Shopping for cold caps...

This is a pretty comprehensive list of all the recommended blogs, sites and other places to go to get info on Penguin Cold Cap supplies. I have some helpful tips, lists, and links on this page. Thank you to all the people who helped share the information. It's a summary of all the information I've found to buy supplies for using Cold Caps. Think of it as a fun excuse to get warm and buy all the organic products you've dreamed of.  (Anything written as "Optional" are suggestions that may not have applied to me or I did not use yet.) Cheers!

TIPS FOR COLD CAPS

1.  Check out your home freezer size to make sure you have enough space to store all the cold caps. I live in a small apartment so I had to borrow freezer space from a friend to store the caps between treatment. The caps are about the size of a rugby cap, and there are a lot of them. There is no point in getting the caps if you don't have space.
2. Do a chemo info session at your treatment center to know how the chemo treatment will work with cold caps. Bring your Chemo Buddy with you for it.
3. Meet with the nurses that will do your chemo infusion. They will work closest to you during your treatment. It helps to know them before meeting on chemo day.
4. Practice “cold-capping” prior to your first infusion: The process of putting on the cap can take some practice.  It is better to practice before your first infusion in order to feel fully prepared and makes everyone more relaxed.  The goal is to be able to change the cold cap.  It can help to bring 2 people with you to handle the caps. One person to put the cold cap on; the other person to put the cold cap away.
5. Use a suitcase to carry supplies in: Pregnant women have their bags packed and ready before delivery, so why not do that for chemo?  It can help save space if you have to share a treatment room with other patients.
6. Use aluminum-free deodorant, a soft toothbrush, organic toothpaste without whitening or other chemicals of that sort in it, & alcohol-free mouthwash.
7. Hair care: Make the transition to these new hair care products as soon as possible before chemo starts, as it may take 2 weeks or more to fully clean old product residue off the hair.  Use a gentle shampoo with PH similar to that of the hair in the 4.5 to 5.5 range. Use clear shampoos, not "milky" or "creamy" ones. Wash hair no later than 3 days before and no sooner than 3 days after chemo. Do NOT use products that say moisturizing or volumizing, or that are opaque (rather than clear). Such products may coat the hair and keep oxygen from reaching the hair follicles.   Coloring hair is not recommended until 3 months after chemo is finished, because the follicles still need time to recover from the trauma of chemo.
8. Take your meds!  Follow instructions from your doctor and be sure to take medications before, during and after chemo. Include any medications for using cold caps in this list.
9.  Wear layers that open in the front during chemo day. It will be easier to change while the cold cap is on and chemo infusion is underway.
10.  Label the number of each cold cap box with masking tape.
11.  Keep hair straight down during chemo; do not bunch or pile on top of your head.
12. Don’t pull on the roots.
13. Hold hair when combing so not to strain the roots.  
14. Do not use brushes, curling irons, electric rollers, or hot air hair dryers.
15. Do not wash your hair more than 3 days before treatment. It's recommended to wash your hair only once a week using cold water only.
16. Part hair in different place each time you change cold caps. It helps avoid frostbite in each area each time the cap is changed.
17. DRINK AS MUCH WATER AS POSSIBLE DURING CHEMO DAY.
18. Use adhesive-backed moleskin (Dr. Scholl's), cut to the shape of the forehead, to protect skin when cold caps are on.
19. Trace your forehead with wax paper or parchment paper to cut moleskin to fit.
20. Have warm blankets, an electric blanket, or heating pads on hand to use, especially during and right after each cap change.
21. Sleep on a satin pillow case; this works best for longer hair.
22. Sit in a chair without a high back – otherwise working at the back of the head during cap changes is difficult.
23. Use a travel-type neck pillow to support your head/neck during chemo.
24. Find out if you can have lab work done the day before chemo, because this shortens chemo day waiting time considerably.
25. Find out if you can call in and request to have your chemo order sent up from the pharmacy before you leave home the morning of chemo – saving you up to an hour. Or find out if the infusion center can do the injection in their office.

