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Archive for the ‘General ET’ Category

May 2014 Update

May 22, 2014 3 comments

I have reached a milestone of 42 months without medication or treatment and 5 years since I was first diagnosed with ET. However, I still do visit my Hematologist every 6 months to monitor my platelets as a precaution.

A healthy diet, healthy lifestyle with regular exercise and stress management have been my regular mindset for the past few years now and I hope that might have helped.

With advanced technology and research these days, I do hope that the future is bright for ET patients seeking for a permanent treatment and cure for this rare blood disorder.

Video: Story of a group of patients with blood cancers essential thrombocythemia, myelofibrosis and polycythemia, collectively known as myeloproliferative neoplasms and efforts from MPN Research Foundation.

Pushing MPN Research Forward from MPNRF on Vimeo.

 

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Anagrelide vs Hydroxyurea

March 10, 2013 42 comments

According to an article that I’ve read on the internet, both treatments either  anagrelide or hydroxyurea have no significant difference between them. This research was done with a group of patients and the study was recorded and registered at the U.S. National Institutes of Health

http://www.clinicaltrials.gov as #NCT01065038

Based on the research, Anagrelide as the selective platelet lowering agent is not inferior compared to hydroxyurea in preventing thrombotic complications in patients. More details on the article can be found from the following source below.

Anagrelide_Hydrea

Source:

bloodjournal: http://bloodjournal.hematologylibrary.org/content/early/2013/01/11/blood-2012-07-443770.abstract
Anagrelide: http://en.wikipedia.org/wiki/Anagrelide
Hydroxyurea: http://en.wikipedia.org/wiki/Hydroxycarbamide

MPN Patient Symposium by MPN Research Foundation on Thursday, May 17, 2012

April 17, 2012 Leave a comment

Image

MPN Research Foundation is organizing a symposium for Patients and caregivers at San Matteo California. Attendees will hear the most recent news on MPN research, clinical trials and treatment practices by these distinguished physicians and researchers.

Dr. Jason Gotlib, Stanford University Medical Center
“JAK Inhibitors in Myelofibrosis: What We Know and Don’t Know”

Dr. Ross Levine, Memorial Sloan-Kettering Cancer Center
“Insights from Genetic Studies of MPNs”

Dr. Ruben Mesa, Mayo Clinic – Scottsdale
“Overcoming Your MPN”

Dr. Laura Michaelis, Loyola University Medical Center
Topic to be determined

Details can be found at http://www.mpnresearchfoundation.org/
Register yourself with the newsletter from the MPN Research Foundation website to receive informative news and updates from the MPN research and community.

Thrombocytosis Diagnosis – Algorithm

March 31, 2012 11 comments

I found this very informative online site that provides the algorithm to diagnose PV, ET and Other MPN.

http://bloodjournal.hematologylibrary.org/content/117/5/1472/F1.expansion.html

Diagnosis is done through Blood tests and/or Bone Marrow Biopsy.

Bone Marrow Biopsy

June 22, 2011 10 comments

I’ve been wanting to share my experience with Bone Marrow Biopsy procedure since I underwent it last year (2010). Hope that this gives an overall picture on how the procedure works and why I went for the biopsy.

BoneMarrowBiopsy

Image Source: Mayo Clinic

I underwent a Bone Marrow Biopsy early last year 2010 as part of a diagnosis to identify the root cause of my platelet escalation more than a million platelets per microliter of blood (normal person’s platelet count: between 150,000 to 400,000 platelets per microliter of blood). My hematologist calls me a “Millionaire”… a millionaire platelet patient.

In order to identify the issue for the sudden elevation of platelets, I would need to undergo a Bone Marrow Biopsy procedure. This is to rule out the common issue that may have caused the elevation like inflamation or infection in any parts of my body. However, I do not have any apparent infection or inflamation that could be determined as I looked healthy from the outside. The only thing that I was experiencing was a high fever due to high platelets.

Bone marrow is the flexible tissue found in the interior of bones. In humans, bone marrow in large bones produces new blood cells. On average, bone marrow constitutes 4% of the total body mass of humans; in adults weighing 65 kg (143 lbs), bone marrow accounts for approximately 2.6 kg (5.7 lbs). The bone marrow produces the cellular elements of the blood, including platelets, red blood cells and white blood cells.

