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Tasigna side effects

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My husband has started taking Tasigna.  We know flushing is a side effect, but he talks about feeling his pulse in his ears and eyes.  His shoulder joints ache, and his eyes are very puffy tonight and look like someone who has cried for a long time, which he hasn't.  The whites of his eyes are not as white as usual.  We've read the possible side effects and some of these are, but do they lessen over time?  He even talks about his hair hurting his head and even though he shaves, he says the hair on his face even feels like it's sticking him.  He is presently under an oncologist/cardiac team's care because he is a diabetic with a past history of heart issues.  Are these symptoms common?

I am on Dasatinib, but I had the "heart beat in the ear" thing.  I think this is due to low platelets, as mine has all but disappeared as my platelets have started to go back to a better reading.  I'm still not at a normal reading, but I'm not as low as I was.  

I started on 600 mg/day Tasigna in October 2016.  I did not have flushing effect or the pulse in my eyes and ears or the joint aches.  The head hurting could be folliculitis - I had that until I reduced dose to 150 mg/day about 4 months ago. Some people report side effects lessening over time but some side effects take time to materialize.  It seems to me that it is a very individual thing.  Your husband should definitely discuss these side effects with his oncologist, cardiologist and PCP. There may be treatments that can mitigate them.  Also, once he gets to MMR or better, he needs to lobby for dose reduction. That more than anything will lessen the side effects. Good luck to him

My husband has been on dasatinib for 4 months now. He has had some of the symptoms you describe your husband is experiencing. He felt like his heart was beating really loudly in his head but this stopped after the first week or so and he now thinks this was a combination of stress at starting the medication and body adjusting to it. Just recently he got very puffy eyes. Since taking Curcumin ( which is known for reducing inflammation) the puffiness has disappeared completely. He also was suffering from acne on his face and in his hair. His oncologist prescribed Clindamycin Phosphate which you apply to skin. He also swears by drinking at least a gallon of water a day to keep himself hydrated and the headaches away and we eat a healthy diet. Scuba and others I am sure will make lots of additional suggestions. 

I am closely following all the research on dosage reductions for his medication and we gave a couple of research papers to his oncologist when we met him last week. He was really glad to receive them as he treats patients with so many cancers he can’t be as up to date as if his sole focus was CML. As a result ofreading these research papers he is now very open to reducing my husband’s dosage after his next PCR result in 2 months. So I would really recommend that route if you would like to try a dose reduction. 

Best wishes to you both

Louise 

Hi Louise,

 

You're are very lucky to have a receptive oncologist. My previous oncologist was very resistant to questions and research. I did extensive research concerning an eye issue (diffuse retinal hemorrhages, iritis,  and neovascularization consistent with ocular ischemic syndrome). My previous oncologist was fond of saying "You can't blame everything on CML" but my ophthalmologist did additional  research and found that the eye issues were caused by my vascular disease and CML. I've had the same type response to my pleural effusion and kidney disease while on Sprycel.

I now have a much more open and approachable oncologist who welcomes questions and discussion. My new TKI is Tasigna.  Side effects are improving.