Herceptin is a drug commonly used for HER2+ breast cancer which is what I have and accounts for one in 10 breast cancers. People with stage 4 cancers of all kinds have been on Herceptin for years and it seems to keep further growth at bay. I like to think of Herceptin as a soothing balm that calms the receptors into a quiet slumber resulting in less of an urge to awaken and grow.
Herceptin is usually given in conjunction with another drug such as a chemotherapy drug or other medications. My initial cancer treatment back in July of 2017 included this regime of a chemo drug and Herceptin. When scans show that cancer starts to progress, called disease progression, the medical team has to decide which next line or option of treatment to follow.
Our health care system for cancer care is called Cancer Care Ontario and is run by the provincial government. It dictates what these lines of treatment are as a standard of care for all cancer patients as well as what is covered and what is not. It determines which drugs are combined for which type of cancer and when one stops working, which line you move to next. Oncologists run down the line of treatment options for the specific cancer until there are none left.
The catch around Herceptin is that once you are given it and then taken off of it because the course of treatment did not work (as indicated by disease progression), you can never receive Herceptin again through Cancer Care Ontario. You must privately fund it yourself.
Here is the issue with our healthcare system and this particular case: You are rarely on Herceptin alone. There is always another drug accompanying it. Therefore, if there is disease progression, there is no way to know if it is the Herceptin or the other drug you are receiving that isn’t working. Herceptin can very well be keeping all of the other parts of your body safe from metasticies and as in my case, only the tumors in my lungs are growing.
I should mention that the only way to get back on Herceptin is to be in a clinical trial. Thankfully, this was my situation from September 2018 until now. I could get Herceptin every three weeks with my other oral trial drugs that I take daily.
Today we know that my lung masses continue to grow at a fast rate. My doctor predicts that left untreated, or if they continue to grow at this pace, I will have symptoms within a few months. A cough, difficulty taking deep breaths and getting winded after physical activities. If it keeps progressing, breathing will become increasingly difficult and I’ll need an oxygen tank. We are not there yet, but receiving this news put things right back to day one of being diagnosed. You wonder if this is the beginning of the end. It is a new chapter that’s for sure.
Cancer is so smart. It only took five months for these tumors to resist the medication that showed such great results in the beginning. I have to believe that we are smarter and at least able to continue to buy more time by consistently adjusting to new therapies.
But back to Herceptin. I will not be receiving this in my next line of treatment. I will only receive a true chemo drug that is infused every week for two weeks and then a week off. It comes with the same side effects I had to deal with before which is possible hair loss, neuropathy in my hands and feet, nausea and of course, dangerously low white and red blood cell counts. Infection is the biggest risk, so I will be sequestered to my home and won’t be at any public functions. Hopefully this drug shrinks the lungs. If it doesn’t, there is another trial I can go into at Princess Margaret however, it’s for a drug that I was on before and it had little results, but it is a souped up version of that drug so we will give it a try.
I need Herceptin. It can be what is keeping growth at bay throughout my body. We are looking into private clinics where I can have it infused, as even if I pay for this myself, it will not be administered in an Ontario hospital due to the restrictions on me not qualifying for it.
I’ll be connecting with my local MP about the fact that women need access to Herceptin. It’s a proven drug with excellent results but because of the way our government has set up lines of treatment for standardized cancer care, so many people do not qualify for it. It could mean the difference between life and death. It’s not even as expensive as some cancer medicines. For example, the new treatment I will be on costs $5,000 USD per cycle (2 infusions). That’s almost $10,000 a month covered by the Province and Herceptin is far less than that.
If I pay for Herceptin out of pocket, the drug company will give me a 20% discount on the cost (“You may be able to talk them into 25%” someone told me). If they’ll give me a discount, can’t they give the government a discount, too, and fund more of this drug?
Ontario is known as having an antiquated and complicated system for drug coverage and reimbursement when compared to western provinces especially. Here is an excerpt from an article by a doctor at Sunnybrook hospital: “Some of these new drugs don’t actually cure the disease or significantly prolong life, says Dr. Trudeau. Instead, they may ease symptoms and make what time remains more bearable. For cancer patients and their families, the improvements in the quality of life may seem priceless. But for policy makers, dealing with competing demands for limited health-care dollars, the benefits may not be so clear-cut and they may conclude that a pricey drug does not provide value for money.”
So there you have it – policy makers naturally make everything about the almighty dollar and not the extra months or years I may get with my family.
As usual, we will be strong and keep swimming and when all else fails, we lobby the crap out of our elected officials and advocate for better access to drugs that so many people assume is covered because we live in Canada. My example is only one of many. There are other stage 4 drugs for women that are not covered and have received press and political attention. Our voices together are much louder and I hope this paves the way for others and my children so that our broken system doesn’t let them down in the future.