Chane's Rare Lung Cancer Journey

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Chane's Rare Lung Cancer Journey

Hi everyone! For those who don't know my story, I'll add as much information on here as possible. Also the rarity is quite the curveball. That's about it for now.

A space dedicated to following my rare lung cancer journey with me, where I share my experiences, going through the trials and tribulations of cancer treatments, coping with life after diagnosis at the age of 31, stories from my hospital stays and such 💜 I was diagnosed with Stage III Lymphoepithelial Carcinoma of the Lung in November 2023. This is an extremely rare lung cancer (0.92%) which I was diagnosed with at the age of 31, so not at all expected. To date, my doctors are only aware of 3 other patients in the history of South Africa who have been diagnosed with this malignancy, also referred to as PLELC. This tumour is often diagnosed in non-smoking patients of Asian descent and is highly linked to the Epstein–Barr virus, which I have tested negative for. Aside from that, genetic mutational analysis done on the tumour biopsy has shown that my cancer tested positive for a very rare genetic mutation called ROS1 (1 - 2%). It has been a wild journey. I was hospitalized for 28 days in November 2023 as my lung had collapsed due to the tumour causing blockage in my airway. I always had a high infection count that we were battling to get under control but eventually managed to do. The tumour is located in my right bronchus intermedius and incased in my pulmonary vein and lower lobe pulmonary artery, which means I am not yet a candidate for surgery. The first line of treatment was chemo to get the tumour to detach from the arteries, but this unfortunately has not accomplished as much. We will now be trying ROS1 targeted treatment. We will keep aiming for surgical removal and a lobectomy. Unfortunately with Stage III, this means the cancer has also spread locally to the lymph nodes nearby, which seem to have luckily responded quite well to the chemo. Let's see what the future holds! Thank you so much for taking the time to read this, and if you do opt in, thank you for joining me on my rare lung cancer journey 🖤

18/02/2025

Update: 3 month scan to check for response to my new treatment.
My lung is the pimp in distress meme currently.

09/02/2025

Edit: this is not really a wig guys, I'm making dumb jokes because it's a very stressful time for me and my terrible sense of humour is unfortunately my coping mechanism.

Original post: Hey guys, debuting my natural hair and of course my little fringe curl would fall flat 🥲 also discussing more topics around my cancer journey for Rare Disease Month.

01/02/2025

It's Rare Disease Month and I'm doing a thingy for Rare Diseases South Africa NPO 120-991 as part of their Insta Challenge, and participating in my own way.

My challenge: talk about my condition.

Your challenge: ignore that turkey wheeze, my lungs hate my wig sometimes and that bitch just closes on up.

Your second challenge: ignore the glitter on my shirt, that s**t is like a second skin and I somehow got contaminated.

Your third challenge: get involved and spread some awareness, it's good to do good deeds, guys!

31/01/2025

Hey everyone!

We're calling on rare disease patients, caregivers, support groups and researchers to support the rare disease community this Rare Disease Month by joining our Rareness Awareness Insta Challenge, starting tomorrow 💜

This is the Insta Challenge WA group by Rare Diseases South Africa:

https://chat.whatsapp.com/Bbz7zOlAYle8eZU0slR57G

02/01/2025

Hiiii everyone ❤️ it's been a minute! Just absolutely blasting my ring light and revving up my chair to come give you guys an update on things, specifically my new treatment called Lorlatinib. Guys, it's been a while since I've recorded a video so excuse my awkward use of the English language here and there 🥲
Spoiler: the chair did not stop.

23/10/2024

Let's talk about death and having stage 4 cancer.

16/10/2024

Soooo this is like a whole batch of catch-22s.

When Cardi B said, "Oooh, I'm going through it, bitch. I'm losing my mother🤫ing medulla" - I really felt that.

Also RE: pi***ng off someone's ancestors, not sorry and I'll do it again 🫶

24/09/2024

For newly diagnosed patients ❤️🖤 some advice based on my own experience with the big C. There are a bunch more I could not fit into this video but I hope this can be somewhat helpful, maybe.

18/09/2024

PET scan tomorrow, a little life update and mostly complaining 💜

27/08/2024

I've recently become a member of an amazing and extraordinarily valiant organization called Rare Diseases South Africa NPO 120-991 - they advocate for people like me who don't have a voice against the corporate giants, against those who dictate access to your treatment and in that, essentially have control over your life. Please follow their social media page, check out the website and keep an eye out for their fundraising events etc. We need eyes on the real issues here: life-saving treatments being refused to patients, which I feel is a complete violation of your basic human rights. Furthermore, we need more awareness on our rare disease population because they need you. We need you. And if you yourself are a rare disease patient, this is your safe haven. Support the cause, follow along and share if you'd like 💜 love you all!

Rare Diseases South Africa bridges the gap to improved quality of life for those impacted by Rare Diseases and congenital disorders through advocacy and empowerment.

06/08/2024

💜💜💜

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