Let me start by making it clear that I am not sharing my experiences to scare anyone, or cause anyone more anxiety than they are already experiencing. I am hoping that by reading what someone else went through, that might help someone understand that some of these bizarre side effects that they MAY experience have also occurred to someone else. I will be talking about my side effects alone, and I will be brutally honest, I will not sugar coat anything.
Everyone is different. Some may have a lot of effects from the chemo cocktail, others may have very few, and then there are actually some lucky people who I’ve talked to that have had none. A lot depends on the particular “cocktail” someone is on. I wasn’t that lucky, but I also knew that it could have been worse, so I reminded myself that fact daily to help me cope with whatever came my way! Many years ago the side effects were much worse than today. Due to the developments so many new medications, they are greatly lessened now. My daily mantra became “one day at a time!”
I will breaking down my side effects, one treatment at a time. I would love to say that it was a fun adventure, but I would be lying! What really caught me by surprise was the fact that, for me, the side effects changed from treatment to treatment. This brought something new for me to deal with each time. I also need to add that, for me, not all side effects stayed throughout my treatment. In other words, everything that I experienced after my first treatment didn’t necessarily occur with every treatment. Some went away, others stayed. I just had to find what worked for me to deal with the effects. There are a gazillion recommendations on the internet about how to treat the various side effects. I will be the first to say, some worked for me, others worked about as well as my chances of finding a genie in the bottle on the beach that grants me three wishes!! I can dream, but it doesn’t mean they will come true! My experience might be different than what others go through, but for anyone that experiences the same things, they will know that they aren’t alone!! Also, after just stating what I did, I realize that what worked for me may not work for anyone else, but if I can provide help to just one person, I’ve accomplished the purpose behind starting The Bald and the Breastless!
My chemo cocktail was Carboplatin, Docetaxel, and Herceptin. I had 6 treatments every 3 weeks.
Although the rest of my treatments have been on Wednesdays, the first one was on a Thursday since we had to work around my surgeon’s schedule for me to have the port put in, which happened to fall out on a Thursday. I arrived at the hospital at 6:00am and was released around 10:45am, then went to my appointment at the cancer center at 11:00am. I left the cancer center around 7:00pm that evening. Boy, this girl sure knows how to have a fun day!!
Friday morning, I woke up feeling great. I was expecting to have my head hanging over the throne or a garbage can as I had previously read and heard was to be expected with chemo for my entire life, but I’m grateful to say that wasn’t the case. I got out of bed the next morning and was amazed at how I felt. Now considering that I had my port surgery the morning before, I wasn’t exactly up to climbing Mount Everest or the like (as if that would ever happen in my lifetime!) But I did take advantage of feeling well and spent the entire day to working on my cookbook and catching up with the housework that I didn’t get accomplished before surgery and chemo.
Friday, I started feeling a little puny, but I could still function normally. Early that evening, I had the Neulasta shot, that is required 24 hours after for first chemo treatment for the cocktail I was on.
Saturday morning, I woke up at 4am freezing and couldn’t get warm. I took my temperature after shivering for several minutes and found that I had a low-grade temp. of 100.6. I immediately remembered in the education on the chemo drugs, the nurse preached over and over again if your temperature ever went over 100.5, you should call the cancer center immediately, 24 hours a day. Considering that it was 4am time on a Saturday, I held off calling as instructed because I didn’t want to bother the doctor on call. A few years prior, I had an infection of some sort, (the cause never was exactly determined , other than being diagnosed with a UTI a week or so later). It was the first time in my life that I ran close to a 105 fever. I was absolutely miserable! I probably should have woke Greg and had him take me to the ER, but I fought through it. When I finally went to the doctor later in the week, after telling the nurse practitioner about waking up freezing and that I couldn’t get enough blankets on to warm up, she stressed that when you have a high fever, as much as you feel like you need to bury yourself under heavy clothes and blankets to get warm, that you need to cool down your body temperature by removing clothes, blankets, etc. and use cold compresses. This Saturday morning, since I didn’t want to wake Greg, I managed to make myself get out bed to take some Tylenol, then held a cold wet cloth on my head, moving it all over my body every couple of minutes, trying to get my body core temperature down, (everything short of getting into a cool shower). By 5am, I was freezing even more and hurt all over, so I took my temperature again. Instead of my temperature going down as I had prayed. it was up to 101..I got scared, not knowing why this happened after my first treatment, so I called the cancer centers answering service. When I explained the situation, she didn’t even tell me that someone would call me back, she put me in hold and had a Dr. on the phone within a minute of having me on hold.
