As most of you know I was gearing up for the NYC trial at Columbia with Doctor O'conner. After a few last minute thoughts, and conversations. I've decided to back out of this trial and go with my gut, and begin the initial screening process for the LBH589 trial here, in Boston.
So Plan A = LBH589.
So many people have offered me their homes, and meals for the next week in NY. That I did not want to appear rude, by ignoring your invitations. And although, I don't have too much information, as of yet. I know that the start date for my first cycle will be October 6th.
The pathologies have been sent back to Dana Farber, the screening tests are taking place this week. You'll laugh at this... Thursday they're doing ALL of my tests. BMB, blood work, EKG, RVG, separate PET/CT scans. Oh the days of being in the hospital from 9-5, you have to love them. But, at least the tests will be done. We'll have all of my results ready by Friday.
The trial has to start on a Monday and due to high volume level for clinical trials, DF says the earliest they can start me is the 6th; however, if someone were to cancel an appointment, or back out, I could start September 29th. But, if we start on the 6th - hey - that's okay with me. One more week of freedom :)
I hope everyone will be able to support my choices thus far, but in the end, I know it really is my final decision, and how I truly feel about each trial. Just know, there were a lot of different factors that gave me this change of heart, which I will share with you all a little later...
Just wanted to send out the word -- so for now,
goodbye Columbia... hello Dana Farber.
* for the worriers in my life:
In the end, the time difference will only be ten days later of when I begin the drugs. In the grand scheme of things, and that is of Hodgkin's, this time difference will not make a difference in the efficacy of the drug or on my disease.
Trust me, this was a good decision.
Sending Love,
B
Tuesday, September 23, 2008
Thursday, September 18, 2008
Save a life
The National Bone Marrow Registry is extending a deadline to register individuals to see if they are a 'match,' for those who need a bone marrow transplant. Normally, it costs money to register. But, you have till September 22nd, to register for free.
For people like me, friends of mine, and strangers you hardly know. All you need to do is register on-line, they send you a small kit, you swab your cheek, and send it back. No blood, no needles, nothing. Just a cheek swab and you could literally, save a life.
It could be mine, a year or two from now.
Register: here
Why should you register?
For kids who didn't have a chance to live past the age of ten,
like Evan and Boey
For young women, who are waiting after months of chemo like Michelle and Eureka
and survivors like, Andrew (from Something Corporate) and Eric.
Save a life,
register,
swab,
mail it back.
make a difference.
<3 B
For people like me, friends of mine, and strangers you hardly know. All you need to do is register on-line, they send you a small kit, you swab your cheek, and send it back. No blood, no needles, nothing. Just a cheek swab and you could literally, save a life.
It could be mine, a year or two from now.
Register: here
Why should you register?
For kids who didn't have a chance to live past the age of ten,
like Evan and Boey
For young women, who are waiting after months of chemo like Michelle and Eureka
and survivors like, Andrew (from Something Corporate) and Eric.
Save a life,
register,
swab,
mail it back.
make a difference.
<3 B
Tuesday, September 16, 2008
Jennifer Willey
Another Hodgkin's story you should read up on is, Jennifer Willey.
Jennifer is 29 and is one of those true, true, cancer warriors. That has undergone incredibly intense amounts of treatment from standard chemo, Auto and Allo transplants, and now fights for her life everyday. Trying and succeeding in finding the beauty of life, even though she hardly ever leaves her home. And has breathing problems, as well as GVHD (graft verse host disease). She is another kind, warm, brilliant soul and light in the darkness that is cancer.
Recently, her mother, Vi Willey, was interviewed for this article, that I wanted to share with all of you "mothers" out there. These two women combined are pretty powerful. And their strength is overwhelming.
I hope you can take the time to read over the article, Jennifer's Journal, and hopefully leave her a nice comment, to cheer her on.
Sending Love,
B
Jennifer is 29 and is one of those true, true, cancer warriors. That has undergone incredibly intense amounts of treatment from standard chemo, Auto and Allo transplants, and now fights for her life everyday. Trying and succeeding in finding the beauty of life, even though she hardly ever leaves her home. And has breathing problems, as well as GVHD (graft verse host disease). She is another kind, warm, brilliant soul and light in the darkness that is cancer.
