Cold Capping Update #2

Taxol is a chemotherapy drug that causes hair loss. It occurs somewhere 2-4 weeks after an initial dose. After so many drugs, after losing my hair twice previously, and even while I used a cold cap, my naiveté continues to surprise me. I got good results while on Doxil. I hoped, no – I expected it to continue when I switched to Taxol. I had passed the two-week mark on the new drug and was doing okay.

Then the three-week mark hit. More hair came out in with my morning comb out than I had experienced. How odd. Then with the night combing. Hmmm. I started documenting it. The pattern continued and got worse and worse with each day. It was matted in the morning when I woke up and that never had happened. As gently as I combed, out more would come. I commented to a friend that at this pace I wouldn’t have any hair left by the end of January. The writing was on the wall. Hair was on my clothes, on the floor, and in my food. Hundreds of strands in my comb and on the bathroom counter became thousands. I filled waste baskets.

Losing hair is a visual hopelessness. There wasn’t anything I could do to make it better.

This pattern continued steadily for three weeks. I stabilized by February with noticeable damage done to my hairstyle. There were bare patches on my crown, in the back, and on the sides toward the front. Not much was left if I were to pull it back into a ponytail or put it up. It was flat, unhealthy, and unattractive looking. I looked sick. I loved donning a hat for outside winter fun. I was skilled at arranging it just so to pull off a normal looking photograph taken from the front. People said I look great! People lied.

Some people photograph the clumps of hair and growing bald areas. I’ve seen the pictures. My personal moments will haunt me and I don’t need a visual reminder. No one needs to see my hair to make it real for them.

So, what good is the cold cap? Note it worked impressively well while on Doxil, not so well on Taxol. The recommendation is to continue because it can speed regrowth. Other users (and the nurses too) do confirm that regrowth is faster. Of course, that’s the recommendation because the company makes money with continued use. The thing is I’ve paid for my maximum capping sessions and anything over that is now free. I still have to endure the discomfort and extra time involved. Happily, I have seen some hints of regrowth from the top. The sides might be filling in, but this is even slower. I’ll stick with it.

One bright side is the first ten minutes with the cap is more durable. It’s no longer the worse possible feeling I can imagine. It’s no big deal. It almost feels refreshing and I kind of like it. It all goes quickly like clockwork. After 19 capping sessions, this is my norm.

I wonder at times how much more can I take. Apparently, there’s always more. I loved having hair again. I didn’t quite like having it so long, but that isn’t a problem anymore. Others’ comments that I have cute wigs are true. These comments also minimize a loss they’ve never experienced.

I just keep losing and I don’t know how this is my life.

I should be grateful I haven’t reached my breaking point. Should be. I think I’ve been broken repeatedly. My breaking point keeps getting reset to something more devastating. I should be glad it’s “only” hair. Again, should be. I am, but it’s my hair. Without it, sensitive comments absorb more quickly though my scalp and go straight to my emotions. I should remember it will grow back. Another should. I was without it for years the last time. This is now one more uncertainty in my life. Yes, I have bigger worries. I know I don’t need it, and I know others have been where I am, but I still need to hear I am heard. I need that ounce of validation that my tears and grief are validated. I need a little grace in my world where I don’t feel much.

I felt anger with this development of noticeable hair loss. I felt angry that I looked sick. I felt angry that the cold cap hasn’t worked better for me. I felt angry this happened again. And I still feel angry at comments that have come and will come from others. To be blunt, there is understandable ignorance from those who have never experienced chemo induced hair loss. I carry the burden of a teacher in how I choose to respond to well intentioned, yet ignorant, comments such as: It’s just hair. It will grow back. You have a wig. You look good. I know all this. It’s just hair and it’s not. I do look good in my wigs. It doesn’t mean I want to wear them. A part of me would LOVE to request that people forego coloring their hair. This raised such distress early on in the coronavirus lockdown. Maybe everyone I know needs to shave their head and keep shaving it to experience an inkling of what is one of the most emotional side effects from chemotherapy. Would those actions help me? Mmmmm . . . maybe.

Maybe, maybe, maybe.

People would sooner have regular colonoscopies.

