Chemo Side Effects: My First Infusion

IMPORTANT: The effects of chemotherapy vary from drug to drug and patient to patient. My side effects may be very different from what others experience. If you are about to start chemo, please consider not reading this post, as I do not want to cause you unnecessary anxiety. You have the right to enter into treatment without fear or preconceived notions that may be irrelevant to your situation! Instead, read THIS.

~~~~~~~~~~~~~~~~~~~~~

This is one of those “if you wanted to know but were afraid to ask” posts. It’s not meant to scare anyone. Chemotherapy has a frightening reputation, but often what really unnerves us are the unknowns. I took a lot of notes on my treatment experience and wanted to share these in case anyone was curious. This is a much longer post than usual, so kudos to anyone who gets to the end!

~~~~~~~~~~~~~~~~~~~~~

Today, April 27th, marks the two-year anniversary of my very first chemotherapy infusion for treating my triple-positive breast cancer. I was told that the first chemo was often a shock to the system and could be exceptionally hard on the body. This was true for me — sort of — because the nature of the side effects changed from one infusion to the next. My reaction to the first infusion resulted in the greatest variety of effects, a number of which didn’t significantly reoccur with subsequent infusions, even though fatigue became much worse by my sixth and final chemo session.

In addition, when I started I was not prepared to manage all the side effects effectively, whereas with later infusions, I knew better what to expect. I was most fearful of nausea as I had been warned that if I started vomiting it would be difficult to stop and might necessitate a trip to the Emergency Room. This was not a comforting thought. I was prescribed anti-nausea medications but even they had side effects, so I resisted taking them. Eventually, as mentioned in a previous post, I switched to CBD and it provided enough relief without any noticeable side effects, calming my fears. I was grateful that I lived in a state where it was freely available.

Drip, drip, drip…

My 4-hour-long chemo infusion session consisted of :
1) Herceptin
2) Benedryl & steroids
3) Taxotere
4) Carboplatin

This was in addition to steroids that I had to take starting from the day prior through the day following the infusion. That’s a LOT of medication for someone who was unaccustomed to taking drugs at all! Because of this, I can’t say my side effects were all attributable to the chemo drugs themselves, so this should be considered a run-down of the entire “chemo experience”.

4/27/2017:
This was the day of my first chemo infusion at my cancer center, following check-in and bloodwork. I received my I.V. seated by the nurses’ station so they could watch for adverse reactions, but I tolerated the infusion well. There were no acute side effects except sleeplessness from the steroids. I was off to a promising start!

4/28/2017:
I returned to the cancer center for a Neulasta injection (stimulated white blood cell production, which took a hit from chemo) and took Claritin (anti-histamine) prophylactically as it helped with potential bone pain from the Neulasta. No nausea, but I noticed that my stomach felt better if I ate more frequently. Finished up my last steroids but they were still affecting my sleep.

By that evening, things were looking surreal, like I wasn’t completely here.

BEWARE! Great food…but not a couple of days after chemo.

4/29/2017:
My stomach started feeling funny, particularly towards the end of the day. I still wasn’t sleeping well, and I had difficulty standing in place. And that afternoon I made what ranks as one of the biggest mistakes of my life: for dinner, I ate an entire package of Palak Paneer (Trader Joe’s). It was Indian food made with spinach, paneer cheese and spices. I was hungry, yes, but it was a foolish move. I would pay for it.

Shortly after dinner, I was overtaken by a wooziness and began regretting my dinner choice. After some fearful indecision, I took an anti-nausea pill (ondansetron) and propped my head up in bed.

4/30/2017:
Things started to get serious. My energy levels were dropping, and by the evening my stomach was on fire. I felt like I’d been hit by a truck. Putting my head down made me feel sick so I tried to sleep sitting up in bed.

