It has been 7 days since my T-cell infusion, and I finally feel "back to normal." Day+1 to day+5 were some of the hardest days of my 9 year fight. I experienced all of the symptoms I had expected, but was not prepared for how bad they would be. I ran a 102-103 degree temp for about 3 days that never really broke. Every time I would sleep, I would hallucinate due to the fevers. The thought of food made me dry heave. It was like having the worst flu ever multiplied by 10. What was happening in my body was a massive release of cytokines. Cytokines are, in basic terms, proteins that help signaling between cells. In essence this large release of cytokines was causing all of these symptoms, as if I had a massive bacterial infection. To track the "level" of inflammation they measure my c-reactive protein, which is a non specific measure of inflammation in the body. This of course spiked at about day +3 and then slowly trended down. Because all of the symptoms look like an infection, blood cultures were drawn every 24 hours. One of the cultures came back positive for staph bacteria so I was started on 2 IV antibiotics. That positive culture looks to have likely been a contaminant so hopefully I can get off of those today!
I am very thankful that I had my wife here for the real hard part of this. I do not know how I would have made it through those days without her. This treatment and disease is incredibly hard on me, but it is 10 times harder on my family. I am thankful everyday for the immense support I have from my family and friends. We have friends that have selflessly given us gift cards and cash. Friends that have opened up their homes to us for weeks at a time at a moments notice so we didn't have to pay for hotels. Friends and family that go out of their way to come visit me just so I can see a familiar face. I do not know what I have done in life to deserve the support I have, but I could never in a million years thank you all enough!
Lastly, this week is nurses week, and I would be remised if I did not mention the amazing nurses taking care of me in this blog. As a Registered Nurse myself and a Certified Oncology Nurse, I am slightly biased in my views! I have been fortunate to be surrounded by a tremendous group of Oncology Nurses here at MSKCC. Their ranking of number 2 Cancer Center in the country shines through their nurses. As a nurse, I am a bad patient who is always paranoid and questioning my nursing care. Its the albatross all nurses have! During my stay, every one of my nurses has been knowledgeable about my treatment and have all been incredibly professional! My T-Cells were given to me by a Registered Nurse, Megan. She ran the show and made sure everything was done according to plan and she was prepared for any emergencies all the while keeping me and my wife relaxed and informed of everything that was happening. Again, I know I am bias, but nurses are truly amazing people who juggle so much responsibility with so much elegance. Be sure to shout out to all of your nurse friends this week, because they truly deserve it!
Monday, May 8, 2017
Monday, May 1, 2017
T Cell Infusion. Day 0!
Today is the day I have been waiting for for years. Through all of the delays and the complications, we made it to today. Getting to this day has been a battle that has raged for years. And in the end, it was an anticlimactic 2 hour infusion of some T-cells that only leads to more waiting, more questions, but most importantly more time. The cells are my Trojan Horse. Designed to identify my tumor for my immune system. The picture below shows a simplified look at the cellular level of how the T-Cell finds the cancer cell based on the tumor specific antigen it expresses. Now, for the next week or two, we will look for side effects from the transfusion, mainly cytokine release syndrome. This is basically a large immune response that can cause fevers, flu like symptoms, hypotension, and a host of other things that vary from patient to patient. These side effect are normal, but can vary in severity.
So today is a day to celebrate because I received a treatment that did not exist in April of 2008 when I was diagnosed. But today is also a day to reload for the next fight, because I will not rest until there is no fight left in me. And while I am optimistic that this treatment will help me, it may not be the cure. So if it is not I will find my next move to stay one step ahead.
From a patient perspective going through this clinical trial, I think it is important for me to say the I have never felt like a lab rat. I think the common misconception about clinical trials is that there is no goal to really treat you, but just to collect data from you weather you live or die. This could not be further from the truth. Lets break that thought process down. First, it takes an immense amount of work just to come up with a study objective and then to design said study so that it is approved by the IRB ( the board that reviews the study for ethics and safety). This does not even take into account finding the funding and staff needed to implement your study. Also, clinical trials are very selective about who they admit because they want their study to succeed, AKA you the participant have good outcomes compared to standard treatment. All of this is common sense now that you read it, but the stigma of clinical trials is alive and well. In my experience, I have felt no different as a patient going through this treatment vs. an established treatment. If anything, there is more positivity and excitement around me because everyone wants to see this new therapy work!
