I've been to Seattle twice in a week, first to find out the awful news that my cancer was aggressive and would not be going away without aggressive therapy; and second, to sign paperwork to participate in a clinical study and meet with another doctor who wrote the study.
I went with a list of about 30 questions and the new MD went through them, one-by-one, answering them all thoroughly and to my satisfaction. I felt better equipped to make a more informed decision and now I feel more knowledgeable (and somewhat relaxed) about the process.
Although I still don't have a time-line of events on the calendar (on-boarding into a clinical study is its own lengthy process), I have a better idea about what to expect, and in what order. Basically, I will return in the next week or two for tests and screening (PET/CT scans, ECHO, physical, and bloodwork) to make sure I am eligible for the study.
Once I'm officially accepted into the study, I will begin a pill that's currently used for other cancers, for 3 days to 3 weeks, depending on how the schedules of the other processes line up. I'm guessing there is some flexibility in this since no one has been able to tell me any definitive dates yet. Then my blood will be taken and my T cells sent off to the lab to be re-engineered with receptors that recognize my type of cancer (fascinating!).
At this point, I am still at home, visiting Seattle just once or twice a week for blood draws. Since I will be getting poked so often, I will also most likely have a PICC line placed in my chest, an IV that has access to a large vessel for chemo infusion, T cell extraction and reinfusion, and blood draws. With chemo two years ago, I had a port that was surgically implanted; a PICC line will be inserted while I'm awake (eeek!) and is temporary.
When the doctored T cells (CARs) return after 2-3 weeks, I will undergo three days of "lymphodepleting chemo," which means I will receive a lighter dose of chemo than what I've been used to (yay!). Chemo is given to lessen the tumor load so that the CARs can expand and survive in my system.
I will have to relocate south once chemo begins since monitoring will be turned up a notch, and I will definitely have to be in the hospital for at least 7 days, maybe longer depending on my response, when the T cells are reinfused a few days after chemo.
After that, I was "strongly encouraged" to find a caregiver who can check on me for any side effects that may crop up after hospital discharge. I will still be required to be close to the hospital, but I won't have the constant eyes of the hospital team closely monitoring me.
Since I have no one who can drop their lives to stay with me, I'm going to ask if "remote care-giving" is an option. After all, if the docs only need someone to check on me once daily, couldn't they do that over the phone or via ZOOM? If I don't answer the care-giver's call, the team could then be alerted. I will have to see if this will fly with my doctors.
(In the meantime, I emailed my family and was overwhelmed by their responses; everyone is willing to check on me and three of my siblings volunteered to fly out to stay with me. I couldn't help but cry happy tears).
I was surprised to find out that not everybody is automatically guaranteed a spot in a clinical trial, but because different ones are occurring all the time, the chances of getting into one that is more appropriately suited to each individual is high. I was also informed that I was "cherry-picked" for this particular study because of my age, my overall good health, and my low tumor burden (it's still very small). Most people who have the CAR-T are often on death's doorstep and the therapy is their final resort toward remission.
This is precisely why I am reticent about doing the treatment. I feel great, I look well, my energy has been restored, and I have no symptoms that would signal there is an aggressive, tiny tumor near my trachea that has the potential to cause massive harm. And now I will have to submit to a therapy that is potentially life-threatening and may bring on long-lasting effects?
Oy.
But I am also one of the lucky ones because my recurrence is sort of an anomaly. When cancer is resistant to several treatments, it tends to proliferate out of control on its own. Chemotherapy stopped a dozen tumors in its tracks fairly quickly (after my 4th treatment) two summers ago, but chemo was still continued for a full 6 sessions to guarantee a complete and long-lasting shut-down. Added to that, I had 20 radiation treatments to really make sure cancer was gone forever.
Despite the success of those treatments, cancer still had the nerve (and apparently, the power) to return 20 months after I went into remission. Even immunotherapy could not stop the growth this summer, so the Big Gun (CAR-T) has been brought in, though I don't think having a small tumor load is the typical scenario for someone getting CAR-T.
The concern is that while we're waiting for this treatment to begin, my aggressive tumor can suddenly decide to grow out of control, unabated. It is why CAR-T has been deemed the best option, because if this teeny-tiny tumor grows, it may be unstoppable and can overtake my system faster than any conventional therapy could treat it.
So while I am reticent about trying something so radical for such a small tumor, I am also aware that any less radical treatment may not be enough if this cancer goes rogue. But in the seven weeks since Immunotherapy, and two weeks since the latest PET scan, the tumor has remained stable and unchanged.
Phew!
Another PET scan will be done in the upcoming weeks to obtain an updated baseline, so here's hoping that the tumor remains teeny-tiny. If so, treating it with CAR-T should be more of a breeze than other folks who are trying to eliminate several, probably large, spots in their bodies.
I'm realizing that being specifically chosen for this particular study has its perks. I am apparently already well-known on the hematology floor (at the second-best cancer treatment center in the world) as my name and clinical case come up in daily rounds. I was "warned" that "several people will be hovering around me at all times," ensuring my safety and anticipating a good outcome for research.
