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Jul 29, 2018 11:35AM
Hello my comrades! I just wanted to tell you of my cold capping experience and give you as much info as I can, so you will be prepared for the trauma of losing lots of hair, but hopefully keeping enough to cover your head! I am more than happy to tell all about this process so please let me know if you have any questions or need any clarification. I absolutely hated the process of cold capping- it made me feel more and more nauseous every time, but I would do it again, and that’s saying a lot!!!!!! Perhaps Ativan would help with the nausea?
First and most importantly, HAIR TO STAY is an organization that helps you pay for this!!!!!!!! It is an easy application and they paid for more than half the cost. Second, and of equal importance, penguin cold caps loaned me “discounted caps” when I told them I couldn’t afford their caps. I don’t know if this was just my lucky day, or what, but you can always ask.
I started with a VERY thick head of hair. First of 4 doses TC March 19th. First big hair loss was around 18 days later. Lost A LOT of hair and it was horrific!!! Bathroom waste basket seemingly full of hair for a couple of months. Combed daily in the AM with wide toothed comb. Used scrunchies (cringe, not my thing) to prevent extra pulling. Washed my hair every 4 days at the most, despite daily exercise! Don’t be surprised when you have more hair loss after showering. Used organic shampoo and organic leave in conditioner (kenra). Shedding will continue every day, but will eventually lessen. Hair will be all over you, your floors, bed... I now dread the sight of loose hairs!!!! Last dose May 21st.
I am now a couple days shy of 11 weeks post final chemo. Hair is still shedding and I scour my scalp for new growth daily but am not yet finding it and worry it may not come. I’m not sure how this would work after cold capping but I guess I would only keep what’s left after shedding finally stops, which may be another couple of months (gasp!).
Pros to cold capping- NO ONE KNOWS what’s happening to me that I don’t tell!!!!!!! This is hands down the most incredible thing because the way some people treat you when they find out can be soul crushing- They just don’t know how to person with you anymore. And when it’s all over, this is one way you can more quickly return to some semblance of normalcy. And it’s also one way you get to rule your fate. You wanna shave your head when this is all over, it’s your prerogative, but cancer didn’t decide for you.
Cons: people that do know about what you’re going through may not be as empathetic as you may need because they are not constantly reminded of your situation by your baldness. And also, as previously mentioned, hair...literally everywhere.
And after all of this, I still have lots of hair! I don’t have any bald spots, but do have significant thinning on top. But it is completely hidden when I part my hair on the other side. I don’t know this will work the same for you, but hell, it’s worth a try!!!