Monday, March 12, 2018
Heart Surgery in Houston
On March 1st, Lorrina and I traveled down to Houston to see Dr. Reardon at Houston Methodist Hospital in Texas. As many of you know, this was a very exciting and nerve racking appointment for us. We were excited, as strange as that sounds, because this appointment was a good sign the Dr. Reardon would be willing to perform surgery to go after the tumor behind my heart. However, we had no guarantee that was the case. I had a cardiac MRI that morning that definitely would make the case for doing the surgery or not. Right now there is not really another good option to treat this tumor. We are unable to radiate it further due to its location. I have failed almost every chemotherapy option available, and there is currently not an open clinical trial that makes sense to try. If Dr. Reardon would have said no, we would be left searching for a treatment option for a tumor that is already obstructing my heart and major blood vessels. Thankfully, Dr. Reardon is willing to perform the surgery and go after this tumor! We were incredibly relieved to say the least! We will be heading down later this month for surgery on March 29th. We are so grateful to my Oncologist at Roswell Park, Dr. Grand'Maison, who sent us to Dr. Reardon because she new there was a chance he could help us. If it were not for her, we may have never known this surgery was possible. There is not a surgeon near us that would be willing to do this surgery or is capable of doing this surgery that we are aware of.
Dr. Reardon is very hopeful this surgery will be successful, but there is always a chance that things look different when he opens me up and visualizes the tumor. If the tumor is invading the bottom part of my heart (the ventricles) or my esophagus, this would make things more difficult and possibly not removable. The MRI doesn't appear to show this, but it is always possible the scan is not 100% accurate. If the tumor is invading the top part of my heart (the atrium), this can actually be removed and replaced with artificial valves and transplanted tissue. Either way, we are grateful he is willing to take a shot at going after this tumor that right now, we don't have another option for.
Houston Methodist: Cardiac Autotransplant with Michael Reardon, MD from Houston Methodist on Vimeo.
This video is of Dr. Reardon explaining this type of surgery and why he started doing these type of procedures. He really is an incredible surgeon and it is very inspiring how he took on these cases to give patient's who have few options a chance.
If you aren't grossed out by surgery, you can watch a surgery similar to the one I will be having. I know it is not for everyone, but there are also a lot of nurses and students who have been reading this blog and I like to include as much educational stuff as I can. This patient has a different type of sarcoma than mine and her tumor has grown into the heart. Mine does not appear to have done this. However, the premise of the surgery is the same. Remove the heart to get to the target tumor.
In the meantime, all other treatment will be on hold. No more chemotherapy and proton therapy until after I recover from this surgery. Both of those treatments can put me at risk for infection or bleeding leading up to the surgery. The benefits of going after this tumor outweigh the risks of not treating the other tumors in my right lung right now. At some point, we will need to decided what the best option is to further attack those tumors and if removing my right lung is the best option for that as well, but right now we are happy the proton therapy has shrunk the large tumor and that hopefully it will remain stable enough to get us past this surgery.
I will be in Houston for about a month for this surgery, longer or shorter based on how I recover. We are planning for a two week hospital stay and about 1-2 weeks just staying in Houston for recovery and to be close by before flying home. I will have a lot of family there for the surgery which will be great and we have already made arrangements for a place to stay and travel. Being in Houston will be the biggest challenge for this surgery. Having had lung surgery in New York City was tough, but this is a much different trip. Obviously we can just jump in the car and drive down or back home whenever we want. The biggest challenge has been trying to plan for the recovery and keeping a family member down there with me until I get home, without knowing exactly when that will be. Thankfully, we have a great support system and so many people willing to come down and willing to watch our daughter. We would truly be lost without all of that support.
