Cutting Our Losses

MLN4924 chemical structure

At some point I'll write more eloquently about the adventures of the marathon day that was Wednesday, but these are the bare bones facts that I'm dealing with right now. 

My ESR is 118, indicating huge amounts of inflammation. The lymphoma in my pelvis is growing. At one time it was a couple spots on each side, now those spots have connected and filled in. This area showed up as very hot on my PET Scan Wednesday, then was confirmed further with an MRI late that evening to determine if the hot spot was showing inflammation from cell death or soft tissue growth from expanding lymphoma. Very unfortunately, it's the latter. We know for very certain.

There are no new areas of involvement and the hip/pelvic area and a precarious spot on my femur bone is all we are contending with at this point, but they are spots that can't be ignored. If the lymphoma continues to grow it will break apart my bones and then I'm in trouble and a hell of a lot of pain. I've been given restrictions: no contact sports, no skiing, no running, no kickboxing - nothing that would put me at risk of fracturing that femur or shattering my pelvis. However, I'm encouraged to start lifting light weights, continue my walking and yoga, as these pieces will be vital to keeping my muscles, bones and heart strong. I met with my naturopath today to discuss more diet and supplement answers as well. I hit the machines at the gym. 

We are cutting our losses with the Revlimid and moving on. The drug did give me three wonderful months relatively pain-free and overall "normal" feeling. For this I am grateful. My doctor and I only hoped that it would hold for much longer. But it didn't, and this is where we are. This is my post-allo world. I need to continue to swing from clinical trial to clinical trial, novel drug to new drug combination to get the most time I can out of each one. I am buying quality and quantity of life here and hoping that science keeps pace. 

Next in line is a Phase I clinical trial being hosted by Dr. O at Columbia using a drug too new for a name, but still only known by call letters: MLN4924, a novel inhibitor of Nedd8-Activating Enzyme (NAE). It works in a completely different way than anything else out there. It's a first in its class type of drug targeting a specific enzyme that may be involved with cancer growth. 

After talking thoroughly with Dr. O and his team and consulting with Dr. M at Sloan, talking it through with Craig and my mom, it seems that this is the best shot right now. What's a p in the a is that it will require me to be in New York City for an extended period of time. If space is available I'll likely be staying at the American Cancer Society's Hope Lodge again, probably for about three weeks. The subsequent cycles of the drug will require less testing and bloodwork, so hopefully I'll be able to commute back and forth for treatment though it will be every few days. 

We also have the issue of our San Francisco trip and the San Francisco Writer's Conference. I'm not sure how and if we're going to be able to make this work around the start of my treatment. I have also been cast in a local production of The Vagina Monologues which starts up rehearsals next week with a performance the first week in February. Not sure if I'll be able to take part in that any longer either. There are lots of questions and logistics management that remain. Frustrating and saddening. It sucks. 

Timing is everything in these cases and rules on clinical trials can be strict. It's also unsafe to wait too long to get onto this treatment. Right now I'm dangling here on no treatment with known cancer on the move - not a comfortable place to be. 

Sure, I'm a little angry; I'm very disappointed; and I'm just thoroughly exhausted with the prospect of so quickly having to pick myself back up yet again and gear up for another new treatment and all that that will bring. But I don't have time to delve too much into these feelings as I'm in action and complementary health mode. So much to figure out.