FATE Trial- Help Tomo, Patti & Finn
Donation protected
As many of you know, because you're all my friends (even though some of us have never met! Yet!?!?) February 12th, 2016. A day which would change my life forever. I was diagnosed with an extremely rare and deadly Ocular Melanoma. My oncologist recommended some clinical trials. We began with Opdivo (Nivolumab). That seemed to slow the melanoma down, but not very much. He then added Yervoy (Ipilimumab) to the trial. That combination was more aggressive and showed that the melanoma was not growing, but was getting smaller.
I ended up having a reaction and had to stop taking it.
I had the tumor, right eye, bone, surrounding tissue and brain Dura matter removed in a 14 hour surgery by the World Class surgeons at the University of Minnesota.
After the surgery was completed, we were told that the surgeons were unable to achieve "Zero Margins", due to where the melanoma was and how much it had spread.
They next tried Keytruda (pembrolizumab). After a few infusions I had to stop because it seemed to not only going after the melanoma, but my liver. These clinical trial "Immunotherapy" drugs work by amping up your immune system. They activate "T" Cells in your body, the seek out proteins which melanoma emits to disguise itself as healthy tissue & makes the T Cells attack the cancer. like with any medications, there can be side effects. Nausea, vomiting, lethargy, confusion, memory loss,,,,, the lists go on and on. I had some of these side effects. Some were not very much fun, I was sick for a long time, but I was fighting my nemesis, melanoma on the cellular level.
Since the surgery I have been receiving CT, MRI and PET scans on a regular basis. There were several troubling areas which they were concerned about. My left Femur, last December Dr. "E.M." ( Lets call him Jedi Master Yoda),found a small area lit up in the left femur showing a small growth. My CT scan in June showed that the tumor had taken over a large area of the marrow cavity. He ordered a biopsy on the femur. It was CT guided, they inserted a large needle into my leg I was awake the whole time!) and then drilled into the bone. Several samples were obtained. A week later, Patti and I were enjoying lunch when I got a message from Fairview My Chart. We opened it.
FINAL DIAGNOSIS:Bone, left femur, biopsy:- Metastatic melanoma. It felt like a kick in the chest, I couldn't breathe. We thought we were ready, no, we weren't.
I guess We're still in shock, we just found out that my nemesis has taken a hold of me again. I plan to fight back, as do my team at the U of M.
That is the bad news. The good news is that I qualify for several clinical trials. The first is the "FATE Trial". I have asked my children and my sister if they would donate some blood to find my closest DNA match . The doctors will test the blood samples for the best 50% DNA match with me. It has to come from a child or sibling.
The Clinical Trial itself is paid for by the sponsor which is the American Cancer Society, the cost of medicine's that I would be put on for three years would be at a cost of around $10,000.00 a month and the DNA testing is around $5,000.00
Once the match is found, the prepared NK cells will then be infused into me. Then they will give me sub-q IL-2. The hope is that the 50% DNA match mixture would seek out the proteins that melanoma puts out that say they belong there. They attack them, hopefully killing them, maybe putting it in to remission. I have everything to live for, my wife, family, children and little grandchildren whom I love very much, I have so many other reasons..to fight on, I love my band of brothers in Broken Glass, there are many gigs and jams to play (several are benefits for Veteran's groups and Cancer benefits, I want to give back as long as I can!).....fighting this is my only choice. My hilarious dog Finnegan and I are buddies, I plan to be throwing that big pink football for a long time!!
I have everything to gain by volunteering for this clinical trial or any other that I qualify for. Otherwise I would certainly die. This melanoma wants to win this fight, but with the help from my team at the U of M, my family and friends, We are going to try and stop it!!!
We are beginning this GoFundMe account to help my wife Patti and I cover the incredible cost of testing required as well as the medications that are necessary for me to fight this disease.
First, I have a DNA test called Foundation 1. This test will process my DNA, then they can match it with the best donor for a 50% match. Crizotinib is the drug that I will be given. The clinical trial lasts 3 years. I will be given Crizotinib to assist the process of killing this cancer. The DNA testing is around $5000.00. This testing is not optional, the testing I had done last year will not work, it gives the doctors what they need to find the 50% match so they can begin the process. I will be on Crizotinib for up to 3 years, it costs around $10,000.00 per month for the pills. The U of M is one of two hospitals in the country where this clinical trial is done. I am very lucky to have an Oncologist who has been chosen to utilize this trial so hopefully I can live longer. We have been fighting this for over 3 years, and will continue to fight. We are tired, but battle hardened, ready for the next assault!
I want to be able to spend time with my family. Take my young grand kids to the park or the mall of America (maybe even Disney World!), Visit my parents and sister, have backyard bar-be-qu's so we can laugh, play guitars & have a fire. My dog, Finnigan wants to have time to play, go swimming or fishing. If I could have time to do this, I will need help to cover the medical costs.