Recently, her mother, Vi Willey, was interviewed for this article, that I wanted to share with all of you "mothers" out there. These two women combined are pretty powerful. And their strength is overwhelming.
I hope you can take the time to read over the article, Jennifer's Journal, and hopefully leave her a nice comment, to cheer her on.
Sending Love,
B
Wednesday, September 10, 2008
One foot in front of the other...
Even though I feel somewhat calm about my decisions thus far for treatment, there are still calls, appointments, and schedules to be set.
On top of that I started my second to last semester for my Master's program this week.
So, I'm a teeny bit stressed.
So... what has she decided? Might you ask:
We will start with a clinical trial at Columbia, with Dr. O'conner, most likely starting next week.
However, there has been a major hold-up. The pathology slides that had been sent out to Dana Farber, were lost for about a week. We finally found them in doctors office at DF, and they've been sent back to Upenn, as of yesterday. Thus, we can finally send these slides to Columbia (Where Doctor O'Conner will be treating me). But, we can't set the wheels into motion until they have all of my information.
Most likely, next week I will commute from Boston to NY. (Once a week for about 4-5 weeks), to start this trial. Since the SGN-35 Trial (CD-30 Antibody drugs) is closed at the moment, my decision on what class of drugs to start with was fairly easy. So, we will start with the H-DAC drugs.
This specific trial is: PXD101, it is through oral pills; however, it is a study focused on solid tumors. Hodgkin's disease however, is a liquid tumor. So this trial is for 'lymphoma's.' I'm optimistic under Dr. O'conner's care, but my gutt tells me, that I have a better shot at maintaining this disease under the anti-body drugs (SGN-35). Only time will tell. Thankfully, I do not have any major B-symptoms, except for a small drop in weight.
I know this is horribly confusing. Just know, I have a plan A (PXD) and a plan B (SGN). My plan B will not be available for me until sometime around November or December. Since that specific trial is closed at the moment. But, it will re-open in a few months.
So for now, we start with PXD, which is a phase II trial, that focuses on lymphoma, and under great care of a doctor. We will scan once a month. After the second month, if there is more progression of my disease than not. I will discontinue this trial, and hopefully just jump into plan B. If the disease progresses too much, we might need to go back to chemo for a month. But, lets not get a head of ourselves.
I hope my lack of energy doesn't translate into negativity. Because that is not the case. It's honestly, just been a very, very, draining week. Making calls, starting classes, researching trials, being on the phone for hours trying to hunt down slides, talking to doctors. But know, I feel comfortable with what I have in front of me. I just wanted to update, to let everyone know what the next few months will look like.
Plan A: PDX
* Once a week for 4 to 5 weeks in NY, to check in with O'conners team, blood work, tests, ect. (Then only once a month, after we get through the first month)
* Oral pills, 14 days on, 7 days off.
* minimal side effects (fatigue, nausea, gi issues)
* Scans every four weeks
Things that have nothing to do with cancer that I am thankful/happy about
* classes that I love
* being with friends, and welcoming fall with open arms
* starting to volunteer as a literacy aid 2-3 times a week starting in october
* signed up for a yoga class
* knowing, i'm still here. and will be, for longer than most think.
* and hair! For those going through transplant -- this is just shy of five months out.
Personally, I am taking off the next few days from cancer (can she do that?) heh. Yes, I can. Going to focus on my first paper and readings of the semester, fixing up my apartment, going to a sox game, and relax before Plan A begins.
I'll share more about the trial, next week.
Sending out my love
to all of you,
B
On top of that I started my second to last semester for my Master's program this week.
So, I'm a teeny bit stressed.
So... what has she decided? Might you ask:
We will start with a clinical trial at Columbia, with Dr. O'conner, most likely starting next week.
However, there has been a major hold-up. The pathology slides that had been sent out to Dana Farber, were lost for about a week. We finally found them in doctors office at DF, and they've been sent back to Upenn, as of yesterday. Thus, we can finally send these slides to Columbia (Where Doctor O'Conner will be treating me). But, we can't set the wheels into motion until they have all of my information.
Most likely, next week I will commute from Boston to NY. (Once a week for about 4-5 weeks), to start this trial. Since the SGN-35 Trial (CD-30 Antibody drugs) is closed at the moment, my decision on what class of drugs to start with was fairly easy. So, we will start with the H-DAC drugs.
