If you’re like me, when you think of chemotherapy you think of sitting in a chair everyday getting chemotherapy through an IV, losing all of your hair, and feeling sick and weak. I was so afraid at the thought of it. When I was told that I would be doing oral chemotherapy I didn’t know what to expect. I didn’t know anything about Temodar (Temozolomide) and felt very intimidated.
What scares me the most is the lack of research supporting the efficacy of using Temodar to treat lower grade astrocytomas. The research we do have is either regarding higher grade gliomas or astrocytomas that underwent resection, neither of which apply to my situation. We think we know that it helps survival rates and we think it’s probably the best course of treatment for grade 2 astrocytoma tumors, based on the tools available. And it is currently the international standard of care for gliomas and other similar brain tumors. But the truth is that it’s a guessing game for cancer treatment.
How it works
Temodar is an alkylating agent which is a fancy way of saying it binds itself to cancer cells and stops them from making DNA. If they can’t make DNA, they can’t divide and replicate, and the cancer can’t grow. Unfortunately Temodar is basically used to keep the current cancer cells at bay and slow down growth, it isn’t expected to reverse or cure anything. So it doesn’t feel great to know I’m putting my body through all of this simply to keep my head above water, but this is what is available to me right now so it is what it is.
Side Effects
From what I’ve seen through forums and heard from my treatment team, everyone responds differently to this drug (as with many drugs). The first couple months were pretty smooth and the only difference I noticed was occasional nausea and worsened fatigue. At the end of my chemo week in the 3rd cycle, I started to get physically sick. At first I would throw up once every few days, and it quickly got to the point where it felt like every day.
While this can be expected during your chemo week and the following week, I shouldn’t still have been experiencing any vomiting 3-4 weeks later, according to my doctor. But I was. We’ve been trying all sorts of things – splitting up taking my meds rather than taking large amounts at once, trying ginger products, and trying other anti-nausea products. We ruled out that any of my other meds were the cause.
Currently I’m in a much better place – I am not throwing up very frequently and I hope it stays that way. I’m not sure what changed, maybe my body was just having an extreme reaction to the presence of this new drug in my body. No clue! And I don’t really care so long as it stays away 🙂
I started taking Omeprazol every day because I developed heart burn a couple months after starting Temodar. I do take anti-nausea meds pretty regularly but unfortunately those come with side effects. It seems like you take one med to treat one thing and then a new problem pops up. I also work closely with my psychiatrist to try and balance out the mental effects that are going on as a result of my tumor and my treatment. For example, I now have full blown ADHD which I’ve never had to deal with.
Advice
If I were to give out advice to another cancer patient about this form of chemotherapy, I would say: Lean on all of your supports. If you need the anti-nausea meds, take them. Get up and move, no matter how tired you are. If your mental health is all wacky from everything going on in your brain, tell your psychiatrist (or get one if you need one!). See your primary care doctor for check ups. If you need a nap, take one. Try not to let yourself nap for more than 1 hour at a time. If you need to be alone, be alone. Do what you need to do to keep a healthy diet.
Try to show yourself grace, this is not a walk in the park. It can be frustrating, draining, and at times disheartening. Make time to see your friends and family, even if you’re tired. Stay extra hydrated – you can never drink enough fluids when going through cancer treatments. Work collaboratively with your treatment team and keep them very informed. You’d be surprised the things that they want/need to know!
Temodar Origins
As I’ve mentioned in What Does the Research Say?, I’ve taken interest in research going on in the UK. Temodar was actually developed in the UK by Malcolm Stevens. I’d be lying if I said I didn’t research him, find his contact information, and draft an email to him… I wonder if I’ll actually send it! It was interesting to learn that there was never a big dramatic moment of discovery with this drug. It was more of a slow painful development over time. And, it was back in 1987 that it came about! It went through 2 phases of trials and was distributed to the world 10 years later. This actually makes my stomach sink. The thought that the cure to my cancer could have already been discovered, but is going through extensive testing so it’s not available to me yet?
Click here to read more about the development of Temozolomide. Some of it’s interesting, some of it isn’t 😄
♡ Hailey
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