The Dr. told me that considering it was my first chemo and Neulasta shot, that he was guessing that the Neulasta caused the fever because it was a very powerful drug. He gave me the okay to take Ibuprofen alternately with Tylenol and made me feel a bit more relaxed that the fever wasn’t uncommon. He told me to be sure to call if my temp didn’t go down. Thankfully, it slowly started dropping. The fever didn’t go away completely for a couple of days, but it did stay just below the 100.5 “warning temp”. The low grade fever is something that I ended up experiencing at least a couple of days after each treatment.
The worst problem came later Saturday afternoon after I finally made myself get out of bed. I had NO appetite. I mean NONE. Along with no appetite, I had no energy. NONE!! The thought of food appalled me. Over the next few days, not only did I end up spending hours in the bathroom due to severe diarrhea that hit me midday Saturday, (not really info I care to share, but I promised that I would be honest with everyone about what I went through). I had to force myself to choke down a mini Ensure. (That honestly took over an hour to get down, so no matter how long it takes, make yourself get some sort of nutrition!!) The thought of food completely disgusted me. I’m sorry to share this, but the disgust for food stuck with me for the most part throughout my entire chemo. Don’t get me wrong, I did have times when I would crave things, but it surely wasn’t anything that was good for me!
Before I was diagnosed with Breast Cancer, I would have loved to have lost weight, but I ended up losing 9lbs in the first week after chemo due to my stomach issues. My appetite has somewhat found its way back occasionally, but mainly for sweets off and on throughout the treatment, which is highly unusual for me! I knew that losing weight by starving wasn’t the way to go either. I was really afraid of losing so much weight that it would make me too weak, as I’ve heard happened to others going through it, so I followed my nurse’s advice when she gave me her lecture before I began chemotherapy. “When it comes to eating, there are times you aren’t going to feel like eating at all. If all you can make yourself eat are milkshakes, by all means, have a milkshake! We just want you to have nutrition and calories.” I can honestly say if she would have preached the importance of eating healthy only, I probably would have lost at least 25 more lbs or so, but my health could have been even more compromised due to eating absolutely nothing!!!
For the most part, throughout all my treatments, the thought of most foods revolted me. The only thing that appealed to me for the most part was chocolate or something sweet. And let me tell you, when I had my mind set on something that actually sounded good to me for the minute, if I didn’t eat it within a few minutes of the thought, my taste buds would change minutes later and I couldn’t eat it what so ever. Thank God I have a very understanding husband!! He did everything in his power to go with my wacky hour to hour changes in what I could eat, and was more than willing to prepare anything I asked for, even if it meant going to the store, placing an order, absolutely anything he could thought he could do to get me to eat something.
I hope this helps you understand your wacky changes in appetite, because for me, it truly was bizarre. I’ve loved to cook my entire life, and was actually working on writing a cookbook and starting a cooking blog when I found myself facing this journey, so to detest the taste of water, salad, bacon, (my list can go on and on), was just so crazy to me. An aunt warned me prior to nt chemok treatment that I should avoid eating anything that I considered a favorite food because the chemotherapy would ruin it for me. She watched her husband go through that very thing. And boy, that was SO true!! The smell of bacon still turns my stomach! How many people can say that?!
Another piece of advice is about something else that I’m sure that you will read about. Some people have a hard time using metal utensils when they eat. The chemo truly does give you a metallic taste in your mouth. I had that taste, but never found that the silverware made it worse. My mother, however, was different. We had to use plastic utensils for her. Just see how you feel, and if silverware makes it worse, switch to plastic. I think I mentioned earlier, even drinking water became difficult for me. I used to drink 8 glasses a day and knew that I needed water. but it had a slimy taste, regardless of whether it was bottled, out of the faucet, spring, etc. Nothing helped. I tried everything that I knew to do to choke it down, adding lemon, mint, other fruits, etc., serving it at room temperature, cold, warm, but nothing made a difference for me.
I strongly suggest before you start chemo, have your refrigerator and pantry stocked with a variety of things, to have a selection of easy prepared items to chose from when nothing else appeals to you. I will say, soups were one thing that I could occasionally eat. Puddings, jello, sherbert, instant potatoes, mac and cheese, and any other blander foods that you can thing of would be good to have on hand. For me, texture was a big problem. After loving salads my entire life, it was everything I could do to choke down a couple of bites of salad. It’s truly different for everyone, but this was my experience. I hope anyone reading this doesn’t have the disgust for food as I did.
I’m sure more things will come to me and I will come back and add them as they do. Again, I need to express again, this is my experience only!! Everyone is different! But if any of you experience any or all of these issues, remember that you aren’t alone!
Please, please feel free to contact me if you have any questions about anything that I went through!