What do you understand about Avastin, what it does and why you are on it?
The brain tumour I have seems to be an aggressive fella and it keeps on wanting to grow back. So, although Avastin is not a chemotherapy, it works by trying to starve the growth of the brain cancer by limiting the tumour’s blood supply to the tumour area and hopefully slowing down the growth of my tumour.
What worried you most about getting the treatment?
Just like anything new, I just didn’t know what to expect. I had also read on some online brain tumour forums of people who did not tolerate the treatment well. Of course, that sits on your brain but after a while those fears disappeared because I seem to tolerate the treatment very well. Once I had finished my first round of treatment, all my worries went away. At the time of this story, I have now finished 20 Avastin cycles.
What has surprised you most about your Avastin treatment?
There have been two things that have really surprised me. The first was that unlike taking oral chemotherapy, you don’t need to take any special anti-nausea medication before or after treatment. The second pleasantly surprising thing for me is that although I found taking oral chemotherapy tough, for me Avastin is so much easier to tolerate.
How long does a treatment session last?
The actual time that Avastin goes through the infusion is usually about thirty minutes with another 10 minutes either side to help flush out the intravenous equipment. But it can also depend on whether you are there to receive any other cancer treatment.
Describe a typical Avastin treatment day.
It starts off like any other day really, but it can end up being a long day by the time you leave home, finish treatment, and get home. So, for me, I try and rest up and relax as much as I can in the morning to make sure I have enough energy left in the tank for the day. I know that some people take music to listen to or take a book to read during their Avastin treatment but for me, I find that that the treatment time goes quickly so I usually just take my phone to check on what is happening in the news.
Tell us about the patient experience when you check in for your appointment?
Avastin is given as an intravenous infusion at the day therapy clinic at my cancer treatment centre. The check in process is just like any other appointment, and just like other health care appointments, things can be running on time or a bit behind depending on what has happened earlier in the day so sometimes you just need to learn to be patient until its your time to be called in.
Can you feel the Avastin going up through your veins and does it feel cold?
For me personally, I don’t really feel it going up into my veins. This is different to the contrast dye used in MRIs which I do feel going into my veins. For Avastin, the only thing I do sometimes feel going into my veins is the initial saline flush that the nurse does after the cannula goes in, but it is not painful.
What about safety checks?
One thing I really like about the Avastin treatment process is that just like on an aeroplane, there are safety checks done before you take off, or in this case before the treatment starts. At the cancer treatment centre I go to, the nurse will check my name and date of birth and then have another nurse double check that they are giving me the right medicine and together they make sure that the medicine’s expiry date hasn’t passed.
Before you start this treatment, your oncologist will have talked to you about the potential side effects of this treatment as well as how successful the treatment might be. This is important for patients and carers to understand as that is part of the informed consent process, but my advice is not to be caught up on the potential of side effects because each person is different. At each Avastin treatment, particularly for your first treatment, the nursing staff will monitor you closely to make sure you are not having any immediate reactions to the treatment. If you feel like you are having any side effects after the treatment, you should contact your specialist team.
How is the treatment given?
It is given intravenously through a vein in your arm. Unless you already have an intravenous port installed from other cancer treatment you might have received, a nurse will set up a cannula in your arm. This cannula is then connected to the machine that helps power the medicine through your veins. There will be two bags of treatment connected to the machine, the first is the actual Avastin treatment, the second is a saline solution that helps move the Avastin up the veins and then helps clear or flush the veins after the Avastin treatment has finished.
By the way, what is a cannula?
An intravenous cannula, or IV cannula, is a small length of tiny, flexible plastic tubing used to administer fluids and liquid medications to a patient through your veins.
How long does the treatment take?
Once it is all set up. The actual intravenous infusion takes about 30 minutes. The set-up process includes having a nurse doing some basic observations such as temperature and heart rate as well asking you general questions around your health and wellbeing since the last treatment. I like this as it makes more of a holistic care process. This is a good time to also ask any questions about your health and wellbeing that you might not have covered off with your specialist. Because Avastin is a specialised kind of treatment, at the cancer centre I attend, the Avastin is made up in the pharmacy on the day by the specialist pharmacists.
So sometimes there can be a delay in that process, but just be patient, everyone is doing their best to get your treatment set up on that day.
How regularly do you have the treatment?
The treatment is scheduled every two or three weeks and a bit like Groundhog Day, in our household it is always known as Avastin day because that three weekly cycle usually happens very quickly. Because the treatment is quite regular, you also start to get to know some of the nursing staff in the day centre. In a funny way, it reminds me of the TV series ‘Cheers’ where you are welcomed like a regular patron.
What advice do you have for other patients or carers about Avastin treatment?
In terms of practical things, the biggest thing is to drink lots of water before the appointment. This is for two reasons. For Avastin treatment, you will often have to give a urine sample before they can start the treatment. They take your urine sample and do a dip stick test to see if there is any protein in the urine. This is done to make sure your kidneys are working properly as this can be a side effect of the Avastin treatment.
The second reason to drink lots of water is that if you are anything like me, after taking oral chemotherapy for my brain tumour, I have found that my veins are much harder to access. So, drinking lots of water before you go to the appointment really helps fill the veins and makes it easier for the nurse to get the cannula in.
The other useful piece of advice I have been given by the nursing staff is that because treatment focuses on blood supply, it is important after your treatment to try and get up and walk around as much as possible to reduce the chance of any blood clotting after the treatment.
If you are like me and find the thought of the nurse putting the cannula into your veins a bit painful, you can ask the nurse to give you some numbing cream that you can apply the night before. It really helps! The only tricky part is that if your veins are a bit tricky like mine, then sometimes you put the numbing cream on a spot where they can’t find a vein on treatment day.
The other thing that can be helpful is that sometimes you just don’t need to pee at the time of your appointment, so you can ask the nurse to have a pee bottle that you can take with you, and you can pee at a convenient time before the appointment.
Tell us about the patient experience of turning up for an appointment.
Once you check in for your appointment, sometimes there can a little bit of a wait because the day centre staff are busy treating other patients. The staff do an amazing job so please be patient and kind to the staff. I have seen one or two patients waiting become quite agitated because things are running behind. Everyone is trying their absolute best to look after you and all the other patients.
The other thing is that like any medicine, or cancer treatment there is often a long list of potential side effects so don’t panic. Of course, side effects of treatment can occur, and it is important that you keep an eye on yourself if you notice anything strange. For my first Avastin treatment, the nursing staff kept a close eye on me just to make sure that I didn’t have any immediate side effects.
Just like other types of in-hospital treatment you will have for your brain tumour, you will see other cancer patients who can appear very unwell. Not all these patients, will have brain tumours, they could be there on the day receiving another chemotherapy, they are not just there for Avastin, and they might have a different cancer type to you. Seeing people so unwell can sometimes be confronting or upsetting but just try and remain focused on your own health.
Image was supplied by the story author, MJ.