The bone marrow biopsy sounded like a complex process, but I was assured that it is safe and its the best way to diagnose and eliminate a number of conditions, including leukemia, multiple myeloma, lymphoma, anemia, and pancytopenia. I was at the Medical Center in the morning, registered, checked-in and prepare myself for the biopsy. Right before noon, the biopsy was performed by my Hematologist. I was adminster with medication to relax myself prior to the procedure. It was then performed on the back of my hipbone, whereby I need to lie on my side to allow the insertion of the needle into my hip bone. I felt a sting and a slight burning sensation when the numbing medicine is applied. I felt pressure gaining on my hip as the needle is inserted into the bone. Then I experienced a sharp, stinging and sucking sensation as the marrow is removed. This feeling lasts for only a few moments before I passed out and slept due to the earlier medication that I took.

I woke up a few hours later. Overall, the procedure was a success. I could only feel a pressure at the back of my hip and was wrapped with a bandage around my waist. It was quite an experience and if performed properly you will not feel much pain and complication.

* Please ensure that you consult your Doctor or Hematologist if you need to undergo this procedure. Your Doctor or Hematologist will advice if this is necessary.

The following video (that I found on the web) gives an overview on how Bone Marrow biopsy procedure is performed generally and its similar to how it was performed on me.

Sources:
http://en.wikipedia.org/wiki/Bone_marrow
http://en.wikipedia.org/wiki/Bone_marrow_biopsy
http://drugster.info/ail/pathography/1774/
http://www.mayoclinic.com/health/bone-marrow-biopsy/MY00305

Categories: General ET

Recommended Lifestyle for ET Patients by Mayo Clinic

March 25, 2011 4 comments

I tried searching for lifestyles and diets for patients with ET. I came upon the following recommendations by Mayo Clinic.

Take extra care to reduce your risk of developing blood clots if you have essential thrombocythemia. Healthy lifestyle habits can lower your risk of developing conditions that may contribute to blood clotting. These conditions include diabetes, high blood pressure and high blood cholesterol. Take steps to:

  • Eat healthy foods. Choose a varied diet rich in whole grains, vegetables and fruits and low in saturated fats. Try to avoid trans fats. Learn about portion control to maintain a normal weight.
  • Increase your physical activity. Aim for at least 30 minutes of moderate physical activity a day. Take a brisk daily walk. Ride your bike. Swim laps. If you can’t fit in a long workout, break it up into smaller sessions spread throughout the day.
  • Achieve or maintain normal weight. Being overweight or obese increases the pressure in the veins in your pelvis and legs and is a risk factor for conditions such as high blood pressure, which increases your risk of blood clotting.
  • Stop smoking. Smoking affects blood clotting and circulation.

If your ET increases your tendency to bleed, take extra precautions to keep from injuring yourself. Follow these suggestions:

  • Avoid playing contact sports or engaging in other activities that could be dangerous or could cause you to fall.
  • Use a softer toothbrush and waxed floss.
  • Avoid shaving cuts. Shave with an electric razor.
  • Be cautious with household tasks involving knives, scissors and other sharp tools.

Source: http://www.mayoclinic.com/health/thrombocythemia/DS01087/DSECTION=lifestyle-and-home-remedies

Introduction

January 3, 2011 7 comments

Welcome to “Life with Essential Thrombocytosis”.

This blog is meant to share experience, knowlege, news of new researches on blood disorder, meeting new friends who also suffered from this disorder and hopefully to share our concerns and hope for a better future to find a cure for this blood disorder. This site does not provide a professional medical opinion and will not be responsible for any medical attention or decision for treatments. Please seek a professional Medical Doctor or a Medical Specialist to diagnose and treat your case.

Essential thrombocytosis (ET, also known as essential thrombocythemia) is a rare chronic blood disorder characterized by the overproduction of platelets by megakaryocytes in the bone marrow in the absence of an alternative cause. In some cases this disorder may be progressive, and rarely may evolve into acute myeloid leukemia or myelofibrosis. It is one of four myeloproliferative disorders.

The following YouTube video by Professor Ruben Mesa, MD from MayoClinic provides a quick and informative overview of ET.

Source: http://en.wikipedia.org/wiki/Essential_thrombocytosis