It has been difficult to wrap my head around this surgery because of all of the planning that has come with it in a relatively short period of time. I am not really scared of the surgery itself in regards to the pain and recovery. I have been through 7 lung surgeries now and those are supposed to be more painful and harder to recover from. The fact that my heart will be stopped and taken out of my body is admittedly a tough thing to wrap my head around. I have all the faith in the world in this doctor and know I don't have another choice, but knowing a heart lung machine will be keeping me alive and that my heart will be stopped is strange. The realty is, I don't have a choice. I will go into the surgery with all of the positive thought I possibly can, and be ready to fight and recover when I wake up. If my athletics career has taught me anything, it is you can't control everything. My coaches always told me you can't control the weather, you can't control the officials, you can control how you prepare and how you react to what happens. I have control over how I spend my time leading up to the surgery, so I will try to be in the best physical and mental shape I can be the day of the surgery. I have control of getting my family there to be with me, and I have control of how I work to recover from the surgery. What happens when I don't have control will happen, and I can't worry about that. That's how I am approaching this and hopefully we will come out with one less tumor!
Thanks as always for reading and following along. I appreciate all of the help, messages, and support from everyone! We are so grateful to all of you! I will update at least one more time prior to surgery.
Friday, February 16, 2018
Proton Therapy Progress, Chemo, and Possible New Adventure!
Hello everyone. A lot has been happening treatment wise since my last post. I will be starting my 3rd round of proton therapy on this particular tumor. We have been treating this large tumor in the right upper lobe of my lung since December with what is called quad shot proton therapy. Basically I go to New Jersey for this extremely precise type of radiation about every 4 weeks to get 4 treatments. I posted a whole blog about what proton therapy is previously if you are interested. So far, the tumor is responding well. The picture below shows the tumor volume in blue. This is the difference after 2 treatments. You can see this is and was a very large tumor. This was causing me all of those symptoms back in December when I was unable to get out of bed much. Today, my symptoms are much better and I can actually function through a whole day pretty normally. Being that compromised from this tumor was a first for me and honestly, very scary. It was debilitating not being able to do anything without coughing and being short of breath. I was tired all of the time. Thankfully we were able to get this treatment and find a way back.
This is not the only tumor I have. There are other smaller tumors along my right chest wall that cause some pain, but are not effecting organ function at this time. I also have a large tumor behind my heart. This is the trouble maker. We hit this tumor with proton therapy back in July and it did respond. However, because of it's location, we can't continue to radiate it. My esophagus was effected the first time and the risk of puncturing that along with my heart and the big blood vessels around it is to great. SO that leaves chemotherapy, surgery, and trials. I have failed every first, second, and third line chemo treatment available except one cocktail that we are trying now (Gemzar and docetaxel). This has not shown great results in synovial sarcomas but some cases have so we are adding it to try to both assist the proton therapy and control the tumor behind my heart. That tumor is very difficult because of it's location. It is behind my heart and pressing against my inferior vena cava which is the big vein that feed the heart from the lower body. This can cause a lot of problems as you could imagine. The big concern is my liver backing up from the impaired blood flow. They were considering placing a stent in the vein to keep it open, but that is not an option at this time. Instead I am on a low dose steroid that is helping keep the inflammation down which will alleviate some of the pressure from the tumor.
The good news is there is a surgeon in Houston, Texas that specializes in removing these types of tumors. He actually tends to see a lot of angiosarcomas which is a different disease pathology than mine. Angiosarcoma initially presents around the heart and can invade the heart tissue, making them almost un-treatable around the country. This particular surgeon has developed a technique to remove the heart in order to get to these tumors and then put the heart back in. Basically, he does a heart transplant with the patients own heart. I have no guarantee that he will operate on me but he has seen my case and is willing to meet with me to discuss the possibility. We don't have an appointment yet as we are going through all of the insurance approval stuff that goes along with seeing a surgeon in Texas. You can imagine that there are some hoops to jump through. While I feel fortunate enough to have insurance that will cover part of this, it is still mind boggling to me that someone in an insurance office will make the decision on weather or not they think I deserve to have this meeting with a doctor who could prolong my life simply because I live in a different state. If you truly think that our system currently allows decisions to be made between just patient and doctor, you are sorely mistaken. I also have some of the best insurance available thanks to my job, so I can not imagine what people who are not that fortunate must go through when these decisions need to be made. Just some food for thought. So hopefully we hear soon about our appointment so we can book our trip to Houston and see what happens.
For now, I will get round 3 of protons next week, followed by the next cycle of chemotherapy. Lorrina and Nalina will be joining me this time as Lorrina is off work. It will be nice to have the company and we will enjoy Somerset, NJ as much as we can for a few days! Our big mid winter vacation! We were trying to plan a few days to Florida to just get away that week, but our timing with treatment is never good. One day, we will sit on a beach sipping a drink, but it will have to wait for now.
