Round One Rituximab
Firstly let’ start with what is Rituximab.
Although many ITP (Immune Thrombocytopenic Purpura) patients refer to rituximab as chemo or a form of chemo and heck, after hearing other people refer to it as that even I starting to tell people that rituximab is a form of chemo. But today I want to set the record straight. Rituximab is not chemo. Yes, when you receive rituximab you may be receiving that treatment in the cancer ward and yes, some chemo treatments include rituximab. Nevertheless, rituximab alone is not chemo.
Rituximab is a product that depletes one’s B cells (B-lymphocytes). These are the cells in your body that help fight off infection, bacteria or viruses. Because an ITP patient’s immune system is attacking their platelets, Rituximab is a product that has the ability to attack the immune system.
Why I chose Rituximab?
I started my journey with ITP off with prednisone and whilst I am steroid responsive, I needed big doses of prednisone to lift my platelets. Nonetheless, prednisone is not a product that you should or want to continue taking (e.g. In the long run it has horrible side effects, not to mention I don’t do well with the short term side effects of prednisone). Plus, prednisone did not keep my platelets high for long.
Next, up I tried IVIG. I wrote a blog about this “worst experience of my life” unfortunately for me IVIG was not an experience I want to do again.
So based off treatment available in Australia for ITP and my doctor’s recommendation I had two options remove my spleen (which you all know my thoughts about that) or rituximab. I suppose now you know why I chose rituximab.
Why I needed Rituximab?
Lately my health with ITP has taken a downturn. My platelets usually sit around 25,000 – 30,000 but as of late they went down to 17,000 and a week later 15,000. When you continue to allow your platelets to decrease the more you become at risk. My husband literally asked the Doctor what is the worst that can happen if her platelets keep decreasing. My Doctor’s response was very blunt “she can have a brain hemorrhage”. So with all the above in mind I decided to choose the lesser of two evils.
Preparation
In preparation for my treatment much needed to be organized. Firstly, my treatment needed to be once a week over a 4-week period. Then I am required to meet up with my hematologist once a week as a follow up from the treatment. All this time off needed to be organized with work. For me I had organized to have treatment on a Friday so I had the weekend to recover for work Monday. Then if available I booked my hematologist appointments in the morning so I can attend work after my appointment. Being sick is really an inconvenience when you work and are only allocated a number of days off. Some days I am going to have to take off without pay. However, health comes first and whilst I often put myself last this time I had to put myself first and free myself from the guilt of asking for time off or asking others to pick up my slack.
After organizing time off work I then had to organize my hospital visits for rituximab, luckily for me my family was available. Everyone will react differently to rituximab; nevertheless, it is a good idea to have some support and someone available to take you home.
Then comes the organization of home. Knowing that rituximab has to ability to leave my body defenseless, we made it a priority to do a mass spring clean of my home and car. This way limiting any chance of issues when I came home from treatment.
Lastly, in preparation I packed my bags for my day at the hospital. I packed snacks, drinks, a pillow, blanket, phone, back up phone charger and mum brought her tablet with downloaded movies.
The Day
I started the morning off early woke up a 5:30am got dressed, grabbed my packed hospital bag and picked up my mum. We arrived at the hospital around 7:20am, which was great because my appointment was not until 8:00am I like to be early to ensure I did not miss my spot.
Whilst mum and I waited in the oncology ward, I felt physically sick. I was fearful of what was about to commence however, I was here now and knew no matter how scared I felt I had to go through with the day. There was no backing out.
My name was called and I was moved into the cancer ward. The friendly nurse gave me a rundown of where the toilets were, that when treatment begins I could not leave the room and what to expect from the day. She was lovely and made me feel reassured that I was in safe hands.
I made myself comfortable on my blue recliner chair and the nurse provided me with two Panadol’s and one Claritin. She put a warm towel over my arm to bring out the veins and searched for a good vein. She advised my veins are small and deep, and then tried to administer the needle with no luck and a little pain. Because she was unsuccessful, she took the needle out and asked for some help. To my horror approached the nurse that I was terrified of when I had the IVIG, I tapped my mum and we both gave each other a look of disbelief then giggled. Thankfully, for me she was in a much better mood than last time. She got the needle in, strapped my arm up and they gave me some cortisone.
Half an hour went by before I started the rituximab treatment, the nurse said they wanted to allow time for the cortisone to work. The Rituximab started and everything was running smoothly. My temperature started at 36 degrees.
Within an hour or so of rituximab I started to get what I can only explain as the feeling of hay fever, my noise felt runny and my eyes felt a little itchy and watery. Then not long after that my head started to itch but that went away. Then I started to feel like I had the flu, I started coughing and felt phlegmy. Not long after that, I had small spots on my chest and started to struggle with my breathing. I still managed to fall asleep, as I felt so drowsy. Then my alarm went off (this is so the nurse checks on you every half hour takes you temperature and blood pressure). When she came over she noticed I had a rash over my face and up my arm and my temperature was 37.2 degrees. Immediately she stopped the treatment and called the Doctor.
The Doctor came over and suggested some cortisone and was going to start me on Phenergan however after I explained to her that baby Phenergan knocks me out she decided to wait and see how the cortisone works.
The cortisone worked wonders. One after another the symptoms I had (cough, breathing, rash etc.) started to disappear like layers. Once my rash was gone the Doctor suggested it was time to start again.
After that apart from feeling drowsy, everything ran smoothly. I finished off the rituximab and I was cleared to go home.
Mum drove me home and my husband had everything prepared so I could just come home and relax. I was still super drowsy so I slept. I did start coughing again and felt a bit tight in the chest so I took a Claritin, some Panadol and a little bit of prednisone.
I was advised to monitor my temperature and if my temperature went over 38 degrees that I needed to go to emergency. During the night, my temperature stayed at 36 degrees.
I slept all night and apart from feeling drowsy today, I feel a million dollars. Such a better outcome then the IVIG experience I had.
My top tips for anyone starting Rituximab are;
Pack a hospital bag so you can be comfortable, it’s going to be a long day
It’s ok to do your research on common side effects but know that you are in the right place if those side effects occur
Do a spring clean of your home before your treatment
Have someone available for moral support and to drive you home
Have Panadol, Claritin and maybe some prednisone on standby
Make sure you have a thermometer at home to keep a watchful eye on your temperature
Know what you can and cannot eat after rituximab (e.g., you are not allowed sushi, soft cheeses; ham anything that could potentially host bacteria – basically all the yummy stuff etc.)