This specific trial is: PXD101, it is through oral pills; however, it is a study focused on solid tumors. Hodgkin's disease however, is a liquid tumor. So this trial is for 'lymphoma's.' I'm optimistic under Dr. O'conner's care, but my gutt tells me, that I have a better shot at maintaining this disease under the anti-body drugs (SGN-35). Only time will tell. Thankfully, I do not have any major B-symptoms, except for a small drop in weight.
I know this is horribly confusing. Just know, I have a plan A (PXD) and a plan B (SGN). My plan B will not be available for me until sometime around November or December. Since that specific trial is closed at the moment. But, it will re-open in a few months.
So for now, we start with PXD, which is a phase II trial, that focuses on lymphoma, and under great care of a doctor. We will scan once a month. After the second month, if there is more progression of my disease than not. I will discontinue this trial, and hopefully just jump into plan B. If the disease progresses too much, we might need to go back to chemo for a month. But, lets not get a head of ourselves.
I hope my lack of energy doesn't translate into negativity. Because that is not the case. It's honestly, just been a very, very, draining week. Making calls, starting classes, researching trials, being on the phone for hours trying to hunt down slides, talking to doctors. But know, I feel comfortable with what I have in front of me. I just wanted to update, to let everyone know what the next few months will look like.
Plan A: PDX
* Once a week for 4 to 5 weeks in NY, to check in with O'conners team, blood work, tests, ect. (Then only once a month, after we get through the first month)
* Oral pills, 14 days on, 7 days off.
* minimal side effects (fatigue, nausea, gi issues)
* Scans every four weeks
Things that have nothing to do with cancer that I am thankful/happy about
* classes that I love
* being with friends, and welcoming fall with open arms
* starting to volunteer as a literacy aid 2-3 times a week starting in october
* signed up for a yoga class
* knowing, i'm still here. and will be, for longer than most think.
* and hair! For those going through transplant -- this is just shy of five months out.
Personally, I am taking off the next few days from cancer (can she do that?) heh. Yes, I can. Going to focus on my first paper and readings of the semester, fixing up my apartment, going to a sox game, and relax before Plan A begins.
I'll share more about the trial, next week.
Sending out my love
to all of you,
B
Friday, September 5, 2008
Keep Living.
In the last two years, I have waited. I have waited through chemo, through moving, through losing friends and jobs, I have waited. For a cure.
And maybe that is where I was wrong in all of this.
We always say in life -- live out each day. Live like it was your last. But do we really do that? Do we really tell people how much we care for them everyday? Do we really throw caution to the wind and do what WE want to do in life instead of being comfortable, do we really follow our passions?
The answer is, no. We don't. At least, I didn't. And I am still adjusting to the world of 'not waiting.' For the last two years, after each treatment, I was told, I would get my life back.
'Leave Florida Bek, you can go back after these six months of treatment.'
'Leave Boston, Rebekah, you can go back to teaching next year..'
So what happens, if after all that waiting? The same result ensues. You've waited, for better days. When there are possibly SOME days during treatment (now don't get me wrong, chemo is rough and horrible, so there are only some days) that could be right in front of you. There were times in the last two years when I thought to myself, "I'll wait til tomorrow, or next month, or next year..." to try something, to go up to someone, to call someone, to wrap my arms around someone, to get involved. I waited. For better days.
But the cure; unfortunately, doesn't always happen for everyone. So what happens to those of us where the 'cure' might not be possible? Those better days, of being done with drugs, done with hospitals, done with this life -- may never be done? What do we do?
For me, the answer to those questions is... to live. finally. and fully. I actually start to live. With everything I've got. I've waited, for two years, some may even say longer. For a break, of some kind. When the kidney disease stopped, when the cancer was over, when I could put all of this behind me, and start fresh. But, now I look at myself in the mirror and ask myself, why didn't I live before? Why didn't I feel like surrounding myself with friends all the time, shouting out to the world 'I am woman, hear me roar!' Why didn't I say 'I love you, with everything I've got in my soul." Why did I wait...
This entry, is not as much for me, as it is for all of you. For those who are just starting treatment, for those who have seen pain and heartache. I was not ready to see myself last year, for who I really was, or what I thought. But now, I am starting, or attempting to change, a bit.
