Devon's PRRT Lutate-177 Therapy
Donation protected
Below is my most recent journal entry. Please visit my journal to read the full journey xoxo My goal is through sharing my journey others will feel less alone on their path. 1 in 3 will have a cancer diagnosis in their lives, this disease sadly is a normal part of our life. Is it normal at 33 to be diagnosed? Nope, just dumb luck. I just want to show how we CAN live with cancer. That the best way to fight is to get out their and live like you're throwing confetti into the universe! #confettiwarriors
https://www.caringbridge.org/visit/devo/journal
4 months ago, as Dr. Emily Bergsland, my UCSF Gastroenterologist/gastric oncologist wrapped up our check up she stood up and said directly to me, "I wish I could say you were stable, but right now I can't. Let's schedule to talk again in 3 months and have a game plan in place." What were my options? Multiple other chemos that are known to stop disease progression, have minor shrinkage for an average of half a year to two years. Some with hair loss, some without. A range of side effects, and an option of a treatment available in Europe and Australia. Widely used all across Europe but most famously given at the Bad Berga institute for neuroendocrine. Steve Jobs who had a similar disease used this therapy for 20+ years to stabilize his disease.
This European treatment is called PRRT, Lutate-177 or lutetium therapy. It has proven to be the most effective treatment for carcinoid and neuroendocrine patients. It has great impact on stabilizing the disease. It can have tumor shrinkage results plus stopping and disease progression on an average of 48 months. This statistic is constantly changing as time lapses. Last year it was 40 months, and we hope by the end of this year it will be 5-6 years before disease progression statistically rather than 4. After you receive the treatment, when things change, you may go back and get another dose. It is also very expensive. Mounting hospital costs, the travel, and hotel stays add up. They give this treatment in Melbourne, Australia, Sydney, Australia, Germany, Netherlands, Norway, and a few more places. All which peaked our interested, Australia more so because of John's family support we could gain from it.
15 minutes later we were in the car on the phone booking in appointments with the University of Iowa to meet with Dr O'dorisio and do a new patient consultation. We heard they had spots still for their treatment. Over 2-3 weeks of correspondence it became clear that the spots are full and the next one they're booking is in January and by the time I might get to Iowa and all the paperwork and pathology sent over it could be March 2017 they're booking.
At the same time that I received this news my sister Shannon and husband Ryan were on a trip of a lifetime through New Zealand and Australia. Shannon's roommate from college just so happens to be an oncologist at the Peter MacCallum Oncology Center. She works directly with Dr Hoffman who would be my specialist/doctor there. She was able to suggest generously that the hospital might be able to cover a lot of our medical bills and extras. But the logistics, and added expenses of flights, hotels, childcare, longer flights, more expensive flights made this a taller hurdle to take.
Then next month at a routine check in with my local oncologist Dr Gigi Chen, shares she met Dr. Wolin a specialist at a conference and he was interested in my case and had a few spots for this treatment in NY at the Monte Fiore hospital in the Bronx. With the help of Gigi we fast tracked getting all of my information as quickly as possible to his facility, booked an appointment and a flight to have a initial consultation. This was in the middle of August. It was close, we got the 10th spot of 10 available. Way too close for comfort. If I was there a day later I would be up a creek no paddle for a few more months. I am so grateful. This initial meeting with Dr. Wolin was so special, He read over all of my charts. Then he pauses, looks up at me, and says directly "I'm going to get you better, let's do this".
You only have a few of these moments in your life where the noise is cut through and a great leader steps up and takes your hand. This was one of those moments. I knew Dr. Wolin was my guy, and coming to NY was the best and right choice.
Now you ask, why not UCLA, Stanford, or UCSF? Why this little hospital in the Bronx of New York? UCLA had spots available. We heard Stanford was starting to give this treatment, and UCSF but not sure when. Here in lies the challenge, with my disease they were never able to give me a point of origination. Meaning the original location of my first cancer tumor. The doctors believe I have had this disease for many many years prior to discovering it, it is very common for a point of origination to dissipate and go away. Point of origination is an important detail, they use it to qualify or disqualify you for medical trials. Up to this point John and I have agreed I would not participate in any trials. We were so naive, there is such a thing as a expanded access trial. This is after blind studies, placebos, dosing studies have been complete. It's the last step. The step where we're waiting on the FDA to approve in their process and patients may begin to be treated but only at the expense of the institute or the pharmaceutical company. As a patient you are treated as you need to be treated with the medication that are best for your case. I've been working with UCSF pathology and my specialist Dr. Emily Bergsland and neither were confident enough to argue based off the reports what my point of origination is. There for disqualifying me as a candidate for their trials
This detail is a make it or break it detail. This treatment is a trial, expanded access trial. While the therapy has been given safely for over 20 years around the world, it is the first time in the US. Mostly due to cost of the drug, drug not being american manufactured, and health insurances not wanting the cost of the drug. Now there are rising cases of carcinoid tumor patients, and this visibility is getting a lot more attention to new drugs and research.
