Having successfully used cold caps through 6 rounds, I learned a whole bunch of things that I really would have liked to have known earlier. Please find below a list of some of my observations and tips. If you have any others that we should put up here for everyone else, please send them to me email@example.com and I’ll get them posted. You can do this!
Refer to the hair care document on your clipboard for complete information and many more hair care tips.
You should not wash your hair for three days before through three days after your treatment.
If you need to color your hair, do so at least two weeks before your first treatment and then not again until 3 months after the first round.
You can trim your hair (1/2″ or less) during treatment, this is not the time for a style change. No wigs or tight hats or head covering.
Wash your hair no more than twice a week during treatment, use water that is cool or no warmer than your body temp and use a mild shampoo and conditioner that contain no sulfates or parabens. We love the line by Beauty Counter, refer to the page on your clipboard or www.beautycounter.com/lizzycronin. Your hair will feel greasy at first but after about a week this will go away.
Be very gentle with your scalp; don’t scrub your head when you wash your hair.
Avoid a high-power shower head.
If you have long hair you can style the ends with a blow dryer, curling iron, or straightener. You want to protect your roots.
Use a wide tooth comb (we provide) when your hair is wet. If you need added conditioner, Kenra Spray leave-in conditioner is a good one. We love 12 Benefits too! You can also add a small amount of your conditioner in a spray bottle and dilute with water for a leave in.
Sleep on a satin pillow case.
If you pull your hair back in a pony tail use a loose band and don’t pull it too tight. Very loose braids or clip is ok.
I did a partial highlight on my hair 3 months after the first round. My hairdresser used a light color with no bleach and low ammonia. I did another partial highlight 6 weeks later and have decided to stop all-over color and just do highlights. 7 months after the first round I did get a highlight with some bleach. If you color your hair this can be one of the most trying aspects about this process, but you will be happy in the end that you have hair to color!
When your hair is stable, meaning you see about the same about of shedding as pre-treatment, you can resume your normal hair care.
Treatment Day Tips
Eat breakfast – food is helpful. Pack snacks.
Wear comfortable clothes, usually work out or leisure attire is best.
Use an electric blanket or throw to help you stay warm and toasty during the day.
DRINK LOTS OF WATER!!! I tried to drink 4oz every 15 minutes.
The first 3 to 5 minutes of the cap application are the hardest, just stay focused and push through.
The first few caps during pre-capping aree the most important, be sure to follow the instructions.
Stay in touch with your capper! They are here to help you.
What You Can Expect
You will shed some hair around day 14-21. It may seem that a whole lot is coming out – but it isn’t. Don’t get discouraged and think that it is not working. You will still have a lot of hair and again you will be the person who notices it the most. I shed up to 6 weeks past my last treatment and then it stopped. My hairdresser estimates that I lost about 20% of my hair during treatment. For me, having 80% of my hair remaining versus it being 100% gone was well worth the effort of this process!! You will be cold – but you can do it! Reach out to your your capper with your questions, they are there to help you.
Establish a good relationship with your nurse, even if you don’t get a warm fuzzy feeling from them at first. Remember that this may be your first brush with this but these caregivers see hundreds of patients and can become desensitized. Kill ’em with kindness:)
Frequently Asked Questions
How do Cold Caps work?
The technical answer is vasoconstriction. This means when wearing our specially designed cap that is cooled to a very low temperature, (approximately negative 30 degrees C), the blood vessels to the scalp area become constricted and damage the hair follicles may be minimal. The cold temperature may also cause the follicles to almost hibernate and less damage may occur.
Insurance coverage for scalp cooling is not yet a standard in the United States however, many patients have submitted insurance claims and received reimbursement for treatment costs at varying levels. Scalp cooling service may or may not be covered by your insurance company. Success with reimbursement varies depending on your plan, your coverage, and location. Medical coding, coverage, and payment of medical scalp cooling for the prevention of chemotherapy-related alopecia has not yet become an industry standard. Chemo Cold Caps has no formal agreement with any Third Party Payer (insurance company). We cannot bill a third party payer on your behalf for scalp cooling services, you must submit for reimbursement after payment. Requesting reimbursement from a third party payer may not result in payment. Criteria such as co-pays, deductibles, out of network and minimums may be a factor, and the dollar amount of coverage may vary. If it is not covered, no payment would result. Additionally, there may be circumstances where the service is covered and can be used by a patient and billed for, but no additional payment or a reduced payment is what the insurance company concludes according to your plan. Upon request, we can provide a detailed paid in full receipt with medical coding for you to submit for reimbursement. To verify coverage call your insurance company using the following procedure and medical codes:
Our provider information: Chemo Cold Caps Tax ID 38-3900658
CPT code (procedure code) we use: E1399 Durable Medical Equipment Misc. We will also list the following CPT codes: A9273, A9282, 97010 and 97039 if those codes are recognized and covered by your insurance provider.
