My last update was all the way back in early September when I was sitting in the hospital the day before my birthday. At that time, I had just finished a round of chemotherapy (Doxarubicin and Lartruvo) and my blood counts plummeted and I wound up in the hospital with a neutropenic fever. Since then, the treatment plan has changed several times. To say it has been a frustrating couple of months would be an understatement!
Around the time of my last update, we were exploring the possibility of entering another clinical trial at Roswell Park in Buffalo. They had just started a T-Cell trial, basically the same trial I was in at MSK in New York. However, the researchers here in Buffalo had found a way to manipulate the cells to avoid a specific tumor defense mechanism. This may allow the T-cells to work better and longer. Last time I updated we were doing chemotherapy until we knew if it would be possible for me to enroll in this trial. Well, by early October it looked as if everything was a go and I was set to have my cells taken out (apheresis) and start the trial 6 days later. Unfortunately, a day before I was scheduled for apheresis, I was told I was excluded from the trial. To be excluded from a clinical trial is usually a very concrete reason. Every trial has inclusion and exclusion criteria written in the research protocol. However, I was being excluded from this trial without a concrete reason which made this all the more frustrating. To make a long story short, it was back to the drawing board. At this time, I had been without any treatment for about 5-6 weeks because we had thought I would be in the trial and I could not have chemo for a time period before it started. When I was excluded, that delay in treatment ended up being for nothing and my disease was progressing. My doctors here in Buffalo and at Memorial Sloan Kettering decided it would be the best route to do a couple rounds of high dose Ifosfamide. I have had this chemotherapy in the past and had some good results with it. The downside of this chemo is that it requires me to be in the hospital for 6 days. 6 days is a long, tedious time to just sit and be poisoned.
To make this all a bit more crazy, my doctor has also reached out to a surgeon at MD Anderson in Houston, TX. We had reached out to him to see if surgery, especially for the tumor behind my heart, might be an option if needed. He has not ruled out that possibility but at the time, wanted us to continue with the T-cell trial first to see if we could achieve some shrinkage first. Obviously, we are not doing the T-cell trial anymore, but the plan with chemo is the same. Hopefully, achieve some shrinkage and then explore the possibility of surgery. This would be a big open heart surgery and it would be the 8th surgery on my chest cavity. The surgeon definitely wants to make sure we can do whatever we can with systemic treatment first that may help make the surgery more successful.
I finished round one of chemo on October 16th and started round 2 yesterday, Nov. 10th. After this round we will do a CT scan and see what everything looks like.
This has definitely been a difficult 2 months with a lot of decision making, some disappointments, and some hope of new options as well with the possibility of surgery back on the table. Through all of it, we are trying to live as normal a life we can. Lorrina is doing well in her new job and we are spending as much time as possible with are daughter Nalina who will be one on Nov. 22nd! I can't believe it has already been a year. It seems like yesterday we were bringing her home and hovering over her every move. She is truly the love of our lives and has been the greatest miracle baby anyone could ever ask for! I have unfortunately not been able to return to work and it is very hard for me to watch the baby all day by myself, especially in the mornings when my pain tends to be the worst, so she spends part of the day with my wife's grandmother who we are so lucky to have. Plus she stays away from daycare and all of the germs that come with it.
Thank you all again for following along and for all your thoughts, prayers, and messages. Your support means more than I could ever express! Lorrina and I are so grateful for the support we have. Hopefully I can avoid anymore emergency visits to the hospital and I will try to update the next time we have some news about the plan.
Tuesday, November 7, 2017
Tuesday, September 5, 2017
An Overdue Update
It has been a long time since I last posted. A lot has happened since finishing Proton Therapy on August 4th. During this time I have started a new chemo regimen and been admitted to the hospital twice for complications. So you know, not much going on! About 2 weeks after completing Proton Therapy, I began having pain when I was eating. It felt like I was swallowing razor blades in my esophagus and stomach. If you have been following along, you know that the tumor that was being treated with the Proton Therapy was pressed up against my esophagus and heart. Shortly after the pain began, I started to have some bleeding. That was the signal to head into the hospital. They performed an upper endoscopy and saw a large ulcer towards the bottom of my esophagus. Basically my esophagus was collateral damage from the proton therapy. Thankfully, the bleeding stopped shortly after. I was eating soft foods and liquids for about a week before I was back to normal foods. I recovered from this much quicker than I expected. This was very scary because I knew this had the potential to get very bad. A tear in the esophagus would have led to major surgery and strictures could have caused chronic issues with eating and swallowing. Thankfully we have escaped with just a bleeding ulcer that healed quickly.
