The Next Phase of the Journey Takes Us...

Back in Lubbock from Houston. A little tired and a little cranky, but hoping to recover quickly so I can get back to work tomorrow. Some people have already heard some of the details of my check up but for those who haven't, here is the update.

If you read my last post, you know that there was a small change in both size and enhancement of a lesion in the tumor bed. In case you didn't know, that spot has been there since the initial surgery, it has just shifted in size and shape a bit over time. Dr. No Naps had me come in for advanced brain tumor imaging (MR Spectroscopy) four weeks earlier than my usual 8 weeks between scans. The scan itself was long and uncomfortable. They did a regular length MRI with and without contrast agent. Then it took at least 15 minutes waiting for the technician to change the machine set up for the spectroscopy scan, followed by the scan with another dose of contrast. If you've ever had contrast dye flushing into your veins, you know how delightful that can be. Having it twice meant twice the cold tingly up to the armpits, twice the required water to flush it out, and twice the bathroom issues later. If you ever find yourself wondering what to do on a Wednesday afternoon, I might recommend choosing a movie over an ABIT MRI. 

After the scan I knew I wouldn't see the doctor until Monday so I ordered a copy of the scan from the records office to read it over the weekend. Unfortunately, the disc I received did not have a file on it when we tried to open it on Saturday and we had to wait until Monday anyway. Yeah, that wasn't stressful at all. I didn't get paranoid or irrational about the omen or start believing the universe was warning me that I didn't want to know. By the time I got to the doctor's office Monday morning, I thought I was going to vomit. There was pretty much no amount of mindfulness meditation that was going to take care of that amount of fear but I tried anyway with minimal success. Reflecting on the experience, I'd have to say that having Jason with me was not helpful. I could feel his stress emanating from across the room as we sat there waiting for the doctor to come in. In retrospect, we really needed that clown stripper that keeps coming up in conversation. The strategy is to add the most awkward and hilarious element that can be imagined to help ease the tension. Definitely could have been useful on Monday. I think Dr. No Naps would have appreciated it too, he seems to like my sense of humor.

Dr. No Naps says that the spot has not changed in size or enhancement since the last scan. The radiology report says that the ABTI was "suggestive of mixed treatment related change and residual tumor." None of this is new information, we know that there is no remission with this type of cancer and we know that there are probably stray tumor cells in there waiting to bloom if they can. We also know that at least some of the areas that light up on the scan are scar tissue. Unfortunately, anytime there is a change (i.e., growth or enhancement), they assume it's not a good thing and want to treat it, no matter how minimal the changes are.

Dr. No Naps told us about a phase 2 clinical trial for a chemotherapy agent with FDA orphan drug designation, meaning that the FDA granted approval for this drug to be tested on specific rare illnesses. In this case the drug has had promising results in phase 1, when they tested drug dosage. In phase 2, they will administer the drug to 48 or more patients with unmethylated GBM. There is no random assignment so I will definitely get the drug and not a placebo. The oncology world is apparently enthusiastic about the use of this drug for my type of tumor because, quite frankly, this type of tumor is the most difficult to treat. Unmethylated tumors are pretty robust and tend to repair themselves when they get damaged. These cells are almost as stubborn as I am apparently. The oncology world has been working on finding things to treat these types of tumors and have come up empty, so this is an exciting opportunity.

In fact, the only thing I've heard about that has helped long term survivors of unmethylated GBM is the ketogenic diet. I've met several people more than 4-5 years out using the diet exclusively with tumors similar to mine. Add to this that research has shown the diet to be most effective when used with traditional chemo and radiation, and we have the makings of a successful clinical trial. I feel really good about my odds with this drug.

The drug itself is similar to the last chemo I was on in that it's an alkalyting agent, meaning that it attacks and damages the DNA of the cancer cells. Of course, that means the drug also attacks the DNA of other fast growing cells like hair follicles, skin cells, and the reproductive system. So if the last chemo didn't put me into menopause, this one surely will! The drug is given with IV for 3 days in a row of a 21 day cycle with blood testing, etc., in between to watch the effects of the drug on the body. Although I've been recommended for the trial, a few things must be checked to make sure I qualify (Surely I'll qualify. I mean, come on!). Once that is complete, the research nurse will contact me to set up the details. I have to remember to fly under the radar on the phone so that she doesn't realize how awesome I am. My sheer awesomeness could skew her results and I could get booted for messing up the study. That would suck. 

Assuming that they find me qualified and admit me to the study, next steps will be scheduling the first visit. I will be traveling to Houston a bit more often but I think that will be OK. I'm now just waiting and getting myself psychologically and physically fit for the reality of being on chemo again. I'm also thinking ahead to the logistical issues that might come up while also trying to stay in the present. Honestly, I am very glad to be doing something more to treat an illness that we know isn't going away. I was feeling a bit worried about just doing nothing after my last dose of the previous chemo. I also know that the side effects will be similar to what I experienced before and I know how to manage that: exercise, hydration, and laxatives. I'm pretty sure that's the recipe for all of life's issues-- especially relationships!