Tuesday, January 19, 2016
Wednesday, January 13, 2016
New Treatment and Research 2016
Having a rare cancer means, the possibility of living out your life, with no cure. Sometimes this is very overwhelming for me; I have periods of despair and sadness. If I put my mind to good thoughts, and the prospect of new research and clinical trials, I leave the sadness and apprehension behind, and focus on finding one for me!
I am learning so much about this disorder, and the ways in which it has developed. For me, they have discovered one genetic defect, MTHFR c677t. I am in the process of having more genetic testing done, because it has been discovered that there are many genetic abnormalities that are associated with myeloproliferative disorders. In order to receive the best treatment option available, it is necessary to obtain more genetic testing. This is in part due to the function of the genes involved; for example, MTHFR involves the process of homocysteine. This is caused by a reduction of folate and vitamins B, in the blood. As with any form of deficit, if one part of the body is out of whack, the whole body goes with it~
I am sharing the following links to assist people in understanding the process of myeloproliferative disorders, and their treatment options and advancement. One of my favorite websites is called, Patient Power. What I have learned, you have to be an advocate for yourself, as a patient, especially when dealing with a rare disease. Not only to keep yourself informed, but for your doctor as well. Let's face it, doctors are fallible, including mine. In fact, even though I do have a fondness for my hematologist, he has a very narrow understanding of this disorder. It took nearly one year to reach a final diagnosis and in that time, he did not do all the necessary work-ups, because my disease is so rare, how could I have it?? I suggest anyone with any type of cancer, to look into Patient Power, it has helped me tremendously!
http://www.patientpower.info
For MPN's specifically, the newest updates are found here:
http://www.patientpower.info/video/ash-coverage-mpn-research-updates-from-a-panel-of-experts
I am learning so much about this disorder, and the ways in which it has developed. For me, they have discovered one genetic defect, MTHFR c677t. I am in the process of having more genetic testing done, because it has been discovered that there are many genetic abnormalities that are associated with myeloproliferative disorders. In order to receive the best treatment option available, it is necessary to obtain more genetic testing. This is in part due to the function of the genes involved; for example, MTHFR involves the process of homocysteine. This is caused by a reduction of folate and vitamins B, in the blood. As with any form of deficit, if one part of the body is out of whack, the whole body goes with it~
I am sharing the following links to assist people in understanding the process of myeloproliferative disorders, and their treatment options and advancement. One of my favorite websites is called, Patient Power. What I have learned, you have to be an advocate for yourself, as a patient, especially when dealing with a rare disease. Not only to keep yourself informed, but for your doctor as well. Let's face it, doctors are fallible, including mine. In fact, even though I do have a fondness for my hematologist, he has a very narrow understanding of this disorder. It took nearly one year to reach a final diagnosis and in that time, he did not do all the necessary work-ups, because my disease is so rare, how could I have it?? I suggest anyone with any type of cancer, to look into Patient Power, it has helped me tremendously!
http://www.patientpower.info
For MPN's specifically, the newest updates are found here:
http://www.patientpower.info/video/ash-coverage-mpn-research-updates-from-a-panel-of-experts
Cancer & Financial Assistance
I have been researching different avenues of financial resources, not only for my family, but those in need of assistance during their cancer journey. There are so many organizations and individuals that have been touched by cancer and wish to give back.
The following is a list of organizations with different objectives to assist families in need:
http://familyreach.org/family-eligibility/
http://www.themaxfoundation.org/resources/HelpfulLinks.aspx
http://www.finaid.org/scholarships/cancer.phtml
http://www.mpnresearchfoundation.org/LLS-offers-assistance-to-patients
The following is a list of organizations with different objectives to assist families in need:
http://familyreach.org/family-eligibility/
http://www.themaxfoundation.org/resources/HelpfulLinks.aspx
http://www.finaid.org/scholarships/cancer.phtml
http://www.mpnresearchfoundation.org/LLS-offers-assistance-to-patients
Thursday, January 7, 2016
What Would YOU Do?
