Cold Caps Users Past and Present, to Save Hair
Comments
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Leslie - what you describe is a pretty common treatment. You should do well with cold caps. I iced both my feet and my fingers during Taxotere both to ward off neuropathy and to save my nails, and I took L-Glutamine. I wore many layers of clothing and wrapped up in an electric blanket which was pre-warmed about ten minutes for me to get into, to help me stay reasonably warm while wearing the caps.
Icing hands is easy, use ziplock bags of either crushed ice or frozen peas and dip you fingers into them up to the second joints. If they get too cold, take them out a bit then put them back in. Yes, it is cold and sometimes I shivered during icing, but it was worth it. Icing is only done during and a bit after Taxotere.
To ice feet, put a folded towel or a small mat on the floor, place either ziplock bags of crushed ice or frozen gel packs (as are used to keep food cold) on them and put your feet on top, place smaller gel packs or zip lock bags over your toes to save your toe nails.
I noticed some tingling in two finger tips after my first treatment. That is a sign of neuropathy, but it went away quickly after a day and I never felt it again. I have seen the damage chemo can cause fingernails if they are not iced - they can turn black and fall off or get thick, ridged and yellow, so I believe it is worth the effort to protect them. Some ladies paint their nails black the day of chemo as I believe light can damage them. I didn't know about that, so didn't do it.
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How do you go about getting the cold caps? Do they bring them to you for each treatment? I read about the dry ice but not sure where I get that. Do they have reps in different areas that can help you put them on correctly? I'd hate to do something wrong and have my hair fall out!
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Leslie- A good place to start is Peguincoldcaps.com. Also busy yourself reading through this thread with a pen and paper and start a notebook with tips you pick up along the way. It's an education and it takes some time and effort to figure it all out but it's worth it:)
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Leslie, there are a few Penguin reps out there, but not many (to my knowledge). There happens to be a wonderful Penguin rep here in the Twin Cities (Minnesota) who was a great help to me. I know there are some prior cappers who are willing to help newbies. Where are you located? Also, check the Rapunzel Project website for a list of chemo facilities that have medical freezers (eliminating the need for dry ice). There may be one in your area. I believe there is a company out there (Chemo Cold Caps?) that will supply dry ice and help with capping, but I believe they use Elastogel caps, not Penguin. One or two people here used that service, and I believe one was quite happy with it and one was not.
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Where are you located Leslie? Maybe there is a former capper in your area that could help you learn how to do the caps. I had two helpers on each chemo day - my husband and a friend. Some people only had 1 helper and did fine. You will need someone to help you though. I also have a video of my husband putting a cap on me that I can email you if you PM me your email address. Since it is at my old cancer center and nurses are in it I don't feel ok posting it but I will email it to individuals.0 -
Hi, Leslie :-)
When I first started out with the Penquin Cold caps, I went here:
https://penguincoldcaps.com/how-it-works/
There is a drug compatability list, a video showing how to put the caps on correctly, etc.
Then, I went to "Rent Now" from the penquincoldcaps.com site.
I filled out all of the necessary information, and I was contacted
by a Penquin Cold Caps Rep. She sent me a lot of information on what supplies I needed, information on how long to use
the caps before, during and after chemo for my specific drug cocktail. What I could and could not do with my hair as far
as coloring, washing, blow drying, etc.
And this forum has an amazing group of people who want to help others be successful with saving their hair.
God Bless each and every one of them!
Hope this helps.
P.S. Granted, I am not finished chemo yet, but my hair has survived through 4 Taxol Treatments and 2 A/C treatments so far. I have had shedding, but you would never know I am going through chemo treatments.
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Hi, again Leslie.
The Great Mods here have also put up information on the BCO Main site Cold Caps that may provide some quality information.
Good night.
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Hi, Gatomal.
How are your A/C treatments going?
I hope your holding up okay. I can not imagine going through all of this pregnant and with twins!
Ugh, just going through pregnancy/chemo alone at any time would be extremely difficult.
You must be some woman! I know I wouldn't have the strength to do it.
How is your hair holding up with the A/C?
I am also now on: Adriamycin, Cytoxan.
I went through Taxol first and that was a breeze for me compared to this A/C stuff. My MO dropped my dosage by 15 percent last Thursday because I couldn't handle the 2 syringes. I wasn't very sick to my stomach, it was my head. I was in a major fog for 4 or 5 days. I was very worried about that fog or haze not wearing off. I never ever experienced anything like that before in my life.
And I need to be able to work after all of this.
At least, my 2nd infusion was not as bad...I still feel rough, though.
Hope your having a nice, relaxing and pain free night.
