Thanks to all of you, I have been responding very well to treatment. The treatment can eradicate my symptoms completely for several days. The goal is for me to feel the benefits of the treatment longer and longer, to where I only have to get maintenance infusions every 6 months. After that, the hope is to only have to come in once a year. This is the goal, and we were slowly getting to that point, bbbbuuuttt - I had a bit of a set back yesterday.
Before I go into that setback, I wanted to inform all of you about something really important and a part of GOOD MEDICINE. We run genetic panels on ourselves regularly, and even those with no scientific background understand the basics of genetics. I have taken genetics in-depth in college, and, although EXTREMELY difficult to pass that class, it was eye opening. Both cell biology and genetics tested me in regard to my sanity when I was taking both at the same time, but I learned a lot from those two classes alone. So I have a good knowledge of how our genetics work, and our genetics fuel how we do what we do, whether or not we get cancers, and how we metabolize medication. Knowledge in medicine truly is POWER, and luckily, I have a Fantastic team at my PCM's office that actually do good medicine. A mixture of science, homeopathic remedies, and allopathic medicine. I love them so much that I would seriously fly to see them. They do my infusions for neuropathy, and they were the first to identify that the seizures I was getting from the neuropathy were non-epileptic tonic/clonic seizures and not psychological. Anyhow, They ran a genetic panel on me in regard to medication and how I metabolize it. I am going to openly give you some of my personal information, but I think it is important that YOU arm yourself when you face certain physicians, because, in all truthfulness, you have to fight them too, and the way to fight back is to have knowledge in your brain as ammunition. Even though I know quite a bit being a kinesiologist, most doctors seem threatened when I know more about myself than they do, so having this information from my physician was what I needed.
I am what is known as an ultra-rapid metabolizer. It is very rare to metabolize medication with the pathway that my body does. The enzyme pathway is known as the CYP2D6 pathway, and if you have a decent doctor they will understand what that pathway is. I have a genetically elevated amount in regard to this pathway, which makes me an ultra-rapid metabolizer of most medications. So, what may sedate you, doesn't have the same effect on me. See, this is why I chose who I did, because she is very observant, and predicted that I would be an ultra-fast metabolizer. On the flip side to this, I don't always get the benefit of certain medications because I need such a high dose of it to make it work. My own observation has yielded that most DO's understand the pharmacogenetics report. My team - so my PCM, the treatment team that does my infusions for neuropathy, and my pain management specialist understand this report. My medical oncologist - well, I will get to that later.
So, the funny part. ALL THE MEDICATIONS I have been given DO NOT WORK. I don't metabolize them correctly. When I originally was under the care of AMG with Dr. Kuzma for pain control during chemotherapy, I was wondering why the medication he prescribed was not working AT ALL. It didn't touch my pain. The other medication he gave me did work, but it was only supposed to be used when I felt like I was going to have to go to the ER. The reason why I had to go into the ER so many times was because the medication they gave simply did not work, so I was in pain the entire time I underwent chemotherapy. I also found out that I don't metabolize any benzodiazepines, which made sense because EVERY TIME I had a seizure they wanted to give me anxiety medication but, none of it worked. At one point they gave me so much medication and couldn't figure out why I was still walking around and wasn't sedated. The doctor claimed they gave me enough to take down two horses, but yet I was still talking to him feeling exactly the same as when I came in (like shit). I already knew most of this information about myself, but now I have ammunition to prove it. Also drugs like gabapentin and lyrica do not work at all,. which is why I had to find another way to fix my neuropathy. I couldn't go the traditional route as most do. Getting my report back was quite eye opening in the realization that what I felt in my own body was actually correct. It was important to me to have this at hand because it is something I can use in regard to treating me with the correct medications that actually work right. My advice to all of you is to have your own panel done. It honestly changes the game in regard to care. Also, to add insult to injury, come to find out I more than likely had an allergic reaction to Taxol, the chemo drug that I completed 12 weeks of. It didn't present itself like a normal allergic reaction, rather, my body felt it was going to break into a million pieces when I was first dosed. I felt that pain about 2 hours after my first infusion. From the literature I read, that could be a sign of a slight allergic reaction, and to use caution with Taxol or find another drug. WELL - they didn't use caution, I did weekly taxol doses for 12 weeks, which is also rare and not really standard practice. I wish I had known this at the very beginning. It would have changed how I approached my own cancer treatment. Now I am truly stuck and suffering permanent damage from all of this.
Now, the setback and medical oncologist. Originally, I told you all that I liked my medical oncologist - well I was wrong. I have found out that most medical oncologists have a god-like complex and no matter what you tell them, they refuse to listen. My PCM sent over my pharmacogenetics report only for him not to read it. I had intense anxiety, which can fuel my neuropathy. For me it sorta starts out with intense sweating from hot flashes.. The hot flashes then kickstarts my neuropathy, After that I have roughly an hour before the muscle spasms begin to take form, and if STILL left untreated, tonic/clonic seizures. Yesterday, my neuropathy started, and we told the nurse what medications to give in order to keep it under control, and we gave them the note from my PCM in regard to how to treat it AND the genetics report. My medical oncologist wasn't even in the damn building, and failed to read anything or listen to anything I said, or read anything my PCM sent over. They waited too long and I coded. I seized for 10 minutes, had muscle spasms for several hours. My skin felt paper thin, and I can't be touched because the neuropathy at that point is completely out of control. It feels like my body is fully on fire, and when you touch my skin, it feels like you are cutting into me. That sensation is UNBEARABLE. I don't remember much of what happened, but what I do remember was seeing a full team of physicians and nurses when the seizure stopped. The medical doctors all knew it was neurological in nature, and I had to be rushed down to the ED to get treated. Luckily the DO did look at the report and the note from my PCM on how to treat the condition, and it all stopped. Simple as that. From start to finish in the ED, it only took roughly 2 hours to get me back under control. Had the medical oncologist listened to us, this could have been avoided completely.
The anger I feel is, just, ugh. This experience with medical oncology has left a bad taste in my mouth. She made some questionable decisions in regard to my care, and then she threw me out like garbage when my symptoms got out of control, yet forcing me to finish the 12 week protocol. She also made it increasingly difficult for me to get decent care. I am months behind on my herceptin treatments, which means my risk of getting cancer goes up exponentially since I am HER2 positive. The failure of the medical oncologist to listen to a damn thing I say is the most frustrating part. Because of them, I am in the position I'm in. I do place a lot of blame on the 3 medical oncologists I have seen that have failed to READ ANYTHING. It's like they can't read or listen to save their lives. I have no choice but to go through medical oncology to get herceptin, but - after a while, one gets very tired of ice skating uphill, and I am at that point. I have enough ammunition to prove what works and what doesn't - but it gets exhausting when the one person who needs to listen, refuses to do so. Because of the seizure yesterday, it set me back a bit. I hadn't had one in about 6 weeks or so. I place blame on my own medical oncologist for failing to read anything sent over, and failing to react. My condition is serious, and can cause death - I am not 100% sure that he knows this, but in all truthfulness, I am exhausted and tired of trying to explain why and what I need.
A doctor told me something at one point - he said patients that are in my position sometimes have a tendency to want to give up, because they become tired of talking to deaf ears. While I have not given up, I feel it would be easy to do so. In a sense, I want to, but I know I have to keep fighting for my rights as a patient. I had no idea that as a cancer patient, I would have to fight so hard to get decent care. The medical system seems backwards.
Well that is my depressing update. i wish I had something better, but I don't.