There is such attachment to our outward appearance. Even to temporarily let go of that with what would be a selfish suggestion on my part would provoke instant emotional resistance at the possibility of not having hair for a relatively short period of time. No, I don’t expect anyone to embrace gray or baldness to prove anything to me. It still would not be the same. Just my ego acting out.

At this point in May, I’ve lost about 75% of my hair. I’ve opted for a short cut to take off the stringy strands that made me look sick and unhealthy. It’s more of an even cut and will support a better look as hair continues to fill in. I also colored it on my own a few days after the cut. Both are not to be done while cold capping because of the added stress it puts on the follicles. Big shock that I went against recommendations. It just isn’t realistic for me not to ever cut or color it again because treatment isn’t going to end for me.

That’s the update. I am a supporter of using a cold cap if it is an option for you. It digressed and wrote a fair bit about my hair and hair loss. They go hand in hand. The first photo was before Taxol took a toll. The middle photo doesn’t quite do justice to my daily look. Even in this photo, I was finger styling it and moving more of it to the front so it looked like I had more. I feel very comfortable with my short cut and I’m happy enough with this look.

We all need support when we’re down, upset, or frustrated. It can be an offer to talk where one person truly listens. It can be an empathetic comment where there is no attempt to fix anything. Sometimes an emoji is enough to convey what words miss. I find regular texts from a couple friends reassuring that someone cares. What words are supportive? I hear you. You are not alone.

Side Effect Smorgasbord

Side effects from cancer treatments often feel like they are heaped onto an overflowing plate from a smorgasbord at the cancer cafe. Every treatment comes with a long list of possible effects with the caveats that most people don’t experience all the effects and they range in severity. That’s true enough. I’ve experienced many of them over time due to the reality of being on multiple treatments. The list below is not complete. Side effects I’ve had the displeasure of having include:

  • Nausea and vomiting
  • Hair loss
  • Fatigue
  • Neuropathy
  • Insomnia
  • Mood changes
  • Higher risk of infection (low white blood cell counts)
  • Anemia (low red blood cell counts)
  • Easy bruising and slower healing
  • UTIs
  • Chemo Brain
  • Appetite changes
  • Weight changes
  • Diarrhea
  • Constipation
  • Hand foot syndrome
  • Dry skin
  • Dryness of mucous membranes
  • Chemo induced menopause

An entire separate buffet needs to be set out to adequately serve all the undesirable dishes that accompany chemo induced menopause. Sexual side effects are a big part of menopause. Entering it as a chemo induced experience brings some unique spices and flavors to the smorgasbord. Fortunately, there are ways to address these effects so women are more comfortable and happier.

Emotional side effects like anxiety, depression, grief, and identity questions may not directly be caused by a cancer drug, but they certainly can develop or become magnified from diagnosis, throughout treatment, after treatment, or carry into what’s next. Trauma also can develop from a myriad of cancer moments. These are available at the smorgasbord and it’s all you can eat. 

Addressing mental health side effects are just as important as addressing physical side effects. No, a person doesn’t have to suck it up or get over it. Positivity is not a cure all. I may not feel like gutting myself emotionally and exposing all my pain as a casual conversation. Someone may look just fine on the outside and be struggling within.

Unfortunately, I have added a new side effect to my list in the past month:

  • Mouth, tongue, and throat problems such as sores and pain with swallowing

Fun fact: a person can’t swallow and breathe at the same time. I have had three of these esophageal spasms, triggered by taking oral medications and supplements. I’ve described it as comparable to a swallow getting stuck but there is nothing causing an obstruction. It feels like I imagine a heart attack would because I can’t breathe. Scary isn’t a strong enough word. And it’s painful.

It’s a triple F moment for sure.

The same week as one of these spasms, I discovered I had mouth sores. They were on the inside lining of my mouth in both cheeks. Perhaps as far back as my throat. No wonder my mouth hurt! It explained my ongoing pain and difficulties eating and speaking in addition to swallowing. I called the triage line two days in a row. The previous day I called because my throat still hurt from the spasm episode and I discovered one whole pinky toe had turned into a flaming blister. The blister is a sign of hand foot syndrome. It turns out I need to keep rinsing my mouth throughout the day with warm salt water and keep my mouth as clean as possible. This easy at home solution worked quickly and the sores have resolved. Omneprozole is successfully preventing any more spasms.

