find online.

*But I’m trying to find out from others how long it really took them to adjust to Bosutinib or another TKI?  A few weeks? A month, six months, never? By “adjust”, I mean: lead a relatively normal life without constant diarrhea, vomit, or a widespread rash that itches all the time.

Any real-life data, thoughts, wisdom, greatly appreciated.

Thank you all. 


Hello Anne

Welcome to the Forum. Firstly you are far from alone and you will find many posts here that will help you with most of the side effects, symptoms and prognosis of CML.

Personally I was diagnosed exactly one year ago. I fully sympathise with what you are going through. I am on Imatinib, and of course everyone goes through different side effects, although most people seem to suffer from similar effects to a greater or lesser degree.

Certainly for me the first three months were the worst, although my side effects were generally short lived and not too hard to bear. I  started with the itchy rashes, they lasted several weeks. Then the “bone aches” and pains, mostly at night. These lasted for around 6 weeks. Initially I was very tired, and unable to do much - this has improved hugely as time has gone on.

After a year the only side effect that really causes me issues is cramp, mostly at night or when exercising. However, this forum told me about the interesting beneficial effects of tonic water, which helps a lot.

I have had very good results with my treatment and live an almost normal life 12 months after diagnosis.

I would say do not hesitate to ask your medical team for advice on ways to mitigate your side effects. But be positive. You are at the very beginning of a long journey, as my specialist told me “it’s a marathon, not a sprint”, things will improve in time for the vast majority of sufferers.

Best wishes


Thank you David. I very much appreciate your response. So helpful to have specific information. (And I’m fascinated to know more about the tonic water!)
Thank you.


You are very welcome, Anne.

Yes the tonic water is a good one! With bad cramps obviously you can get your medics to prescribe quinine, but this is a seriously large dose and I would only take it if really necessary. Tonic water seems to do the trick, and I am not adverse to adding a little gin and ice on occasions! If you do suffer from cramp at any stage, it’s worth letting the tonic water go a little flat to avoid excessive wind…

As regards the digestive issues, sickness etc, I assume you are taking your TKI immediately after or with a meal? I also drink a large glass of water with the pills. It seems important to try to take them at the same time every day, within a few hours.

I wonder if you have tried the search engine on the forum. You can find a huge amount of useful, and usually reassuring, information here.

For the first 4 or 5 months of treatment I was on the forum at least once a day.


Hi, if you suffer badly from cramps try magnesium ,I used to have terrible cramps in my toes since being on magnesium they stopped like magic .Take it before bed and it helps you sleep too .Denise.


If you are very recently dx with CML unless there are specific and compelling reasons only known to your specialist I am surprised that your initial therapy offered is Bosutinib.Originally most patients would have been offered Imatinib as first line treatment (with Nilotinib or Dasatinib second line) but increasingly I gather Nilotinib would be prescribed as might Dasatinib as initial treatment.

I understood that normally Bosutinib would be offered to patients that had not previously performed well on the other 3 tkis or experienced high grade side effects.My concern would be if you cannot tolerate Bosutinib or do not perform well on it where do you go then?

I would be interested if your doctor is a CML specialist and whether he or she has mentioned to you any specific reasons for starting you on a tki that might be regarded as being third line .Are they requiring a more rapid response from a more powerful tki or were there scores from your bone marrow biopsy on diagnosis that were unusually high for instance? I presume that you are still in chronic phase as opposed to being at the accelerated stage?

Regarding side effects Bosutinib has a reputation for elevating blood pressure and cholesterol in some patients but not all.The rash is a common side effect of all tkis and you might find that the use of a steroid cream on an occasional basis might help e.g. Betnovate.All of us  on diagnosis would have experienced the psychological issues being faced with a condition that might require lifelong treatment but on the up side most of us with CML might expect a normal life span-so it is a bit of a bonus say compared to other leukaemias or cancerous conditions that might be still difficult to treat.

Many CML patients in the early stages will face adjustment issues as the body takes on a moderately toxic medication so bone pain ,eye bleeds, digestive issues plus night cramps seem to be some of the "normal" ones perhaps.

I wish you well



Hi Anne


welcome to the forum, I don’t post very often but read the comments and valuable advice regularly.

I was diagnosed nearly four years ago and have been taking Bosutinib for more than three of them. 

The early weeks post diagnosis are very hard both mentally and physically because your body takes time to adjust to the medication. I suffered for the first couple of weeks with diarrhoea, but it was also affecting my liver function so my haematologist reduced my dose and put me on a course of steroids while gradually increasing the Bosutinib dosage. From what I can remember this took a good few weeks but it worked.

if you can persist with Bosutinib you will learn to recognise which foods you are able to tolerate better than others. I still have days of diarrhoea but they are now not so frequent and I have learned to live with them. I also seem to have periods of nausea too, I can go for weeks feeling fine then feel quite nauseous for anything up to a week at a time.

What dosage of Bosutinib are you taking? 

You will find this site so informative, helpful and reassuring too. I hope things settle down for you soon.

Best wishes





David, thanks again. I have tried the search engine and it’s great. Very helpful. Also, yes I take my pill with dinner at night and attempt to drink a full bottle of water then. This forum has really been a reality check for me. I’ve never had a chronic disease and taken a toxic pill that makes me feel awful every night. A new experience! 

Diane, I really appreciate this specific info about bosutinib. Just what I needed. I’m taking 400 at night with dinner. it was titrated quickly up in the first 4 days. It turns out the pill is working fantastically well in terms of my blood counts. (Just drawn yesterday.) it is I who am not functioning so well at the moment! But knowing the process for you really helps. I was first diagnosed after routine blood work showed I had 1.3 million platelets. That was back in August. Bone marrow told the true story. So it’s early for me, and thank you very much for posting a reply to my query. Anne

Hi John, 

Thanks so much for your post. I think I can answer your questions.Yes I am seeing a CML specialist (at a major hospital in Boston). And yes bosutinib is a slightly odd choice for just-diagnosed CML, though happening more now in US I understand. My doctor made this choice I believe for 3 reasons: first, the Gleevec/Glivec was going to cost me $2,000 per month (US prices are incredible and unethical), 2. She has had good luck with bosutinib for the just- diagnosed so far, 3. Bosutinib  is known for causing thrombocytopenia and she knew that would not be a particularly bad side effect for me (I had 1.5million platelets two weeks ago). I am sure she does not think of it as “third line,” but I know what you mean. 
I appreciate particularly your comments on psychological and adjustment issues. It’s been a very strange few weeks for me. And I agree it’s odd to be taking something that makes you feel horrible but is going to help you live out your life to the fullest. I probably should have labeled my post “can I adjust?”  Anyway, I hope very much that I can!   Thanks

Would counsel against the full bottle of water.  This could go a long way in explaining the nausea.  I can't understand your doctor's logic about the expense of imatinib (which is generic now) when it's covered by every insurance I know, since it's standard of care first choice.  And isn't bosutinib just as expensive?  I've had CML for 12 years and I've never heard of using bosutinib as first-line treatment, but I guess your runaway platelets were her reason? What I've heard is that it works very, very well on the CML, causes diarrhea for almost everybody - lasting from the first few weeks to forever - and sometimes what forces a drug change are liver values gone amok.  BUT, if those things don't become a problem, most people I know on it really like it - many say it's the best experience they've had on all the other ones.