Hair Loss: Most current chemotherapy regimens for breast cancer result in hair loss. I chose to use cold caps to prevent hair loss during chemo. I was lucky enough to have the resources and support to do this. I fully respect everyone’s personal decision about the chemo/hair issue, and when I see bald men and women going through chemo, they look beautiful to me. I am just providing information for those who want the option as it is no longer a given, and this is not very well known in the US. It does not work for everyone but, I have been 100% successful in keeping my hair after completing 8 rounds of dose dense chemo (4 AC/4 Taxol). Not losing my hair through chemo by using cold caps, has felt like one huge psychological victory over this fecking cancer.
Here is some info that may help those who would like to consider this: ChemoColdCaps is an excellent website with tons of information about this process. I did not know about them when I started but wish I had. The Rapunzel Project is a non-profit that provides information about the existence and efficacy of cold cap therapy, refers patients to cold cap providers that have demonstrated track records of success with various chemo drugs, and donates biomedical freezers for clinics to make cold cap use easier and less costly. The amazing folks at The Rapunzel Project informed me that there is a small non-profit called CCaps.org that provides financial assistance to individuals going through the cold cap process. Also, although this is not the company I used, so I can’t speak first-hand about it, Dignicap has been FDA approved for use in the US as of December 8, 2015.
However, the cold cap process is difficult to tolerate (at least for me). It’s freezing (obviously) and for my regimen, I needed to do it for an hour before, and 4 hours after, treatment – so about 8 hours, on top of tolerating the chemo infusion. You also have to be fully prepared and educated on how to do it properly from the first treatment or it won’t work. If it weren’t for my sister, there is no way I would have gotten it together by then. I was in such a fog digesting my diagnosis and recovering from surgeries, I did not have the wherewithal to coordinate this.
So, for those who have lost, or will lose, all or some hair due to chemo, or who choose not to do the cold cap process, but want to have hair going through this, the truly impressive and remarkable Lucinda Ellery has just brought her patented intralace technology to her new studio in NYC. She has thriving studios throughout the UK and in LA as well. Clients come from all over the world to use her hair system. Lucinda and her products are truly revolutionary. She can attach an intralace system at any point in your process that matches your hair color perfectly and your hair can shed and grow back underneath it without ever being bald if you so choose. This process is about the same cost as a natural hair wig (2500-3500) – but it stays on 24 hours a day and you can shower, style it, and even swim with it. It lasts about 2 years. During that time, you need to return to the studio every 6-8 weeks for an adjustment. This costs 150 per hour and is typically 1.5-2 hours. Three times during that 2 year period, they will need to take everything out and re-do the process. The cost for this is approximately double the adjustments (3-4 hours; 450-600 dollars). For women with thinned hair, or those that just want more volume or length, she also offers Medi Connections (light-weight extensions) that last about 3 months and do not cause breakage or any damage to your existing hair. She uses real hair and Keratin polymer to produce a completely natural look that allows your hair to grow in healthily along with these products. Many insurance companies will cover some of the cost of a wig with a doctor’s prescription for a cranial prothesis. I would recommend finding out if you can apply this to cold caps or Lucinda’s products if you choose them instead of traditional wigs to off-set the costs.
I’ve been asked a lot about my experience going through treatment, so I thought I would try to keep a log of what it is like to help others who may be facing this and looking for info. As noted above, I went through 8 rounds of dose dense chemotherapy, 4 of AC and then 4 of Taxol. One chemo treatment every 2 weeks for 4 months, followed by 5 weeks (25 rounds) of daily radiation, and 5-10 years of an Aromatase Inhibitor. My treatment is at Memorial Sloan Kettering Cancer Center (MSKCC) in NYC and West Harrison, NY.
My chemo tips: A researcher by nature and profession, I have chosen to read and learn as much as possible about breast cancer and treatment in the hope of optimizing my success rate and minimizing side effects. I embrace an integrative healing paradigm combining both conventional and alternative approaches. These are my top ten things I have chosen to do, and am lucky enough to have access to, as an adjunct to conventional treatment, that I feel may be helping me through this process. This is just my (non-medical!) opinion, and based on reading I’ve done, but I think they’ve helped me stay strong, healthy and positive through treatment:
- I try to laugh and I try to feel gracious. I try to see the humor as well as the gratitude in this ridiculous situation. Humor feels like a ladder in a well that I’m trapped in. It allows me to climb out of the misery and into the light. Honing in on the things I’m grateful for and what I have, not what I’ve lost, helps me look ahead. (That is when I’m not having a complete Fing pity party about having Fing cancer.)
- I spend as much time as possible truly “enjoying the moment” with my kids, family, friends, dog, and alone. It is completely cliche, but true. When you’re forced to face your mortality, you start living in the moment and being fully present. It’s all you can count on. (That is when I’m not having a complete Fing pity party about having Fing cancer – oh did I already mention that? – Well, I’m not a monk- we can’t all be zen all the time.)
- I try to get to Acupuncture (from the amazing Simone Wan – who also has awesome, healthy, kid-friendly recipes on her website), Polarity Therapy and Massage (from the incredible Sheila at Stillpoint Massage) weekly.