I've decided I can either, wait. For 'possible' better days, maybe a trial with few side effects, maybe a time when I'm not on treatment, I could wait, and wait and wait. Or, I could find the beauty, in the places that I have it now. I can dwell on the good aspects of my life. I can focus on what I do have, instead of what I don't have in my life. And be thankful. And grateful. And live, now. Instead of wait, for another time, a better time, an easier time, to move forward.
It is true, some people deserve a break. We think, once we've endured something as horrendous as cancer, the rest of our lives should be peaceful, calm, and healing. But life, can be awfully unfair, to really incredible, beautiful people -- trust me, I've seen it happen. What I find, and WHY I find these people to be so inspiring and beautiful, though, is not the fact that they survived, or got through. But that, they took each and every day. And did wonderful, things with it.
They lived. not only during the good times. But the difficult times too.
Something, I hope to achieve, in my life. As I keep moving forward.
Something, I hope for each and every one of you.
Just remember, we are still here. Sick or not. Ill or not. Weighed down with heartache, or not. We are still here, breathing. So, maybe we need to start acting like it...
Sending all my love
to every, single, one of you.
have a beautiful weekend.
<3 B future treatment will be confirmed by the end of next week, stay tuned ;)
Lastly: To see another side of Bekah, and get a little bit of a giggle go visit JessieO's blog. And her entry on September 5th. You'll enjoy her as much as I do, I'm sure of it.
And maybe that is where I was wrong in all of this.
We always say in life -- live out each day. Live like it was your last. But do we really do that? Do we really tell people how much we care for them everyday? Do we really throw caution to the wind and do what WE want to do in life instead of being comfortable, do we really follow our passions?
The answer is, no. We don't. At least, I didn't. And I am still adjusting to the world of 'not waiting.' For the last two years, after each treatment, I was told, I would get my life back.
'Leave Florida Bek, you can go back after these six months of treatment.'
'Leave Boston, Rebekah, you can go back to teaching next year..'
So what happens, if after all that waiting? The same result ensues. You've waited, for better days. When there are possibly SOME days during treatment (now don't get me wrong, chemo is rough and horrible, so there are only some days) that could be right in front of you. There were times in the last two years when I thought to myself, "I'll wait til tomorrow, or next month, or next year..." to try something, to go up to someone, to call someone, to wrap my arms around someone, to get involved. I waited. For better days.
But the cure; unfortunately, doesn't always happen for everyone. So what happens to those of us where the 'cure' might not be possible? Those better days, of being done with drugs, done with hospitals, done with this life -- may never be done? What do we do?
For me, the answer to those questions is... to live. finally. and fully. I actually start to live. With everything I've got. I've waited, for two years, some may even say longer. For a break, of some kind. When the kidney disease stopped, when the cancer was over, when I could put all of this behind me, and start fresh. But, now I look at myself in the mirror and ask myself, why didn't I live before? Why didn't I feel like surrounding myself with friends all the time, shouting out to the world 'I am woman, hear me roar!' Why didn't I say 'I love you, with everything I've got in my soul." Why did I wait...
This entry, is not as much for me, as it is for all of you. For those who are just starting treatment, for those who have seen pain and heartache. I was not ready to see myself last year, for who I really was, or what I thought. But now, I am starting, or attempting to change, a bit.
I've decided I can either, wait. For 'possible' better days, maybe a trial with few side effects, maybe a time when I'm not on treatment, I could wait, and wait and wait. Or, I could find the beauty, in the places that I have it now. I can dwell on the good aspects of my life. I can focus on what I do have, instead of what I don't have in my life. And be thankful. And grateful. And live, now. Instead of wait, for another time, a better time, an easier time, to move forward.
It is true, some people deserve a break. We think, once we've endured something as horrendous as cancer, the rest of our lives should be peaceful, calm, and healing. But life, can be awfully unfair, to really incredible, beautiful people -- trust me, I've seen it happen. What I find, and WHY I find these people to be so inspiring and beautiful, though, is not the fact that they survived, or got through. But that, they took each and every day. And did wonderful, things with it.
They lived. not only during the good times. But the difficult times too.