I will keep you all posted on the next step. Thanks to everyone who continues to follow whats going on and for all the support, it means the world to us!
This is not the only tumor I have. There are other smaller tumors along my right chest wall that cause some pain, but are not effecting organ function at this time. I also have a large tumor behind my heart. This is the trouble maker. We hit this tumor with proton therapy back in July and it did respond. However, because of it's location, we can't continue to radiate it. My esophagus was effected the first time and the risk of puncturing that along with my heart and the big blood vessels around it is to great. SO that leaves chemotherapy, surgery, and trials. I have failed every first, second, and third line chemo treatment available except one cocktail that we are trying now (Gemzar and docetaxel). This has not shown great results in synovial sarcomas but some cases have so we are adding it to try to both assist the proton therapy and control the tumor behind my heart. That tumor is very difficult because of it's location. It is behind my heart and pressing against my inferior vena cava which is the big vein that feed the heart from the lower body. This can cause a lot of problems as you could imagine. The big concern is my liver backing up from the impaired blood flow. They were considering placing a stent in the vein to keep it open, but that is not an option at this time. Instead I am on a low dose steroid that is helping keep the inflammation down which will alleviate some of the pressure from the tumor.
The good news is there is a surgeon in Houston, Texas that specializes in removing these types of tumors. He actually tends to see a lot of angiosarcomas which is a different disease pathology than mine. Angiosarcoma initially presents around the heart and can invade the heart tissue, making them almost un-treatable around the country. This particular surgeon has developed a technique to remove the heart in order to get to these tumors and then put the heart back in. Basically, he does a heart transplant with the patients own heart. I have no guarantee that he will operate on me but he has seen my case and is willing to meet with me to discuss the possibility. We don't have an appointment yet as we are going through all of the insurance approval stuff that goes along with seeing a surgeon in Texas. You can imagine that there are some hoops to jump through. While I feel fortunate enough to have insurance that will cover part of this, it is still mind boggling to me that someone in an insurance office will make the decision on weather or not they think I deserve to have this meeting with a doctor who could prolong my life simply because I live in a different state. If you truly think that our system currently allows decisions to be made between just patient and doctor, you are sorely mistaken. I also have some of the best insurance available thanks to my job, so I can not imagine what people who are not that fortunate must go through when these decisions need to be made. Just some food for thought. So hopefully we hear soon about our appointment so we can book our trip to Houston and see what happens.
For now, I will get round 3 of protons next week, followed by the next cycle of chemotherapy. Lorrina and Nalina will be joining me this time as Lorrina is off work. It will be nice to have the company and we will enjoy Somerset, NJ as much as we can for a few days! Our big mid winter vacation! We were trying to plan a few days to Florida to just get away that week, but our timing with treatment is never good. One day, we will sit on a beach sipping a drink, but it will have to wait for now.
I will keep you all posted on the next step. Thanks to everyone who continues to follow whats going on and for all the support, it means the world to us!
Tuesday, January 2, 2018
Happy New Year!
Happy New Year to everyone. I hope you all had a great holiday season and are starting 2018 off well! It has been a couple months since I let everyone know what has been going on. Honestly, I just have not felt like writing about it. It has been a very hard couple of months making treatment decisions and traveling a lot to New York and New Jersey. The past few months have been without a doubt the the hardest I have faced through this journey.
