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

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!