My mum wass diagnosed with ET Jak 2 positive.. In her last blood test her white blood count was slightly lower than normal at 3967.. She is taking Hydroxurea and was told that it might cause this.. Anyone else had this side effect? What did you do to raise it?
Thank you in advance for your reply
I have had a low white blood count while on Hydroxyurea , when it was 3 the Dr cut my meds to 500mg a day from 1000.
She is on 500mg every day.. Is there a lower dosage than that?
Like many forms of cytoreduction, HU can lower all blood cell counts. Mild leukopenia is fairly common. It is important to note which of the WBCs are being lowered. Neutrophils (antibacterial) are generally considered the most important leukocyte to pay attention to. Lymphocytes (antiviral) are also important, but the docs worry less about these.
Provided that the WBCs do fall too low, the decrease can be tolerated. The body will still respond to an infection. Your Mum's MPN care team can identify appropriate limits to how low is acceptable. I would note that I am also experiencing mild leukopenia on Besremi. it is considered acceptable provided that my NEUT > 1.00 [10^3/uL] and LYMPH > 0.50 [10^3/u/L].
There is no way to raise the WBCs per se. What can be done is to strengthen the immune system though nutrition. I also take several immune boosting supplements under the care of an Integrative Medicine doc (Reishi, Astragalus). So far so good. i feel well and healthy. i weather a COVID infection back in january. No other infections to speak of.
Hope you and your Mum both stay well and healthy.
Thank you so much for the detailed answer.. Her problem is the lymphocytes just slightly under normal. Her hematologist was reassuring but will have her repeat blood work in a month. Unfortunately where I am there is no MPN specialist that I know of so we just rely on a hematologist. She is extremely worried that ET is something really worse than what the doctor is telling her but with your help as a forum I am trying to calm her down. My best wishes to you too for good health
I look at ET similar to diabetes where the condition needs to be managed. Kept under control we should live a normal life span. It sounds worse because of the cancer word but this means we are kept an eye on regularly so I look at that as a good thing. Several medication options out there for your Mum of which this site can give you plenty of info on. You must be worried about your Mum too but I am sure with the help of this site you will both find comfort that it really isn’t too bad. Big hugs
I could be completely wrong about this, but I strongly suspect that the days of doctors hiding (or sugar-coating) our prognoses from us are well and truly over. Hopetohelp’s analogy with diabetes is a good one, and I believe Prof Harrison likens it to high blood pressure: you must treat it and keep an eye on it, but that’s mainly it!
We all understand the fear when first diagnosed. ET is a chronic condition that is technically classified as a blood cancer but is really more analogous to a condition like diabetes or hypertension. If properly managed, people with ET can expect to live a normal lifespan. you are more likely to die with ET than from it.
The truth is that the secondary/constitutional symptoms are often more bothersome than primary risk of thrombosis. Learning more about managing these symptoms will improve quality of life significantly. Note that I was diagnosed with ET 30 years ago. it progressed to PV about 8 years ago. I have lived a rich life and at age 67 continue to do so. There are symptoms to be managed but they can be managed with proper care.
Proper care means consulting with a MPN Specialist. It is worth doing whatever necessary to consult with a MPN Specialist. Not sure where you mother lives , so here are two lists.
Worldwide mpnforum.com/list-hem./
USA pvreporter.com/mpn-speciali...
All the best to both of you.
It came as a shock to us since it was discovered during a regular l check-up.Thank you for posting this list but we are in Greece so it is not in the list. How is an MPN specialist more of an expert compared to a hematologist?
MPN Specialists are hematologists with expertise in MPNs. MPNs are very rare disorders. Most hematologists rarely if ever treat MPNs. Unforuntatly, most lack the expertise to provide optimal treatment. Others from Greece have noted the problem finding a MPN Specialist there. Perhaps others from Greece can weigh in on this.
It is quite common for Et to be found on a routine check up. many of us are asymptomatic other than showing with elevated platelets. That is exactly what happened to me 30 years ago.
Perhaps if you check with hematologists at a major hospital/university center you will find hematologists with greater expertise. If you find a doc who is a MPN expert, please be sure to add the doc to the list. Others can benefit that way.
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