Fulvestrant and Frustration

Fulvestrant (also known as Faslodex) is a treatment for estrogen positive metastatic breast cancer. It is usually given in conjunction with another drug used to treat MBC. It is received monthly through two injections into the muscle of each hip.

One notorious side effect is muscle soreness at the injection site that can last for several days. I worried about this one a lot. What I had read online painted a painful picture. The first injection cycle was a piece of cake. I wondered what all the fuss was about. I was thankful to have dodged pain.

I found out what all the fuss was about the following month when I had the next set of injections. I was still new to receiving these shots and was waffling back and forth between a clinic and hospital setting. This set was given at the hospital. I didn’t take the weight off the side getting injected. No one reminded me. I was in pain immediately. Pain radiated from my hips all the way down my legs. I spoke up but don’t remember getting much of a response. I felt sore afterward for up to a week. I was sent on my way with no reminders for aftercare.

There was plenty of anxiety around the injections that followed. When my original oncologist left the clinic and I completely switched all of my care to the hospital, I had an excellent nurse who was an expert on administering fulvestrant. Unfortunately, she has since moved on. I remember I learned a lot when she trained someone one day I received my shots. These are the tips I learned:

Tip #1 Take all the weight off the leg on the side receiving the injection. I knew this from previous instructions.

Tip #2 Stay active. Try to keep moving on the day they are given. Walk before or after. I had already been told that walking seemed to help.

Tip #3 Massage the area after injecting for a minute. It helps move the drug. It makes the injection site less sore.

Tip #4 There were also stretches very similar to a pigeon pose in yoga to help open up the hip area. Again the goal was to prevent soreness the next day. I do these every time.

I must be forgetting some, which sure would explain why side effects have flared up. Please add any additional tips by responding at the end of the post.

The last time I received my injections, a different nurse was training another nurse.

No mention of the massage.

No mention of the stretches.

I had to take over with those instructions. It frustrated me that I had to do some of the teaching. I apologize I don’t remember the nurse who was leading the training. I had not seen her before and she was in and out in a flash. She didn’t know me. However, I felt a sense of responsibility to share tips on what was useful for the patient, the one receiving the injections, because the patient carries home with them whatever side effects result from the treatment that show up that evening or the next day and stick around a day or so. It seemed like that was news to them. I hope they carry what I shared forward to other patients like me. We are more than a stunning pair of hip muscle areas.

I know my outlook is somewhat affected by what I’m calling pandemic brain. This may be a separate post. Pandemic brain is kind of like chemo brain in that thinking is affected by what is happening. Living a quarantined life is getting to me. It’s been ten weeks  . . . and three days.  I’m touchy and easily irritated by fools who are living in a world where they are the only one who matters. Nurses are taking huge risks daily as they are in close contact with those in their care. I am not directing my displeasure at them. Like I said, I’m frustrated, and some of that frustration flows over when I feel like I have to do something I ought not have to do. In this case, that means offering what I feel is information that should be standard care when training someone how to administer fulvestrant. I got the feeling my guidance was received as annoying interference.

Too bad.

I will continue to be assertive (not annoying) where my body is concerned.

It’s true that nurses must train one another about how to administer the injections correctly. I don’t have a problem with that practice. I feel their primary focus is to make sure proper procedure is followed.  Minimizing patient discomfort at the time of the shots seems to be second. This is a part of following proper procedure in my mind. The two are very much connected. A far distant third seemed to be how I felt the next day or days after. It had an “out of sight – out of mind” vibe. All three matter like the sides of an equilateral triangle. Focus fully on training the nurse and administering the injection. Next, focus completely on the patient while receiving treatment. Finally, put all of the attention on aftercare so the patient continues to feel comfortable at home.

The last few times there has been more inflammation and soreness at the injection site. I am tired of my thighs and hips being inflamed and sore. I think a different area of my hip needs to be abused. I’m sorry, I meant used.

Side effects have lately made me feel medically battered. There is always something to manage. It has become routine and most of the time not a huge deal. I wait for times when I can experience my treatments and medications with zero negative effects. I feel like I’m asking for too much.

Am I?

Scanxiety

I have had more MRIs in my life than I can count. Some yielding good news that spots were getting more and more difficult to see. Others showed minimal growth, which medically was read as consistent and stable. Sometimes I stayed with the current treatment protocol and sometimes it meant beginning something unknown to me.

