Cold Caps Users Past and Present, to Save Hair
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i tried masking tape to label the boxes but it did not work due to the cold. I used 3x5 cards and slid them inside the box to keep track of the coldest caps and keep them in order. 2small towels to wipe frost. My helpers used ski gloves to deal with moving blocks of dry ice even though they were bagged they were super cold. Don't forget egg timer to keep track when to switch caps
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We use apps on our phones set to different ring tones to alert us of various timing increments. The dry ice supplier told us that any gloves work fine although rubber gloves are not recommended.
P.S. Day 15 and I'm waiting. Nervous as heck.
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Warrior....my hair "down south" started going at day 14 but no shedding until day 21 for my head. The caps will work!!!!
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Hi Warrior Women
I am having my third TCH treatment tomorrow using cold caps, so far so good. Starting shedding around Day 17 and has been light but consistent. I was really nervous after first treatment because we had trouble getting caps cold enough, so my husband now orders 120 lbs of dry ice and it seems to work much better. Monitored hair on my legs and other areas. Underarm seemed to go first, legs thinned but still have some. Dont blame you for being nervous. Good luck
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I know how you feel Warrior Woman- I am only at day 7 post first chemo and I am already wondering if my PCC's will work. I have treatment every two weeks so next Tuesday is another treatment for me.
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Welcome to all the newbies! It's so nice to see more women trying the caps. Have faith. Almost everyone here has had success with PCC's! The only gals that I know of that had more trouble were on ATC. The red devil seems to make it much harder on the hair. The caps really work. Just realize your hair will be different then when you started. It will be dryer and thinner, but hardly anyone around here needed a wig or anything. Just remember - A bad hair day is better than a no hair day. Sending warm hugs from Chicago where it is subzero!!!!
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I couldn't have said it better than mdg! The caps do work, just have faith and be diligent with your routine during the infusion. Don't try to cut corners - there's a reason you are spending time and money on PCC. Good luck to all -
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Thank you, mdg! Yes, the I have 3 more AC and then 4 T treatments- so I do have the harder one- I am praying my long red hair can hang on! I wear my PCC's for an additional 4.5 hours after treatment so it is a pretty chilly day, lol! On the up side, with temperatures -13 outside I have not had to worry about my scalp getting too hot between treatments! I will keep you all posted on the progress! Thanks for all the encouragement ladies!!
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Hi ladies,
Well, I think I went and got myself cut off from any PCC assistance. I got frustrated with the shipping process and sent a somewhat snippy email (I was also dealing with some tough decisions w/ IVF / embryo freezing and wasn't in the best place). Anyhow, no one's responding to my emails now.
I ordered four headbands along w/ eight caps. I thought they were going to be the same headbands pictured in the video, but they aren't. They're made from the same material as the cold caps and are bulky and a little awkward to work with. I honestly don't know what to do with them—I can't find any info on the website. My husband used them to make the cap fit more snugly, but they weren't frozen at that point. The cap also seems too small for my head, so maybe we'll use the headbands to get the areas the cap doesn't cover.
Was I supposed to get the black headbands with my order?
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Hi Mazie- I used the headbands at the nape of my neck because the caps didn't cover all the way down my neck. We had 2 black Velcro bands that we used to make everything tighter on my head. Did you not get those?
Have you called Geralyn at the US office? She will usually answer her phone or call you back. She used the caps a few years ago so she knows what you are going through!
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After I sent a desperate email, the local rep called and got my husband and said she'd try to find someone locally who's using the caps and could loan me the Velcro bands. My husband dug through the box again and found the straps at the bottom. Whew. Thanks to Daye and the person who PM'd me for tips on how to use the headbands. It all makes sense now.
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Geralyn used the caps herself? I had no idea.
Daye, Did she tell you that?
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Another success story to encourage you: I used PCC three years ago and only lost about10% of my hair. (TC chemo) My husband and I have helped 28 others so far and every one has saved their hair. We do it for free. They borrow our supplies and come to our home for about two hours to hear our tips and practice.
Get the caps on tight. Try not to have air space. Use the straps to get it tight. Get plenty of dry ice. We got 140 pounds for two coolers and to make sure caps were cold enough. Drink 8-10 glasses of water/day. Flush out the chemo! Comb gently in the morning with wide tooth comb and don't fool with your hair all day. Imagine those hairs trying to hold on.
I typed out some tips I learned from others. You can send me a private message if you want me to send you a copy.