Let me ask, what is the length that you would go to, to save your own life? I am speaking medically of course; what type of treatment option would you "dare", if it were cutting edge? Or say, "innovative treatment of the 21st century"? The quote is linked to a research article outlining a new treatment option for my disease, polycythemia vera. However, it seems an option that is daunting. It is called, parasitic oncology. Yes, parasitic! The following information is from the research article:
"This oncolytic parasitic treatment for PRV may be looked upon as an innovative treatment of the 21st century since most contemporary physicians may be unaware of it.
The Plasmodium-based treatment can be administered by intravenous injection of the cultured P. knowlesi as needed and it is non-pathogenic to humans. The parasite causes a high fever infecting RBC and, after few 24-h cycles of replication, self-terminates without any treatment" (Syeda Taliya Rizvi and Omar Bagasra, 2015).
Follow along now, this treatment won a Nobel Peace Prize in 1927 as the cure for syphilis! Fascinating! The entire process is intriguing, and intimidating! The challenge? A doctor who will actually do this, and if my body can withstand a fever, due to the clots.
DO NOT EVER SAY, I WILL NEVER DO THAT! ONE DAY, YOU COULD BE FACED WITH A DECISION, AND YOU WILL CONTEMPLATE "DOING THAT"!
"This oncolytic parasitic treatment for PRV may be looked upon as an innovative treatment of the 21st century since most contemporary physicians may be unaware of it.
The Plasmodium-based treatment can be administered by intravenous injection of the cultured P. knowlesi as needed and it is non-pathogenic to humans. The parasite causes a high fever infecting RBC and, after few 24-h cycles of replication, self-terminates without any treatment" (Syeda Taliya Rizvi and Omar Bagasra, 2015).
Follow along now, this treatment won a Nobel Peace Prize in 1927 as the cure for syphilis! Fascinating! The entire process is intriguing, and intimidating! The challenge? A doctor who will actually do this, and if my body can withstand a fever, due to the clots.
DO NOT EVER SAY, I WILL NEVER DO THAT! ONE DAY, YOU COULD BE FACED WITH A DECISION, AND YOU WILL CONTEMPLATE "DOING THAT"!
New Normal
Since my first post, I have had a rough time, medically. I suffered a cerebral accident, a mini stroke, caused by small blood clots in the left posterior brain. It was also discovered that I have some minor heart abnormalities, mitral valve regurgitation is one of them. This essentially means that when my heart pumps blood out of the left valve, some slips back in. I meet with my new cardiologist in a week to find out the final results of all the cardio work-ups!
My doctor count is currently, five. All necessary to the continuing of my existence; primary, hematologist, cardiologist, neurologist, and gynecologist. Well, there is the eye doctor and the dentist, and oral surgeon, but really, who's counting?
I was getting used to my "then" new normal, and a newer normal is now upon me. While my crafting will continue, it will be at a much slower pace. I am learning to live a very slow life. The disease progressed far enough during the "diagnosis" phase, that it has done damage to my two major organs, brain and heart. I live a daily regime of pills to basically keep me alive. I live with a series of blockages in my cerebral artery, and internal carotid arteries. Much of it makes no sense to me, all so new. I am living with a malignant blood cancer, that tries to destroy everything in its path.
This disease, cancer, has taken my life dreams and expectations. In the blink of an eye, it is all changed. The career, a human rights activist, no longer able to pursue my college education due to my lack of concentration, and memory. Criminal Justice, my love and my passion. Two classes short of my BS in Criminal Justice, now to sit at home in my pj's with 24 hour supervision. I want to scream, IT ISN'T FAIR, and I do, but somehow it does not help the situation. The tears and sadness come and go, as I wade through the waters of my newness. Laughing is my best medicine, I look for a smile every day. I do not have to look very far with the comedians in this house. They keep me alive.
It is time for me to come out of my "hiding" phase; the one where I pretend this does not exist, try to ignore the reality. This cancer, a Myeloproliferative Neoplasm called Polycythemia Vera Rubra, is rare. So rare, there are currently no cures, only medications that restore quality of life to the patient. My current treatment protocol is a chemotherapy drug called, hydroxyurea. It is working well for me clinically, symptoms are also reduced, but I am taking this on a daily basis, and it comes with its own set of issues. At this point, like I mentioned, my medications are keeping me alive. Without treatment my life expectancy would be less than a year, given my other organ dysfunctions. Even with treatment, every day is a blessing, there is no control over my body. A feeling of falling without a net!