Supplies For Chemo Days:

SHOPPING LIST (WHEN DRY ICE IS USED)

• Two square 60 quart coolers made by Igloo called the Ice Cube, (dimensions 16” x 14” x 17”); cheapest price I found was at Lowe's.
•  Dry Ice: A total of 100 lbs of dry ice in slab form (60 lbs for each cooler in slab form and 40 of pellets). Penguin Cold Caps says (40 lbs for each cooler in slab form, each slab 12” square, around 11/4” thick weighing 10 lbs each).  DO NOT put caps on dry ice until the morning of treatment. See Penguin Cold Caps instructions for details. 
• 2 Gallon Ziploc bags (for the dry ice pellets) or whatever the largest size is.  Put the dry ice pellets in them, but you do NOT close the bags or they will explode from the vapor as the ice "melts".
• Dry ice suppliers.  Penguin Cold Caps can recommend places on their blog. Ask for a discount price by mentioning your medical situation.  Check the Penguin Cold Caps forum for suggested suppliers or ask your infusion center if they recommend a supplier.
•  Gloves (for handling the dry ice). Important: Please read the dry ice safety instructions provided by the dry ice supplier.) Sometimes Gloves are carried at the dry ice supplier. Ask before you go in to get the ice.  Or, you can use thick gardening gloves. Dry ice can also be delivered. Ask the supplier what options they have.
• Safety glasses (for handling dry ice).
• Infra-red thermometer (that goes down to at least -45 degrees Celsius), and back up batteries. This item can be found on Amazon or Ebay for best price. Please note this is not the usable temperature of the caps.
• A timer - for timing cap changes. A timer on your phone works too.
•  Alcohol wipes - Use to remove the moleskin adhesive and to clean the cold caps as needed.
• Moleskin - to protect on your forehead (can be purchased from most drug stores and Targets). Cut it to shape and so it fits your forehead right to a sixteenth of an inch from the hair line. Extra thick moleskin is the best way to go for better protection.   I pre-cut the moleskin to fit on my forehead and temples. It keeps the cold off of my skin while wearing the caps at the treatment center. If the moleskin is thinner, double the layers. Moleskin can be found at Walgreens, Amazon, or Target. Dr. Scholls rolls work well.
• Panty liners - Fit and cut them to fit the shape of my ears while wearing the cold cap. You can also use them to fit between your chin and the cap strap.
• Hair pick or large tooth comb - I made sure to lightly comb through my hair and change my hair part every time a changed my cold caps.  This prevented me from getting any frostbite along my part line.
• Thick blankets & Electric heating pad - Borrowed from a friend. I wrapped it around myself all day to stay warm.
• Wash cloth or towel--- to wipe off the cold cap after use.
•  Scissors (in case I needed to cut more supplies) 
•  Masking tape (just in case you need to reapply tape to label each cold cap box).
•  STRAWS: Makes it easier to drink water while you have a cold cap on.
• HAND SANITIZER: Stay healthy. My immune system is lower because of the chemo treatments. I bring this with me every where.
• Optional: Ativan (I asked my medical oncologist for a prescription) - It helped keep me calm and helped me tolerate the cold while wearing the caps.
• Optional: Extra Strength Tylenol - Some people experience headaches from the cold. Take before putting on your first cold cap and follow directions for use.
•  Optional: Hair Cap, found at wig stores, to wear under the Cap to help prevent hair from being caught in the Velcro. It's recommended but not needed. It can be very helpful if you have long hair.
• Optional: I found this on another website. You can use socks, knit gloves and sandwich baggies - I decided to ice my fingers and toes during taxotere to avoid neuropathy.  I brought a small bag of ice with me to treatment.  I put my foot on them and then folded half of the baggy up over my toes to keep my nails and toes cold.  For hands, I put on my gloves, put a  baggy full of ice in each hand, folded my fingers into it. Then my buddy made put a sock over my hands/forearms, keeping the ice in place so I didn't have to hold the bags the whole time.  

