Keeping The Door Open

I've been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I've had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others - most have clearly defined borders, mine is diffuse, it's infiltrated, it's intertwined with healthy brain tissue, it's messy, complicated, and dangerous. With a brain surgery, I could die - anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it?

Here's a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It's a pretty big deal.

This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we've conducted, there are several supplements that could also cure me, however it's exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I'm just getting started with the supplements, I'm taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they're time dependent. I constantly have to keep on my game, up on my schedule, and it's exhausting. If I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.

It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.

It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my way....it's making me upset....in fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.

I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.

Clinical Trial?!?

A random artichoke plant along the road off Green Lake. Beautiful!

I have big news, but I have to start at the beginning.......

I've been exhausted trying to navigate supplements, treatments, etc. It has gotten so bad that I haven't been sleeping well, and I'm constantly tired. After my most recent IV treatment, Danny and I realized that if we're going to fight to get healthy, we need to exercise every avenue. And yet, we don't have unlimited funds, so we have to be smart about the treatment choices. Instead of paying for IV treatments, which are good, we need to head for the hills for something great. So.......I contacted Dr Germany's clinic in Duderstadt. I've been gathering information about the various treatments available, including dendritic cell therapy, immunotherapy, and hyperthermia - all three treatments are very effective against brain cancer, especially when used in combination. After talking with Dr M, at the clinic, Danny and I were all in - incredibly excited and hopeful. We vetted the clinic and with no ill information around, we were convinced. We even started talks with family friends about acquiring personal private loans to help cover the costs.

As you can probably read, things changed. There's nothing wrong with Dr Germany's clinic, in fact we may still end up heading there, but guess what.....this is huge.....I might be accepted into a clinical trial. Let me tell you about it.....

There is a clinical trial at UCLA for low grade gliomas using dendritic cell therapy, headed by Dr Linda Liau. I would need to get another brain surgery to harvest more tumor tissue, it's important to use the most fresh tissue available. I would not have to do radiation or chemotherapy. The only cost would be whatever my insurance would not cover from the brain surgery, MRIs, blood tests, etc. Whatever the cost, it should still be cheaper than going to Germany, and with the fresh tumor tissue the treatment would be more effective. I double checked and since this is a phase IIa clinical trial, there will be no control group, no placebo, all patients would receive treatment, a dendritic cell vaccine personally created with their own tumor tissue. This is HUGE!! I still don't know if I'll get accepted into the clinical trial, but I'm very hopeful. Instead of heading to Germany, I might be headed to LA. Either way, we're headed somewhere, whether it be Germany or LA, something is happening.

I had been reading about the clinical trials in the USA, there's one currently being conducted at Swedish, here in Seattle, but it's for glioblastomas. I knew that Dr Liau was conducting a clinical trial at UCLA for low grade gliomas, but foolishly, I had assumed that I would have to do radiation or chemotherapy first, and I assumed that there would be a control group with placebos. This is fantastic, and exciting. The only reason I contacted Dr Liau is because my friend Jessica, who is also fighting a glioma, emailed me with correspondence. I figured I might as well email the good doctor in charge. I'm always interested in getting my questions answered, and thank goodness I did. I could have missed out on an amazing opportunity. Of course, I have not been accepted into the trial yet, but I'm hopeful. And if it doesn't work out, then, well, I'll just head to Germany. I have wonderful sulforaphane pills, curcumin, and all sorts of fantastic things that on their own could cure me in their own right, but truth is, Dan and I feel like we should attack everything from all directions....because....why not?!? Let's do this. Anyone interested in another head shaving........