Once I healed from this, we quickly pushed to start the next step of treatment. My doctors in Buffalo and NY discussed my case and gave me a couple options. We chose to try a chemotherapy regimen that I have not done yet with the hope we will see some better results compared to the regimens I have already tried. This regimen includes doxorubicin, a first line drug that I have had before, and olaratumab, a drug the gained fast track approval last year for sarcomas. Olaratumab is a monoclonal antibody. These are lab produced molecules that mimic the body's immune system to help kill cancer cells in several different ways, depending on what the molecule targets. Olaratumab blocks a certain receptor on the cancer cell to inhibit tumor growth. Doxarubicin is a chemotherapy that has a lifetime limit on the dose I can receive because it is very taxing on the heart. Thankfully I haven't reached that limit yet and there is another drug I am given that helps protect my heart as well. I had my first dose of these drugs on 8/25 and was scheduled for the second dose on 9/1. However, my absolute neutrophil count (ANC) was too low to receive the dose. These drugs cause myelosuppression, especially neutropenia. Myelosuppression is when your bone marrow activity is decreased causing your blood counts to fall. This includes your red blood cells, white blood cells, and platelets. One of the most important types of white blood cells are neutrophils. These little guys are our first line of defense against bacterial infections. When these drop below a certain level, the patient is considered neutropenic and a very high risk for infection. A small infection a normal person would probably never even know they have, can be deadly if left untreated in a neutropenic patient.
So we held the dose on 9/1 and then on Sunday 9/3, I spiked a fever of 100.8. This led to my second admission this month. My white blood cell count had dropped to 0.23 which is very low and I did not have an ANC. My platelets also dropped down to 23 which led to me getting a platelet transfusion Monday. Shout out to whoever donated those platelets! This is the point where I tell everyone to go donate blood and platelets, especially at Roswell if you can because all donations are used here.
Anyways, I have been feeling a bit better today, just very tired. I am still admitted waiting for my counts to come up. I am taking a growth factor injection everyday to help boost my neutrophils, but so far they have not wanted to grow!
Tomorrow is my 30th birthday. I am hoping that my bone marrow will give me a gift tonight and allow me to get out of here tomorrow! If not, I will just have to be patient. I can't believe I am turning 30. It certainly snuck up on me. I know some people get depressed about turning 30, and I certainly would love to be 25 again! However, as I look back on my 20's and all that they were filled with, I am very proud. Lately, I have struggled with staying positive and to say that I have had some bouts of depression would be an understatement. But as I look back on everything, I know I have accomplished a lot the past ten years while battling this disease. I accomplished every goal I set for myself, married my beautiful wife, and made a beautiful daughter who is the world to me. This disease has taken a lot from me, but I am trying to focus on all the good I have in this life. Sometimes it gets hard and it gets dark, but I have a lot of light left to keep fighting for.
So bring it on 30! The statistics said I wouldn't see 25, lets go see what 40 is like!
Thank you all for following along, I'll try to update when we resume treatment. Also, thank you again to those who donated to us even this past week. We continue to be so lucky to have the support of so many good and caring people. I want to thank all of my former co-workers that are taking care of me this week. I usually stay on my old unit when I am admitted and I'm lucky to have such great nurses, who are also my friends, take care of me.
Once I healed from this, we quickly pushed to start the next step of treatment. My doctors in Buffalo and NY discussed my case and gave me a couple options. We chose to try a chemotherapy regimen that I have not done yet with the hope we will see some better results compared to the regimens I have already tried. This regimen includes doxorubicin, a first line drug that I have had before, and olaratumab, a drug the gained fast track approval last year for sarcomas. Olaratumab is a monoclonal antibody. These are lab produced molecules that mimic the body's immune system to help kill cancer cells in several different ways, depending on what the molecule targets. Olaratumab blocks a certain receptor on the cancer cell to inhibit tumor growth. Doxarubicin is a chemotherapy that has a lifetime limit on the dose I can receive because it is very taxing on the heart. Thankfully I haven't reached that limit yet and there is another drug I am given that helps protect my heart as well. I had my first dose of these drugs on 8/25 and was scheduled for the second dose on 9/1. However, my absolute neutrophil count (ANC) was too low to receive the dose. These drugs cause myelosuppression, especially neutropenia. Myelosuppression is when your bone marrow activity is decreased causing your blood counts to fall. This includes your red blood cells, white blood cells, and platelets. One of the most important types of white blood cells are neutrophils. These little guys are our first line of defense against bacterial infections. When these drop below a certain level, the patient is considered neutropenic and a very high risk for infection. A small infection a normal person would probably never even know they have, can be deadly if left untreated in a neutropenic patient.