That night was horrible. I took two different anti-nausea medications (four hours apart), but confused their order, so the pill I took first, I should have taken second (prochlorperazine, an anti-psychotic (!) drug with anti-nausea properties). Ho ho ho. Yeah, don’t do that. My dreams were colorless with a gritty texture, like someone had smeared coffee grounds on them. My nausea didn’t improve and I paced back and forth in the living room until enough time had passed so I could take the ondansetron pill that I should have taken first. Death was looking like an attractive alternative.

5/1/2017:
I was deep in the “real” side effects by now. I had severe fatigue and a woozy stomach, no appetite, bone pain and headache (probably because I couldn’t get coffee down). Most of this day was spent in bed. I tried taking CBD to help with the nausea, since I was getting constipated from the chemo and anti-nausea meds. I got the dosing wrong on the CBD, fell asleep, waking with a gasp because I thought I’d stopped breathing. Disconcerting, to say the least. For the record, I figured the dosing out by my second infusion.

Chemo dries everything out!

5/2/2017:
My fatigue was starting to improve and my appetite was coming back, but my stomach couldn’t handle food (fun fact: chemo made the lining of my GI tract slough off). It was a frustrating situation: I was hungry but unable to eat. My throat felt raw and my skin was getting chapped. The inside of my mouth was drying out and it felt like there was gunk on my teeth even after brushing them.

Warning, TMI! I, the multi-decade vegetarian, was officially constipated. This was an miserable feeling. It took an hour of straining on the toilet to finally produce a post-chemo bowel movement, at which point I decided that I’d rather starve than go through that again. With subsequent infusions, I was able to tweak my diet and avoid a repeat. I can’t imagine going through this on a regular basis!

5/3/2017:
Finally! I got a good night’s sleep, although could have used a few hours more. My lips were severely chapped and my throat felt so swollen that swallowing was difficult. I tried eating crackers but as tender as the inside of my mouth was, it felt like I was chewing glass. Luckily, a salt-and-baking soda mouth rinse provided a little relief to the soreness. There was a lot of gunk on my teeth, probably because my GI tract was in rough shape and I was experiencing reflux.

5/4/2017:
This was my first day back to work following the infusion. The intense chemo fatigue had let up, but my throat was still sore, mouth raw and lips chapped. I was getting nosebleeds. I had a huge headache in the morning, but it eased after eating, which still required very soft and bland foods.

5/5/2017:
There was noticeably less mouth and throat pain. Still had a headache and chapped lips along with an itchy scalp. By evening my saliva had a strong bitter taste, making food less palatable.

5/6/2017:
My tongue stuck to the roof of my mouth overnight! Overall, my mouth and throat were feeling better and it was easier to swallow, but my skin was very dry and itchy, and my scalp tingled. Still, I was feeling much more normal, except that my saliva was still unpleasantly bitter.

5/7/2017:
Skin and lips were still chapped and I was having nosebleeds, but it was easier to eat crunchy foods. My saliva was still bitter but it didn’t seem as bad when I was eating. Swallowing was getting easier to do without feeling like I was taking air into my stomach, something that I realized had caused a lot of discomfort in previous days.

5/8/2017:
Most of my energy had returned. My skin and lips were dry and irritated and I had a runny nose in addition to nosebleeds. Now my mouth was able to handle carbonated drinks along with a more normal diet full of crunchy veggies. This was the first day that I was able to do a workout with weights, even though I had to keep it light.

5/9/2017:
Lips were still chapped and the inside of my mouth stuck to my gums at night. But finally I was able to eat spicier foods and the taste of my saliva had significantly improved. I was continuing to have sleep issues but I’m unsure if this was a leftover side effect or just a general reaction to the anxiety associated with cancer treatment.

5/10/2017:
Still chapped lips and dry mouth, but now I could eat whatever I wanted to with no discomfort.

5/11/2017:
My nose was bleeding much less, but — surprise, surprise — my hair started falling out. As a matter of fact, it was falling out on schedule, as I’d been told to expect hair loss about two weeks following my first chemo. So much for escaping that side effect.