We are so grateful for this opportunity. After 5 minutes in the room with Dr. Wolin he put on his glasses, got a calculator out and pored over all of my reports. He in confidence suggested my primary is a mid gut/small bowel origination, therefore qualifying me for a spot in his trial! This is why, this man, and his confidence is why I will be going to NY for my treatments. I don't need to play the game of what ifs and exploring local institutions. I had a spot, I took the spot. So that leads us to now, right now, here we are off now on the start of this journey.
I write this from the Dallas airport during our layover on the way to New York. Of course, I already wrote this once and deleted it on accident rather than publishing. Doh! I promise you it was written so much better! Sometimes you get in a mojo as a writer and it just spills in a wonderful way. I'm sorry that one was trashed by the universe.
So here we are on my first trip of 4 maybe 5. I will receive the radiation as an infusion on Wednesday. The radiation is bound with the hormone/chemical that my tumors uptake. I always imagine little pacman and they're putting all the little yummies in front of them and they eat it up. Then the radiation acts like a trojan horse, once the cell has eaten it up, and it's on the inside it attacks from within. This is known to stop disease progression for an average of 4-5 years, some have had 7 years, others 20. There is also tumor shrinkage that is possible! We'll see, this is where the power of mind, body, and spirit come in to play in a big way these next few months. Then I will return in 8 weeks and do it all over again, every 8 weeks for a total of 4 rounds.
I feel so blessed and amazed that this opportunity is here for our family and humbled that I get this treatment! Side effects are low, some complain of nausea during the administration of the infusion, fatigue a few days after, but the reports also say they're not sure if it's from the travel or the infusion. I will keep my hair :-D The only catch is, as it is an infusion, I pee the radiation out, so it will flush through my kidneys and bladder. So lots and lots of water, bathroom trips, are all in order.
So radiation....hmmm....so what you really want to know is, will I glow green on my return? Ha I hope so, that would be cool to learn my aura color that I radiate! I've always imagined an electric iridescent purple. But no, no glowing. I do get a cool card to travel home with in case I set off any radiation detectors at the airport. I am restricted from flying home for 4 days post infusion for public safety of pregnant women, small children, and women trying to get pregnant or breastfeeding. I am not meant to be within a meter, 3 feet of any individual for 3 days. John is my travel companion for this first trip and yes we will stay in a room with two queen beds. The hotel will need to wash all my sheets and towels separate any other load they operate. I'm not safe to be around anyone under the age of 12 in that window.
SO many of you have asked how you can help our family as I enter back into treatments. We are so grateful and humbled by all of the support we have already received. Some offering and helping us with meals in the past, donations, and visits with love. This is an extremely uncomfortable position for John and I. Over the past months I have worked very hard to help our family save and afford Amelia's first trip to Disneyland, we also have John's birthday mini getaway planned, along with our annual family trip to Sydney, Australia. It is really difficult to take money from family and friends. We never want to alienate anyone, and have anyone have to worry we were spoiled by the donations. Though we find ourselves in a position where so many of you have been asking us how you can help, we will set up a go fund me for donations. One of gods teachings is in learning how to receive gifts, and this is a lesson I struggle with. We recognize the need, being that the treatment demands a 7 night stay in New York City, sometimes at holiday peak season dates that will make it very challenging financially, and it is out of our control. I also am required to have a travel companion for the treatments. I am so grateful and extremely appreciative John was able to work part time this week to accompany me the first round. After this though it will be a friends and family that have the ability to donate their time away with me. So through the go fund me we appreciate all of you who have been asking for us to give you a place to help us, and this will be the place. We will use the funds only to help pay for the expenses of the travel companion and any unforeseen medical bills that could surprise us. With money leftover at the end of the 8 months we will donate them to the NorCal CarciNet Foundation. The lead of this group Josh Mailman, whom is also a patient, is one of the guys responsible for getting this treatment on US soil this year instead of next year or in 3 years. We want to help support this organization in any and everyway we can. We are the most organized and knowledgable group of patients around the world, and we meet right here in Pleasant Hill at the Cancer Community Support Network bi monthly on the first Saturday 1-4. Anyone is welcome to join!