- I use essential oils, both through an infuser and topical (Frankincense and Lavender for relaxation and help with sleep, Lemon in water every morning for detox).
- I drink lots of filtered water (at least 3-4 liters a day).
- I (try to) generally eat healthy with lots of green, crustaceous food, and protein.
- Even when I’m really tired, I (try to) walk at least 2 miles everyday at a pretty brisk pace. I’ve read that people with breast cancer who walk regularly have an 8x reduced risk of recurrence – I’ll play those odds.
- I do Yoga and reformer Pilates as the stretching and weight resistance is supposed to be great for bones (which can be impacted by chemo and menopause-induced by chemo) and manageable during this process.
- I meditate. Meditation is known to improve both physical and emotional responses to stress and thus studies have shown people who meditate regularly have less activation of their immune system. I download meditation specifically geared toward chemo and cancer and try to listen at night before bed and before and during chemo.
- I pray.
Round 1 of Chemo (Nov. 2-15): The actual chemo IV is really not bad other than difficulty trying to find a good vein with my one viable arm. With breast cancer, if it is advanced, the lymph nodes are typically removed from under one armpit and you can no longer use that arm to put in a line. I had so many veins used, bruised and blown from previous issues, that this has been the most difficult part of the actual infusion process for me. I did not get a port placed because my doctor did not want another foreign object in my body that could hold bacteria. However, once they find a vein, which they have been able to, it’s fine.
As mentioned above, I am using the penguin cold caps in an attempt to not lose my hair through chemo. This makes the day a bit difficult to tolerate but I figure I can do it for 8 times and then not have the loss and regrowth that would take years considering the length of my hair. My sister changes the caps every 23 minutes to maintain the needed freezing temp of around below 40 degrees. Each time a new cap is placed I go through the brain freeze again and it’s tough, but worth it for me in the long run if it works.
The day after chemo, I take steroids to mitigate side effects and get a shot (Neulasta) to boost white blood cell count. I felt pretty wired from the steroids, but gain mental clarity which is nice for a change since I have been running on about 3 brain cells lately. “Chemo brain” definitely makes me feel a little foggy and forgetful, and sometimes all I can do is binge watch TV (a nice perk actually – I recommend the Showtime series “The Affair,” ABC’s “Scandal,” and of course PBS’s “Downton Abbey” – also, they’ve all been shown to reduce cancer by 90% – :)ha just kidding, I wish! – But they help me rest and stay in one place when I need to.). The shot made me feel lousy and flu like overnight and a bit the next day. A friend had advised me to take it in the evening and then go to bed to sleep through it which worked well. The next 3 days I felt kind of sickish and very tired but definitely tolerable. I walked 2 miles everyday and got out to appointments and events for the kids’ school. The following week was better and I was able to do a bit more. The biggest problem is that I’m not sleeping, almost at all. That makes the symptoms a lot worse and I always feel tired. Not sure if it’s the steroids, chemo or just plain old anxiety, but it stinks.
Round 2 of Chemo (Nov. 16-29): This time I actually tolerated the day after chemo shot (Neulasta) a little better but felt the same kind of sickish/tired the first week and then the second week felt much better. Insomnia has continued to be a problem, even with sleep aides. However, 2 days after the 2nd treatment, 16 days in, I was supposed to lose my hair…and so far I haven’t. None at all! I am cautiously optimistic that the cold caps are working and am truly grateful that this is an option. Whether you choose to go through the hassle or not is of course a personal choice but I really want others to know about it. For me, this was important. It was just one more thing I felt angry that cancer was going to take from me, and then leave me to deal with for so long after. I will cope with the hair loss if it comes, but right now I am feeling very grateful to have my hair. For me, the hassle and discomfort is worth it, and I am happy to talk to others about it as it is still so relatively unknown in this country. A side effect I have started to experience during the second week after round two is some bone pain. Specifically, my hips and back hurt. I get a sharp pain in my hips sometimes when I transition from one position to another (e.g., getting up out of a seat or car and walking after I’ve been seated for awhile). My doctor (the lovely Dr. Andrew Seidman) told me this is probably from the Neulasta shots.
Round 3 of Chemo (Nov30 – Dec 14): So far, so great – days 1-3. I really am doing well. Walking, living, parenting, all good stuff. My hair is still attached, and I swear it seems as though I’m collecting it from others. I’m sporting something of a “cancer-fro” these days but I’ll take it. Ok, day 4 was rough. I hate complaining. I really do. But in case it is helpful for someone else going through this, for me, days 4-5 tend to be the worst. I think it is not having the steroids on day 4 but not sure. I just feel really tired, kind of sick-like, where I really can’t do much. My GI issues seem to be impacted the first week of chemo too so that wrecks some havoc for me with the ostomy management. This is very frustrating for me, but I know it will pass. I’m not a great “lay-about” I’m realizing. In the second week I started to develop headaches. They aren’t debilitating, but this is new.
