The long road of treatment started with my first round of chemo on Wednesday and Thursday. It wasn’t nearly as bad as some expected, but it wasn’t a walk in the park either.
First of all, as you can tell from the title of this post, I waited quite some time from my diagnosis to start the chemo. That is not that unusual for Waldenstrom patients, who can in fact be put on the “watch and wait” regiment for years before they get treatment. (I was on involuntary “watch and wait” myself for about 8 years, while I thought all I had was autoimmune haemolytic anaemia and was unaware of the Waldenstrom in the background. This was a blessing in disguise, as I managed just fine for those 8 years).
I waited three months for two reasons: one was my insurance which needed 3 months to remove me from its own waiting period (I still had cover during those 3 months, but it was limited. If you are in South Africa and need help with your medical insurance, see rehealth.co.za or speak to me (I run the rehealth.co.za)). The second reason was that I wanted to start treatment in December when work and life in general quietens down in South Africa, so that I could focus on getting better rather than on kids, school runs, work stuff and more. My doctor wasn’t trilled with my decision, and the pathologist team thought I was nuts, but it all worked out in the end.
The day of chemo
I ended up receiving Rituximab and Bendamustine as my chemo cocktail. Rituximab isn’t actually a chemo drug, but it is rather potent and is the one that can give most problems while it is administered. Hence the dosage is spread across two days: day one for Rituximab and Day Two for bendamustine. Bendamustine is actually the mustard (nerve) gas used in the World Wars, if can believe that! And here we are injecting it into our bodies…sigh.
I arrived at 9 o’clock on a Wednesday morning at the oncology clinic, but first had to get a sonar of my spleen as my doctor wanted to use its size as a marker for the before and after treatment comparison. (It turned out my spleen is in the “upper limits of normal” in size, which for Waldenstrom is really great!).
As an aside, when I arrived at the clinic I was given a “goodie” bag, similar to one that you would recive on an airplane, compliments of the chemo drug company. It had moisturiser, lip balm etc. Craig and I thought this was hilarious…why would I want a toiletry bag branded with a chemo drug, and it isn’t as if I am going on holiday any time soon.
The Rituximab was administered from about 10am, and I was hooked up to a blood pressure monitor that took measurements every 30 minutes because Rituximab can cause BP problems. Which …wait for it…it did. About 45 minutes into the treatment I started feeling extremely ill and nauseous. I was sure I was going to vomit or fall of my chair. The oncologist nurses quickly took my BP and realised it had dropped drastically. I was really out of it by this stage, but I saw them lower the speed of the drip, and inject something into the drip to help, and the situation was fixed pretty quickly.
I was also given an antihistamine via the drip, which knocked me out (great!) and made the time go faster.
I spent about 6 hours in the chair on that first day, which actually passed rather quickly. I was extremely cold however: not only was the aircon on full blast but the Rituximab can give you chills. The nurses gave me hot water bottles, which did help.
The second day was very quick – it took maybe two hours? There was no Rituximab then, only the Bendamustine. I drove myself home, because it takes a while for the drugs to kick in.
The days after
So Thursday and Friday were the days of the chemo, and they were fine. I went home, slept, and carried on as usual.
The shit hit the fan on Friday. I woke up nauseous and vomitted at 6am, and it went downhill from there. I spent the next two days oscillating between feeling “fine but tired” and being sick to my stomach. I couldn’t hold down any food, but I carried on drinking as much as I could (most of it I vomitted, but I didn’t get too dehydrated). I slept as much as I could, and I asked my family to give me a lot of space. My Lisa kept me company! It is safe to say that I spent the two days feeling rather sorry for myself, and with good reason.
On the plus side I made a full recovery by Sunday, and even managed to get out of the house and go and have lunch at my favourite restaurant. I continued to feel fine after that, and even my energy levels seemed to recover faster than expected. I had no hair loss from the first round, and no mouth ulcers (yay!)
If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.