The last time I updated, we were trying a chemo I have had several times before, ifosfamide. The hope was that doing this after proton therapy would help further shrink the tumor that was near my heart. The plan was to do 2 rounds and then see what the scan looked like. When we did the scan, there was some good news regarding the tumor near my heart. The proton therapy appeared to have killed a large portion of the tumor and it was much smaller. The bad news was there was a new very large mass in my right lung. This mass was about 12cm and taking up a lot of room. It was clear that the ifosfamide was probably not working. After this we attempted another chemotherapy which was given outpatient and I was referred back to the Proton Therapy team at MSK in New York. All of this happened almost simultaneously and at this time I started to become very sick. I struggled with side effects from the new chemotherapy they had given me and we had to travel to NYC that week. Needless to say it was a very difficult trip. We made it through like we always do. With the help of my wife and sister in law Sarah, we made it to NY. We stayed with our close friends in Queens who are always willing to open their house to us at a moments notice. After meeting with the team at MSK, they were confident that Proton Therapy would be beneficial and we would start ASAP. We headed to NJ that weekend to have the planning CT scan. The plan was to do what is called quad shock. High dose treatment twice a day for two days and then rest for a few weeks and treat again. I finished the first round of treatment in early December. I was extremely symptomatic at this point. I was not getting out of bed much because it was too hard to breath. My pain had become much worse and I was put on stronger pain medication then what I was already on, and I had a terrible cough that never stopped. Never in the 10 years that I have had this disease had I felt this symptomatic. It came on so suddenly and was very hard for me to deal with. I did not want to get out of bed and my appetite was almost non existent.
After coming home from NJ, my condition stayed the same for almost 3 weeks. Finally this past week, I have been feeling a bit better. My breathing is much better, although I have very little stamina and get short of breath easily, I can at least get out of bed and do some things around the house. My pain is under control for the most part and my cough is not as frequent. I am hoping these are all good signs about the treatment, but time will tell.
I went to NJ last week to have my second planning scan. Now we just wait to hear for a date to head down for the second round of treatment which should be within two weeks. Depending on how well this works and what the rest of my disease looks like, we are considering surgical options after proton therapy. The hope is that we can get the disease under control enough to be able to take a majority of it out surgically with less risk. We are also always looking at other clinical trials around the country that may be effective.
I will do my best to update periodically. Thank you all who follow along and constantly send you love and support. Happy New Year everyone!
The last time I updated, we were trying a chemo I have had several times before, ifosfamide. The hope was that doing this after proton therapy would help further shrink the tumor that was near my heart. The plan was to do 2 rounds and then see what the scan looked like. When we did the scan, there was some good news regarding the tumor near my heart. The proton therapy appeared to have killed a large portion of the tumor and it was much smaller. The bad news was there was a new very large mass in my right lung. This mass was about 12cm and taking up a lot of room. It was clear that the ifosfamide was probably not working. After this we attempted another chemotherapy which was given outpatient and I was referred back to the Proton Therapy team at MSK in New York. All of this happened almost simultaneously and at this time I started to become very sick. I struggled with side effects from the new chemotherapy they had given me and we had to travel to NYC that week. Needless to say it was a very difficult trip. We made it through like we always do. With the help of my wife and sister in law Sarah, we made it to NY. We stayed with our close friends in Queens who are always willing to open their house to us at a moments notice. After meeting with the team at MSK, they were confident that Proton Therapy would be beneficial and we would start ASAP. We headed to NJ that weekend to have the planning CT scan. The plan was to do what is called quad shock. High dose treatment twice a day for two days and then rest for a few weeks and treat again. I finished the first round of treatment in early December. I was extremely symptomatic at this point. I was not getting out of bed much because it was too hard to breath. My pain had become much worse and I was put on stronger pain medication then what I was already on, and I had a terrible cough that never stopped. Never in the 10 years that I have had this disease had I felt this symptomatic. It came on so suddenly and was very hard for me to deal with. I did not want to get out of bed and my appetite was almost non existent.
After coming home from NJ, my condition stayed the same for almost 3 weeks. Finally this past week, I have been feeling a bit better. My breathing is much better, although I have very little stamina and get short of breath easily, I can at least get out of bed and do some things around the house. My pain is under control for the most part and my cough is not as frequent. I am hoping these are all good signs about the treatment, but time will tell.
I went to NJ last week to have my second planning scan. Now we just wait to hear for a date to head down for the second round of treatment which should be within two weeks. Depending on how well this works and what the rest of my disease looks like, we are considering surgical options after proton therapy. The hope is that we can get the disease under control enough to be able to take a majority of it out surgically with less risk. We are also always looking at other clinical trials around the country that may be effective.
I will do my best to update periodically. Thank you all who follow along and constantly send you love and support. Happy New Year everyone!
Tuesday, November 7, 2017
More Chemo!
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.
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, 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.
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