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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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May 2012 update

May 5, 2012 9 comments

It has been more than 18 months now that I have not been on any medication. My visit to the hematologist last week was a positive one. My platelet levels are within the the normal level which was such a relief. I have been maintaining a healthy lifestyle (exercise at least twice a week – gym or swimming), eat regular meals/healthy diet and managing my stress level.
One other interesting area that I would like to share is that I take freshly brewed coffee every morning. There were studies in the past shows that too much of caffeine intake could harm our body. However, recent studies seemed to prove otherwise. This is an interesting topic that I would like to work on some research of my own to weight the impact of coffee intakes and it’s affects to our human body.
I will share my findings and opinions in my next post.

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

April 17, 2012 Leave a comment

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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.

Platelets Behaving…

March 20, 2011 4 comments

Updates for Mar 2011. I was so relief to find out from my latest count to be at 402. I am off any medication for the past 6 months. I kept asking my haematologist if I am cured since it has not been elevated for the past 6 months. His answer is unfortunately No. This is a blood disorder that has no cure and its currently hovering at that level for me. I was told that some patients are receptive on the medication that they were put on and show no symptoms for few months or even a year. But the platelet counts may escalate again in the near future. I just have to be on constant watchout and get myself tests for platelet counts every 2-3 months. I do hope that this will maintain for years to come or never again escalated to an alarming level. Could a healthy lifestyle, diet and constant exercise could somehow be a good combination? Whether it is a contribution or not, its always better to live with a positive lifestyle and hope for the best that someday medical science will find a cure.

Categories: Medical Updates

Platelet Counts – Normal

February 10, 2011 2 comments

My last examination on Jan 21st, 2011 produced positive results. My platelet counts was at normal level. After been taken off the Interferon alpha treatment for almost 6 months, my platelet counts were pretty stable. I am now currently under observation by my haematologist every 2-3 months to ensure that it is indeed stable. I did asked my haematologist if there is any possibility that I was misdiagnosed since my platelet counts were stable and have not been elevated for about six months now. He confirmed and no doubt that I am suffering from this ET blood disorder. According to him, it is possible for certain patients that the platelets will be stable at a certain time and “might” elevate again later on. Hence, I will be put on observations once every 2-3 months.

It has been a year now and this month (Feb) marks the anniversary of my diagnosis last year in 2010. I do hope that my condition will stabilise and maintain the current positive outlook for years to come.

I just came back from a 10-day trip to Kolkata and Varanasi (India). My visit gave me a broader perspective of life and allow me to understand how fortunate we are living in a developed nation with proper healthcare, good living conditions, proper infrastructure, clean air and water, good transportation and governance. Living conditions in these places that I’ve visited in 10 days could be better. Poverty, cleanliness and hygiene are still an issue to be curbed and I do hope that the nation will take them seriously. I do hope that the nation will have a long-term plan to address these issues.

– Bryan –

Categories: Medical Updates