I posted this on my FB secret support circle. I decided I would post it here too.
Well I have another update. This cancer life can present challenges.
As you know I started a new drug in February. I had scans in July. Turns out the drug wasn't holding the cancer back as it should. There was some progression so the oncologist switched my meds.
The drug protocol I'm now on is brand new. It was only approved by Health Canada (or whoever) a couple months ago. It involves a drug that is injected every two weeks at first, then monthly. There is also a pill which is taken twice a day for four days in a row with three days off following.
This is a drug that is not covered by the province. I had to sign forms that the oncologist filled out and they were sent to the drug company for approval. They would be provided under the company's compassionate program that provides drugs for free to people who qualify. Easy peasy, right? Well.....
So the forms were sent, I had the necessary lab work and ecg that had to be done before starting the drug. Then the waiting began. When I realized I hadn't heard anything and that my next scans hadn't been booked, I began to get concerned. I had a phone appointment with the GP Oncologist so I decided to wait and see what he had to say. Well, the first question he asked was how is the new drug working out. He was surprised to learn I was in a black hole of not knowing. He sent an email to the oncologist, the drug access navigator at the cancer centre, the rep at the drug company and maybe one other person. I heard from the rep promptly.
Because this is a protocol funded by the drug company and not the province, the injections had to be done at a private clinic. I could either pop in to the clinic in Victoria or go to the clinic and pay $80 each visit. That meant pay $80 in gas or to the local clinic. The first three shots happen in a month. I told her I couldn't do that. To add insult to injury, she was in NB and knew nothing about the island. Very frustrating. To add to the fun, her listening skills weren't great.
I also heard from the Drug Access Navigator who was less than helpful. My oncologist called to check in. Apparently the DAN hadn't let her know I'd been approved for this protocol so she could take her next steps. She told me that she will book the scans and that I will see her in person in September.
After way too much stress, some (much) swearing (not at people for the record) I'm on track. This stress was exasperated by the fact that my anxiety started to grow as I approached a month off treatment. I got the first injections (two per visit) at the cancer clinic. I'll get the next ones at my GP's clinic. No cost for either place. Next bloodwork has been scheduled. I'll get bloodwork every two weeks to start to see how I respond. Diabetes is a potential side effect so it's good to monitor things. I started taking the pills yesterday.
I hope you understand that cancer is not a one and done thing. Breast cancer in particular is marketed as pink, fluffy, sexy and as the "good" cancer. It is none of those. Even people with early stage cancers have their lives altered as a result. I will be on treatment for the rest of my life. Each new treatment protocol brings with it anxieties about how it will work. I've come to realize that side effects are part of my life. Bummer. That being said, there are worse things really.
I hope to be able to stay on this drug for some time. I've found a FB support group for people on this protocol and that is helpful.
And so it goes......
Thanks for your prayers and supports. It's much appreciated.
Well I have another update. This cancer life can present challenges.
As you know I started a new drug in February. I had scans in July. Turns out the drug wasn't holding the cancer back as it should. There was some progression so the oncologist switched my meds.
The drug protocol I'm now on is brand new. It was only approved by Health Canada (or whoever) a couple months ago. It involves a drug that is injected every two weeks at first, then monthly. There is also a pill which is taken twice a day for four days in a row with three days off following.
This is a drug that is not covered by the province. I had to sign forms that the oncologist filled out and they were sent to the drug company for approval. They would be provided under the company's compassionate program that provides drugs for free to people who qualify. Easy peasy, right? Well.....
So the forms were sent, I had the necessary lab work and ecg that had to be done before starting the drug. Then the waiting began. When I realized I hadn't heard anything and that my next scans hadn't been booked, I began to get concerned. I had a phone appointment with the GP Oncologist so I decided to wait and see what he had to say. Well, the first question he asked was how is the new drug working out. He was surprised to learn I was in a black hole of not knowing. He sent an email to the oncologist, the drug access navigator at the cancer centre, the rep at the drug company and maybe one other person. I heard from the rep promptly.
Because this is a protocol funded by the drug company and not the province, the injections had to be done at a private clinic. I could either pop in to the clinic in Victoria or go to the clinic and pay $80 each visit. That meant pay $80 in gas or to the local clinic. The first three shots happen in a month. I told her I couldn't do that. To add insult to injury, she was in NB and knew nothing about the island. Very frustrating. To add to the fun, her listening skills weren't great.
I also heard from the Drug Access Navigator who was less than helpful. My oncologist called to check in. Apparently the DAN hadn't let her know I'd been approved for this protocol so she could take her next steps. She told me that she will book the scans and that I will see her in person in September.
After way too much stress, some (much) swearing (not at people for the record) I'm on track. This stress was exasperated by the fact that my anxiety started to grow as I approached a month off treatment. I got the first injections (two per visit) at the cancer clinic. I'll get the next ones at my GP's clinic. No cost for either place. Next bloodwork has been scheduled. I'll get bloodwork every two weeks to start to see how I respond. Diabetes is a potential side effect so it's good to monitor things. I started taking the pills yesterday.
I hope you understand that cancer is not a one and done thing. Breast cancer in particular is marketed as pink, fluffy, sexy and as the "good" cancer. It is none of those. Even people with early stage cancers have their lives altered as a result. I will be on treatment for the rest of my life. Each new treatment protocol brings with it anxieties about how it will work. I've come to realize that side effects are part of my life. Bummer. That being said, there are worse things really.
I hope to be able to stay on this drug for some time. I've found a FB support group for people on this protocol and that is helpful.
And so it goes......
Thanks for your prayers and supports. It's much appreciated.