So we held the dose on 9/1 and then on Sunday 9/3, I spiked a fever of 100.8. This led to my second admission this month. My white blood cell count had dropped to 0.23 which is very low and I did not have an ANC. My platelets also dropped down to 23 which led to me getting a platelet transfusion Monday. Shout out to whoever donated those platelets! This is the point where I tell everyone to go donate blood and platelets, especially at Roswell if you can because all donations are used here.
Anyways, I have been feeling a bit better today, just very tired. I am still admitted waiting for my counts to come up. I am taking a growth factor injection everyday to help boost my neutrophils, but so far they have not wanted to grow!
Tomorrow is my 30th birthday. I am hoping that my bone marrow will give me a gift tonight and allow me to get out of here tomorrow! If not, I will just have to be patient. I can't believe I am turning 30. It certainly snuck up on me. I know some people get depressed about turning 30, and I certainly would love to be 25 again! However, as I look back on my 20's and all that they were filled with, I am very proud. Lately, I have struggled with staying positive and to say that I have had some bouts of depression would be an understatement. But as I look back on everything, I know I have accomplished a lot the past ten years while battling this disease. I accomplished every goal I set for myself, married my beautiful wife, and made a beautiful daughter who is the world to me. This disease has taken a lot from me, but I am trying to focus on all the good I have in this life. Sometimes it gets hard and it gets dark, but I have a lot of light left to keep fighting for.
So bring it on 30! The statistics said I wouldn't see 25, lets go see what 40 is like!
Thank you all for following along, I'll try to update when we resume treatment. Also, thank you again to those who donated to us even this past week. We continue to be so lucky to have the support of so many good and caring people. I want to thank all of my former co-workers that are taking care of me this week. I usually stay on my old unit when I am admitted and I'm lucky to have such great nurses, who are also my friends, take care of me.
Tuesday, August 1, 2017
Proton Therapy
I started Proton Therapy yesterday down in Somerset, NJ. The original treatment plan was changed late last week. I was originally going to be treated daily over 6-8 weeks, which would have kept me down in NJ the entire time. Thankfully, the team decided to change their approach and are now going to do 5 high dose treatments this week. This means I will get to go home on Friday as long as everything goes well through this week. This was great news! I have been away from home since last Thursday, as I had follow up appointments in Manhattan on Friday. Five days away from home, and I am already missing my family like crazy. Eight weeks would definitely be tough.
Part of the reason they decided to change my treatment plan was because we are only treating one tumor with this therapy. This tumor is larger (about 7cm) and is in my mediastinum, or the cavity around my heart. The problem is that I still have several other tumors in my right lung cavity. These tumors seem to be stable right now, but doing proton therapy for 6-8 weeks would limit our ability to also do other systemic treatments to help treat those tumors as well. The hope is that we get a good response from proton therapy on this larger tumor and then move on to some other systemic treatment. This may be some chemotherapy that I would be able to receive back home. We have also discussed the possibility of entering another clinical trial down at MSK that would involve using two monoclonal antibody drugs. We have not decided which course to take yet. A lot will depend on how well I respond to the proton therapy and what my surveillance CT scans look like going forward. I will have another CT scan tomorrow to see what the rest of my disease status looks like. This scan will be about 90 days from my T-cell infusion.
So far, treatment has been uneventful, which is good! I finished day 2 of 5 today. I am having a little fatigue and a raspy voice tonight, but otherwise don't notice a thing. Treatment is painless while it is happening. The picture above describes how the proton beam works. It is quite amazing knowing that all of this equipment and technology is behind this little nozzle that I see in the treatment room. This is the third time I have had radiation treatment of any kind. Once on my left foot and previously in about the same spot they are hitting now. I had some complications with radiation on my chest the last time, developing fluid around my lung that I needed to have drained several times. I am obviously hoping that the specificity of the proton therapy helps us avoid some of these complications. My esophagus is probably my biggest concern. Any damage to my esophagus can cause a lot of problems including bleeding, strictures, or tears. I was luck to avoid those issues last time and hope that continues! Not having my wife here with me to tell me I need to go to the hospital, I need to tell myself to be extra vigilant! So far the hardest part of this has been being away from home and my family. I miss them very much. Facetime with my daughter just is not the same as being there. Thankfully, 8 days will be better than 6-8 weeks!