https://www.caringbridge.org/visit/devo/journal
4 months ago, as Dr. Emily Bergsland, my UCSF Gastroenterologist/gastric oncologist wrapped up our check up she stood up and said directly to me, "I wish I could say you were stable, but right now I can't. Let's schedule to talk again in 3 months and have a game plan in place." What were my options? Multiple other chemos that are known to stop disease progression, have minor shrinkage for an average of half a year to two years. Some with hair loss, some without. A range of side effects, and an option of a treatment available in Europe and Australia. Widely used all across Europe but most famously given at the Bad Berga institute for neuroendocrine. Steve Jobs who had a similar disease used this therapy for 20+ years to stabilize his disease.
This European treatment is called PRRT, Lutate-177 or lutetium therapy. It has proven to be the most effective treatment for carcinoid and neuroendocrine patients. It has great impact on stabilizing the disease. It can have tumor shrinkage results plus stopping and disease progression on an average of 48 months. This statistic is constantly changing as time lapses. Last year it was 40 months, and we hope by the end of this year it will be 5-6 years before disease progression statistically rather than 4. After you receive the treatment, when things change, you may go back and get another dose. It is also very expensive. Mounting hospital costs, the travel, and hotel stays add up. They give this treatment in Melbourne, Australia, Sydney, Australia, Germany, Netherlands, Norway, and a few more places. All which peaked our interested, Australia more so because of John's family support we could gain from it.
15 minutes later we were in the car on the phone booking in appointments with the University of Iowa to meet with Dr O'dorisio and do a new patient consultation. We heard they had spots still for their treatment. Over 2-3 weeks of correspondence it became clear that the spots are full and the next one they're booking is in January and by the time I might get to Iowa and all the paperwork and pathology sent over it could be March 2017 they're booking.
At the same time that I received this news my sister Shannon and husband Ryan were on a trip of a lifetime through New Zealand and Australia. Shannon's roommate from college just so happens to be an oncologist at the Peter MacCallum Oncology Center. She works directly with Dr Hoffman who would be my specialist/doctor there. She was able to suggest generously that the hospital might be able to cover a lot of our medical bills and extras. But the logistics, and added expenses of flights, hotels, childcare, longer flights, more expensive flights made this a taller hurdle to take.
Then next month at a routine check in with my local oncologist Dr Gigi Chen, shares she met Dr. Wolin a specialist at a conference and he was interested in my case and had a few spots for this treatment in NY at the Monte Fiore hospital in the Bronx. With the help of Gigi we fast tracked getting all of my information as quickly as possible to his facility, booked an appointment and a flight to have a initial consultation. This was in the middle of August. It was close, we got the 10th spot of 10 available. Way too close for comfort. If I was there a day later I would be up a creek no paddle for a few more months. I am so grateful. This initial meeting with Dr. Wolin was so special, He read over all of my charts. Then he pauses, looks up at me, and says directly "I'm going to get you better, let's do this".
You only have a few of these moments in your life where the noise is cut through and a great leader steps up and takes your hand. This was one of those moments. I knew Dr. Wolin was my guy, and coming to NY was the best and right choice.
Now you ask, why not UCLA, Stanford, or UCSF? Why this little hospital in the Bronx of New York? UCLA had spots available. We heard Stanford was starting to give this treatment, and UCSF but not sure when. Here in lies the challenge, with my disease they were never able to give me a point of origination. Meaning the original location of my first cancer tumor. The doctors believe I have had this disease for many many years prior to discovering it, it is very common for a point of origination to dissipate and go away. Point of origination is an important detail, they use it to qualify or disqualify you for medical trials. Up to this point John and I have agreed I would not participate in any trials. We were so naive, there is such a thing as a expanded access trial. This is after blind studies, placebos, dosing studies have been complete. It's the last step. The step where we're waiting on the FDA to approve in their process and patients may begin to be treated but only at the expense of the institute or the pharmaceutical company. As a patient you are treated as you need to be treated with the medication that are best for your case. I've been working with UCSF pathology and my specialist Dr. Emily Bergsland and neither were confident enough to argue based off the reports what my point of origination is. There for disqualifying me as a candidate for their trials
This detail is a make it or break it detail. This treatment is a trial, expanded access trial. While the therapy has been given safely for over 20 years around the world, it is the first time in the US. Mostly due to cost of the drug, drug not being american manufactured, and health insurances not wanting the cost of the drug. Now there are rising cases of carcinoid tumor patients, and this visibility is getting a lot more attention to new drugs and research.
