I'm often asked about what medication and drugs I take. It’s hard to fathom what someone else is going through, but asking questions to gain understanding is a great way for people to try and understand what life is like for you. For most people and anyone who would walk past me on the street, they would have no idea of the journey I’m on – to be fair, that’s the way I like it. Not because I am ashamed, or embarrassed of the journey but because that way I’m not treated any differently. I deeply hate allowances being made for me and “my condition”. In fact that’s one of the best things about Santine, he’s just let me go about my life, never wrapping me in cotton wool, or ‘telling me to sit down’, ‘don’t do that’ or ‘give that here'. He lets me live life, and manage myself. He only intervenes if I ask for help and sometimes not even then!
Below is a list of my regular medications and their common side effects and how they are effecting me.
Tamoxifen Sandoz®️ 20mg
I take this once a day, every morning.
Some breast cancers need the hormone oestrogen to grow. Tamoxifen slows the growth of the cancer by blocking the effects of oestrogen in the breast.
Tamoxifen's most common side effects include; hot flushes, increased risk of blood clots, nausea, headaches and dizziness, insomnia, weight gain and fatigue.
For me, when I first started Tamoxifen (1 month after finishing Chemotherapy). The hot flushes were wild, my face was on fire 90% of the time for a good six months. My mood wasn’t greatly affected, but the emotions of anger and sadness were greatly amplified. I could cry over everything and nothing – quite often in the middle of a cry I would tell who ever was around, staring at me with equal parts concern and fear, that I’m not even sad and I don’t know why I’m crying – this still applies today, 2 years on I cry ALL THE TIME. When I’m happy, when I laugh, when I’m sad, when I’m tired, when I’m hungry. The anger and rage is intense. It comes on fast, and escalates quickly. It’s a very overwhelming feeling, but I can recognise when it’s starting to happen and I am able to stop it by walking away from what I am doing or stopping myself caring about the situation. I had a pulmonary embolism (a blood clot in my lung) we aren’t sure what caused it, but the tamoxifen definitely increased my chances of getting it.
Xarelto®️ Rivaroxaban 20mg
I take this once daily, in the morning.
Rivaroxaban is an anticoagulant. Often referred to as a ‘blood thinner’ but rivaroxaban actually works by interrupting the clot-forming process and increasing the time it takes for blood clots to form. This helps prevent blood clots from forming and stops existing clots from growing any bigger, while your body works to break them down.
Side effects include; bruising, increased risk of bleeding, longer clotting times.
If you’ve seen me in my togs you will know I am riddled with bruises head to toe. Some I can explain, most I can’t, like this one that appeared on my arm one evening. There was no memorable event that had caused it.
I bleed for a long time if I scratch myself. Quite often after a blood test, it continues to run down my arm and through my clothes long after I have left the lab.
Trastuzumab®️ (Herceptin)
I have this once every 21 days delivered IV – through my portacath.
Some breast cancers have large amounts of human epidermal growth factor receptor 2 (HER2). They are called HER2 positive cancers. HER2 makes the cancer cells grow and divide.
Trastuzumab is a targeted cancer drug called a ‘monoclonal antibody’. It works by attaching to HER2 so it stops the cancer cells from growing and dividing.
The side effects list for Trastuzumab is long, but the most common side effects experienced include; fevers, headaches, dizziness, increased risk of infection, heart failure, insomnia, weight loss or gain, rashes, fatigue, skin and nail problems, altered taste buds, high or low blood pressure, eye issues, oedema, hair thinning, hand and foot neuropathy.
Trastuzumb for me has made my hair thin. Even after my hair has grown back after chemo, it is so much thinner than pre-chemo days, but only enough for me and my hair dresser to notice, because everyone I complain to about it, says it doesn’t look it. I have altered tastebuds, I thought it was originally from the chemo, but it has persisted on long after that stopped. Most things taste slightly salty to me now, even water. It’s not enough to be overpowering or awful, but enough that I notice. Trastuzumab has also wreaked havoc on my nails. After they all were initially effected my two middle fingernails are still separated from the nail bed and my right thumb nail continually splits, right down the middle regularly.
