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Hi there,
The first few weeks following diagnosis are the scariest - so much uncertainty.
The medicine you are taking (Sprycel / dasatinib) is a 2nd generation TKI and is a very good medicine. It works really, really well. Because it works so well, and because you have only recently been diagnosed it is working on your blood which has not yet fully stabilised back to "normal". It sounds like your doctor is trying to balance the treatment of the CML in your blood with the other effects the medicine you are taking has on your blood, which is a sensible approach. Your doctor is proactively balancing the amount of medicine you are taking for your treatment.
While your platelets are low, there are some things you should be careful about. No asprin, or vitamin E. Don't do things which cause stresses on your body such as using a power tool, playing sports. You can bruise much easier. You might notice your gums bleed easier, so perhaps brush softly but for longer than you usually would (my sister is a dentist and would give this advice to everyone anyway!).
When is your next blood test scheduled? Soon I hope. Generally speaking, a platelet transfusion might be considered at 10,000 (per micro litre) which can temporarily help you until your blood levels return to more normal ranges. The likelihood is that with the lower dose of dasatinib, your platelet levels will rise and as soon as they are in a better place your doctor will increase your dose of dasatinib back to 100mg.
David.
I agree with all that David has advised. Please take notice of your doctor and follow his advice to lower the dose to 50mg. Hopefully your platelets will recover quickly but it may take a few weeks. Normal levels should be around 150,000 - 450,00 per micorlitre of blood.
See clip below:
The purpose of platelets “Platelets are the cells that circulate within our blood and bind together when they recognize damaged blood vessels,” says Dr. Marlene Williams, Assistant Professor of Medicine and CICU Director for Johns Hopkins Bayview Medical Center. “When you get a cut, for example, the platelets bind to the site of the damaged vessel, thereby causing a blood clot. There’s an evolutionary reason why they’re there. It’s to stop us from bleeding.”
What makes platelets change their shape?
Platelets, the smallest of our blood cells, can only be seen under a microscope. They’re literally shaped like small plates in their non-active form. A blood vessel will send out a signal when it becomes damaged. When platelets receive that signal, they’ll respond by traveling to the area and transforming into their “active” formation. To make contact with the broken blood vessel, platelets grow long tentacles and then resemble a spider or an octopus.
What is a healthy platelet count?
A normal platelet count ranges from 150,000 to 450,000 platelets per microliter of blood. Having more than 450,000 platelets is a condition called thrombocytosis; having less than 150,000 is known as thrombocytopenia. You get your platelet number from a routine blood test called a complete blood count (CBC).
Sandy
Thanks sandy how much time it will take to recover platelet count. Is reduced dose dangerious and increase cml deases.
Thanks David. Is this ok right now. Can cml patient live narmal life. I m 32 year old and unmarried can i marry.
I was diagnosed at about the same age as you. Assuming you respond well to your treatment - and the vast majority of us do - you can expect to live as long a life as you would have without CML. The medication really works incredibly well for most people.
CML should not stop you from marrying or having children in the future.
David.
Hello, I've been on Sprycel - dasatinib since February of 2009. A lower platelet count is "normal" with Sprycel - dasatinib. I'm down to 50mg of Sprycel and my platelet count is 133 thousand. My platelet count did not improve going from 100mg of Sprycel to 50mg. I'm not so sure I would reduce your dosage if you are recently diagnosed, in my humble opinion. I was on a 100mg of Sprycel for some years before considering dosage reduction. Hope that helps! Philip
Hi Ahmad
Its a very good idea to become your own specialist and reading around in this forum is a great place to start. This is true for any patient but esp if you live somewhere the health system is not good or well funded. If you are responding well to treatment then once a month should be enough for control.
I found it helpful to take control of my medical data and to understand it. I asked for all my blood test reports, kept them in my own spreadsheets and a friend made graphs with them. First I concentrated on white blood count, then on platlets, then on bcr/abl and hemoglobin. It took me about 4 months to get normal in most parameters and it appears I am a very quick responder so this is the minium time needed to get into normal ranges for blood counts. I took 10 months for undetectable bcr/abl.
You can READ and increase your knowlegde about your condition, you CAN take control of your medical records, you SHOULD talk to your doctors about your conclusions about your condition and treatment based on your reading and understanding.
Very best to you and keep us posted!