It has been a couple of weeks since my last post, and most of the focus has been on my lower back and right leg. The tumor on my spine was putting pressure on my spine and the nerves to my right leg. The result was very intense pain in both the back and leg. The radiation treatments were effective in significantly reducing or eliminating the tumor, which relieved the pressure, which in turn relieved the pain. I am probably back to about 90% of normal, with some residual pain and some weakness in my leg. I begin physical therapy in another week or so and hopefully that will take care of the last 10%.
Next week I go to Duke on Monday for a series of tests, that should complete all of the requirements for the clinical trial I am hoping to get into. I should know by mid week if I have been approved, which looks likely, and then we proceed on to treatment. My first treatment has been tentatively scheduled for March 4, and I am looking forward to getting started. It may sound odd that I am looking forward to starting chemotherapy, but this cancer isn't going to go away by itself. And the sooner we get the treatments started, the sooner it gets dealt with. Sitting and waiting is not one of my strong suits.
My mental outlook is quite good, although it is difficult to stay totally positive when there is a constant ache/pain in your back and leg. That is distracting. But I know that we have beaten this monster before and I fully intend to do it again. My determination, a world class medical team, your prayers, and the everpresent Hand of God combined to give me victory in my last battle, and this is just another bump in the road.
Saturday, February 22, 2014
Saturday, February 8, 2014
Another clinical trial
It has been about 5 months since we last made the hour-and-a-half drive to Duke, but we found our way to Dr. Beaven's office with no difficulties. It was good to see the sweet-natured lady who has quickly become such an important and beloved member of our family. We have the utmost confidence in Dr. Beaven, and feel that God has placed us exactly where we need to be as we continue this battle with the cancer that has invaded my body.
While there are several clinical trials available at this time, Dr. Beaven strongly recommended one that is targeted at Non Hodgkins Peripheral T-Cell Lymphoma patients who have been in remission, but recently were found to have relapsed and once again have the active disease. That describes me to a tee. I have applied to be accepted as a participant in this study, and will need a few more tests before acceptance can be granted, but we are confident that I will be accepted. Treatment should then begin in early March, at the Duke Cancer Center.
The study drug in this trial is called Alisertib (go ahead and pronounce that, I dare you). It is a new type of drug that has been developed to interfere with cellular division and growth in certain types of potentially cancerous cells. This is contrasted with more "conventional" chemotherapy drugs that simply kill all fast growing cells. It is also administered in pill form rather than IV infusion, which is the more normal method of treatment. If I am approved for the trial, I will be given either Alisertib, or another drug called Romidepsin. Dr. Beaven has recently worked with Romidepsin with good success but feels the Alisertib is equally appealing. Based on a random selection process in the clinical trial, 50% of the patients will be given Alisertib and the other 50% will receive Romidepsin. I should find out which group I am in within the next couple of weeks.
Regardless of the drug involved I will need to go to Duke for treatment once per week during the trial period. Theoretically this could go on for up to two years. More details will become available in the coming weeks, but at least we now have some idea of what lies ahead. Uncertainty can be difficult to deal with, but we are now starting to understand things more clearly.
Obviously we would prefer that I was still in remission, but that is not the reality of things. My monstrous disease has returned, which means we must fight it with every fiber of our being. And we thank God that we have access to the staff and facilities at Duke Cancer Center. The plan is beginning to unfold, and our family motto is still as applicable as ever: We're going to beat this!
While there are several clinical trials available at this time, Dr. Beaven strongly recommended one that is targeted at Non Hodgkins Peripheral T-Cell Lymphoma patients who have been in remission, but recently were found to have relapsed and once again have the active disease. That describes me to a tee. I have applied to be accepted as a participant in this study, and will need a few more tests before acceptance can be granted, but we are confident that I will be accepted. Treatment should then begin in early March, at the Duke Cancer Center.
The study drug in this trial is called Alisertib (go ahead and pronounce that, I dare you). It is a new type of drug that has been developed to interfere with cellular division and growth in certain types of potentially cancerous cells. This is contrasted with more "conventional" chemotherapy drugs that simply kill all fast growing cells. It is also administered in pill form rather than IV infusion, which is the more normal method of treatment. If I am approved for the trial, I will be given either Alisertib, or another drug called Romidepsin. Dr. Beaven has recently worked with Romidepsin with good success but feels the Alisertib is equally appealing. Based on a random selection process in the clinical trial, 50% of the patients will be given Alisertib and the other 50% will receive Romidepsin. I should find out which group I am in within the next couple of weeks.
