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
Showing posts with label Plan A. Show all posts
Showing posts with label Plan A. Show all posts
Tuesday, September 23, 2008
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
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