5/12/2017:
Hair was coming out more rapidly. It probably wouldn’t have been noticeable to a bystander, but when I ran my fingers through it, I was left with a handful. I tried not to touch it so that I could get through my workday without creating bald spots.

5/13/2017:
Long hairs were dropping all over the place. I decided to cut my losses and have my husband clip all of it off. My next chemo session not for another five days, so I still had time to enjoy feeling good.

At this point, I had fully recovered from the chemo. In all honesty, the week after my first infusion I had no idea how I could go through it five more times. But with three weeks in between chemo sessions, I had enough of a chance to feel human again. In addition, while I would still have GI tract issues and experience severe fatigue with subsequent infusions, many of the above listed side effects didn’t return. I did, however, experience new ones: water retention, loss of taste, constant tearing of the eyes, very runny nose, loose teeth and the like.

This will pass.

My first infusion was a great lesson in being patient and taking things as they come. The side effects don’t happen all at once; it’s a cascade, with one rising up while another ebbs. When in treatment, the best you can do is to stay in the present and ride them out like waves.

The most important take-home point? Chemotherapy is doable. That doesn’t mean it’s a pleasant experience, but it’s one you can get through.

Addendum to So.Many.Pills

My last post (I Didn’t Expect THAT: So.Many.Pills) was about the overwhelming number of medications associated with cancer treatment, particularly for someone not used to taking pills. But this topic deserves a closer look…

If I had to choose one of the most frightening aspects of cancer treatment, it would be side effects. This is not like popping an aspirin for a headache. These are medications that can take a heavy toll. One of my greatest sources of anxiety was deciding whether to take a pill or try to “tough it out”.

After surgery, I was given a generic form of something approximating Norco. Some people jokingly commented that this was a “perk” of treatment, but I had read the insert that came with the medication and wanted nothing to do with it. The only reason that I took it (a single half dose) was that by the evening I had a horrible headache, more painful than anything at the surgery site and probably due to a combination of the anesthesia and not being able to drink coffee that morning.

devin-avery-552230-unsplash_cropped
Just…no.

It was a miserable night, since the half dose didn’t do much and I tossed in bed, googling interactions between my pill and ibuprofin, which is what I really wanted to take but hadn’t due to potential bleeding issues. At about 5am, satisfied that enough time had passed from my half dose of pain reliever, I took the ibuprofin and finally got some sleep. Wish I’d taken it first instead of the “oooo-you’re-so-lucky” Norco.

Nausea from chemo was another terrifying thought. The nurses had warned me not to risk it; if I started to feel queasy, take anti-nausea meds. Once vomiting sets in, I was told, it was hard to stop. Of course, the side effects associated with the meds were rather extensive and just reading the label made me anxious. There were two different meds and the idea was this: take the first one (ondonsetron) and then if I need a booster in four hours, take the second one (prochlorperazine). And then alternate like that every four hours, if necessary.

Sounds reasonable, except that a couple of nights after my first infusion I mixed up the pills and ended up taking prochlorperazine first. Prochlorperazine is an anti-psychotic (I guess, with anti-nausea properties?) and it was responsible for one of the roughest nights of my life. It was that night that I swore I’d pierced the veil between this world and the next and decided that death was a fair alternative to what I was feeling.

Somehow, I survived those first nights, but I wasn’t keen to go through that again.

alex-loup-606850-unsplash_cropped
Not a perfect solution, but better than the alternatives.

I live in a state that has legalized cannabis, and was sent a shipment of CBD cookies by one of my brothers who had used them to control nausea from migraines. I was encouraged to try them since I was told CBD didn’t have side effects. Of course, as I mentioned in the previous post, it also didn’t have clear dosing guidelines. I mean, this was a crumbly cookie – how do you dose that? My brother said something like, “I take a couple when I get a migraine.” My brother is also 6’3″. I figured I’d start with one.