Almost every MRI for me brought on its share of anxiety because I have some degree of claustrophobia. Waiting for results also brings its share of stress. The machine itself is long and tubular with enough room to slide an average sized body in and out. It doesn’t look too impossible when I’m standing outside of it and plucking up my courage. Things change when the technicians strap me in, give me a panic ball to squeeze since they’ll be in a different room for the test, and roll me into the tube. Suddenly, I am alone. My vision is limited to sterile white and I can see only an inch or two above my face. I can’t get out on my own and that’s when the trapped feeling starts growing. The strapped in part is so unsettling for me. Breathing is going to be impossible in there, especially when I am to listen to instructions on when to breathe, hold my breath, and then relax. A contrast dye is shot into me that makes my heart and pulse race. It makes me feel a little sick, and then I hear the “take a breath” prompt. Sometimes I just can’t get it done in time because of my racing heart, which makes me feel like I’ve screwed up the most informative part of the test. Panic, panic, panic. I’m stressed out. It goes downhill from there. Much to my surprise, the test always gathers usable information.

I have heard from a few people lately who have been nervous about scans and various tests. I doubt how I’ve described things for me has lessened those feelings for them. Sorry. Others haven’t been reassuring or helpful either from what’s been shared. Instead anxiety levels have risen as “friends” have told them how awful these things are. Do they really feel this is helpful? Newsflash – it isn’t! Saying something is hard is honest. You can still be honest by providing a couple of reassuring comments.

My hope is something that I share about how I’ve dealt with scans, tests, etc. will be helpful for anyone with scanxiety. Scans have gotten easier with each passing one. I know that it’s going to be tough to catch my breath after the contrast injection and I can mentally prepare for it. If it takes me an extra second or two to start a breath hold, that’s what I now do and I don’t worry about it. The following are things that work for me, and they may work for others.

Tip #1: I like music piped in to relax me. This is a common practice. However, if music is unavailable I know what songs I can sing through in my head to pass the time.

Tip #2: I like a washcloth over my eyes with just a peeking place available so I still know where I am without having to be reminded the whole time.

Tip #3: Lavender essential oil on gauze placed on my chest provides enough aromatherapy for a calming effect. I suggest bringing your own if you are unsure if your facility provides this for patients.

Tip #4: Having the same technicians has a calming effect on me, too. My favorite tech actually hugs me when she sees me and that lets me know I am in a safe place. I also like a lot of communication and encouragement while I’m in the machine. It’s good for me to know when I’m halfway done and when I’m close to finishing.

Tip #5: Sometimes I try to reframe the overwhelming, closed in, trapped feeling with one where the machine is my own little personal cocoon where I am kept snuggly and protected for a short time. It’s a great place for prayers. I call on loved ones, spirits, and angels to be with me and protect me. Those are very warm and comforting thoughts.

Tip #6: It goes a lot easier if I take the time to have my port accessed beforehand than just settle for multiple arm pokes that are more like a hit and miss game of find a vein. Using my port doesn’t make my heart race or feel sick when the contrast dye is administered.

Tip #7: In general, the breath holds go much better if I count very slowly in my head until they are done. Some holds are short, some are up to thirty seconds. The long holds do get hard for me, but the counting lets me know that they have to be almost over.

Tip #8: Lorazepam. I have proven that I can get through MRIs without any extra drug help at all. I know I can do it if I have to, relying only on my other tips. The lorazepam relaxes me enough so I am both calmer, fully functional, and happier feeling in general.

Tip #9: I don’t find it helpful to tell people about upcoming scans. There are too many questions. It is so much easier for me to relax on my own before and after the test, and if anything needs to be shared later, later it is. There really isn’t a need to share when nothing really changes. If you get support from sharing scheduled tests with a lot of people, that is your choice based on the kind of support system you have.

Tip #10: Remember the goal of an MRI is to provide information about your health. I need the information – good or not so good – because either way it determines what choices are best so I can maintain a healthy lifestyle. My mother wasn’t open to MRIs and many other tests because of claustrophobia. I believe there also were other fear based and avoidant based thinking happening. Not knowing sadly didn’t work out well for her. I miss her terribly. She and I have many similarities, but as hard as it is for me, I have to get the tests so I know what’s what.

I know what to expect after so many of these. This is a place where I’ve become very vocal about what I need – the music, the lavender, the washcloth, the encouraging words and announcements throughout. I always take extra good care of myself afterwards, whether it’s a treat on the drive home, or a long walk where I can decompress and appreciate being free from the MRI machine.

All these scans would be a much better time if I could find a way to make sure every scan provides the kind of results I need and want. In the meantime, I have found a way get through them with less dread and a little more ease.

Scans are just one example of what causes people anxiety. Everyone has something that they find difficult to do or causes them to worry. Anxiety is often worse than the event itself. After you’ve done it, you realize it wasn’t so bad after all. Maybe you’ve even developed a few hacks on your own that help you cope or dismiss your anxiety and stress entirely.

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Whether brought on by medical stuff or other anxiety triggers you have in your life, what helps you lessen anxiety?