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