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!