We are so grateful for this opportunity. After 5 minutes in the room with Dr. Wolin he put on his glasses, got a calculator out and pored over all of my reports. He in confidence suggested my primary is a mid gut/small bowel origination, therefore qualifying me for a spot in his trial! This is why, this man, and his confidence is why I will be going to NY for my treatments. I don't need to play the game of what ifs and exploring local institutions. I had a spot, I took the spot. So that leads us to now, right now, here we are off now on the start of this journey.
I write this from the Dallas airport during our layover on the way to New York. Of course, I already wrote this once and deleted it on accident rather than publishing. Doh! I promise you it was written so much better! Sometimes you get in a mojo as a writer and it just spills in a wonderful way. I'm sorry that one was trashed by the universe.
So here we are on my first trip of 4 maybe 5. I will receive the radiation as an infusion on Wednesday. The radiation is bound with the hormone/chemical that my tumors uptake. I always imagine little pacman and they're putting all the little yummies in front of them and they eat it up. Then the radiation acts like a trojan horse, once the cell has eaten it up, and it's on the inside it attacks from within. This is known to stop disease progression for an average of 4-5 years, some have had 7 years, others 20. There is also tumor shrinkage that is possible! We'll see, this is where the power of mind, body, and spirit come in to play in a big way these next few months. Then I will return in 8 weeks and do it all over again, every 8 weeks for a total of 4 rounds.
I feel so blessed and amazed that this opportunity is here for our family and humbled that I get this treatment! Side effects are low, some complain of nausea during the administration of the infusion, fatigue a few days after, but the reports also say they're not sure if it's from the travel or the infusion. I will keep my hair :-D The only catch is, as it is an infusion, I pee the radiation out, so it will flush through my kidneys and bladder. So lots and lots of water, bathroom trips, are all in order.
So radiation....hmmm....so what you really want to know is, will I glow green on my return? Ha I hope so, that would be cool to learn my aura color that I radiate! I've always imagined an electric iridescent purple. But no, no glowing. I do get a cool card to travel home with in case I set off any radiation detectors at the airport. I am restricted from flying home for 4 days post infusion for public safety of pregnant women, small children, and women trying to get pregnant or breastfeeding. I am not meant to be within a meter, 3 feet of any individual for 3 days. John is my travel companion for this first trip and yes we will stay in a room with two queen beds. The hotel will need to wash all my sheets and towels separate any other load they operate. I'm not safe to be around anyone under the age of 12 in that window.
SO many of you have asked how you can help our family as I enter back into treatments. We are so grateful and humbled by all of the support we have already received. Some offering and helping us with meals in the past, donations, and visits with love. This is an extremely uncomfortable position for John and I. Over the past months I have worked very hard to help our family save and afford Amelia's first trip to Disneyland, we also have John's birthday mini getaway planned, along with our annual family trip to Sydney, Australia. It is really difficult to take money from family and friends. We never want to alienate anyone, and have anyone have to worry we were spoiled by the donations. Though we find ourselves in a position where so many of you have been asking us how you can help, we will set up a go fund me for donations. One of gods teachings is in learning how to receive gifts, and this is a lesson I struggle with. We recognize the need, being that the treatment demands a 7 night stay in New York City, sometimes at holiday peak season dates that will make it very challenging financially, and it is out of our control. I also am required to have a travel companion for the treatments. I am so grateful and extremely appreciative John was able to work part time this week to accompany me the first round. After this though it will be a friends and family that have the ability to donate their time away with me. So through the go fund me we appreciate all of you who have been asking for us to give you a place to help us, and this will be the place. We will use the funds only to help pay for the expenses of the travel companion and any unforeseen medical bills that could surprise us. With money leftover at the end of the 8 months we will donate them to the NorCal CarciNet Foundation. The lead of this group Josh Mailman, whom is also a patient, is one of the guys responsible for getting this treatment on US soil this year instead of next year or in 3 years. We want to help support this organization in any and everyway we can. We are the most organized and knowledgable group of patients around the world, and we meet right here in Pleasant Hill at the Cancer Community Support Network bi monthly on the first Saturday 1-4. Anyone is welcome to join!
Organizer
Devon Knight
Organizer
Martinez, CA