Round 4 of Chemo 4/4 AC (Dec. 14-Dec. 28): This marks the halfway point in my chemo treatment and my last round of the “Red Devil” AC. Chemo day was a rough day (the cold cap process is very tiring), and I was pretty beat by the end of it, but I bounced back the next day with the steroids. For me, days 4 and 5 after AC are the worst. I am off steroids by then and just so tired and a little nauseous. I had to miss two holiday parties on day 5 that I was really looking forward to, but I just couldn’t move – I did almost nothing. By day 6 I start to feel better and am able to walk 2 miles again.
Round 5 of Chemo 1/4 Taxol (Dec. 28-Jan. 11): This chemo day was rough. I had a reaction to the pre-meds and my muscles were involuntary convulsing for about an hour or so. It looked like I was getting the electric chair for some unspeakable crime, which I was wracking my brain to think what that might be:). But the nurses reassured me that this happens sometimes. Cool. Juts convulse away and relax. While your head is being frozen. The whole -40 degree head freezing thing is getting tougher to tolerate but…it is working, and I only have 3 days left so again, for me, worth it in the long run.
Experiencing bone pain and fatigue, especially muscle fatigue, after this treatment. It seems as though there is a cumulative impact. Going up the stairs pretty much wipes me out – but I can still walk miles on flat land. So other than feeling like I’m 120 years old, I’m doing ok. My couch and I are getting very well acquainted, and I’m binge watching Homeland now – love it. Although I am realizing I may need to step up my “daytime loungewear” look as I get all showered and “dressed” for the day and people that stop by keep saying “Oh, you’re still in your PJ’s!”
Round 6 of Chemo 2/4 Taxol (Jan 11-Jan 25): This chemo day was so much better than the last. My lovely oncologist, Dr. Seidman, returned from his vacation – so thats always a treat to see him. He gave me a different medication pre-chemo so I did not have the involuntary muscle spasms (electric chair) thing going on. I slept a lot so it went fast. I had the world’s best chemo team of both my sisters (Paula and Viv), Tom, and Brooklyn Michelle. And I even felt well enough to have dinner out of my hotel room that night – amazing. I’m usually zonked out in bed after 8 hours of the cold caps and chemo.2 more!
I am definitely getting some energy back now that I’m on Taxol and done with AC. I don’t think I realized quite how tired I was before, but I am slowly resuming most of my normal activities -it just sort of happened. I’m sure the pizza delivery guy misses us, not to mention my couch 🙂 which is looking sort of lonely over there – but yes, I am definitely getting back to myself a bit – and it feels great.
Round 7 of chemo 3/4 Taxol (Jan 25 – Feb 8): Chemo went fine. Cold caps, as always are tough to tolerate for 8 hours – but I sleep through most of it now on Taxol. Still have all my hair but eyebrows and eyelashes have thinned a lot in past few weeks. The day after the Neulasta shot is tough. One of my toughest days yet. Feel like I’ve been hit by a truck but I know it will pass. And…that was my last shot. I don’t need to do one after final chemo. One more!
Round 8 of chemo 4/4 Taxol (Feb 8 – DONE!): Chemo went fine. I am so excited to have reached this milestone in my cancer journey. However, while I am thrilled to have this part behind me, to have saved my hair, and not required a port, I am also terrified. Being in active treatment, albeit difficult, is a safety blanket. Once removed, you can feel vulnerable and much more frightened of the cancer coming back or spreading. Hence, I am putting my efforts into the foundation focused on metastatic breast cancer that I’m starting (much more on that later). I also want to get the word out asap that there is a way to save your hair through chemo if you choose. SO many women have told me they wished they had known about this. Others have tried but have gotten freezer burns because they were unclear on proper use and there is so little info out there. My sister and husband seemed to truly master the proper technique through unbelievable diligence, focus, hard word, and sheer brawn. My sis is also a nurse practitioner so that helps having some real medical knowledge. But again, this is just our experience, based on some trial and error, and it worked for me. Today we took pics, and soon to be posted videos, of the cold cap process to help others who choose to pursue this. I can say, now that my chemo is complete, that this really worked for me, 100%. I did not lose a single patch of hair, get a freezer burn, or even experience thinning.
Next is a few weeks of rest and writing, foundation building, starting aromatase inhibitor (AI), then onto 25 rounds of radiation.
This is my AI of choice, Anastrozole – which is the chemical name for Arimidex. I’m kidding, it’s not my drug of choice – nothing about this is my choice, it’s my lovely doctor’s call. To describe what it’s like, I just keep thinking of Alice in Wonderland and how she eats something to become instantly small or large. This drug makes me feel instantly ancient:). My hips and other joints hurt. When I get out of the car – I notice it the most. Hot flashes are worse than before. Awesome. Sleep has been worse. Double awesome – however will I maintain my pleasant, ladylike demeanor with all this unpleasantness:)?!
(March 3-April 6):
- fatigue – really tired and this is cumulative so by the end – I’m exhausted
- lymphadema – have to wear compression gear for 6 months and off and on forever
- radiation burns/dermatitis on my collar bone, chest and back:
4. I would also say that humorlessness may be a side effect as I feel I am getting to the end of my ability to find any of this funny. bleh.