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Dec 13, 2017 10:48AM
Hello Cold Cappers!!
I am jumping online today to bring hope to all of you as you go through this process, or to encourage those who are on the fence about cold capping. Today marks 5 months post chemo for me. Yea!! (Side note, find the chemo group on BCO that corresponds with your starting month of treatment, it is a life saver for tips and support. The February 2017 Chemo group was great and we are all still in touch!)
My chemo was 4 DD AC with 12 weekly Taxol. I used Penguin Cold caps as they had the highest success with "A" the dreaded Red Devil. Note that I had one cooler and used 40 pounds of dry ice, not the 80 pounds they suggest. Never had an issue with the caps not being cold enough. This was less costly and much less heavy to lift in and out of the car. Pellets are the best!! The bricks are ok but pellets work better. Picked it up the afternoon before and packed the cooler with lawn bags from Costco to keep the ice from dissipating. It worked!!
"Penguin does not promote great success with "A". I lost about 50% of my hair, BUT, it started growing back during Taxol infusions. Day 23 is indeed the magic day for shedding to start. It is all the "old" hair that leaves, all at once. This can continue for a week or so, at least for me it stopped pretty quickly and then I just started losing a few strands here and there. My hair was thinner at 50% loss, but no one could tell I was in chemo and only my close friends could notice the difference, after I pointed it out to them. It sounds like a lot, but it really is easier to cover this up than you think. This meant I could go anywhere and not get the "pity looks" and really helped keep me positive and focused on good health. I practiced yoga 3 times weekly throughout treatment without any of my classmates knowing a thing about what I was going through. That sense of normalcy was invaluable to keeping a happy outlook for me.
By the end of chemo, I had some thinner areas and no "volume." For that I used Topix which is so easy to sprinkle on the hair. I did not use any volume enhancing products and followed the wash instructions to the letter. I did not cut my hair prior to cold capping. I think this is key, your hair follicles are used to the weight and a cut throws them off a bit. A trim is ok, but not a major cut. I had trims throughout chemo as my hair continued to grow.
I used a demi-permanent dye about a month before chemo ended as it was 5.5 months of no dye by then. The cover up powders are great, but the real dye helped a lot to cover gray and also add some body. My hairdresser is a friend and she came to the house and did it, avoiding the scalp completely. NOTHING happened, no further hair loss. Since I stopped losing hair half way through chemo, I had a huge head start back to my normal hair. I have used gels to keep the curly hair tamed, pinned it up in a French twist and so on. But finally it was long enough for a cool cut and color. I ended up with a cute pageboy/bob that I can tuck behind my ears with a lot of volume on top. The hair that is still growing in there poofs everything up so it really is a MULLET look. Cool if it were the 80's. This new cut makes the poofy work. :) I had hair that was below my shoulders to start. The hair that remained was damaged from the cold capping, no way to get around that so that is why the shorter hair cut, but again, WAY ahead of starting from scratch. I have had a lot of compliments on the cut too.
I remember when someone else came on here and shared their success AND the things they did that were not perfectly following the rules. It helped me a lot so thought I would share. Our results will all vary as our bodies are different but mostly people do very well cold capping.
For the person wondering if they can do this themselves. It is the MediPort or IV that will be the issue, too hard and painful to be moving your body around during infusion with either of those hook ups. At least that is my opinion. Other than that, you could do it. I had a helper during infusion, we left when that was done to finish up at home and I could have easily done the rest by myself. So maybe a helper just for the actual infusion?
I am glad to discuss further if anyone has questions, feel free to PM me. Otherwise, I wish all you the best in cold capping and most importantly, in your journey of eradicating cancer.
COLD CAPPING TIPS
An electric blanket for warmth, A heating pad to move around to parts that get cold.
Yoga pants and a stretchy top (easier to access the port) and a cardigan sweater over that.
Water bottle filled with cubes, drink constantly to get the chemo moving along.
I ate a lot of frozen fruit bars during chemo, no mouth sores.
Kitchen timer and smart phone - I used one as a timer for a 5 minute warning, then we could check the cap for the temperature and adjust if needed. I was the timer person, my cold capper did everything else. If the caps are too cold you can sit on them to warm them up!! We took turns doing that. haha
Ibuprophen with a protein breakfast helped me stay focused and not get the "brain freeze." A sedative will make you drowsy and it is harder to manage the process that way.
The chin strap does NOT have to be tight under your chin for the whole session, just long enough to get the cap on tight. Loosen it up so you can drink and eat!
Goody makes a Wet Brush that is great for detangling hair, works better than a wide tooth comb. I washed my hair in the shower, but the water was tepid and the pressure was very gentle.
Get a really good nights sleep before capping and it will go so much better, this is the time to take the sedative if you have them!!
Hugs to all of you, you CAN do this!! oxoxox
12/18/2010, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
11/23/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/1 nodes, ER-/PR-, HER2-
2/27/2017 AC + T (Taxol)
Prophylactic mastectomy: Left, Right; Prophylactic ovary removal