Something, I hope to achieve, in my life. As I keep moving forward.
Something, I hope for each and every one of you.
Just remember, we are still here. Sick or not. Ill or not. Weighed down with heartache, or not. We are still here, breathing. So, maybe we need to start acting like it...
Sending all my love
to every, single, one of you.
have a beautiful weekend.
<3 B future treatment will be confirmed by the end of next week, stay tuned ;)
Lastly: To see another side of Bekah, and get a little bit of a giggle go visit JessieO's blog. And her entry on September 5th. You'll enjoy her as much as I do, I'm sure of it.
Wednesday, September 3, 2008
Cancer's a full-time job
Yesterday I had the lovely opportunity to wake up at six am, drive five hours to New York, and spend the day at Columbia, only to arrive home in Philly at 11pm. After last week, meeting with my Upenn doctors and people at Dana Farber, I'm feeling as if having cancer is a full-time job between the traveling, the meetings, and the time spent at hospitals.
Thank god for three day weekends. Which mine was excellent, hope yours was as well :)
Okay, the points. Get to the points... I'm updating, now instead of later on in the week (which I'll be doing that too), because we found out a TON of information yesterday from a lovely Doctor by the name of Dr. O'conner at Columbia. IF you are a relapser, and feel as though you have no where to turn. GO TO COLUMBIA. Find this man, and pick his brain. Adrienne's mother, Alison referred me to him. And he is a god send.
Basically from speaking with him, and his team. We have ruled out a few things. No allo-transplant (which is what my head was thinkin' anyway). There is no point, at the moment, to do one. We have too many options on the table. And, to put it bluntly, it would be more of a suicide mission at this point, the way my body is.
His main points of the meeting were:
* Let's build your body back up this year
* Let's stay away from chemo for as long as we can, since the cancer is used to chemo and being resistent
*Let's give you some quality of life, let you go out and live for a year or so before we throw some big guns in here.
It was a complete relief to here him speak. To talk to someone who is a doctor, and said, that I have had too much chemo over the last two years, and we need to give my body a break. Because, although I still have that 'fight' mentality, I am tired! God, I'm tired. Of chemotherapy.
So, if we're not taking the transplant or chemo route, you ask... what are you doing then Bekah?
(I'm exhausted, so bear with me talking to myself please...)
There are two options on the table for clinical trials. Two types of drugs that are new to research, not life threatening, and showing results in reductions of disease. These two classes of drugs are called H-DAC inhibitors and antibody drugs.
H-DAC verse Antibody, that is the question.
H-DAC (Phase II/I Trial)stands for: Histone deacetylase.
H-DAC are a class of enzymes that remove acetyl groups from an ε-N-acetyl lysine amino acid on a histone.
Bekah's Definition: H-DAC is a group of enzymes that basically are released into your body, to find the cancer cells. They then selectively effect (by damage or killing) a part of the cancer cell's DNA by taking out/destroying a piece of it's strand. The thought is, if a piece of the cancer's DNA can be damaged, this changes the cancer, and because it does not have the same identity, it dies off, becomes stagnant, or regresses in some form. It's almost as if the cancer is still there - but now we've taken a piece of it away (like a puzzle), without the complete puzzle. The cancer is shut off, and it can not grow without all of its parts.
CD-30 Antibodies (Phase II/I Trial)
However, antibodies kill the cancer cells in a different way. Seattle Genetics can define it a lot better than me. Their definition for antibodies are: drugs consisting of an anti-CD30 monoclonal antibody attached by a proprietary, enzyme-cleavable linker to a derivative of the highly potent class of cell-killing drugs called Auristatins. The ADC binds to receptors on target cells, undergoes rapid internalization and then releases active drug from the antibody carrier inside the cell. The linkage system is highly stable in plasma. Thus, SGN-35 is designed to have low toxicity and high specificity for antigen positive target cells.
Bekah's definition: Think of this like a magnet. The drugs are released into my body the cancer cells are a positive, the drugs (the anti-body) is a negative. They are attracted to each other like a magnet, once they find each other in my body, the drugs release a toxic agent, and poof! the cells supposedly die off.
