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Swere Headache & Red eyes / Puffiness / One of the Doctor advising to change from Disatinib to Imatinib

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Hi All,

Its second month in CML & on Disatinib 100 mg

My wife is experiencing acute headache in the evenings from last one week. Apart from this she was previously experiencing pimples and puffiness on her face. Also, her eyes are getting red.

While the pimples have started to settle down, the puffiness is still there and last week was almost one paracetamol a day.

The blood tests show slightly less hemoglobin levels and iron level had dropped a bit more along with vit D.

We are consulting two doctors and one of them said take paracetamol when you have headache and continue with the medicine.

The other doctor has recommended to change to imatinib 400 mg

We were previously told Disatinib would suit our requirements more as we would like to plan family down the line (She has just turned 35). Also, Disatinib has better results. With this new input we are in a fix on which way to go.

We have BCR-ABL test next month. Please advise. SHould we wait on Disatinib or should we change
Super confused.

Hi,

Dasatinib doesn't necessarily have better results than imatinib. It does tend to work faster, but speed isn't necessarily the goal! There is some evidence that it might give a better chance of treatment free remission than imatinib if that is a goal for her.

Given it's just the second month, it's difficult to say she could try a lower dose of dasatinib. There is some evidence 50mg may be enough for most people, but this is not standard practice or widely accepted just yet.

The half-life of dasatinib is very short, between about 3-5 hours. Because of this it flushes out of your system quite quickly, with less than about 3% of it left in your system after 24 hours. Given this I wonder if your doctor might agree to withdraw dasatinib for 3 days and see if symptoms improve. If there's a marked difference then you know for sure the dasatinib is causing this and a move to try imatinib sounds like a sensible option.

David.

Hi,

In respect of your side effects on Dasatinib and in particular the red eyes and puffiness unfortunately some patients on imatinib find that eye issues are quite common side effects as well;I remember my first six months on imatinib and the eye bleeds and swollen tissues/eyelids.So it might be worth considering that imatinib might not improve the eye issues for you.I would suggest to bathe your eyelids and surrounds with warm already boiled water and cotton wool or use a plant based eye wash.

In terms of which painkillers to take for the headache paracetemol might be the suggested medication but that alongside the tki Dasatinib can put some stress on the liver especially if you use high doses and use it long term.If you are on Dasatinib it is wise to completely avoid aspirin as it leads to stomach bleeding.There are other non steroidal anti-inflammatories (NSAIDS ) that you might consider with your doctor such as diclofenac and indomethacin;however because of stomach bleeding diclofenac seems to be out of favour I believe.Indomethacin is apparently quite good for headaches.

It might be wise to avoid the use of ibuprofen as in combination with tkis some research has shown that  it does affect the uptake and effectiveness of Imatinib and Dasatinib.

You might find that after some months and when your body adjusts to the new medication that the initial side effects  modify or become less severe.The other consideration is that because Dasatinib is a so called second generation tki it is reputed to more powerful than imatinib and you may get get a quicker and deeper response;also it is the better drug if you are planning for a family I understand

I wish you well

John

Hi David,

Thanks for your response. 

One of the two doctors have recommended this change from Disatinib 100 mg to Imatinib 400 mg while other one has recommended to continue on Disatinib. 

We are wondering if we should wait another month on Disatinib and get our bcr -abl done and then evaluate if we are having a hard time with medicine. 

There would definitely be some side effects of imatinib as well and what if they are similar on imatinib. 

Thanks 

 

 

 

 

 

Thank you John. Your words have cleared quite a bit of doubts and trust me this is what I find beautiful about this forum. 

We are planning to revisit our  this doctor tomorrow and ask if we should continue Dasatinib for another month, get BCR-ABL and then evaluate if we need to change. 

On the positive side the pimples have reduced, puffiness is constant and headache is the new issue. My only worry is that these side effects dont have an otherwise impact. 

Thanks

 

Hi, sorry to hear your wife is suffering on 100 mg Dasatinib I am not surprised that Dose  is too toxic.I refused to go on 100 mg and insisted on 50 mg ,research says less is more with Dasatinib and it worked for me much to my doctors surprise .I felt awful on Imatinib ,see if you can reduce to 50 mg first don't change yet ,give it a chance .Dont be bullied it's your wife's body and she has got to cope with it .If 50mg doesn't work then maybe change but I hope it will .Good Luck ,Denise.