So, how am I going to react to all this crap? Let it drain me of my hope and happiness, I think not! I have been researching new options and ideas for treatment, and will be sharing that in a later post! I am also going to launch a new advocacy campaign, to raise awareness of my disease, and raise funds to help my family pursue optional treatments that may not be covered by my insurance. As my contribution, I will give back a portion of the funds raised to a foundation that is working diligently to find a cure for myself and others!
In all of my years of advocacy, one thing I have learned, "the squeaky wheel gets the grease". It is one thing to live with this disease, it is another to sit silently and WAIT for a cure.
I CAN'T & I WON'T BE A SILENT SURVIVOR! IF GOD CHOSE ME FOR THIS DESTINY, THEN I HAVE A PURPOSE TO LIVE UP TO! I BELIEVE I CAN MAKE A DIFFERENCE FOR FUTURE GENERATIONS, IF THIS IS THE WAY, THEN I ACCEPT THE CHALLENGE!
My doctor count is currently, five. All necessary to the continuing of my existence; primary, hematologist, cardiologist, neurologist, and gynecologist. Well, there is the eye doctor and the dentist, and oral surgeon, but really, who's counting?
I was getting used to my "then" new normal, and a newer normal is now upon me. While my crafting will continue, it will be at a much slower pace. I am learning to live a very slow life. The disease progressed far enough during the "diagnosis" phase, that it has done damage to my two major organs, brain and heart. I live a daily regime of pills to basically keep me alive. I live with a series of blockages in my cerebral artery, and internal carotid arteries. Much of it makes no sense to me, all so new. I am living with a malignant blood cancer, that tries to destroy everything in its path.
This disease, cancer, has taken my life dreams and expectations. In the blink of an eye, it is all changed. The career, a human rights activist, no longer able to pursue my college education due to my lack of concentration, and memory. Criminal Justice, my love and my passion. Two classes short of my BS in Criminal Justice, now to sit at home in my pj's with 24 hour supervision. I want to scream, IT ISN'T FAIR, and I do, but somehow it does not help the situation. The tears and sadness come and go, as I wade through the waters of my newness. Laughing is my best medicine, I look for a smile every day. I do not have to look very far with the comedians in this house. They keep me alive.
It is time for me to come out of my "hiding" phase; the one where I pretend this does not exist, try to ignore the reality. This cancer, a Myeloproliferative Neoplasm called Polycythemia Vera Rubra, is rare. So rare, there are currently no cures, only medications that restore quality of life to the patient. My current treatment protocol is a chemotherapy drug called, hydroxyurea. It is working well for me clinically, symptoms are also reduced, but I am taking this on a daily basis, and it comes with its own set of issues. At this point, like I mentioned, my medications are keeping me alive. Without treatment my life expectancy would be less than a year, given my other organ dysfunctions. Even with treatment, every day is a blessing, there is no control over my body. A feeling of falling without a net!
So, how am I going to react to all this crap? Let it drain me of my hope and happiness, I think not! I have been researching new options and ideas for treatment, and will be sharing that in a later post! I am also going to launch a new advocacy campaign, to raise awareness of my disease, and raise funds to help my family pursue optional treatments that may not be covered by my insurance. As my contribution, I will give back a portion of the funds raised to a foundation that is working diligently to find a cure for myself and others!
In all of my years of advocacy, one thing I have learned, "the squeaky wheel gets the grease". It is one thing to live with this disease, it is another to sit silently and WAIT for a cure.
I CAN'T & I WON'T BE A SILENT SURVIVOR! IF GOD CHOSE ME FOR THIS DESTINY, THEN I HAVE A PURPOSE TO LIVE UP TO! I BELIEVE I CAN MAKE A DIFFERENCE FOR FUTURE GENERATIONS, IF THIS IS THE WAY, THEN I ACCEPT THE CHALLENGE!
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