Pertuzumab®️ (Perjeta)
I have this once every 21 days delivered IV – through my portacath
Pertuzumab is another monoclonal antibody used in combination with Trastuzumab and Docetaxel (Chemotherapy) for the treatment of HER2+ breast cancer. Pertuzumab locks onto the HER2 proteins to stop them growing and kills them.
Side effects for Pertuzumab can include; hair loss, hypersensitivity and allergic reactions, insomnia, changes in tastebuds, nail disease, inflammation on the lips and mouth, muscle pains, dizziness, constipation, diarrhoea, rashes, upper respiratory infections, joint pain, nausea and a drop in neutrophil levels.
Here you can see, combined with Trastuzumab my nails, tastebuds and hair stood no chance.
Zoladex®️ (Goserelin) 3.6mg implant
I have this once every 28 days injected lower abdomen.
Zoladex is an implant that slowly releases a hormone into your body. The implant is slowly and completely absorbed by your body, no need for removal. It is injected under the skin, lower abodomen. I use the measuring method of - the width of two fingers to the side of your belly button, then the width of two fingers below that to find the ‘spot’. We inject on alternate sides each time.
Side effects include; Hot flushes, dizziness, headaches, insomnia, nausea, hair loss, decreased libido, heart attack, stroke, vision changes and pituitary gland changes are listed as serious side effects but occur rarely.
I have just learnt at my recent oncology appointment, that the random side effects I have been having can be attributed to this drug. I feel like an old lady when I get out of bed each morning, it takes about 5mins for everything to stop being stiff and get moving again. I have constant aches in my ankles and knees and if I sit for more than 5 minutes, I’m an old lady again when I get up and move. I have stiff hands and fingers randomly and often drop things when I’m having a stiff hands day. Zoladex makes me tired and is a rapid weight gain assistant.. as if I needed help in that department! I’m working with my oncologist to test and see if the Zoladex is working properly, based on my anecdotal observations, it’s not, so we might need to adjust the dosage by bringing the frequency of the injection forward – a blood test right before my next injection combined with tracking my symptoms for the next few weeks will tell us what we are working with.
There are a few side effects that probably can’t be attributed to a specific drug, given many of them have the same side effects, for me, particularly that side effect is weight gain. So many of the medications I take have this as a known side effect, and the first six months of heavy steroid use for chemotherapy was also a contributing factor. I have been told I am very lucky, the weight I have gained is on the low side compared to most women on these medications. That doesn’t make me feel any better about the situation! It’s also very difficult to shift the weight, which I guess is also what most women experience as they move through menopause and into their 50s. When I was first diagnosed in January 2020 I weighed 78kgs, today I weigh 91.4kgs. I know that I shouldn’t dwell on such a minor thing – hello, at least I am alive! But it’s annoying and self-esteem diminishing and part of my journey, of course I get the cancer that makes you fat!
The cost of medication.
In NZ we have come a long way with funding for cancer drugs (but still not far enough) Both Trastuzumab and Pertuzumab are funded in New Zealand for women with early, HER2+ metastatic breast cancer. Which means I receive these drugs through the public health system for free. Previously, before Pharmac funded these two drugs women had to choose between financial ruin and living. In 2017 Pertuzumab (Perjeta) became funded by Pharmac. Previous to 2017 women had to pay $70,719 for a year’s worth of treatment. In 2007 Trastuzumab (Herceptin) was funded by Pharmac. Previous to 2007 women had to pay upwards of $100,000 for a years worth of treatment. I say upwards of $100,000 as Trastuzumab dosage is calculated based on weight, cruel given the fact the drug actively makes you gain weight. For the rest of the medication I need, I pay for prescriptions. Each prescription is $15 and is approximately 90 day’s worth of pills, aside from the injection which is $15 a month. In the past 4.5 months my medication has cost $80, very manageable.
This post has felt slightly like a TED talk and contains a lot of information, I’m sorry. But for those who were interested and have asked about medications before, I hope this has shed a little light on it all for you.
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