Shortly after that, I fell into a weird sleep from which, an hour later, I woke with a gasp because I thought I’d stopped breathing. Mmmm, probably not the right dose for me. Four hours after I’d consumed the cookie I needed to pick up my son from school. I wasn’t high, of course, but I wasn’t feeling normal either. I made it there and back alive. It was at that point that I realized having to play mom while going through cancer treatment just plain sucked, but I digress…

Eventually I worked out a dose, about 1/5 to 1/4 of a cookie, which was 20-25 mg of CBD. This was a game-changer for me and I gratefully relied on CBD for the remainder of my treatment. Yes, I truly disliked the taste, and with the lining of my GI tract gone, eating a cookie was not first on my list but being able to calm my nausea without side effects was well worth it. It probably helped my anxiety too.

What it would have been like to go through treatment without being so fearful of what the medications were doing to me? Anxiety always got the best of me. As noted in my last post, getting to the point where I could limit the number of medications I took was key in helping me get through this experience.

While the physical effects were rough, the psychological effects were what magnified the discomfort, and that had to do with feeling so far out of my element. None of this was close to normal. Of course, my normal is not needing medications. That wasn’t happening with cancer, but once I figured out what was what and how much I could handle, treatment became more manageable.

I Didn’t Expect THAT: So.Many.Pills

I figured that there would be a lot of medication involved with cancer treatment. I just didn’t realize it would be THIS much.

I am not a big pill-taker. Besides vitamins here and there, the only thing I’d taken with any frequency had been ibuprofin, and that was only for menstrual cramps and knee pain. But then came breast cancer.

First there was Xanax, so that anxiety from my diagnosis wouldn’t cause me to lose too much weight before starting chemo. Then there were meds post-surgery: I took half a pill of generic Vicodin before switching to ibuprofin, fearful of taking anything for too long. But with chemo, I needed steroids for before/during/after to get me through the infusion’s worst effects. Then there was the chemo itself, and additional IV drugs to prevent an immediate reaction. The day after each infusion, I went in for an injection (Neulasta) to help bring my white blood cell count back up.

MyMedications
Some of my medications. Just looking at them made me feel sicker!

There were drugs to help deal with side effects. And then other drugs to handle the side effects of those drugs. I had more pills with my name on it than I’d ever had in my life. It was terrifying to me. I’d gone from being a remarkably healthy 50-something to (what felt to me like) a seriously ill patient with a life threatening disease.

In all honesty, most of these drugs I didn’t even take. While I did need the Xanax, I worked hard to reduced the dose until I parted with it completely. In its place, I meditated. After the first infusion and some unfortunate confusion regarding which anti-nausea pill to take first, resulting in one of the roughest nights of my life, I switched to CBD (cannabidiol) oil to prevent vomiting. Initially this required experimentation, as research in the area is relatively young due to an evolving legal landscape, resulting in lack of reliable dosing guidelines. But once I got that down, CBD eliminated the need for a myriad other medications because it didn’t have side effects.

Even the Claritin, which I was told to take for bone pain commonly associated with the Neulasta shots, was unnecessary. I took it for a while until I realized that I wasn’t experiencing significant pain and could do without it.

Limiting medications that weren’t completely necessary didn’t have negative physical effects and, even better, benefited me psychologically. I was constantly striving for normality, and that doesn’t come easily with cancer treatment. Pill-popping was an unfamiliar concept for me, so getting back to where I felt comfortable, taking as few medications as I could safely tolerate, was critical.

Unfortunately, I’m not quite done yet. The toughest part is over, but the last chapter of  my pill-taking experience includes a decade of the estradiol-blocking drug Tamoxifen. It’s a single pill I have to take on a daily basis to reduce the chances of cancer recurrence, and I deal by looking at it as an excuse to hydrate before getting out of bed every morning. Drink a bunch of water and, oh, slip that pill in there too.

I wish I didn’t even have to take the Tamoxifen. But it is what it is. I’m looking forward to the day when I can be completely pill-free, and trying to appreciate that after everything I’ve been through, there’s only one medication left.