I thank the Lord often for bringing PCCs to my attention through Good Morning America just a few weeks before learning I'd need them myself. Was the first to use cold caps at our big medical center. Now my doctor refers people to me to learn about the caps regularly.
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Geralyn was one of the first posters on this thread- back in 2009. She's gmp300.
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Yes Geralyn used them. I met her and she's a sweetie! I actually went to visit her in the hospital after one of her surgeries when I lived in Michigan. She had beautiful hair!!!
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Wow I had no idea Geralyn was "one of us"- i thought she was very helpful but did not know that came from being a capper herself. Good for her!
Good luck to all the new girls!! I sure hope you have great success as well.
I can't believe how bushy my hair is around the head now, and the new growth is about five inches long. I am 11 months PFC. It seems like every hair I lost came right back in triple- and wavy too.
A friend of mine had chemo at about the same time and is still in her wigs due to bald spots, poor girl. I am so grateful to penguin CO. and no I am not a "plant", just a hard- working scientist! And very glad no one knew what I went through.
Good luck everyone, may your shedding be minimal this week. It is terrifying- but temporary!
Hugs
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I wish we could "like" posts on bc.org.... I don't come on as much as I used to... But this thread is so positive and encouraging (as are so many on here) I've loved everyone's posts
Ps.. I have grown my hair the longest it's ever been, past my bra strap.. I think because I came close to losing it .. But next week I'm going in for a cut and may cut 6 inches.. Will see .. It's a mental block :-)
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Day 17 and I noticed the shedding starting yesterday which may be sooner than most people. Nothing too substantial but far more than is normal. I hope I'm not this anxious the entire time.
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WW, it gets better, for sure. After I made it past the 2nd tx by several days I felt MUCH better. I mean I still shed the whole time, which yes is anxiety producing of course - but when I compared myself to others who were not cold capping and also to the hair I lost in other places, I could see that yes indeed the caps were working for me. hang in there!
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That is exactly what I'm waiting for, Dancetrance. I just need to know that this is not the start of baldness. Once I am further along and still have hair I may relax a bit. I am just not certain at this point what the difference is between normal capping shedding and going bald. Without any treatment of my hair I am starting to look like a hippie. All I need are bell bottoms and tie dye to complete the look.
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Warrior..invest in cute headbands, lightweight hats and get creative with your hair. That's what I did! If you were on your way to baldville, hair would be coming out in huge clumps. Have faith!
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mdg - I hope you're right. I'll be happy 10 days from now if I am still just shedding. I am not sure there is a big difference at this point between the start of shedding and the start of baldville. I am having a hard time figuring out what I can do with my hair that won't place too much pressure on it. Soft headbands may work and hide the grey. I braid my hair when I workout. I use a cap after workouts to cool my head. This is a good distraction from the million other BC things I have found to worry about.
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just got questionable pet scan results. I am one year PFC. Had rads and on arimidex. Had good ct in June. Good mammo and ultrasound in Aug. Clear pet in Sept. Now this pet shows a 1 cm lesion in lung and slightly enlarged lymph nodes in chest. Onc says with chemo and all that results are clinical ly not making sense. Said he questions pet is mine. He reordered the reading of pet, a ct scan and meet back next week.
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Schoolmom- I'm wishing you strength to get through what promises to be a very long week. Please let us know how you're doing. Although we've never met, I feel a great bond with all my cold cap sisters and I'm hoping the best for you.
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Warrior, you're at the high anxiety stage and I remember it well. Hang in there. You'll start to feel more confident when you show up for chemo #2 in a few days with a full head of hair. The chemo nurses might not comment but you can bet they'll notice.
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Warrior, you're at the high anxiety stage and I remember it well. Hang in there. You'll start to feel more confident when you show up for chemo #2 in a few days with a full head of hair. Your chemo nurses might not comment but you can bet they'll notice.
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school mom, sorry to hear you are going through this...I hope your doctor is right, there must be a mistake...that's what I'll be praying for, hang in there and stay positive.
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Schoolmom, hang in there. It sounds like you have a good onc who wants to be certain about your results before doing anything drastic. That is great. Good luck these next several days while you wait. I'll be praying for a good outcome.
Amy
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school mom, I'm sorry to hear this. Thinking of you in the waiting room.
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Schoolmom - My heart is racing as I read this. Hold tight with both hands and don't let go. I am praying for your health and well being.
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