Hi, I have HER2 positive cancer diagnosed late October. I have now had 2 operations to remove the tumour, lymph nodes and further tissue and am due to start chemo on the 7th January. I won’t have the information session until the day before, as it has had to be cancelled twice due to an infection, so only have a vague idea of what to expect. I do know I’m to have 3 cycles of EC followed by 3 of docetaxel, pertuzumab and herceptin. I also had a CT scan just before Christmas which showed some area on a bone that they want to check out further ?.
As you can imagine my anxiety levels are very high at the moment and I am really struggling to sleep. My fear has always been that the cancer could have spread and now this is all I can think about - especially in the night.
I’ve never posted online before but am hoping to be able to share experiences with others going through the same thing.
This is a scary time, even if you’ve had your introductory session. My CT scan showed “two areas of concern” in my central nodes (I had 19/21 nodes positive) but, when I asked about them during treatment, they were brushed aside as insignificant now. Basically, you are considered cancer-free after surgery but all these extra bits of information inform your treatment plan to try and make sure any invisible rogue cells get destroyed. You may be referred for a bone scan which is easier than a CT scan (apart from having to flush the loo twice after use because you are radioactive for 24 hours - you don’t feel it).
It’s hard to say what to expect with chemo but do join the January starters group because you’ll be able to support each other. The actual treatment is fine. Wear comfy clothes, take good company (preferably not a needle-phobe) and anything to fill the time, one-handed, for 2-5 hours. Sometimes you get a chatty bunch of patients, sometimes not. One-handed is essential unless you want to keep setting your drip’s beeper off by inhibiting the drip flow. You will become only too familiar with that annoying sound!
If you haven’t had your blood tested in the last few days, that will be your starting point. At my hospital, that meant a further wait of at least 90 minutes to get analysis, results and the pharmacy to prepare your drugs.
Prep. You will have a cannula in your hand. I was given an anti-emetic pill. After a saline flush, you’ll get an infusion including antihistamine, anti-nausea and steroid. The steroid can cause a peculiar sensation (like sitting naked in a nettle patch) if administered too quickly but it soon passes. The whole thing takes about 40 minutes.
In go the red E chemicals, along with a saline drip. Your pee will be red for several hours (bit of a shock if not warned)
Then the C, During this EC time (maybe 60-90 minutes) you can walk your drip to the loo btw
A final flush through, remove the cannula and you’re done.
The pharmacy will provide you with a goody bag of everything you might need like medicated mouthwash, laxative, anti-sickness pills and steroids for the next 4 days. The steroids get you through the most likely time for illness but can be harsh on the tummy so have some Gaviscon or Lansoprazole (prescribed - ask, if you have a sensitive tummy) to prevent discomfort.
After that, no one can really say for sure how you’ll be. Some people bounce around full of the joys of spring, some are knocked for six and feel like zombies (that was me) and it varies with each treatment. You’ll have hospital leaflets telling you of possible side effects but not everything is listed and not everyone gets every one of them - it’s just an alert. It’s essential you report back any side effects before your next treatment in case they need to adjust your doses. Your adjuvant oncology nurse or breast-care nurse should ring you weekly to see how you’re doing. Be honest, even a tiny mouth ulcer is relevant.
One thing I’d advise is that you check your thermometer is giving accurate readings now. I had a faulty (new) thermometer and ended up 4 days in hospital! Don’t take your temperature obsessively, just do what your hospital advises.
I hope that helps. I don’t want to say too much about side effects because I’m not the average example. Basically my life was misery for 4 months, yet my friend continued to work part-time! Your January Starters will be a better source of support. All the best. It’s not fun but it’s completely bearable (and that’s from a phobic with panic disorder!). With no delays, it’ll be over before Easter!