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I live in the metro D.C. Area. I saw there's a cancer center in Fairfax, VA, not far from me, that has the refrigerators but that's not where I would be getting the chemo.
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Hey Leslie,I did Penguin Cold Caps 5 years ago and I believe I am close to your area. My husband did a great job with the Caps and we have shown some people how to use them. I have been to the cancer center in Fairfax. They have some great relaxation classes...
Please let me know if you would like to talk.
Ang7
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joeyjamesmom...I'm doing okay. Finished 3 AC treatments, 4th and final next Wed. Then onto Taxol. I don't know if it's the pregnancy, my husband's brute force putting these on super tight, or just luck. Overall, I don't know if I am tired from chemo pregnancy or both, but I am still slightly nauseous every day and have to take my zofran 6-10mg per day. Here is my uncombed bed hair this morning. Notice the roots. I've never let them get this bad, but I am happy to have roots at all.
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Hi, Gatomal.
Good for you on almost being done with the A/C.
I can not wait! If all goes as planned, I should have my last A/C treatment on Nov. 6th.
Your hair looks AMAZING! It looks really thick and healthy :-)
I have the root thing going on too, but I have lovely shades of gray mixed in with my brown roots.
But, I am thankful for what I have.
Hopefully, my hair will make it through the last 2 A/C treatments.
Have a good one!
P.S. Thank you very much for responding and with a pic!
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Wow Gatomal, your hair looks really great after so many treatments! And i have to say, you are amazing --- going through all of this pregnant with twins????!!!! God bless you. I can't even imagine.
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Gatomal, you're giving new hope to all the AC cappers. Make peace with those roots because it means not only is your hair still on your head, but it's growing!
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Hi Ladies!
I had my first chemo last week- I'm hoping I did the capping correctly! I did get some freezer burn/frostbite on my hairline. I have a widow's peak so it was tough to get the moleskin just right without ripping hair out. I also used black nail polish and iced my fingers and toes hoping that will get me through Taxotere. I'm feeling good, just have this HORRIBLE and random acne. Does anyone that had this after treatment have any pointers? The onc nurse I talked to today thought it was a reaction to the perjeta. I've been using cetaphil and taking benadryl but it's still here 9 days later. Thanks for all the tips and tricks from everyone!
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I use the squishy moleskin, it's about 1/4 inch thick, and I cut a little V out of the top, since I have a widows peak too. I use the thin moleskin over my ears folded over the top ridge of my ear to stop any frostbite, and use two skinny puffy strips between my hairline and edge of brows too. I change my part at every cap change, and my husband uses a big rolling pin to shmoosh up the gel and get it into the seams of the cap. I also do the whole 4.5 hours after which I'll continue with taxol( even though pcc said after four taxols I could go down to 4 hrs. I drink 3 liters of water during chemo, and barely have red pee by the time it's over. I haven't been good about taking silica etc, since they tend to make me nauseous. I also have the medical grade freezers available to me at UCSF.
I am really wondering what will happen in regards to shedding after delivery. I really think that may have something to do with it, as I still have brows and lashes, although I have been using Latisse too.
I am happy every day I have hair, especially since my onc said it was a waste of time to cap. Even now he says "don't get your hopes up". I have clippers ready to go, and a wig if I need it. I'll keep you all posted when I start weekly taxol.
So nice to hear " I don't know how you do it" because I read stories of people working and who have kids, and I can't imagine having to go to a job all day. My mom has moved in with us through treatment, and she helps w the toddlers all day while I lay in bed most of the time. I have three weeks between ACs so this week is my better week and I'm interviewing nannies for full time work when the babies come. I just can't do surg( c section and lump) chemo and rads with two sets of twins. But I'll do anything to watch them grow up.
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Gatomal~
Wow...My twins are in college now but they still remember my Cold Cap days.
2 sets of twins? What a blessing! Hope you are able to find time to rest...
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I love this photo of Killerfunbags' first chemo! With cold caps and ice for hands and feet, I can imagine I'd be freezing! But I'd do anything to save my hair and to stop neuropathy. If I go with chemo ( getting a second opinion on Tuesday), I'd be starting in November so at least if I show up in a ski jacket, it won't look unusual!
Thanks for all the tips! You ladies are the best!
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killerfunbagz - I had awful acne after the first couple infusions. One time it was so bad that I was convinced it was folliculitis and washed with hibiclens - which worked. I thought it was steroid related and since they have lowered my steroids, my breakouts are less but still there. Then I read a case study about acne like eruptions with treatment of human epidermal growth protein (her2 and other types) resulting in folliculitis and being mistaken for acne. The treatment recommended was clindamycin and oatmeal lotion. So instead, I wash with oatmeal and use epiduo from my derm at night. Acne all gone. There is a youtube video of a girl showing how she washes with oatmeal. Oatmeal is soothing and gets rid of acne and infection. Look at bubzbeauty oatmeal wash on YouTube.