So... those are the two types of drugs we're dealing with. I'm much more familiar with the antibodies than H-VAC drugs. So, I have to do more reading, and hopefully I can explain better after this week. Either way, both are clinical trials. And the good thing about trials is, I will be scanned almost every month I am on them; therefore, if one is not working. We move on to the next, and don't waste any time. Once we try two or three, we might need to intervene with some chemo to beat the disease back a bit. But that is doable, since I am chemo sensitive. And then, we will try another trial...The hard part about trials is to decide which one to pick. Both are offered in NYC. One is offered by Dr. O'Conner whose focus is relapsed/recurrent and refractory lymphomas.
He is also an advocate and supporter of the Alese Coco foundation, Fight 2 Win. Which is an incredible foundation dedicated and remembering the life of Alese Coco, a young Hodgkin's warrior who passed away last year.
However, I have lots of fellow Hodgkin's fighters, that I personally know, who are going through the SGN-35 trial (antibodies), that are seeing reductions in their disease. So, to say that this is a hard decision, is an understatement. At least, the more information I gather, I am slowly crossing things off the list.
So for now:
1. No transplant within this year (another auto, or an allo could still be options later on)
2. No hard chemo within the next 4-5 months
3. Focusing on clinical trials that give me a quality of life, and have minimal side effects.
Oh, and I didn't mention -- (Edit to add: only H-DAC drugs are oral pills, antibodies are infusions) some of these clinical trials are taken orally. That's right. I get to take a pill each day, no infusions. Now that is amazing. And, for now, all we can do is hope that one of these trials will reduce my disease, or keep it the same size. At this stage we are just trying to 'manage' the disease. It is not in any major organs, or bone marrow, so it really does not affect my daily life all that much.
Lastly, I apologize if this seems very confusing. It is! Even for me, who understands most of this stuff. And I truly, truly appreciate everyone who has taken the time to read up on my story. Believe it not, the more informed YOU are, the easier it is for ME. It's so nice to talk to friends or family, that have read my entry. And can fully discuss things with me, to help decide or give me their input on my next steps. You have no idea how much easier it is, if you have done your homework too ;)
Just know, I am trying to make the best decisions I possibly can, with the best doctors in the country. I'm hoping some of this information helps some of you follow my next steps. I'm headed out the door to Upenn this morning for the day, to rehash some of this stuff over with my transplant oncologist, who is sensible, understanding, and wants the best for me in the long and short run. And will have a family meeting tonight, to discuss more on this topic.
I'm hoping after this week, I will have a firm and final grasp of what I would like to attempt to do in the next three to four months, along with pursuing my Master's degree. In which I hope to walk, with my class, this May.
Alright, another day, another cancer center.
Sending all my love
to all of you,
B!
Thank god for three day weekends. Which mine was excellent, hope yours was as well :)
Okay, the points. Get to the points... I'm updating, now instead of later on in the week (which I'll be doing that too), because we found out a TON of information yesterday from a lovely Doctor by the name of Dr. O'conner at Columbia. IF you are a relapser, and feel as though you have no where to turn. GO TO COLUMBIA. Find this man, and pick his brain. Adrienne's mother, Alison referred me to him. And he is a god send.
Basically from speaking with him, and his team. We have ruled out a few things. No allo-transplant (which is what my head was thinkin' anyway). There is no point, at the moment, to do one. We have too many options on the table. And, to put it bluntly, it would be more of a suicide mission at this point, the way my body is.
His main points of the meeting were:
* Let's build your body back up this year
* Let's stay away from chemo for as long as we can, since the cancer is used to chemo and being resistent
*Let's give you some quality of life, let you go out and live for a year or so before we throw some big guns in here.
It was a complete relief to here him speak. To talk to someone who is a doctor, and said, that I have had too much chemo over the last two years, and we need to give my body a break. Because, although I still have that 'fight' mentality, I am tired! God, I'm tired. Of chemotherapy.
So, if we're not taking the transplant or chemo route, you ask... what are you doing then Bekah?
(I'm exhausted, so bear with me talking to myself please...)
There are two options on the table for clinical trials. Two types of drugs that are new to research, not life threatening, and showing results in reductions of disease. These two classes of drugs are called H-DAC inhibitors and antibody drugs.
H-DAC verse Antibody, that is the question.
H-DAC (Phase II/I Trial)stands for: Histone deacetylase.