ICD-10 (Diagnosis codes) we use: Z51-11 Anti Neoplastic Chemotherapy, L65.9 Chemo Induced Alopecia, D09.9 Malignant Neoplasms, C50.919 Malignant Neoplasm of breast.
Is wearing the cap painful?
Most people experience a few minutes of mild discomfort when the first cap is put on. After about 10 minutes the scalp area becomes mostly numb. The most commonly reported side effects include headaches, complaints of coldness or uncomfortable sensations, dizziness and to a lesser degree, claustrophobia. In general, scalp cooling is very well tolerated with very few cases resulting in suspension of the scalp cooling process due to discomfort. Studies have shown that on a pain scale of 1-10, with 1 = “not tolerable” and 10 = “really well tolerable”, mean scores vary between 6.9 and 8.0. Some people use a common medication during pre-meds to alleviate these symptoms.
Will Cold Caps be effective with my treatment type?
While Cold Caps are effective with a great number of treatment types, they are not a universal solution. Many factors determine the success. Please see Clinical Studies on what treatment type may have been most effective and most importantly, you must consult with your doctor about whether cold cap therapy is right for you.
How long are the Cold Caps worn for?
It is necessary that caps be worn for 50 minutes prior to the start of the treatment and throughout the entire treatment. After capping time is necessary and may be completed at home. Usually for at least 3 hours following the treatment. Refer to your specific timesheet on your clipboard for your regimen timing. Depending on your treatment, the entire process can take up to 6 hours. Note: the longer the caps are worn (up to 8 hours) the more effective they can be. Preventative weekly capping options can be discussed with your capper.
Is there any training available?
Our company is committed to ensuring all users are completely comfortable with how the Chemo Cold Cap system and the cap wearing and changing process works. A training video, written reference guide with photos, and phone training with a capping specialist are included. Everything you need for maximum success with our system will be made available to you. Additionally, we are always available by text and phone for all questions or concerns. Your capper knows best – we do not recommend internet searches for help and answers! There is a lot of information out there and it may not be what works with our system.
Am I committed to using your caps for my entire treatment?
No. If for any reason you do not wish to use our caps for your entire treatment, you may cancel at any time. The first month and shipping are non-refundable. After that, rental may be prorated.
What is the cost?
Cold caps are rented on a monthly basis. The cost is $425 per calendar month. The initial charge is non-refundable and will be the $425 rental plus the shipping fee. The FedEx ground shipping fee is $75. We email you a return label at no charge when finished. Expedited shipping is available. After your first non-refundable month, additional months will be automatically charged on or about the same calendar day each month. Your final month will be pro-rated upon return. You will also incur dry ice charges each treatment. Be sure to search near you to be aware of what those costs will be each time. Some additional dry ice information is provided by email after you order.
If there is anyone that would like to assist you financially, email us directly at firstname.lastname@example.org. We will assist them to make donations. Crowd funding social media pages are a great way to secure additional financial help. We recommend you apply to Hair to Stay (link on our website) and they do a great job assisting qualified applicants.
Are Cold Caps right for me?
Cold Caps are effective for most patients, but success rates do vary. Determinants such as your age, your health, individual dosage and type of treatment, and even hair characteristics are all factors that must be taken into consideration when determining whether scalp cooling will be a successful choice for you. Our capper can discuss this with you when you call. According to researchers Wim Breed, Corina van den Hurk et al, in a study of over 1400 Dutch patients taken from the Dutch Scalp Cooling Registry, factors such as treatment length, older age, female gender and non-West-European type of hair significantly increased” the chances of heavy hair shedding. It is advised to discuss all options with your doctor prior to treatment.
Links & Resources:
There are an ever growing number of resources for help and information. Take a look at some of the links we have provided below.
American Cancer Society
Susan G. Komen For The Cure
National Breast Cancer Foundation
The Rapunzel Project
American Association for Cancer Research
Locks of Love
Triple Negative Breast Cancer Foundation
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