A final though for today:
If there is one thing I have learned in this process it is to never quit. Rage on and stay alive until the next thing comes along. Be smart and trust your gut. I have learned as much as possible related to my disease so that I can make educated decisions about my own life. While I know the doctors that treat me have a vast amount of knowledge, they do not know everything. I have never met a doctor who didn't want me to survive, but I never met a doctor who wanted me to survive as much as I did. I have made decisions that went against doctors opinions and I have pushed for treatment I was first told no to. Not because I disrespect doctors, but because I have the right to be an educated decision maker over my own life. That is how, with the help of brilliant doctors, nurses, and researchers I have survived twice as long as I should have at this point. That is why I have a wife and daughter to fight for; two things I was never guaranteed. For any nurses, doctors, or future healthcare workers reading this, please consider these words. Sometimes a patient may seem to challenge everything you say. Before getting upset and writhing that patient off as non compliant, take the extra time to find out what he/she knows and believes about their treatment. Then take the time to educate them properly so that they can be a contributing voice. Now I am a nurse who knows that there are some patients out there who will never get out of their own way, and don't care what we have to say as professionals. But for many, the roadblock my just be education and empowering the patient to have a voice in their own fight. People have asked me repeatedly here, are you glad you are a nurse? Are you glad you have that background knowledge? And I always say of course I am! Because I can contribute to my own treatment. We should feel bad that a majority of our patients are not healthcare literate and therefore handicapped in the process from day 1! That frustration and lack of knowledge breeds anger and conflict. Make it part of your job to teach and navigate from day 1 with your patients. If more patients are healthcare literate, we might just start having more people live a little longer and more willing to participate in clinical trials. So today is a day to celebrate because I received a treatment that did not exist in April of 2008 when I was diagnosed. But today is also a day to reload for the next fight, because I will not rest until there is no fight left in me. And while I am optimistic that this treatment will help me, it may not be the cure. So if it is not I will find my next move (which I may have already found), to stay one step ahead.
From a patient perspective going through this clinical trial, I think it is important for me to say the I have never felt like a lab rat. I think the common misconception about clinical trials is that there is no goal to really treat you, but just to collect data from you weather you live or die. This could not be further from the truth. Lets break that thought process down. First, it takes an immense amount of work just to come up with a study objective and then to design said study so that it is approved by the IRB ( the board that reviews the study for ethics and safety). This does not even take into account finding the funding and staff needed to implement your study. Also, clinical trials are very selective about who they admit because they want their study to succeed, AKA you the participant have good outcomes compared to standard treatment. All of this is common sense now that you read it, but the stigma of clinical trials is alive and well. In my experience, I have felt no different as a patient going through this treatment vs. an established treatment. If anything, there is more positivity and excitement around me because everyone wants to see this new therapy work!
A final though for today:
If there is one thing I have learned in this process it is to never quit. Rage on and stay alive until the next thing comes along. Be smart and trust your gut. I have learned as much as possible related to my disease so that I can make educated decisions about my own life. While I know the doctors that treat me have a vast amount of knowledge, they do not know everything. I have never met a doctor who didn't want me to survive, but I never met a doctor who wanted me to survive as much as I did. I have made decisions that went against doctors opinions and I have pushed for treatment I was first told no to. Not because I disrespect doctors, but because I have the right to be an educated decision maker over my own life. That is how, with the help of brilliant doctors, nurses, and researchers I have survived twice as long as I should have at this point. That is why I have a wife and daughter to fight for; two things I was never guaranteed. For any nurses, doctors, or future healthcare workers reading this, please consider these words. Sometimes a patient may seem to challenge everything you say. Before getting upset and writhing that patient off as non compliant, take the extra time to find out what he/she knows and believes about their treatment. Then take the time to educate them properly so that they can be a contributing voice. Now I am a nurse who knows that there are some patients out there who will never get out of their own way, and don't care what we have to say as professionals. But for many, the roadblock my just be education and empowering the patient to have a voice in their own fight. People have asked me repeatedly here, are you glad you are a nurse? Are you glad you have that background knowledge? And I always say of course I am! Because I can contribute to my own treatment. We should feel bad that a majority of our patients are not healthcare literate and therefore handicapped in the process from day 1! That frustration and lack of knowledge breeds anger and conflict. Make it part of your job to teach and navigate from day 1 with your patients. If more patients are healthcare literate, we might just start having more people live a little longer and more willing to participate in clinical trials. So today is a day to celebrate because I received a treatment that did not exist in April of 2008 when I was diagnosed. But today is also a day to reload for the next fight, because I will not rest until there is no fight left in me. And while I am optimistic that this treatment will help me, it may not be the cure. So if it is not I will find my next move (which I may have already found), to stay one step ahead.
