Hi there
This site was such a source of comfort and knowledge when my husband was diagnosed 8 years ago with CML. He responded very well to Sprycel ( 50 mg) with few side effects and this past June after being undetectable for more than 2 years, he stopped treatment. Since then he has had 4 monthly blood tests and has maintained his undetectable status.
In case it matters for the last few months of treatment, he did switch to a generic version of Sprycel.
2 months ago ( 2 months after stopping Sprycel and feeling amazing as energy levels zoomed), my husband suffered a major stroke. Unfortunately we didn’t recognize what was happening as the lack of balance / dizziness he experienced was masked by continuous vomiting, so it wasn’t until the following morning that we called 911 and he was admitted. Even then it took many hours in the ER and three scans to confirm an ischemic stroke in his cerebellum.
He was extremely fortunate that the blood clot caused damage to his balance and coordination but no cognitive deficits and he has made a remarkable recovery two months on and is close to how he was pre stroke.
He has had multiple tests to determine what caused the blood clot as despite raised blood pressure at time of stroke, he was otherwise in good health, good diet, exercised, and relatively young for a stroke at 58. His heart calcium rate shows a v low risk of a stroke.
His neurologist, cardiologist and oncologist both feel that the Sprycel was a contributing factor to his blood thickening and clotting. In fact his oncologist told him 2 of his other patients had also had strokes.
I wanted to share my husband’s story not to cause fear ( because Sprycel saved his life) but to raise awareness and to encourage everyone to pay attention to their blood pressure and to be aware of signs of a stroke, in particular the feeling of vertigo / loss of balance. At no time was my husband unable to speak nor did he show signs of droopiness in his face. If you get to the hospital within 4 hours, the impact of a stroke can be reversed so timing is all.
We also feel that sometimes you can be so focused on one aspect of your health ( leukemia) you ignore other aspects such as rising blood pressure. I definitely think this was true in his case.