On the 9th of September, 2022 I was told from my GP I had Lymphoma. There was a tumor sitting on my main artery right near my throat, heart and lungs. It stopped blood flow to my heart and also cut air circulation to allow me to breathe.
On World Lymphoma Awareness Day – 15th September – I was told my diagnosis from the biopsy was that I have Non-Hodgkins Lymphoma B cell type.
My “cancer” journey began officially just over a year ago when my severe symptoms began on the 29th of August 2022, and on the 15th of September 2022 – lymphoma day – I was diagnosed with a rare Primary mediastinal B cell non-Hodgkins lymphoma (PMBCL).
Earlier in 2022, I was having really bad chest pains, I was sleeping on multiple pillows because it felt like someone was strangling me, bending over or lifting things felt like my organs were going to fall out of my chest.
I was misdiagnosed constantly with chest infections, blaming covid, everything under the blue moon. Until those pains came back even worse.
On 28/08/22 I started with those chest pains again, coughing constantly but also swelling in my face. In those two weeks, I had paramedics, multiple doctors misdiagnose my situation, sending me back and forth to various scans, blood tests to then at the end of the two weeks, my face and body was so swollen to the point I couldn’t even see or breathe properly.. when the Friday morning of the 9th of September 2022 I got called by my GP to come in to see her.
I went in by myself thinking it was another chest infection but she said I had lymphoma… and went straight to the Royal Melbourne and then into Peter Mac.
On Sunday 11/08/2022 I was rushed to the ICU to be incubated as I stopped breathing. Before that, a team was created between Peter Mac and Royal Melbourne to hold me up still with 10 pillows for the radiologist to get a biopsy for them to diagnose me. I was in ICU for 3 days, and then on the Thursday was told my diagnosis.
Overall so far I have gone through 6 treatments and on the 6th of September 2023 I’ll be doing my 7th treatment.
- 700 hours DA-R-EPOCH chemotherapy
- 200 hours ICE chemotherapy
- Immunotherapy – pembrolizumab – still continuing 3 rounds of Pre chemo for CAR T
- CAR T treatment began end of May.
- And after my 90 day scan recently the exterior of my mediastinal grew, so I am now undertaking on the 6th of September 2023 a Robotic Thymectomy.
The challenges have been that I have no control, and it has been hard because when doing treatment it shrinks and then it aggressively grows when not in treatment. I am just waiting for that day when my Doctor tells me the R word (remission).
I have been lucky as I have an amazing network of supportive people around me and the amazing professionals at Peter Mac. But my year long journey which is still going has really affected my mental health, and has tired my body a lot.
What advice would you give someone who has recently received a lymphoma/CLL diagnosis? Is there anything you wish you had known before your treatment or things that helped you along the way you want to share?
Make sure you are open to chat with psychologists and ask for the help.
How has Lymphoma Australia helped you in your lymphoma cancer journey? eg. through resources, attending webinars, patient packs, online support groups, Facebook groups, connecting with nurses, help to access trials etc.
I was connected to lymphoma through a friend of mine, and also chatting with nurses through social media.
An update – October 2023
May 26th, 2023 my T cells were infused. I had a few good days until day 3 when my fever hit. I was so excited until…. the neurotoxicity hit. First the nurses were worried that I’d have a heart attack as my heart beat was racing and blood pressure was low.. so I was rushed to the ICU. The next day was brought back to Peter Mac and then 3 hours later, when asked my doctors name, who our prime minister was I had blanks. Then needed to write a sentence and it was all scribble. I was rushed back to ICU and in there for another 3 days. This was really scary.
But after that my brain started to heal, but eating still wasn’t the best. I left on day 15 back home. I appreciate the whole team at Peter Mac and my CAR-T team because now I am 0.03 from being in remission. I AM NEARLY THERE!
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We are very grateful to you Chantelle for providing your story to give hope and inspiration to others facing lymphoma. Wishing you all the best.Â
You can follow Chantelle and her life on Instagram @chantelleasciak
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