Paying it Forward: Participation in Clinical Trials

Paying it Forward: Participation in Clinical Trials

In my last post, I described the side effects of taxane-based chemotherapy (aka taxol, paclitaxel, taxotere, or abraxane). We know that chemo-induced peripheral neuropathy (CIPN) is a large concern while undergoing these treatments. For me, as a physical therapist who uses my hands to guide my treatment, I jumped at the chance to participate in a clinical trial related to better understanding who is most likely to develop CIPN during chemo.

The study I’ll participate in is run by the University of Hawaii John A. Burns School of Medicine. It entails having several measures taken prior to taxane-based treatment (baseline), at 4-week intervals during treatment, and then several measures taken at various intervals up to 3 years post-treatment. The goal is to look at trends in which patients develop CIPN, how long CIPN lasts if developed, and if certain supplements or adjunct treatments (like acupuncture) help to prevent CIPN. In this way, doctors will be able to help patients make informed decisions to prevent this nasty side effect in the future.

Measurements taken include monofilament testing to measure protective sensation at various points on the feet, tuning fork assessment at bony points on the hands and forearm to measure vibratory sensation, a basic balance test call the Timed Up and Go which measures gait speed and safety, and several questionnaires which ask about loss of sensation, pain, sleep quality, physical activity, and general quality of life.

Even before I had officially met with my oncologist, I was hoping there would be a clinical trial that I could participate in. I feel that it’s a great way to pay it forward to others who will undergo similar treatments in the future. If they can have one less thing to worry about while navigating a super difficult time in life, then why not?

Clinical trials are very important, especially in the case of triple negative breast cancer. If enough evidence for specific treatments can be gathered, it could change the course of treatment for other patients in the future. As not much is actually known about TNBC since the tumors lack hormone or HER2 protein receptors, the exact same chemo regimen has been used to treat it for years! Thank goodness chemo is super effective! Here’s hoping new advances will be made to make treatment a little easier on everyone in the future.

If you’ve been diagnosed with cancer and you’re interested in participating in a clinical trial, ask your doctor if you qualify for any in your area. You can also go to and look up studies for your specific diagnosis and take ones that interest you with you to your next appointment to see if you do qualify.

There are many types of studies including observational studies (like the one I’m participating in) as well as randomized-controlled trials that may be testing new treatment options or options that make current treatments more effective. Remember, participation in a clinical trial is completely optional and if you start out with one, you can always opt out at any time. You don’t have to feel like a guinea pig if you don’t want to!

Feel free to reach out with any questions about joining or participating in a clinical trial!


Round 5

Round 5

We’ve hit another landmark in the active treatment phase! I say we because I absolutely could NOT do this without the support of all of you so thank you! I started a new chemotherapy regimen yesterday which is a cocktail of paclitaxel and carboplatin (TC).

TC is a weekly regimen that will last 12 weeks. Thankfully, these treatments are not “dose dense” like the adriamycin/cytoxan treatments that I just finished and everyone keeps telling me it shouldn’t be “so bad.” Judging by my current reaction to yesterday’s treatment I’d say they’re right. I honestly felt like I tolerated the AC treatments extremely well, but I feel really great today so I’m hoping it continues this way over the next few months.

“It always seems impossible until it is done.”

– Nelson Mandela

Of course, I know these treatments are cumulative so I do imagine side effects will build up as I undergo more treatment, but as usual, I’ll continue to stay as healthy as possible otherwise and pray that my body handles the rest. I feel very strongly that radically changing my diet and continuing to exercise has made ALL the difference.

Speaking of side effects – TC still compromises the immune system, but to a lesser effect than AC did (good news since Hawaii is currently seeing a major spike in COVID cases – ok, I guess I’ll admit my doctor was right to start me with AC when she did even though I was NOT happy about that at the time). TC is also less likely to cause extreme nausea/vomiting, GI upset, or mouth sores, although all are technically possible.

Unfortunately, the combo of TC is much more likely to cause symptoms of chemo-induced peripheral neuropathy (CIPN). CIPN can show up as:

  • Damage to sensory nerves which creates numbness/tingling, burning/shooting pain, or cramping in the hands and feet which can make it difficult to balance or to perform fine motor skills like buttoning buttons or writing. It also can cause sleep disturbances as pain is typically worse in the evenings/at night.
  • Damage to cranial nerves which are nerves that leave the brain in the skull and control our sensations like vision, hearing, smell and taste as well as some of the muscle control of our face and neck.
    • If the vestibulocochlear nerve is affected, a person may have hearing loss but, maybe more importantly, if the vestibular portion of that nerve is affected, a person may experience “vertigo” symptoms like dizziness or imbalance which can increase risk of falling.
    • Another cranial nerve that is commonly affected is the hypoglossal nerve which controls the movements of our tongue. This can lead to difficulty eating and swallowing.

As a physical therapist, these things obviously concern me, especially to have sensory changes in my hands, because I rely on my sensation heavily to treat my patients. There are a few pieces of good news, though – it can be prevented by taking certain supplements (I’m taking a vitamin B complex, glutamine, vitamin D, and fish oils per my oncologist’s ok), icing my hands and feet during my taxol infusion (NOT fun! I may have cried while talking to my dad on the phone because it was so painful while I was waiting for the numb to kick in – sorry, Dad!), and doing acupuncture. The other piece of good news is that if I do happen to develop these symptoms, they are not always permanent and often improve within the first 6 months after treatment is over.

It still feels good to have AC behind me so I’m in pretty good spirits and feel like there’s a light at the end of the tunnel for chemo at least. In regular life, I dropped off our ballots today – make sure you get out and vote in your primaries if you haven’t already! I’m still working on my Pilates teacher training – if you haven’t joined in for free Wednesday night Zoom Pilates, please join us! Send me an email here for the Zoom info!

Hope you all are doing well and staying safe & healthy in pandemic time! Sending lots of love & light your way ❤