I want to say thank you again to every single person that donated to us over the past week. I was so moved by the outpouring of support. We received support from people we do not even know. I don't know what I have done in my life to deserve the support I have. I hope you all know how grateful we are to have your support. We raised more than double our goal of $6000, which was based on the cost of this treatment and to pay for some of the anticipated 6 week stay. Since treatment was shortened to one week, I was able to pay for this treatment and all travel expenses. All of the money left over will be saved for future treatments and travel to NYC. I am also incredibly grateful to those at Roswell Park Cancer Institute where I work. Your support during my absences has been incredible. Whether you have donated time off to me, sent me an email of encouragement, or covered my clinics while I was away from treatment,I can't thank you enough!
I will try to update in a couple days depending on how things go. Hopefully it can be a short uneventful update if all goes well. Thanks again for following along and for all of your support.
Tuesday, July 25, 2017
The Next Chapter of Treatment
It has been a long time since I have updated on here. In part because I was just not sure what to say. The last time I gave an update was just over Facebook saying that things looked to be going great! At my 30 day checkup, I had an incredible response to the T-cell therapy. All tumors were shrinking and one of the target tumors was completely gone. This was some of the best news we had ever received following any treatment. Despite the news being so good, we have learned to always be cautiously optimistic. I am very realistic about my disease, and while I am always hopeful to find a "cure", I know that it is more realistic to treat my disease as chronic, and something that I will likely be fighting forever. What we were hopeful for was some reprieve. An escape to normalcy for a longer period of time. But, that is not in the cards quite yet.
We found out at my 60 day scan that I was now having a mixed response to treatment. Some of my tumors are continuing to shrink, some are stable, and some are growing. Unfortunately, one of the tumors that is growing is located directly behind my heart. It is actually tucked between my heart, esophagus, spinal column and inferior vena cava. These are all pretty vital structures! I didn't know how to feel after this. I was of course upset that this one tumor that isn't responding is in a terrible spot, but I also knew we had made a lot of progress with the rest of my disease. I was angry but still hopeful that we were on the right track. I just knew that we were not getting the reprieve we had been waiting for.
The next step will be proton therapy. Proton therapy is a type of radiation therapy that is extremely accurate. It can limit the exposure of healthy tissue and the beam does not exit the tumor. Unfortunately this treatment is only offered in a few places around the country. Memorial Sloan Kettering works with a place in Somerset, NJ which will be where I will receive treatment. I will need to stay in NJ for approximately 5 weeks starting on July 31st. My insurance does not completely cover this treatment and I will need to provide my own lodging for my entire length of treatment. For these reasons, we have set up a youcaring page for anyone that would like to help with the cost of this treatment. It is extremely hard for me to ask for this type of help, but this is a difficult expense for anyone to take on. If you would like to donate to my care please go to:
https://www.youcaring.com/jacobmadonia-886389?utm_campaign=buttonshare&utm_medium=url&utm_source=copy&utm_content=cf_cp_01
I will be heading down to NYC this week to follow up at Memorial Sloan Kettering and then I will be driving down to New Jersey to start treatment on Monday July 31st. I will do my best to post some periodic updates on how treatment is going. As always thanks for reading and following my journey. I appreciate all of the love and support from all of you.
We found out at my 60 day scan that I was now having a mixed response to treatment. Some of my tumors are continuing to shrink, some are stable, and some are growing. Unfortunately, one of the tumors that is growing is located directly behind my heart. It is actually tucked between my heart, esophagus, spinal column and inferior vena cava. These are all pretty vital structures! I didn't know how to feel after this. I was of course upset that this one tumor that isn't responding is in a terrible spot, but I also knew we had made a lot of progress with the rest of my disease. I was angry but still hopeful that we were on the right track. I just knew that we were not getting the reprieve we had been waiting for.
The next step will be proton therapy. Proton therapy is a type of radiation therapy that is extremely accurate. It can limit the exposure of healthy tissue and the beam does not exit the tumor. Unfortunately this treatment is only offered in a few places around the country. Memorial Sloan Kettering works with a place in Somerset, NJ which will be where I will receive treatment. I will need to stay in NJ for approximately 5 weeks starting on July 31st. My insurance does not completely cover this treatment and I will need to provide my own lodging for my entire length of treatment. For these reasons, we have set up a youcaring page for anyone that would like to help with the cost of this treatment. It is extremely hard for me to ask for this type of help, but this is a difficult expense for anyone to take on. If you would like to donate to my care please go to:
https://www.youcaring.com/jacobmadonia-886389?utm_campaign=buttonshare&utm_medium=url&utm_source=copy&utm_content=cf_cp_01
I will be heading down to NYC this week to follow up at Memorial Sloan Kettering and then I will be driving down to New Jersey to start treatment on Monday July 31st. I will do my best to post some periodic updates on how treatment is going. As always thanks for reading and following my journey. I appreciate all of the love and support from all of you.
Monday, May 8, 2017
The First 7 Days
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!
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 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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