I start chemotherapy on Thursday 4/9/2020. I am so thankful to be able to stay on schedule with my treatment plan thus far even amid COVID19. Almost a year ago today I would be diagnosed with breast cancer the first time. Something that I was told at my first appointment before we knew ANYTHING about my breast cancer (hormone or HER2 status, staging, extent of cancer, etc.) I was told that I would have to come to terms with losing my hair, and that losing my hair would be the hardest thing about chemo.
It appalls me that someone with with as much hair as I have that an oncologist wouldn’t give the information on cold cap options during diagnosis instead of bringing up losing all of my hair. If we didn’t know enough at that appointment to come up with a treatment plan, we also didn’t know enough to know if I would NOT be a candidate for cold capping. Advocate for yourselves.Due to the original diagnosis of positive hormone status, HER2-, Stage 1, non lymph node involvement, and Oncotype score, with clean margins from surgery and double mastectomy we decided to not do chemo first go around. Obviously with this recurrence we are going to do everything in our power to get rid of this once and for all.
My Chemo regimen will be docetaxol and cyclophosphamide every 21 days, four rounds. My oncologist has reminded me that this is conservative treatment with HER2- cancer and my staging, but agree we should go ahead and do it. After chemo I will also complete 6 weeks of radiation.
With my chemo regimen I have the ability to do something called “cold capping”. Basically, 30 minutes prior to my chemo starting I will put on caps in order to ice my head. This will stay on during the infusion and then for two hours post infusion. It will be a long chemo day of about 6 hours if all goes as planned. The idea behind it is that the ice reduces the temperature on my head, creating both vasoconstriction of blood flow and reduced metabolism of hair cells. Because of this, I will have decreased absorption of the chemo in my scalp/hair cells specifically and therefore can have less hair loss.
UF chemotherapy center has a contract to be able to use Dignicap cooling systems, which I will be using. The website I am linking here: https://dignicap.com/ – The other automated cooling system is called Paxman.
Dignicap obtained FDA approval in December of 2018 for breast cancer patients, and it will cost $300 per chemo session, with four sessions $1,200. Insurance currently does not cover this for patients, which I plan to help advocate for and work on changing in the future. The company does have an out of pocket max they will allow you to pay in one year time which is around $2800.
My Aunt Julie and Uncle Dennis have graciously gifted me the cold capping fees. In a time where I am about to hit my out of pocket max ($6,500) for the second year in a row, it means so much to me to have such an amazing gift. I love you both so much and am so grateful for the opportunity to try to use this!
There are also many other cold capping options, some of which are manual cold capping where you use dry ice and switch out the ice throughout your chemo session. I wanted to make sure I mentioned this in case someones center does not have a contract yet with Dignicap of Paxman but you are interested into looking into it. Some examples of self cold capping options include Penguin and Arctic cold caps.
Prior to start chemotherapy you should ask your oncologist if they think you are a candidate for cold capping. If they are not knowledgable about the topic I recommend looking at the Dignicap or Paxman websites to see what chemo regimens have been studied, as well as looking into a non-for-profit website called:http://www.rapunzelproject.org/Default.aspx. They are an awesome organization who raise money for people to be able to cold cap and are a wealth of information on the subject matter.
The following is a combination of tips and hair care for being able to successfully use a cold cap during chemotherapy. These tips come from many fellow breast cancer survivors who reached out, the Dignicap website, and The Rapunzel Project FAQ on haircare section. I will link the FAQ for hair care for both dignicap and the Rapunzel project below my overall list. A special thank you to all the women I have met through social media who offered guidance and information on the process before I started.
Day of Chemotherapy Considerations:
Keep hair straight down during chemo; do not bunch or pile on top of your head (The Rapunzel Project)
DRINK AS MUCH WATER AS POSSIBLE DURING CHEMO DAY (everyone has told me this – I bought a cool water bottle with goals and times to keep me motivated thanks to one of my best friends ideas ❤ )
Use adhesive-backed moleskin***, cut to the shape of the forehead, to protect skin when cold caps are on. If your hair doesn’t cover your ears, use foam headphone covers to protect your ears (The Rapunzel Project)
Have warm blankets or electric blanket (everyone)
Sit in a chair without a high back (for manual capping, The Rapunzel Project)
Use a travel-type neck pillow to support your neck (everyone)
Obtain blood work prior to your chemo day so that the day is a little shorter than it would be along with the cold capping (UF does this automatically for patients who are cold capping)
Change your hair line part each chemo session (everyone)
Make sure the cap is tight at the crown of you head, a lot of patients bald here most starkly due to gap (Survivors opinion, Dignicap)
All hair is SATURATED with water prior to starting that will come into contact with cap. Dignicap will send you a small spray bottle that you can bring with you to the infusion center and use right before you start your session, it is recommended that you wet your hair prior also before you leave your house. (Dignicap, Survivors opinions)
Hair Care for Cold Capping
The hair care seems to me, and in the opinion of others to be much harder than actually sitting through the cold cap day of chemo. I am summarizing main things below that I have learned. I recommend going to the website for your particular cap manufacturer prior to starting so that you can assure you have done everything you need.
Use only cool water in the shower
Do not pull on hair – recommend loose scrunchies etc.
Do not use heat on hair – no blowdryers, straighteners, curling irons etc. recommended
Washing hair can only happen about two times a week. If you are shedding then skip washing, make sure to wash right before chemo session to decrease any build up-
clean shampoo, pH range in the 5’s is recommended. Without any of the following harsh chemicals:
parabens, sodium laurel sulfate, silicones, phthalates
I started using almost exclusively Beauty Counter products after my first cancer diagnosis, here is the link to the shampoo I use: https://www.beautycounter.com/product/daily-shampoo
Gently use detangling comb on hair
Avoid direct sunlight on scalp
Usually told to follow this routine as above until 2-3 months post chemo when shedding has decreased.
Links to helpful sites:
I spent the first weekend of quarantine learning how to brain my hair to be ready for all of this not washing or brushing mess.. I am still not great at it but getting better! If you cant do it but need to learn, I promise if I can learn you can!
Inspired side braid from one of my best friends, Callie ❤
Inspired by Katniss Everdeen
All in all, the goal of cold capping is to keep 50% of hair. We will see how it goes, as each patient has very different outcomes but I am hopeful and excited that there is this opportunity to try to keep my hair.
Someone alluded to the fact that it is vain to want to do this. Maybe, but maybe it is so much more? Maybe its more about taking control of ONE thing in a time when a cancer patient has control over so little. Maybe its about possibly taking away one more thing that would again make me feel like I am so different than everyone around me. Maybe its about having the opportunity to leave my house and no one automatically knowing I am fighting cancer. Maybe its about keeping one physical thing on my body “normal” while SO much has changed. Maybe it is about proving wrong all the oncologists out there telling 20-something year old patients the hardest thing about chemo is “losing your hair”.
I can attest to the fact that the hardest thing about chemo without having even started it (surgery, hormone therapy, physical therapy, psych appointments, and the follow up care) is the cancer diagnosis in the first place.
More to come and with much love,
Sami
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