Regardless of the drug involved I will need to go to Duke for treatment once per week during the trial period. Theoretically this could go on for up to two years. More details will become available in the coming weeks, but at least we now have some idea of what lies ahead. Uncertainty can be difficult to deal with, but we are now starting to understand things more clearly.
Obviously we would prefer that I was still in remission, but that is not the reality of things. My monstrous disease has returned, which means we must fight it with every fiber of our being. And we thank God that we have access to the staff and facilities at Duke Cancer Center. The plan is beginning to unfold, and our family motto is still as applicable as ever: We're going to beat this!
Sunday, February 2, 2014
I married an angel.
My last experience with Non Hodgkins T-Cell Lymphoma, which started about 18 months ago, involved almost no symptoms of the disease itself, and very minimal side effects from the chemotherapy treatments. The only real evidence that I had to deal with on an ongoing basis was fatigue. My mobility was very normal and my pain or discomfort was not an issue.
This time, however, things are very different. The primary disease location is a tumor on my spine, in my lower back, and the swelling from the tumor is exerting pressure on my spine and the nerves leading to my right leg. The result is extreme pain in my lower back and right leg, which has significantly impacted the movement and use of my leg. I quickly reached the point where my entire day was spent in bed, dreading the need to move at all (including trips to the bathroom), and relying on pain pills to achieve any level of comfort.
Fortunately, my daily radiation treatments quickly began to impact the tumor, reducing the swelling and in turn the pressure. Over the past two weeks I have progressed from being bedridden, to a situation where I am now able to move around without undo pain or discomfort using a cane, get a decent night's sleep, and can see that there is light at the end of the tunnel. The radiation treatments end next week and hopefully will have pretty much eliminated the tumor. Our visit to Dr. Beaven at Duke will determine the next treatment phase.
During all of this, moving around silently in the background has been a force of nature that is a combination of mind reader, army medic, weight lifter, master chef and Florence Nightingale lookalike. It is actually my wife Holly, assuming the many roles associated with being a care giver. It is not a burden that she went looking for, but rather one that was thrust upon her. She could quite easily find things to fill her day, other than getting me a glass of water, helping me pull on my socks each morning, and driving me to the hospital every day. All the while she is acting as my motivational cheerleader and fitness instructor.
I don't know what I would do without her by my side. She happily accepts whatever task arises, no matter the hour day or night. I am the one who gets all the cards in the mail. At church this morning I was the one that everyone came to see and inquire as to my status. Yet there she was, quietly assessing my stamina, and suggesting that maybe it would be wiser to return home rather than stay for Sunday school.
I am so very fortunate and so very blessed in so many ways. And right at the top of the list is the fact that I am married to an absolute angel.
This time, however, things are very different. The primary disease location is a tumor on my spine, in my lower back, and the swelling from the tumor is exerting pressure on my spine and the nerves leading to my right leg. The result is extreme pain in my lower back and right leg, which has significantly impacted the movement and use of my leg. I quickly reached the point where my entire day was spent in bed, dreading the need to move at all (including trips to the bathroom), and relying on pain pills to achieve any level of comfort.
Fortunately, my daily radiation treatments quickly began to impact the tumor, reducing the swelling and in turn the pressure. Over the past two weeks I have progressed from being bedridden, to a situation where I am now able to move around without undo pain or discomfort using a cane, get a decent night's sleep, and can see that there is light at the end of the tunnel. The radiation treatments end next week and hopefully will have pretty much eliminated the tumor. Our visit to Dr. Beaven at Duke will determine the next treatment phase.
During all of this, moving around silently in the background has been a force of nature that is a combination of mind reader, army medic, weight lifter, master chef and Florence Nightingale lookalike. It is actually my wife Holly, assuming the many roles associated with being a care giver. It is not a burden that she went looking for, but rather one that was thrust upon her. She could quite easily find things to fill her day, other than getting me a glass of water, helping me pull on my socks each morning, and driving me to the hospital every day. All the while she is acting as my motivational cheerleader and fitness instructor.
I don't know what I would do without her by my side. She happily accepts whatever task arises, no matter the hour day or night. I am the one who gets all the cards in the mail. At church this morning I was the one that everyone came to see and inquire as to my status. Yet there she was, quietly assessing my stamina, and suggesting that maybe it would be wiser to return home rather than stay for Sunday school.
I am so very fortunate and so very blessed in so many ways. And right at the top of the list is the fact that I am married to an absolute angel.
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