Saturday, April 29, 2017
Blog Post 4/29/17
Hello everyone,
Was not able to do a video this time so I am writing this post. It has been a very rough and unexpected few days here in NYC. The trial started as scheduled on Monday. I received 2 chemotherapy agents, fludarabine and cyclophophamide, on Mon, Tues, and Wed.. The purpose of these drugs is two fold. Their main purpose is to prep my body for the T-cell transfusion that will occur Monday 5/1/17. These drugs rid my body of immunosuppressive cells that may inhibit the T-cells actions. Secondly, there is some cytotoxic effects of the chemo on the tumor, meaning it may kill some of the tumor. However this is not the main purpose and is hard to say how much it will effect the tumor load. Chemotherapy went very well until early Wednesday morning. I began to have some nausea and retching. During one of the bouts of retching, I felt something very painful in my right shoulder. This pain soon became excruciating 10/10 pain and no one was sure why. After hours of trying to throw pain medications at it, I was able to get comfortable on a PCA of Fentanyl at a significant dose. The pain was radiating from my right ribs/abdomen to right arm and neck. I was not able to lay flat of on my side without very bad pain. They performed several tests including ultrasounds of my liver and right extremity. Those were negative. But a CT of my chest, abdomen, and pelvis showed I may have a small bleed around the liver. So I likely ruptured something while retching! Ridiculous! This result, along with my dropping hemoglobin led them to transfuse me 2 units of red blood cells as I type now. So thank you to the generous soul who donated blood and is saving my butt today! YOU ROCK! I had another scan tonight to check on the bleed and to get a closer look, a CT Angio of the chest abdomen and pelvis. No results on that yet. My pain is significantly better and I am coming down off of the fentanyl slowly. This crazy "side effect" of what was really a series of unfortunate events, should not delay my t-cell infusion. Worst case scenario they would do a small procedure to stop the bleeding through interventional radiology. They would basically go through a blood vessel and embolize the bleed but that has not been decided yet. It sounds like it wont be needed right now so lets hope for that!
In more positive news, my wife has been here since Wednesday. She showed up at exactly the right time to get me through all of this. Hopefully I will be bouncing back to normal before she leaves and we can have a successful day Monday!
Sorry for the written update, it is difficult to find enough time alone to record sometimes and I have a roommate I need to be respectful of as well. Thanks for all the well wishes, thoughts, and prayers! Will update soon!
Clinical Trial Page : For those of you who wanted more detailed information on my trial.
Was not able to do a video this time so I am writing this post. It has been a very rough and unexpected few days here in NYC. The trial started as scheduled on Monday. I received 2 chemotherapy agents, fludarabine and cyclophophamide, on Mon, Tues, and Wed.. The purpose of these drugs is two fold. Their main purpose is to prep my body for the T-cell transfusion that will occur Monday 5/1/17. These drugs rid my body of immunosuppressive cells that may inhibit the T-cells actions. Secondly, there is some cytotoxic effects of the chemo on the tumor, meaning it may kill some of the tumor. However this is not the main purpose and is hard to say how much it will effect the tumor load. Chemotherapy went very well until early Wednesday morning. I began to have some nausea and retching. During one of the bouts of retching, I felt something very painful in my right shoulder. This pain soon became excruciating 10/10 pain and no one was sure why. After hours of trying to throw pain medications at it, I was able to get comfortable on a PCA of Fentanyl at a significant dose. The pain was radiating from my right ribs/abdomen to right arm and neck. I was not able to lay flat of on my side without very bad pain. They performed several tests including ultrasounds of my liver and right extremity. Those were negative. But a CT of my chest, abdomen, and pelvis showed I may have a small bleed around the liver. So I likely ruptured something while retching! Ridiculous! This result, along with my dropping hemoglobin led them to transfuse me 2 units of red blood cells as I type now. So thank you to the generous soul who donated blood and is saving my butt today! YOU ROCK! I had another scan tonight to check on the bleed and to get a closer look, a CT Angio of the chest abdomen and pelvis. No results on that yet. My pain is significantly better and I am coming down off of the fentanyl slowly. This crazy "side effect" of what was really a series of unfortunate events, should not delay my t-cell infusion. Worst case scenario they would do a small procedure to stop the bleeding through interventional radiology. They would basically go through a blood vessel and embolize the bleed but that has not been decided yet. It sounds like it wont be needed right now so lets hope for that!
In more positive news, my wife has been here since Wednesday. She showed up at exactly the right time to get me through all of this. Hopefully I will be bouncing back to normal before she leaves and we can have a successful day Monday!
Sorry for the written update, it is difficult to find enough time alone to record sometimes and I have a roommate I need to be respectful of as well. Thanks for all the well wishes, thoughts, and prayers! Will update soon!
Clinical Trial Page : For those of you who wanted more detailed information on my trial.
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