H-DAC are a class of enzymes that remove acetyl groups from an ε-N-acetyl lysine amino acid on a histone.
Bekah's Definition: H-DAC is a group of enzymes that basically are released into your body, to find the cancer cells. They then selectively effect (by damage or killing) a part of the cancer cell's DNA by taking out/destroying a piece of it's strand. The thought is, if a piece of the cancer's DNA can be damaged, this changes the cancer, and because it does not have the same identity, it dies off, becomes stagnant, or regresses in some form. It's almost as if the cancer is still there - but now we've taken a piece of it away (like a puzzle), without the complete puzzle. The cancer is shut off, and it can not grow without all of its parts.
CD-30 Antibodies (Phase II/I Trial)
However, antibodies kill the cancer cells in a different way. Seattle Genetics can define it a lot better than me. Their definition for antibodies are: drugs consisting of an anti-CD30 monoclonal antibody attached by a proprietary, enzyme-cleavable linker to a derivative of the highly potent class of cell-killing drugs called Auristatins. The ADC binds to receptors on target cells, undergoes rapid internalization and then releases active drug from the antibody carrier inside the cell. The linkage system is highly stable in plasma. Thus, SGN-35 is designed to have low toxicity and high specificity for antigen positive target cells.
Bekah's definition: Think of this like a magnet. The drugs are released into my body the cancer cells are a positive, the drugs (the anti-body) is a negative. They are attracted to each other like a magnet, once they find each other in my body, the drugs release a toxic agent, and poof! the cells supposedly die off.
So... those are the two types of drugs we're dealing with. I'm much more familiar with the antibodies than H-VAC drugs. So, I have to do more reading, and hopefully I can explain better after this week. Either way, both are clinical trials. And the good thing about trials is, I will be scanned almost every month I am on them; therefore, if one is not working. We move on to the next, and don't waste any time. Once we try two or three, we might need to intervene with some chemo to beat the disease back a bit. But that is doable, since I am chemo sensitive. And then, we will try another trial...The hard part about trials is to decide which one to pick. Both are offered in NYC. One is offered by Dr. O'Conner whose focus is relapsed/recurrent and refractory lymphomas.
He is also an advocate and supporter of the Alese Coco foundation, Fight 2 Win. Which is an incredible foundation dedicated and remembering the life of Alese Coco, a young Hodgkin's warrior who passed away last year.
However, I have lots of fellow Hodgkin's fighters, that I personally know, who are going through the SGN-35 trial (antibodies), that are seeing reductions in their disease. So, to say that this is a hard decision, is an understatement. At least, the more information I gather, I am slowly crossing things off the list.
So for now:
1. No transplant within this year (another auto, or an allo could still be options later on)
2. No hard chemo within the next 4-5 months
3. Focusing on clinical trials that give me a quality of life, and have minimal side effects.
Oh, and I didn't mention -- (Edit to add: only H-DAC drugs are oral pills, antibodies are infusions) some of these clinical trials are taken orally. That's right. I get to take a pill each day, no infusions. Now that is amazing. And, for now, all we can do is hope that one of these trials will reduce my disease, or keep it the same size. At this stage we are just trying to 'manage' the disease. It is not in any major organs, or bone marrow, so it really does not affect my daily life all that much.
Lastly, I apologize if this seems very confusing. It is! Even for me, who understands most of this stuff. And I truly, truly appreciate everyone who has taken the time to read up on my story. Believe it not, the more informed YOU are, the easier it is for ME. It's so nice to talk to friends or family, that have read my entry. And can fully discuss things with me, to help decide or give me their input on my next steps. You have no idea how much easier it is, if you have done your homework too ;)
Just know, I am trying to make the best decisions I possibly can, with the best doctors in the country. I'm hoping some of this information helps some of you follow my next steps. I'm headed out the door to Upenn this morning for the day, to rehash some of this stuff over with my transplant oncologist, who is sensible, understanding, and wants the best for me in the long and short run. And will have a family meeting tonight, to discuss more on this topic.
I'm hoping after this week, I will have a firm and final grasp of what I would like to attempt to do in the next three to four months, along with pursuing my Master's degree. In which I hope to walk, with my class, this May.
Alright, another day, another cancer center.
Sending all my love
to all of you,
B!
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