Hello Friends and family,
As many of you know, Tracy Hsu has been very ill the past year. For those of you who do not know, my mother has stage 4, non-small cell lung cancer, with meningeal metastasis. Given the rare type of disease she has been very recently diagnosed with, the oncologist has given her very little hope.
Treatment not currently covered by OHIP is about $20,000 for the first 6 weeks
This is a timeline of significant events:
· 2014 – Diagnosed with non-small cell lung cancer Stage 1. She had surgery to remove lobe of lung containing cancerous mass, and was declared cancer-free
· 2016 Summer – Cancer had spread to her neck and fractured C6 vertebra. It was discovered that the cancer had advanced and she now had 17 tumours in her brain. She undergoes whole brain radiotherapy, as well as TKI drugs.
· 2016 Winter – Follow-up appointments show cancer is under control both in the body as well as the brain.
· 2017 Winter to early spring – She continues to show symptoms the oncologist dismissed as radiation side effects. She started losing her vision and hearing in episodes, along with episodes of confusion where she could not remember husband’s name.
· 2017 April – Follow up screening showed advancement in the cancer, swelling of the brain, and leptomeningeal metastasis. Oncologist gave her 6 months to live
· Now: None of the options that have the potential to extend her life expectancy at this point are covered under the cost of health insurance and are quite expensive. This is why this campaign exists.
Her medical costs have become a barrier that we desperately need help in overcoming
An anonymous donor will match up to $5000 for donations received by May 15th. That would guarantee the next six weeks of treatment. Every dollar will put us closer to our only chance of saving Tracy.
A more detailed recount of her cancer journey is provided below
It all started when my mother, Tracy (Tzu-Chien) Hsu Hsieh was diagnosed with lung cancer 3 years back. It had shocked us all as she had never once smoked in her life. Her doctor suggested surgery as it was a stage 1 lung cancer. It ended with her having a lobe of her lung removed and subsequently being declared cancer-free. We were all very much relieved.
Two years later, it was discovered that her cancer had returned, causing a fracture in her neck (C6), and had also spread to her brain, giving her 17 brain tumours. This was a very difficult news for us to accept, given that the doctor had told us that in my mother's case, there only a 15% chance of recurrence.
Her oncologist had told us that radiation would be the best course of action. We were told that she had a good chance, as she had a non-aggressive cancer type and there were target pills to treat her type of cancer in the body while radiation would control the cancer in the brain.
Over these last few months she has gone through a round of whole brain radiotherapy, taken target pills, as well as naturopathic and traditional eastern treatments.
The radiologist told us that her subsequent scans showed a decrease in tumour size and the cancer in her brain was under control, despite her complaints of vomitting and headaches.
When she started losing her hair
Two week ago (April 17th), she was rushed to the ER when she was unable to remember my father's name and showed other signs of serious neurological issues, including general confusion, and an inability to understand what was being spoken to her. It was a very difficult moment for all of us to see our mother rendered completely lost and confused. It was at this point that it was discovered she has Leptomeningeal disease which is where the cancer cells find there way into the fluid and lining of the brain. We were told that this was quite rare. Less than 10% of brain metastasized cancer end up as meningeal disease and it was very difficult to treat. The oncologist gave her 6 months to live, and immediately ordered another round of radiation therapy. At this point, she has been having double-vision, vomitting, diarhea and balance loss, requiring some help to walk. In reality, prognosis for leptomeningeal disease is usually measured in weeks if radiation is ineffective.
Rather than going through another round of radiation with little hope of improvement, we looked for a second opinion-- one that would at least extend her life and maintain her quality of life a while longer. We found a clinic whose licensed doctor has been using drugs off-label (approved, but not for cancer treatment) that have shown great promise in recent small clinical trials, but have yet to have a large clinical trial for approval.
During our consultation appointment, this doctor handed me a printed study done in the UK and Australia regarding the responses of patients with brain metastasized non-small cell lung cancer given optimal supportive care, and optimal supportive care with whole brain radiotherapy. The results were measured in Quality-adjusted life years, and it concluded that there was no improvement between patients who had radiation therapy as opposed to those who hadn't.
With that in mind, even though the treatment of her new doctor is still considered quite experimental, it’s the only chance we've got. This is our last hope, and we have nothing left to lose. This doctor told us that they've had great results in the clinic, with previous patients living 6 to 7 years past their 4-6 month prognosis.
This is why we need this campaign to help raise funds.
All of the drugs being offered-- while they all require doctor's prescriptions, they are considered off-label use. Therefore, our health insurance plan does not cover the costs of this treatment, despite the fact is it our only and last viable option.
As she begins treatment with this doctor, it will initially focus on keeping her intracranial pressure under control, as well as hopefully beginning to kill some of the cancer cells in the brain. Treatment is 320$ per treatment, and with her receiving treatment 3 times a week for 6 weeks to see how my mother responds.
Afterwards the worst of her symptoms come under control, the doctor wishes to switch my mother to more powerful drug developed by Dr. K. Matsumura of Berkeley, California. This drug has shown a 90% response rate, and there is a small but reasonable possibility of patients to have long-term complete remission, though it may require a lot more treatment with advanced cancer patients.
This drug, paid directly to the Berkelely Institude, would be 4000$ per cycle. with treatment being about a 2-3 week cycle.
Please kindly message me with any thoughts or questions.
I will take any messages for my mother and read them to her as her double vision makes it very difficult for her to read.
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