Supplies to Have At Home:

• Hair pick or wide tooth comb - no use of hairbrushes while going through this.
•  Organic Shampoo/Conditioner - I wanted to avoid parabens, sulfates and as many chemicals as possible.  I used Whole Foods brand shampoo and conditioner. It's easy to find and cheap. Another option is to use a detangling spray, such an organic spray-on conditioner, rather than a regular conditioner. Again this helps keep the hair follicles from being coated.
•  Thin, soft elastic or cotton headbands - I used these to just keep the hair out of my eyes.  I got them at Amazon or Target at a cheap price.  Best part: gets delivered direct to my door.
•   Deodorant - Penguin Cold Caps recommends you use organic, chemical free and aluminum free deodorant while using cold caps.  I used Tom's. You can find it at any Whole Foods.
• Organic toothpaste and soft tooth brush - Biotene mouthwash and toothpaste are great, but can be costly. Ask your dentist to see if they can get a free sample. Or check out Tom's or another brand of organic toothpaste without harsh whitening or other chemicals in it. Use a soft toothbrush to brush your teeth. My doctor recommended to brush my teeth 3 - 4 times a day. Use alcohol free mouthwash. Use a baking soda & salt mixed mouthwash daily to prevent mouth sores.
•    Organic and Chemical Free Hair Styling Products - Penguin Cold Cap's probably does not recommend use of these items but for special occasions. I used Giovanni hair styling products to get the frizz under control.  You can find it at Whole Foods.
• Optional: Hair products
• Thick Cotton Headbands - Penguin Cold Caps does not recommend the use of them, but they can help cover roots as my hair started growing out towards the end of chemo (my roots were at least 1 1/2 inches long as my hair continued to grow at a normal pace through chemo!). 
• Soft Covered Elastic Hair Rubber bands - the Penguin Cold Cap website does not recommend using hair rubber bands but I did.  I exercised daily and had long hair.  I was very gentle with my hair when I used them and made sure not to put them in tight or pull on my hair when removing them.
• Optional: Hair Extensions - I had some clip in real human hair extensions I got at a local beauty supply store.  I know Penguin Cold Caps probably does not recommend the use of these, but I did use them towards the end of chemo and after chemo when my long hair looked thinner at the ends.
• Optional: ColorMark is great for color touchups. The wand or TouchPoint (magic marker size) can be used. It washes out but does not damage your hair.  

• Optional: Microwaveable Rice-pack/bean bag, electric heating pads, or electric shoulder warmers. Use the Microwaveable Rice-pack/bean bag for neck and/or body.  for your neck and/or body to help keep you warm and support your neck. These can be homemade or bought at Whole Foods, in malls, or online. There is a microwave for patient use in the infusion center.
•  Optional: Handheld Shower Sprayer - It can attach to a bathtub faucet to get water over hair only, instead of taking a cold shower. Use to wash hair once a week as recommended.
•    Optional: Latisse: Requires a prescription, and can be expensive and not covered by insurance. Eyebrow and eye lashes may not fall out until after. It is probably best to start using it after finishing chemo. 

Websites:

Penguin Cold Caps: http://penguincoldcaps.com/

This blog has some informative tips to use for cold caps. I like my list better though. :)

http://breastcancerwontdefineme.blogspot.com/2012/01/tips-for-using-penguin-cold-caps.html

Video on how to place the cold caps: http://www.youtube.com/watch?v=m87LHfAYf9E&desktop_uri=%2Fwatch%3Fv%3Dm87LHfAYf9E&nomobile=1

Tips on cold cap use and supplies from Project Rapunztzel, the fantastic non-profit that will donate a freezer to your clinic for cold cap storage. http://www.rapunzelproject.org/ColdCaps.aspx

Suggestions on how to use cold caps from breast cancer survivors. http://community.breastcancer.org/topic_post?forum_id=6&id=786991&page=1  or http://community.breastcancer.org/topic_post?forum_id=6&id=735873&page=1