On another note, just washed my hair. I have come to absolutely dread washing it. Between the cold water, lengthy process and then the massive amount of hair fall afterwards - it's a nightmare. I know I'm probably only losing the same amount I normally would if I was treating my hair as I usually would pre-chemo. Yet that voice in the back of my head is telling me that I'm losing a lot more than that and I'm scared for what the next 4 weeks will bring. I need that negative voice in my head - one telling me I'm losing too much, reminding me of the chance of reoccurrence and all the other horrible things this cancer bring- to just shut it down.
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I am 17 days past my first treatment, using PCC. Had a decent amount shed today but have only washed it 3x since the infusion using Accure from whole foods. I'm wondering as it is shedding should I be running my hands in my hair to remove loose strands or am I pulling out hair that would otherwise stay put? And my scalp is so itchy with build up, it's so hard not to scratch! Have any of you washed with baking soda/vinegar? I'm wondering if that would help with build up.
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hollyD - I considered baking soda wash but ultimately determined it would be too harsh. I did an apple cider vinegar rinse often when I first started because my scalp was itchy, too. I also switched to Giovanni tea tree oil shampoo. The combination worked
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thank you @DaniellaD, will try that! Does shedding start and stop after each infusion or is shedding pretty continuous? I have a large amount of hair so what I've shed so far isn't noticeable at all, I'm at 18 days now. 2nd infusion is Oct 23 this week. I'm expecting a larger amount the next time around like many here have mentioned. Just curious if it stops in between treatments!
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Hi Holly. You won't necessarily shed more after infusion #2. Everyone's experience is different, and there doesn't seem to be any real pattern. Some experience an alarming big shed at some point, some continue to shed lightly but steadily throughout chemo and some (like me) don't shed significantly during chemo but continue to shed for months after chemo ends. Somehow, the overwhelming majority of TC ladies end up in the same place- with enough hair that there's no need for a wig or other head covering. Your hair will be noticeably thinner to you, but not to others. You're at that scary place right now where you wonder if this will work, at day 18 you would be losing all your hair if not for the caps. Hang in there. You will walk in to your second infusion with a full head of hair and a little more confidence in the process.
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Dear All,
Any PCC users in Atlanta? I am considering this option, and my treatment starts soon. I would like to talk to someone who when through the process successfully.
thanks.
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Daye is from Atlanta. You may want to contact her (search by that member name).
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@jc254, thank you! That is all I needed to hear
I have shed so much it seems by what I've skimmed out in the last 24 hours, but it isn't noticeable looking in the mirror, so I know I'm being overly paranoid. I couldn't imagine having to go shave my head at this point, I know day 18 seems like the day of reckoning for most. It's been steady since yesterday morning so I wondered if that continues or if it slows at some point and then starts again after infusion 2. 0 -
Thanks for inspiring answers jc254 :-)
Curious how long you continued to shed post chemo? I am 3 weeks PFC, and while I lost very little hair during tx (maybe 10%?) I somehow feel like I am losing more now - could just be paranoid, but feels like it's all over my desk at work, on my clothes, etc.
PCC can't really offer a timeline for when I can get back to more normal routine (like normal washing, and a haircut!). I don't want to be impatient and mess up all my hard work so far, but it's hard not having a goal in mind for a normal shower...
Would love to hear any experiences!!
Thanks in advance,
Rain
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RainDew, that sounds exactly like what I went through. Let me reassure you, it will stop but it might take a while. I didn't lose that much hair during chemo, but afterwards shed for about 4 months. The shedding got pretty heavy at times and was all over my desk, my car, clothes etc. You'll probably find a few posts of mine from September of last year when I was in a bit of a panic thinking it would never stop. It all turned out fine. The shedding slowed enough at 3 months PFC that I felt comfortable having my hair colored. It finally stopped completely at 4 months PFC. As long as you don't do anything drastic, I think a hair trim soon will be ok. I had about an inch cut off each month after chemo until it got back into shape with no problems. I would wait for normal hair washing, blow drying etc for at least a couple more months - how about Christmas as a goal?
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nottoday- just sent you a PM with my phone number and email!
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thanks jc254 - helpful to hear how (and when!) it stopped. I'm not quite panicking yet, but developing some pretty sparse areas around the nape of my neck and above my ears...still have coverage, but surprised that it seems worse PFC!
Glad to hear it got better in your experience...will keep you guys posted.
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