Chemo #2
After my first round of chemo, my bowels didn't settle down until Thursday of week 3. This meant I only had 3 days of regular digestion before my next treatment. I was also down about 20lbs from my starting weight because of all of this. I decided, with the support of my doctors including my medical oncologist (!) to skip the Perjeta for round 2. Perjeta is one of the Her2 immunotherapies I'm taking and it's known to be the worst offender when it comes to diarrhea. It's relatively common to drop this drug because of it's horrible side effect profile.
Monday, March 17th was chemo day. All went well as it had the first time, and we were really happy to have a much shorter infusion time! I think we were only there for 3 hours, and then cold capping at home for another 4.5. It felt much more reasonable.
Unfortunately post treatment I felt really awful. It felt like my whole digestive tract had shut down, from my esophagus all the way through. I had a hard time even swallowing water. That lasted until about Friday and I was hardly able to eat anything. I finally forced myself to eat more Friday and Saturday, but that led to a horrible attack in the middle of the night Saturday which sent me to the ER on Sunday.
That whole week was a terrible experience, and I was feeling really desperate and depressed. There was no way I could do that 4 more times and survive!
I finally came around by Tuesday of week 3, and started to eat and digest, and have more energy and strength.
Chemo #3
After my experience with round 2 I talked to all my doctors to see what we could do to make round 3 go better. After a lot of pushing my medical oncologist said we could lower the does of one of the chemos by 20%. I jumped on that since I'm certain I don't need the max dose to get the necessary effect.
My integrative oncologist suggested waiting an extra week before going again. Taking a week to build strength and try to gain as much weight as I could.
I really struggled with this decision because I want to get this over with! I don't want to draw it out. I also want to keep the pressure on the cancer, not give it any extra time to grow back between treatments.
In the end taking the extra week made sense. I was weak and underweight and really needed that time to eat and build strength. And let me tell you, that 4th week was glorious. I worked out every day. I ate meals, like actual meals instead of just bite sized snacks. I slept through the night every night. I even socialized with friends! It was well worth it.
Monday, April 14th was chemo #3. We had the shorter infusion again, though we did add back in the Perjeta, but it was only 30 minutes more.
That first week was much better than the previous time. I felt bad, as expected but I didn't get that 'shut down' feeling like before. I was able to eat small amounts and stay somewhat hydrated (though I got lots of IV fluids to help). I think one of the reasons for this is related to the steroids my oncologist wants me to take prior to chemo. Because I'm fasting they have me take an antacid with the steroid. That results in me taking a bunch of antacids that I don't need! I think that was a big part of why my system shut down in round 2. I did some research and saw that a lot of people only get the steroid in their IV at infusion time so I just asked for that this time, and I think it made a big difference.
I also noticed the lower chemo dose. My energy came around faster and I didn't get as depressed. That was really nice.
I did get the same diarrhea issues as I've had each time, and as of writing this (Friday of week 2) I am still in the middle of that. I am able to eat, but my stomach explodes with bloating and pain and it disrupts my sleep and my ability to eat anything later in the day. I'm counting the days and hoping sometime next week this will clear up!
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Choices I made and things I learned at this stage |
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1) I dropped Perjeta for round 2, then added it back for round 3. I lowered the dose of Taxotere by 20% for round 3. All of these changes are to experiment and find a dose that I can tolerate for all 6 rounds without losing too much weight.
2) I went 4 weeks between treatments instead of 3. My medical oncologist was not happy about this, but I knew it was necessary.
3) I continued to fast before/during/after chemo, even though I've been losing weight. My medical oncologist harps on me about this, and blames my weight loss on this (rather than the following 3 weeks where the drugs make it impossible to eat ๐ค). I have read deeply about this and am thoroughly convinced by the science here. Though I hate the process, I won't stop doing something that might make the chemo more effective and protect my healthy cells from side effects.
4) I chose to skip the steroids on the day prior to chemo and after, and just get them on the day of the infusion in my IV. This bypassed my weakened digestive system and was a much better choice for me. Once again I just chose this myself, my medical oncologist did not offer it.
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With love and gratitude,
Elizabeth
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