Hovering and pampering? I am all yours!
The study is to determine if getting a chemo-like pill twice a day before the CAR-T will have any significant impact on side effects. If I don't do well on the pill, or I decide not to take it, or the team stops it, the study will take all of that into account for their research. No matter what, I will still get the CAR-T.
Since Seattle implements a team approach to how they treat patients, I have received several phone calls from several people who take care of their particular task. Yesterday, Oliver from insurance verification called to let me know that he's working with my insurance company, but because I had already called them last week, I already knew what he was trying to report: that I have unlimited benefits!
What I couldn't have guessed is that I have to sign a financial agreement before the study begins, which states that if I pull out of the treatment after my T-cells have been taken from me and sent to the lab to be re-engineered, I will owe $373,000.00! I guess that's good enough incentive to determine if I really, really want this treatment!
Another surprise was when I asked the doctor how many others have taken the pill in conjunction with the CAR-T.
His answer?
"You are the first".
I am considered "N1" which means I am part of a clinical trial in which a single patient is the entire trial, a single case study. So far, I am the only one in this study (it can take up to 20 participants) and definitely the first, ever, anywhere else!
That scared me initially, until the MD reiterated that I can stop the pill at any time without consequences to the study, but I can also make medical history if this goes well.
Hmmmm, as a nurse and humanitarian who believes in organ/tissue donation, stem cell research, and cord blood usage, I am all for contributing to research and science. It helps that this pill has already been used to treat other cancers on its own and has been FDA approved for several years.
But still, it's a heavy (albeit exciting!) load.
I am already feeling so well taken care of by the Clinical Trial Team, even though I will be getting passed off to the CAR-T Team next to begin the process of T cell extraction and reinfusion.
In the meantime, I have been researching housing options near the facility, feeling a wee-bit stressed about getting a place secured in time. But during our meeting, the Coordinator told me that the Social Worker assigned to me will do all of that for me and may even be able to secure financial aid assistance to cover costs while I live in another city for 2 months.
Wow! For a gal who's used to figuring it all out on her own, this level of support reduces me to tears.
Of course, I've been in tears a lot lately: first, my diagnosis; then the election; always when I think about possibly leaving my kids behind if this treatment goes south; and each time a miracle arrives--which has been constant.
I am not only being taken care of by a medical team who hardly knows me, but by my family and a large group of friends who love me, and by God and angels who remain faithfully by my side.
I am humbled, overwhelmed with gratitude, and massively hopeful that this outcome is the one we're all praying for.
I went with a list of about 30 questions and the new MD went through them, one-by-one, answering them all thoroughly and to my satisfaction. I felt better equipped to make a more informed decision and now I feel more knowledgeable (and somewhat relaxed) about the process.
Although I still don't have a time-line of events on the calendar (on-boarding into a clinical study is its own lengthy process), I have a better idea about what to expect, and in what order. Basically, I will return in the next week or two for tests and screening (PET/CT scans, ECHO, physical, and bloodwork) to make sure I am eligible for the study.
Once I'm officially accepted into the study, I will begin a pill that's currently used for other cancers, for 3 days to 3 weeks, depending on how the schedules of the other processes line up. I'm guessing there is some flexibility in this since no one has been able to tell me any definitive dates yet. Then my blood will be taken and my T cells sent off to the lab to be re-engineered with receptors that recognize my type of cancer (fascinating!).
At this point, I am still at home, visiting Seattle just once or twice a week for blood draws. Since I will be getting poked so often, I will also most likely have a PICC line placed in my chest, an IV that has access to a large vessel for chemo infusion, T cell extraction and reinfusion, and blood draws. With chemo two years ago, I had a port that was surgically implanted; a PICC line will be inserted while I'm awake (eeek!) and is temporary.
When the doctored T cells (CARs) return after 2-3 weeks, I will undergo three days of "lymphodepleting chemo," which means I will receive a lighter dose of chemo than what I've been used to (yay!). Chemo is given to lessen the tumor load so that the CARs can expand and survive in my system.
I will have to relocate south once chemo begins since monitoring will be turned up a notch, and I will definitely have to be in the hospital for at least 7 days, maybe longer depending on my response, when the T cells are reinfused a few days after chemo.
After that, I was "strongly encouraged" to find a caregiver who can check on me for any side effects that may crop up after hospital discharge. I will still be required to be close to the hospital, but I won't have the constant eyes of the hospital team closely monitoring me.
Since I have no one who can drop their lives to stay with me, I'm going to ask if "remote care-giving" is an option. After all, if the docs only need someone to check on me once daily, couldn't they do that over the phone or via ZOOM? If I don't answer the care-giver's call, the team could then be alerted. I will have to see if this will fly with my doctors.
(In the meantime, I emailed my family and was overwhelmed by their responses; everyone is willing to check on me and three of my siblings volunteered to fly out to stay with me. I couldn't help but cry happy tears).
