In the last 10 months, the Mayo Clinic has become my second home. Not only did I spend two weeks vacationing there, but I have made in the vicinity of 50 other trips to visit to the Mecca of health care. I remember hearing about the Mayo Clinic decades ago and knowing that it truly was the place to go if you needed medical care. It is where people go when there seems to be no hope form anywhere else. Little did I know that I would eventually become one of their patients.
Last year there were roughly 20,000 people that were diagnosed with Multiple Myeloma. Of those 20,000, zero have been cured. That is a problem for all of us. The good thing is that there are advancements made every day in the fight against this disease. There was a recent release by the Mayo in Rochester, MN that talked about mapping out the genome of the disease.
http://discoverysedge.mayo.edu/multiple-myeloma-genomics/
It took a week on a super computer to actually get it mapped out so I doubt that I’m going to get a shot at it anytime soon. However they did study a woman that has had the disease disappear and reappear several times since her battle started. What they found was that the disease morphed each time it came back. Not too surprising in that viruses are famous for their ability to adapt to our defenses and come back strong.
The hope is that the more they know about the disease, the better they can fight it. The real truth is that it doesn’t have to morph to be different. I am a perfect example of how everybody’s disease is a little different. Matt Hare, who I wrote about a short time ago, just completed his transplant. He is going through the post transplant Hell that is inevitable no matter how much you believe it won’t.
During his chemotherapy treatment that he had before the transplant, he reached full remission with no MM found in his bone marrow. We both took the same chemo and took it for the same number of treatments. My particular brand of the disease proved to be a little more resilient and I only reduced me level to about 1/5 of what it once was. Then in the month before the transplant, it rebounded to three times that level. I obviously had a determined little bug in me.
The transplant is the equivalent of bringing in Batman and Superman to fight the bad guy. That is as good as it gets. It is the best shot at wiping out the disease in your system. Obviously, my bug brought along a bit of kryptonite because even the transplant didn’t wipe it out. Significantly reduced, but still hanging around.
However, the transplant did knock it for a loop as it hasn’t yet been able to rebound to previous levels. I have been able to remain in very good partial remission since the transplant. Not the ideal situation to be in, but certainly better than the alternative. Because of the roller coaster trip that my blood counts have taken, I have to return to the Mayo every month for another blood draw and visit with the doctor.
One of the scariest times that a cancer survivor has to face is that yearly check-up that confirms that the disease has been put to sleep, so to speak. I get to do that every month. Even though I feel great, I always have the fear that the MM has gained the upper hand. It is not a pleasant feeling. Today was the latest visit to the doctor to find out if my body is doing its job and keeping the disease at bay.
Luckily things have continued to improve. Since my high post transplant light chain mark of 9.45 in December, each test has shown a decrease with it now resting comfortably at 6.72. The lowest it has been is 5.98. I met with Angela Mayo (no relation) today, Dr. Mikhael’s physician’s assistant, and she gave me that latest good news. I now get to take a month off from the testing since it seems to have leveled off and I will go back in April. You have no idea how good that sounded.
She dropped another bomb on me when she told me that they have a patient that has had the disease for 16 years. Sixteen years!!! When I first got the disease, I wondered if I could do a deal to be assured ten years, would I take it. Not any more. If somebody else can do 16 years, so can I.
Last year there were roughly 20,000 people that were diagnosed with Multiple Myeloma. Of those 20,000, zero have been cured. That is a problem for all of us. The good thing is that there are advancements made every day in the fight against this disease. There was a recent release by the Mayo in Rochester, MN that talked about mapping out the genome of the disease.
http://discoverysedge.mayo.edu/multiple-myeloma-genomics/
It took a week on a super computer to actually get it mapped out so I doubt that I’m going to get a shot at it anytime soon. However they did study a woman that has had the disease disappear and reappear several times since her battle started. What they found was that the disease morphed each time it came back. Not too surprising in that viruses are famous for their ability to adapt to our defenses and come back strong.
The hope is that the more they know about the disease, the better they can fight it. The real truth is that it doesn’t have to morph to be different. I am a perfect example of how everybody’s disease is a little different. Matt Hare, who I wrote about a short time ago, just completed his transplant. He is going through the post transplant Hell that is inevitable no matter how much you believe it won’t.
During his chemotherapy treatment that he had before the transplant, he reached full remission with no MM found in his bone marrow. We both took the same chemo and took it for the same number of treatments. My particular brand of the disease proved to be a little more resilient and I only reduced me level to about 1/5 of what it once was. Then in the month before the transplant, it rebounded to three times that level. I obviously had a determined little bug in me.
The transplant is the equivalent of bringing in Batman and Superman to fight the bad guy. That is as good as it gets. It is the best shot at wiping out the disease in your system. Obviously, my bug brought along a bit of kryptonite because even the transplant didn’t wipe it out. Significantly reduced, but still hanging around.
However, the transplant did knock it for a loop as it hasn’t yet been able to rebound to previous levels. I have been able to remain in very good partial remission since the transplant. Not the ideal situation to be in, but certainly better than the alternative. Because of the roller coaster trip that my blood counts have taken, I have to return to the Mayo every month for another blood draw and visit with the doctor.
One of the scariest times that a cancer survivor has to face is that yearly check-up that confirms that the disease has been put to sleep, so to speak. I get to do that every month. Even though I feel great, I always have the fear that the MM has gained the upper hand. It is not a pleasant feeling. Today was the latest visit to the doctor to find out if my body is doing its job and keeping the disease at bay.
Luckily things have continued to improve. Since my high post transplant light chain mark of 9.45 in December, each test has shown a decrease with it now resting comfortably at 6.72. The lowest it has been is 5.98. I met with Angela Mayo (no relation) today, Dr. Mikhael’s physician’s assistant, and she gave me that latest good news. I now get to take a month off from the testing since it seems to have leveled off and I will go back in April. You have no idea how good that sounded.
She dropped another bomb on me when she told me that they have a patient that has had the disease for 16 years. Sixteen years!!! When I first got the disease, I wondered if I could do a deal to be assured ten years, would I take it. Not any more. If somebody else can do 16 years, so can I.
John,
ReplyDeleteWe continue to pray for you, Matthew and the others that have been stricken with this cancer and know that with the research being done, you and Matthew will be two of the people that live well beyond the 16 years you mentioned.
Did you get to see Matthew's interview on 10TV ? There is a link on his face book page and caringbridge site.
Doug