It's been a year since I had my last docetaxel infusion and I still haven't written anything about how I coped with the experience. To be honest, I'm not really sure I did, not well anyway. I know that not everyone reacts badly to docetaxel, but I was not so lucky. That said, I've been making notes of the various things I tried in my attempts to survive with my sanity intact.
Dry Nose and Nose Bleeds
The occasional nosebleeds and constant dry nose were the easiest side effects for me to manage. I continued to use the aloe and saline nasal spray that I bought during my FEC treatments. Giving myself a few squirts in each nostril before going to bed was sufficient most of the time.
Dry Mouth
Docetaxel game me cotton mouth, but luckily no mouth sores. I discovered that Biotène mouth wash was fantastic for making my dry mouth more like the prairies than the desert. I would have to use it a few times a day. If I had been spending more time not curled in a ball on the couch, I could have taken advantage of the other more portable products that Biotène makes. Like the nasal spray, Biotène is available at most pharmacies.
Bone Pain
For about a week after each treatment my legs felt like the bones were made of molten lava. It was probably the most pain I have ever been in. During the first round I was taking Tylenol 3's every 4 hours and was still in a lot of pain -- not to mention the subsequent pain from getting terribly constipated. My oncologist bumped me up to percocet for the next round, which were just enough to give me periods of relief. And that is really how it felt, relief. As if every other hour was spent going a million miles an hour and in pain. Then the percocet would kick in and I could finally breathe. I hated how spacey and wobbly the pain killers made me.
I did try taking Claritin before, during and after the infusions. There is some anecdotal evidence that this helps. This made no difference for me. Ibuprofen is supposed to work pretty well, but due to the anticoagulants I was taking Ibuprofen was off limits to me. In hindsight, the only other thing that may have helped would have been to hydrate more. Unfortunately liquids made me gag when I was taking docetaxel (more on that later). I should have asked for extra IV fluids. Live and learn.
Gagging on Liquids
While I was getting FEC infusions, I had no trouble staying hydrated, but with docetaxel liquids made me want to gag. At first I could overcome the urge to gag by adding my favourite True Lemon to water. Soon that wasn't enough and I needed stronger flavours. About half way through the treatment chocolate soy milk was the only thing I could get down. It was difficult to keep myself stocked up on soy milk to keep from getting dehydrated, especially on the days when I was hopped up on percocets. In addition to asking for extra IV fluids, I really should have talked to a nurse about the problems I was having.
Bone Pain, Did I Mention Bone Pain?
Aside from drugs, I did find that restorative hatha yoga at least provided a sense of rest. This is the time to master mindfulness meditation. Jon Kabat-Zinn has several free meditation podcasts on iTunes, specifically Body Breathing Meditation and Breath Meditation (see podcasts 40 and 41). I find his monotone voice is fantastic for inducing sleep.
I think the lesson of my docetaxel experience is to never hesitate to talk to your nurses when you are having problems, even if they don't seem significant to you. You are still the most important person in this story.
Dry Nose and Nose Bleeds
The occasional nosebleeds and constant dry nose were the easiest side effects for me to manage. I continued to use the aloe and saline nasal spray that I bought during my FEC treatments. Giving myself a few squirts in each nostril before going to bed was sufficient most of the time.
Dry Mouth
Docetaxel game me cotton mouth, but luckily no mouth sores. I discovered that Biotène mouth wash was fantastic for making my dry mouth more like the prairies than the desert. I would have to use it a few times a day. If I had been spending more time not curled in a ball on the couch, I could have taken advantage of the other more portable products that Biotène makes. Like the nasal spray, Biotène is available at most pharmacies.
Bone Pain
For about a week after each treatment my legs felt like the bones were made of molten lava. It was probably the most pain I have ever been in. During the first round I was taking Tylenol 3's every 4 hours and was still in a lot of pain -- not to mention the subsequent pain from getting terribly constipated. My oncologist bumped me up to percocet for the next round, which were just enough to give me periods of relief. And that is really how it felt, relief. As if every other hour was spent going a million miles an hour and in pain. Then the percocet would kick in and I could finally breathe. I hated how spacey and wobbly the pain killers made me.
I did try taking Claritin before, during and after the infusions. There is some anecdotal evidence that this helps. This made no difference for me. Ibuprofen is supposed to work pretty well, but due to the anticoagulants I was taking Ibuprofen was off limits to me. In hindsight, the only other thing that may have helped would have been to hydrate more. Unfortunately liquids made me gag when I was taking docetaxel (more on that later). I should have asked for extra IV fluids. Live and learn.
Dry, Watery Eyes
About a week after starting docetaxel my eyelashes fell out. An amazing amount of dust and grit gets into your eyes when you have no lashes. To make it even more complicated docetaxel makes your eyes dry and at the same time causes your eyes to tear constantly. It's weird, I know. If you've experienced it, you'll understand what I'm describing. The recommended coping strategy is to carry around a bottle of artificial tears. There are many different brands available. I cheaped out and bought the store brand drops that were on sale. I'm sure that there is a brand of drops out there that can work miracles. Not the store brand.
About a week after starting docetaxel my eyelashes fell out. An amazing amount of dust and grit gets into your eyes when you have no lashes. To make it even more complicated docetaxel makes your eyes dry and at the same time causes your eyes to tear constantly. It's weird, I know. If you've experienced it, you'll understand what I'm describing. The recommended coping strategy is to carry around a bottle of artificial tears. There are many different brands available. I cheaped out and bought the store brand drops that were on sale. I'm sure that there is a brand of drops out there that can work miracles. Not the store brand.
Gagging on Liquids
While I was getting FEC infusions, I had no trouble staying hydrated, but with docetaxel liquids made me want to gag. At first I could overcome the urge to gag by adding my favourite True Lemon to water. Soon that wasn't enough and I needed stronger flavours. About half way through the treatment chocolate soy milk was the only thing I could get down. It was difficult to keep myself stocked up on soy milk to keep from getting dehydrated, especially on the days when I was hopped up on percocets. In addition to asking for extra IV fluids, I really should have talked to a nurse about the problems I was having.
Aside from drugs, I did find that restorative hatha yoga at least provided a sense of rest. This is the time to master mindfulness meditation. Jon Kabat-Zinn has several free meditation podcasts on iTunes, specifically Body Breathing Meditation and Breath Meditation (see podcasts 40 and 41). I find his monotone voice is fantastic for inducing sleep.
I think the lesson of my docetaxel experience is to never hesitate to talk to your nurses when you are having problems, even if they don't seem significant to you. You are still the most important person in this story.
This set of free mindful meditation tracks was just shared with me, courtesy of the Tom Baker Cancer Centre (no, not THAT Tom Baker): http://www.cancerbridges.ca/resources/local-resources/calgary/calgary-area/guided-mindfulness-meditation/
ReplyDeleteHi, I was actually just checking out a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks : )
ReplyDeleteEmmy