I was surprised to find out that not everybody is automatically guaranteed a spot in a clinical trial, but because different ones are occurring all the time, the chances of getting into one that is more appropriately suited to each individual is high. I was also informed that I was "cherry-picked" for this particular study because of my age, my overall good health, and my low tumor burden (it's still very small). Most people who have the CAR-T are often on death's doorstep and the therapy is their final resort toward remission.
This is precisely why I am reticent about doing the treatment. I feel great, I look well, my energy has been restored, and I have no symptoms that would signal there is an aggressive, tiny tumor near my trachea that has the potential to cause massive harm. And now I will have to submit to a therapy that is potentially life-threatening and may bring on long-lasting effects?
Oy.
But I am also one of the lucky ones because my recurrence is sort of an anomaly. When cancer is resistant to several treatments, it tends to proliferate out of control on its own. Chemotherapy stopped a dozen tumors in its tracks fairly quickly (after my 4th treatment) two summers ago, but chemo was still continued for a full 6 sessions to guarantee a complete and long-lasting shut-down. Added to that, I had 20 radiation treatments to really make sure cancer was gone forever.
Despite the success of those treatments, cancer still had the nerve (and apparently, the power) to return 20 months after I went into remission. Even immunotherapy could not stop the growth this summer, so the Big Gun (CAR-T) has been brought in, though I don't think having a small tumor load is the typical scenario for someone getting CAR-T.
The concern is that while we're waiting for this treatment to begin, my aggressive tumor can suddenly decide to grow out of control, unabated. It is why CAR-T has been deemed the best option, because if this teeny-tiny tumor grows, it may be unstoppable and can overtake my system faster than any conventional therapy could treat it.
So while I am reticent about trying something so radical for such a small tumor, I am also aware that any less radical treatment may not be enough if this cancer goes rogue. But in the seven weeks since Immunotherapy, and two weeks since the latest PET scan, the tumor has remained stable and unchanged.
Phew!
Another PET scan will be done in the upcoming weeks to obtain an updated baseline, so here's hoping that the tumor remains teeny-tiny. If so, treating it with CAR-T should be more of a breeze than other folks who are trying to eliminate several, probably large, spots in their bodies.
I'm realizing that being specifically chosen for this particular study has its perks. I am apparently already well-known on the hematology floor (at the second-best cancer treatment center in the world) as my name and clinical case come up in daily rounds. I was "warned" that "several people will be hovering around me at all times," ensuring my safety and anticipating a good outcome for research.
Hovering and pampering? I am all yours!
The study is to determine if getting a chemo-like pill twice a day before the CAR-T will have any significant impact on side effects. If I don't do well on the pill, or I decide not to take it, or the team stops it, the study will take all of that into account for their research. No matter what, I will still get the CAR-T.
Since Seattle implements a team approach to how they treat patients, I have received several phone calls from several people who take care of their particular task. Yesterday, Oliver from insurance verification called to let me know that he's working with my insurance company, but because I had already called them last week, I already knew what he was trying to report: that I have unlimited benefits!
What I couldn't have guessed is that I have to sign a financial agreement before the study begins, which states that if I pull out of the treatment after my T-cells have been taken from me and sent to the lab to be re-engineered, I will owe $373,000.00! I guess that's good enough incentive to determine if I really, really want this treatment!
Another surprise was when I asked the doctor how many others have taken the pill in conjunction with the CAR-T.
His answer?
"You are the first".
I am considered "N1" which means I am part of a clinical trial in which a single patient is the entire trial, a single case study. So far, I am the only one in this study (it can take up to 20 participants) and definitely the first, ever, anywhere else!
That scared me initially, until the MD reiterated that I can stop the pill at any time without consequences to the study, but I can also make medical history if this goes well.
Hmmmm, as a nurse and humanitarian who believes in organ/tissue donation, stem cell research, and cord blood usage, I am all for contributing to research and science. It helps that this pill has already been used to treat other cancers on its own and has been FDA approved for several years.
But still, it's a heavy (albeit exciting!) load.
I am already feeling so well taken care of by the Clinical Trial Team, even though I will be getting passed off to the CAR-T Team next to begin the process of T cell extraction and reinfusion.
In the meantime, I have been researching housing options near the facility, feeling a wee-bit stressed about getting a place secured in time. But during our meeting, the Coordinator told me that the Social Worker assigned to me will do all of that for me and may even be able to secure financial aid assistance to cover costs while I live in another city for 2 months.
Wow! For a gal who's used to figuring it all out on her own, this level of support reduces me to tears.
Of course, I've been in tears a lot lately: first, my diagnosis; then the election; always when I think about possibly leaving my kids behind if this treatment goes south; and each time a miracle arrives--which has been constant.
I am not only being taken care of by a medical team who hardly knows me, but by my family and a large group of friends who love me, and by God and angels who remain faithfully by my side.
I am humbled, overwhelmed with gratitude, and massively hopeful that this outcome is the one we're all praying for.
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