Tiny step forward

I have so much to tell you, even though I've only moved forward a tiny bit in terms of my treatment plan. But I know more about the clinical trial, my options, what they're going to do about the ever-growing ascities and the potential timing, so I'm just bursting with news. While I still don't know what it all means for my future, information is always a good thing.

Pigtail
No, not the cute little hair braids, but the proposed solution for my ascities problem, aka my nemesis. Ascities is the protein-filled fluid the ovarian cancer cells produce in my body.

"But my tumours are all so small, how can they be producing so much fluid?" I asked. Well, apparently, all those little microscopic grains of dust that were left after my initial surgery in 2009, are big enough - even though they're still very small and don't really show up on the CT scan - to produce the fluid. These are the cells that first became resistent to the Olaparib and have now decided to rapidly produce ascities. It's sloshing around in my abdomen, causing all kinds of discomfort. It's full of protein (which I have to replace) and an amber brown colour (kind of like a beer, with a foamy protein head). Gross.

Even when I'm drained, they continue to excrete fluid and fill me back up again. In fact, I can feel a difference between when I was drained yesterday and this afternoon. Sheesh, stop peeing in the pool stupid cancer cells.

Since I had 2.8 L drained on July 15 and then needed 4.5 L extracted only 10 days later, I'm going to continue to have problems with this darned fluid. So Dr. H recommends I get a port inserted into my abdomen, with a pigtail tip sticking out of the top that connects to a bag. The fluid would continuously drain into this bag and I'd empty it myself. The top is curly like a pig's tail, hence its name.

The whole idea freaks me out a bit. While I welcome the opportunity not to undergo paracentesis every week or so, having my fluids drain outside my body makes me feel weird and like I'm sick. (Yeah, yeah, I know I am but still.) I know people do it all the time, but I've never had to have a bag before. I'll have to hide the bag in my clothes and chose my outfits with care. And once its in, no more hot tub, swimming or all that fun summer-time stuff for me. Sigh.

But it will mean I don't have to subject myself to that huge needle (gasp, I saw it yesterday for the first time!) several more times. I also means I will know when my treatment starts to work.

Regorafenib
Which brings me to the clinical trial. All the final details hadn't been worked out so I couldn't sign up for the study today. Dr. H is hoping everything will be in place later this week so I can go in and sign on the dotted line next week. Of course, I'll have to undergo all the testing to ensure I qualify. That means a EKG to check my heart, blood work and a CT scan to ensure I have a tumour larger than one centimetre to give them something to measure.

The study will evaluate the interaction of Regorafenib with other medication. So essentially, it sounds as though the Regorafenib, which cuts off the blood supply to some of cancer's key pathways is an effective drug that works and the drug company wants to see if people with other conditions (high blood pressure, heart disease, diabetes, etc.) could take it with the medication for these particular diseases. I'd be signing up to get on the Regoarafenib, which is what I really want because it's what targets the cancer cells, and agree to take other drugs and see what they'll do to me. Talk about your lab rat.

I'll provide more details about the actual study, drugs and testing protocol when I sign the papers and it all becomes official.

What if?
So what happens if my tumour hasn't grown by at least 0.3 cm and I don't qualify for the clinical trial? Well, then it means another round of chemotherapy for me. Dr. H said it's been more than six months since my last dose of chemo, so the cancer responds to the platinum-based chemo. Therefore, it's the next best solution for me. While it makes me very tired to think about that possibility, I will do what I have to do to stay here, living my life, and loving my family and friends. I am NOT going anywhere.

Once I start the Regorafinib or the chemo, the fluid should dry up. I'll be able to tell from the flow going into my bag (which I'm going to have to name). Dr. H says the Regorafinib has been known to dry up fluid within a few days and the chemo may take a cycle or two.

So that's where things stand right now. It's a lot to absorb but very little progress. I did have blood drawn for a second time today to ensure the clotting factor in my blood is adequate. I just got the call and my pigtail procedure is scheduled for next Tuesday morning. So I'm taking baby steps. Hopefully soon, we'll be able to increase the strides and get moving in the right direction.

Tina