I was taking an oral chemotherapy drug, Temodar, from October 2022-August 2023. My last day of Temodar was Thursday 8/31/23. With that being finished and behind me, many are wondering what comes next after chemo. Did I beat cancer? Am I now in remission? Are my tumors gone? How do I feel? Will I be doing any maintenance chemo? Can I finally give my body a break?
The tumors
Yes my tumors do appear to have shrunk slightly. No they are not gone, no I am not in remission and no I did not beat cancer. We essentially just beat the tumors into a dormant state and expect them to stay that way for an unknown amount of time. They may continue to shrink a little bit (this is from the radiation treatments last fall) but they will never go away completely.
When this thing comes back, we will treat it again with whatever treatment is recommended at that time. Depending on where it comes back, surgery could become an option later down the road but if the growth is in the same exact places, then surgery would likely continue to not be an option due to the location.
Interestingly enough, on my most recent MRI I was really only able to identify 2 lesions instead of 3. We are definitely seeing changes in my scans which we attribute to scar tissue from the radiation treatments I went through last fall. In my scans they are looking to make sure no new white spots are showing up and they are looking to make sure my existing spots don’t uptake the contrast which would indicate blood flow to the tumor areas.
Maintenance
Having completed the full 12 cycles of Temodar, there is no plan to have me on any type of other chemo or maintenance drug at this time. I will decrease my MRIs and Oncology follow up appointments to every 3 months as opposed to every 2 months. They also ask that I continue my weekly lab appointments for a few weeks following my final chemo cycle just to keep an eye on my platelets. Soon I will be able to discontinue those weekly lab appointments.
They will look at my MRI images every 3 months to watch for any progression. When the day comes that this thing starts to resurface, the good news is that there is already a new drug called Vorasidenib that would likely be an option for me. Vorasidenib targets brain tumors with the exact mutation I have and slows progression (future blog post coming). The research is very promising for this drug as it relates to my exact condition. This isn’t a drug they want to put me on right now though considering I’ve responded well to the treatments I’ve already done.
This round of cancer treatments may be behind me, but this will always be my fight. There are a few ways I will continue to fight cancer every day.
Diet
As always it’s really important to maintain a healthy, well balanced diet. Once cancer treatments are behind you it’s important to include immune boosting foods in your diet.
There is evidence that a true ketogenic diet may show benefit against astrocytoma tumors. According to a study published on the National Library of Medicine, “Dietary restriction of the high fat/low carbohydrate ketogenic diet (KD-R) reduces glycolysis and is effective in managing experimental mouse and human astrocytomas (2008)”. This type of diet is pretty challenging as it requires major lifestyle changes, but I know I can do it.
Immune boosting foods are also recommended. Dark leafy greens like spinach, kale and arugula can help boost your immune system and reduce inflammation. Hot tea can deliver polyphenols and flavonoids which can support disease fighting antioxidants. Anything citrus like lemons, limes, oranges, grapefruit, etc are great sources of vitamin C. Broccoli is great for boosting the immune system because it’s packed with vitamins A, C and E. Yogurt such as greek yogurt can help stimulate your gut and boost your immune system. It’s also a great source of vitamin D. It’s best to avoid sugary yogurts and sweeten them yourself with berries and honey. Ginger and garlic can also help boost your immune system.
Integrative medicine
The goal of my cancer treatments was to weaken the cancer which in turn weakens healthy cells as well. Now that I’m through that, it’s time to strengthen my body back up and allow it to heal. My passion for holistic products started more recently, after my cancer diagnosis. I’ve realized the importance of combining modern and alternative medicine to fight something like this and I’ve learned so much along the way.
Throughout my journey I’ve realized how much misinformation is out there which has fueled my passion to one day start my own holistic products business. Holistic products are important and can do great things for you if you have the right information and know what you are doing. I’ve learned so much about roots, herbs, vitamins and supplements over the past year and I can’t wait to share more!
Second opinions
I am in the early stages of researching some places both inside and outside of the country where I could attempt to get some second opinions from more specialized cancer treatment facilities.
The Barrow Neurological Institute is an internationally recognized brain tumor specialty center. They have a second opinion program that costs $100 to enroll. They will review your imaging and records and get back to you with their recommendation within 7 business days. Johns Hopkins Brain Tumor Center in Maryland is another one I’ve been looking at quite a bit. They tap into more emerging treatments and utilize advanced approaches.
I’m really looking for a team that has more wiggle room to explore emerging treatments and more out of the box approaches. Because of my younger age, there is a lot of fear to take too many risks or try new things with my treatment since they have to prioritize my quality of life with treating this life limiting condition – it’s a tricky balance. But if I can find a doctor who is willing to be creative and take some risks I would most definitely be up for it.
Ongoing symptoms
While the treatments are behind me, I do still have brain cancer meaning I will still experience ongoing symptoms and hardships related to the condition. My brain will always be quite a bit more sensitive than a typical healthy brain. I can expect to tire quicker and easier and stimulation can exacerbate my symptoms.
Symptoms I still actively experience today are pretty similar to the symptoms I’ve experienced since day 1 – tingling in my hands, crawling sensations down the back of my leg, neck tremors, hand pain in the morning, slight speech impairments, tics, coordination and depth perception issues… to name a few.
New cognitive symptoms have developed (I’m assuming from the radiation treatments) including slower memory recall, worsened memory recall, slower processing speed, fatigue, increased forgetfulness and memory “blanks”. These symptoms will likely stick with me due to what my brain went through.
Stay tuned for more information about the new drug Vorasidenib, my experience with Temodar, and alternative medicine/treatments.
♡ Hailey
References:
Barrow Brain and Spine. https://www.barrowbrainandspine.com/what-we-treat/brain-tumor/glioma/
Johns Hopkins Medicine. https://www.hopkinsmedicine.org/neurology-neurosurgery
Marsh, J., Mukherjee, P., & Seyfried, T. 2008. Drug/diet synergy for managing malignant astrocytoma in mice: 2-deoxy-D-glucose and the restricted ketogenic diet. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2607273/#:~:text=Therapies%20that%20target%20glycolysis%20can,experimental%20mouse%20and%20human%20astrocytomas