Libby's Cancer Hope Fund

Hi, my name is John Porter and I am starting this Cancer fundraiser to bring Hope to my daughter's Cancer treatment.

My daughter (Libby) had her first child in 2018. Her birth was a happy time for our family, but only a few months later, our world fell apart when we learned that Libby had stage 3a breast cancer. She went through all the standard treatments and chose the heaviest treatment regimens at each step, hoping to wipe the cancer out.

Only one year after her initial diagnosis (spring 2020) a Pet Scan revealed an area on her sacrum that was lighting up. We were told it could be an injury, but a subsequent biopsy of the bone revealed our worst nightmare - metastatic (stage 4) breast cancer, sometimes called secondary breast cancer.

Metastatic breast cancer is a terminal disease that kills ~100% of patients diagnosed. Only 27% of those diagnosed will live 5 years with the disease and only 11% live 10 years.

Libby has er+ her2- cancer. Recently a new category has been made so she is considered her2 low, opening up other treatment options. In the 2.5 years since she was diagnosed, she has gone through both targeted treatment and chemotherapy, but neither have had had a long-lasting effect on her cancer.

We live in Canada where there are strict rules about which patients have access to certain drugs. For example, after trying one cdk4/6 inhibitor (Ibrance) Libby asked to try another cdk4/6 inhibitor (Verzenio). It took almost two years to be granted this special permission. Libby has now been told she will not be granted the hormone treatment that is usually given with Verzenio because she already 'failed it', but she failed it while on Ibrance and would like to try it with Verzenio. Her only option will be to pay for it out of pocket.

She is currently receiving a new drug (enhertu). The drug was approved for her2 low patients over a year ago in the USA. We are still waiting for the Alberta health system to include it in the standard of care, so for now she is obtaining it on a compasionate basis from the drug company.

In Canada, patients are eventually not able to try new drugs because of restrictive rules on how many treatment lines they've had. Once the drug is included in the Alberta standard of care Libby may be excluded from receiving, it even if it has proven to work while she was on compassionate supply. In this event, patients are sent to hospice and told they have no more options. The only hope in these cases is paying out of pocket at a price tag of $20,000 a month.

Libby has recently had progression into her pleural cavity which causes pleural effusion, impairing her ability to breathe. Thoracentesis is done to remove the fluid but finding a treatment that works would clear up this pleural effusion. She also has substantial bone mets which could also be cleared up with an effective treatment. In addition, she has had progression into her brain. The brain met has been treated with focused radiation and hopefully, the Enhertu has completely removed it.

Libby's daughter is now four years old. Libby works hard to be a mom despite her, now substantial impairment. Her goal is to be around longer for her family and one day be able to refocus on her dreams, goals and contribution to society.

Her biggest hope for the future is to find a treatment that can grant her stability while she waits for a hopeful clinical trial. Unfortunately, with most trials taking place in the United States there is a substantial cost for patients to do these trials, both hospital costs and the cost of living in a new location. The trial that Libby has had her eye on for over a year should be opening in 12 to 18 months. The hope of this fundraiser is to:

1. Be able to pay for treatments that the Alberta Government refuses to cover.

2. Be able to do additional tests that are not covered by the Alberta government and give more insight on which treatments will work

3. Be able to pay for clinical trials when they open.

Thank you for any amount you can donate to help our daughter live a longer and healthier life with this horrible disease.

Here is an update as of August 2nd, 2023. The Enhertu appears to have reduced or eliminated many of Libby'd bone mets which has given us hope. However, her upper leg bones in both legs are weak and she has been advised that standing or walking could result in a catastrophic break. As a result, Libby is now essentially bedridden. Libby very much wants to be at home with her daughter and husband. Home nursing from the Alberta health service is quite limited and we anticipate that we will soon need to obtain private in-home nursing to support Libby. Libby tries to be as positive as possible and continues to focus on the hope of reaching a successful trial.

Again, I thank you for any amount you can donate to help our daughter live a longer life and to be able to be with her daughter as she grows up.