I want to thank you all so much! Any donations will give us hope, and that's all I need to keep going, hope. Hope will guide us and help us, faith will give us courage, your donations could help save a life... it would be everything to us all.
I ended up having a reaction and had to stop taking it.
I had the tumor, right eye, bone, surrounding tissue and brain Dura matter removed in a 14 hour surgery by the World Class surgeons at the University of Minnesota.
After the surgery was completed, we were told that the surgeons were unable to achieve "Zero Margins", due to where the melanoma was and how much it had spread.
They next tried Keytruda (pembrolizumab). After a few infusions I had to stop because it seemed to not only going after the melanoma, but my liver. These clinical trial "Immunotherapy" drugs work by amping up your immune system. They activate "T" Cells in your body, the seek out proteins which melanoma emits to disguise itself as healthy tissue & makes the T Cells attack the cancer. like with any medications, there can be side effects. Nausea, vomiting, lethargy, confusion, memory loss,,,,, the lists go on and on. I had some of these side effects. Some were not very much fun, I was sick for a long time, but I was fighting my nemesis, melanoma on the cellular level.
Since the surgery I have been receiving CT, MRI and PET scans on a regular basis. There were several troubling areas which they were concerned about. My left Femur, last December Dr. "E.M." ( Lets call him Jedi Master Yoda),found a small area lit up in the left femur showing a small growth. My CT scan in June showed that the tumor had taken over a large area of the marrow cavity. He ordered a biopsy on the femur. It was CT guided, they inserted a large needle into my leg I was awake the whole time!) and then drilled into the bone. Several samples were obtained. A week later, Patti and I were enjoying lunch when I got a message from Fairview My Chart. We opened it.
FINAL DIAGNOSIS:Bone, left femur, biopsy:- Metastatic melanoma. It felt like a kick in the chest, I couldn't breathe. We thought we were ready, no, we weren't.
I guess We're still in shock, we just found out that my nemesis has taken a hold of me again. I plan to fight back, as do my team at the U of M.
That is the bad news. The good news is that I qualify for several clinical trials. The first is the "FATE Trial". I have asked my children and my sister if they would donate some blood to find my closest DNA match . The doctors will test the blood samples for the best 50% DNA match with me. It has to come from a child or sibling.
The Clinical Trial itself is paid for by the sponsor which is the American Cancer Society, the cost of medicine's that I would be put on for three years would be at a cost of around $10,000.00 a month and the DNA testing is around $5,000.00
Once the match is found, the prepared NK cells will then be infused into me. Then they will give me sub-q IL-2. The hope is that the 50% DNA match mixture would seek out the proteins that melanoma puts out that say they belong there. They attack them, hopefully killing them, maybe putting it in to remission. I have everything to live for, my wife, family, children and little grandchildren whom I love very much, I have so many other reasons..to fight on, I love my band of brothers in Broken Glass, there are many gigs and jams to play (several are benefits for Veteran's groups and Cancer benefits, I want to give back as long as I can!).....fighting this is my only choice. My hilarious dog Finnegan and I are buddies, I plan to be throwing that big pink football for a long time!!
I have everything to gain by volunteering for this clinical trial or any other that I qualify for. Otherwise I would certainly die. This melanoma wants to win this fight, but with the help from my team at the U of M, my family and friends, We are going to try and stop it!!!
We are beginning this GoFundMe account to help my wife Patti and I cover the incredible cost of testing required as well as the medications that are necessary for me to fight this disease.
First, I have a DNA test called Foundation 1. This test will process my DNA, then they can match it with the best donor for a 50% match. Crizotinib is the drug that I will be given. The clinical trial lasts 3 years. I will be given Crizotinib to assist the process of killing this cancer. The DNA testing is around $5000.00. This testing is not optional, the testing I had done last year will not work, it gives the doctors what they need to find the 50% match so they can begin the process. I will be on Crizotinib for up to 3 years, it costs around $10,000.00 per month for the pills. The U of M is one of two hospitals in the country where this clinical trial is done. I am very lucky to have an Oncologist who has been chosen to utilize this trial so hopefully I can live longer. We have been fighting this for over 3 years, and will continue to fight. We are tired, but battle hardened, ready for the next assault!
I want to be able to spend time with my family. Take my young grand kids to the park or the mall of America (maybe even Disney World!), Visit my parents and sister, have backyard bar-be-qu's so we can laugh, play guitars & have a fire. My dog, Finnigan wants to have time to play, go swimming or fishing. If I could have time to do this, I will need help to cover the medical costs.
I want to thank you all so much! Any donations will give us hope, and that's all I need to keep going, hope. Hope will guide us and help us, faith will give us courage, your donations could help save a life... it would be everything to us all.
Organizer
Tom Riley
Organizer
Hastings, MN