Drugs are often prescribed to deal with side effects and they also have side effects of their own. It becomes a vicious cycle.

Serious side effects (more serious than those covered) like heart, liver, and kidney damage can also result from cancer treatments. The term side effect seems like it’s lacking when major organs can suffer permanent damage.

So . . . which side effect is the worst?

Whichever one is happening at the present moment.

Rarely are side effects ever on the side.

This smorgasbord sucks. I want to order off the menu and go straight to desserts. Ice cream sounds delightful.

Consider responding:

  • I know my list is not complete as there are side effects I’ve dodged. Please share others if you’re comfortable.
  • What side effects have you found challenging? What has worked well to manage them? Please add your comments so others may benefit.

Scalp Cooling and Cancer

Using a cold cap marks another first for me.

It’s my third time facing a treatment that has a strong (almost certain) chance of hair loss listed as a side effect. Total hair loss was a sure thing the first time I needed chemo. I went to the salon and had my head shaved. I had a wig but didn’t plan on wearing it. It didn’t look like me, feel like me, and it felt uncomfortable. I felt I retained my identity in a head wrap.

Cold caps at this time were being used in Germany but not in the U.S.

The second time where I was likely to experience hair loss was when new treatment followed oral capecitabine where my hair had already thinned considerably. My next line of treatment was likely to cause me to lose even more. This time around, I looked into cold caps. Some had been FDA approved and were being used in the U.S. I wanted to do it. The more I learned, the less of an option it became. Caps needed to be changed every twenty minutes. You needed someone to help change the caps. It needed to be worn before and after treatment – how long depended on the specific treatment you were receiving. I learned I would need to wear the cap a couple hours prior to and after treatment. I lived alone and I doubted I was going to find anyone who had full days to devote to cap changing. I also learned a person still lost up to half their hair. I didn’t have any more to lose since I already felt I had lost about half from my previous line of treatment. It was too much effort for something that maybe would sort of possibly work hopefully a little bit. I didn’t shave my head. I decided just to let hair fall out if it was going to. Most of it did with effects similar to if I had shaved it. I opted for a wig. I could avoid stares when out in public. It suited me. I felt like me. It was comfortable. I felt more normal and like myself.

I wigged for three years.

I finally had my hair back by last November. I love how it feels. It’s been a beautiful mess during the time quarantining during COVID. I found that ironic that I had all this lovely hair that no one ever saw and I couldn’t get done.

God sure has a sense of humor.

Then came the blow that I needed to change treatments and the best option would probably wipe out my hair for a third time. I didn’t want to see my hair go again. The emotions and tears attached to hair loss are intense. I decided to revisit the cold cap world and was somewhat relieved to learn there is now a machine at my treatment site provided by Paxman Scalp Cooling that a patient pays out of pocket to use. Please note my only connection to the company is as a customer using their product.

Everything is managed while you are on site receiving treatment. Nothing needs to happen at home. You are hooked up to this machine that pumps and keeps the cap cold. A nurse gets you ready, secures the cap, and runs the machine. You eventually take over and get ready on your own.

Why do I write I was only “somewhat” relieved? I still had to willingly freeze my head for a shot at keeping some hair and pay for the privilege of doing so. It still was probably going to thin, but I’d be starting with a full head of hair this time.

I would take a shot.

Cold caps or scalp cooling systems work when the scalp is cooled to reduce the amount of chemotherapy that reaches the hair follicles. The hope is hair may be less likely to fall out if less chemo gets there.

My head isn’t really frozen. The scalp is brought down from around 98.6°F to between 64°-72°F. It wasn’t an all over football Saturday in November kind of cold. It was more of an unnatural numbness of combined cold and heavy sensations that you could still feel. It does get better.

Time is broken down into four parts. There is a 30 minute pre cooling time to get your scalped cooled and ready to receive treatment. Doxil (doxorubicin liposomal) is what I’m getting and that takes 60 minutes to infuse. Then there is a 60 minute post cooling time period. Lastly, you thaw for about 15-20 minutes so hair isn’t ripped out of your head that is frozen to your inner cap when you remove it. It all adds up to just about 3 hours from start to finish.

I hope you agree it doesn’t suit me. I assure you it is not comfortable. I want to keep being the me that I see in the mirror. I’ve been told I look like a pilot or an astronaut of the past. And yes, I know my mask matches my eyes.

What is it like?

It’s rather hilarious the process is called scalp cooling. I think the word cooling is used for some type of psychological effect. The machine was turned on and there is a whoosh of cold filling the cap. Seconds tick by and it indeed gets intensely cold in an instant.

A person is forewarned that the first ten to twenty minutes are the worst. After that, the scalp is numbed enough so it doesn’t feel as cold. I want to be crystal clear on what I feel. Fear fills almost every fiber of my being as I fight through the first ten minutes of each session. I wonder if I can get through this torture I’ve willingly chosen. The feeling of desperation is almost more unbearable than the intense cold. I have fought back tears for the few minutes every time. My tolerance for pain and discomfort is quite high. Living with metastatic breast cancer does that. I can barely keep it together.

But then I acclimate and focus on other distractions to pass my time.

The cold didn’t bother me as much as the tightness and chin strap. The chin strap is the worst part and almost intolerable. The covering worn over the cap must be kept on tightly so that the inner cap stays snug on your scalp. This makes it hard to talk and eat because it’s that tight.

Wearing a mask added another layer to my discomfort.

Feeling a little sick added yet another layer. I was fighting it and waffled back in forth from the root cause of feeling light-headed and woozy. Was it the drug? Was it the cold cap?

Both? Or was it just all in my head?

After I was disconnected from the Paxman cooling machine, there is a thawing out period of around fifteen minutes before the cold cap is removed so your hair isn’t adhered to the cap when taken off. Getting the chin strap released helped a lot.

Nurses are special humans. No ifs, and, or buts about it. I wasn’t feeling so hot after my first session. My lovely nurse gave me a head start to go get the car. Meredith wheeled my carry-on suitcase outside to the drop off lane and waited for me there so I wouldn’t have to lug it all the way to ramp and up flights of stairs. I still had two bags to carry on my own. Scalp cooling requires me to bring much more to my sessions.

How’s the cap working?

I’ve told very few people I’m scalp cooling. I wanted to see what happened. Nor did I see the point of a grand announcement since I don’t go very many places thanks to the pandemic. My new treatment qualifies as one that causes immunosuppression. Even fewer people see me.

I have had two rounds of Doxil (doxorubicin liposomal) so far. Cycle two went more smoothly. I didn’t feel sickish from the drug or the capping experience. Time passed a little more quickly. I am expecting each time to feel easier. I know what to expect and how to manage it all.

Success rates vary with different treatments. Paxman considers the cap successful if you keep 50% or more of your hair. My bar is higher. I want minimal loss with no visible bald spots. I’ve seen many pictures of women with bald spots on their crowns. Seeing these discourages me. Time will tell. Shedding is expected. Lots of shedding apparently.

Shedding is normal. Normal shedding is normal. There is NOTHING normal about chemo. Absolutely nothing. The bald spots on someone’s crown and other places on the head are referred to as shedding. Shedding on chemo goes far beyond normal shedding. A person is bald. My definition differs from Paxman.

Maybe I’m splitting hairs.

When a snake loses its skin, new skin is there to take its place. It’s not even a close call. A snake doesn’t have some bare spots where new skin didn’t develop. Shedding crosses a line quickly with certain chemos and it becomes hair loss. Call it what it is.

I should be wearing a wig or wrap by now if I weren’t scalp cooling. It’s been 45 days since my first cycle with Doxil. My hair doesn’t feel the same or look the same. I can wash it only weekly. There are many cautions against styling it. I am to refrain from getting it colored or cut. I even need to be careful combing it. But I still have it. I will count every day I have it as a win. So far, I’ve experienced minimal hair loss (or ahem, shedding).

I am fed up with accepting hair loss in my life. I’m hoping this third time is the charm and I have found a way to keep it.

If not, you’ll see me sporting a variety of looks and you will know it isn’t working as well as I hoped.

A bit messy, but a realistic look for me. So far, I’m hairy happy with the results.

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?