Cold Caps Users Past and Present, to Save Hair
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Shedding will slow down soon, although it may not stop. You are both at the heaviest point.
shipsgirl - that tingle-y, or slept on feeling is normal and may be for a while. It eventually goes away. Try not to let it concern you. I used to wonder and worry about mine. If I touched my hair lightly in certain areas or gently pushed it to the side, it was sensitive. Odd feelings, but nothing happened.
I think that clump you lost may have been a frostbitten spot. It will grow back. I had two small ones and while they were disconcerting and sensitive at the time, they grew back astonishingly quickly and very thickly.
Good luck ladies!
txsockmonkey - I am so sorry the caps did not work for you. ACT is tough stuff and you did your best to save your hair. Take good care of yourself and may your hair grow back lushly and quickly!
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newchallenges, Yes AC is tougher on the hair and Elasogels just don't work as well. Any type would need to be cooled with dry ice and coolers or a freezer. I helped a lady using Elastogels, and she so wished that she would have used Penguin. I hope you will reconsider going with Penguin. Cold caps are a big commitment, time, expense, following protocol etc., I don't want you to be disappointed.
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Thanks SusieQ. That helps. I'm not panicking, just trying to know what is "normal" - as if there is a "normal" in all of this.
My third is on May 16th as well. I feel like I'm only just recovering from #2 and here I am on the doorstep of #3. Does anyone else see the irony of this sledgehammer approach? For me it's preventative. I feel like it's like pulling out all my teeth so that there's no chance of getting another cavity. If the cancer doesn't kill you, the cure will. LOL
But we walk bravely into the storm and eventually, we'll be on the other side. With hair.
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Ladies,
Sorry to pop in, I have been reading your posts with great interest. In fact, this has been the single best source for me in my research in to cold caps. I am one of the 200% increase in men under 50 with head and neck cancer (thank you, HPV virus). My mom had breast cancer, and I remember all too vividly the challenges her treatment posed. You are all strong, brave, and wonderful women for taking the time to share your experiences with others.
I am in a clinical trial, and am being given induction chemo. As a man, I guess no one thought (or cared) that the regimen would make me lose my hair (99% certain, they told me). My type of cancer has a 90%+ cure rate, so they just didn't seem to think hair was a big deal. Because the cure rate is so high, my wife and I have been dealing fairly well with it, and am more worried about the treatment and side effects after (chemo, then chemo and radiation). I have a job where it would be difficult to show up bald one day, but more importantly, I have a daughter who I don't want to scare. Anyway, sorry to ramble, but I found out about cold caps here.
PCC are the tried-and-true model, for sure, but I confess I was (am) overwhelmed at all the things you must buy and do to make the system work. Please, by no means am I comparing my situation with yours, I have two induction cycles 3 weeks apart, then most likely 5 weekly (smaller) treatments with radiation. Nothing compared to what some of you have endured. Nothing but respect here. But I found the PCC process a challenge.
I just wanted to throw this out here, I found a company called http://www.chemocoldcaps.com/index.html. (This is NOT the Advanced Cold Cap company, it is a new one). The owner helped his wife through her treatment (successfully) with PCC. Bill, the owner, spoke with me for over an hour on our initial call. They are a turn-key service, providing everything you need, up to the dry ice delivery. He was trying to make a system people like us (cold cappers) could use without all the added stress of getting the caps, then getting all the stuff that go with them. Here's the catch: they use Elasti-Gel caps. Now, Bill was as honest as he could be, telling me his wife used PCCs for most of her treatment, switching to Elasti-Gels at the end. They have only operating for a new months, and don't have the hundreds of success stories I read about here. But, in the interest of knowledge being power, I wanted to throw that out there. I am going to try a fitting with one of the Elasti-Gel caps, and as a man, I may have better luck with shorter hair. Or it could not work at all. Who knows, right? But you all here have convinced me, nothing ventured nothing gained.
I wonder if the problems with the Elasti-Gel caps are people trying them on their own, without the support Frank provides. So far, the only difference I can see is Bill uses the gel caps, and provides all the gear you need on a per-treatment basis. They also provide a cooler that has been retrofitted to hold the dry ice in compartments. The protocols are all based on the half life of your specific regimen. Let me also say, Bill told me many times, whichever cap I went with, God speed. He had nothing but nice things to say about Frank, and said PCC are a solid, good product. He told me his wife is proof they work. He was so frustrated in getting all the stuff together, they started a company to provide that service. Could it be snake oil? I guess, but I don't think so...
Just a disclaimer, I have no interest in the company, am not affiliated in any way. I am a patient who is looking for information and options. And I must admit, the idea turn-key service has reduced my stress considerably. For those who are still deciding, Bill wrote an information booklet about cold caps in general (not just marketing material) that I found VERY helpful. It discusses all the companies that make caps and machines, and does not promote his own at all. He told me this was from all the information he gathered for his wife's care. I don't have his permission to copy it, but I am sure he would send it to anyone who was looking for a centralized place for information.
Sorry this is so long, I don't mean to hijack your thread, I just felt like you have done so much for me in this area, I was feeling guilty about having this info and not at least sharing it. Thank you all for your advice and courage, and know that your experiences go far beyond the responses you get on the site.
Be well and best wishes...
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rt44252961 nice to hear that men are using cold caps too. I think the Rapunzel Project offers a kit as well. Personally, I didn't find it difficult to just use the shopping list PCC included, but if you found Bill's service useful, I'm sure others will too. Thanks for sharing, and good luck to you
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rt44252961 - Welcome! It's nice to see a man interested in saving his hair. You are by no means hijacking the thread, you are adding to it constructively. Quite a few decide to use cold caps so that their children do not see a "sick" parent and become frightened and I have met others who used them so that colleagues would not know they are going through treatment, so you are not alone.
I have no experience with elastogels as I used penguin, but there have been some here who seemed to have used them successfully. I think I recall that they were advised to change them more often - after 15 minutes, and wear them a longer period and also possibly at a lower temperature, but that might depend on the thickness of your hair. I do not know what sort of chemo regimen you will be on, nor could I comment on it if I did, but I do know that Penguin caps work well with Taxotere/Cytoxan (T/C) and not as well with ACT which is very strong.
I don't know where you live, but I had chemo in NYC at NY Hospital and hired a cold cap helper recommended by the breast cancer center there who handled everything. I do not live in NY, so I would come in with my husband and stay at a hotel nearby, usually the one affiliated with the hospital. All I had to do was show up and everything was taken care of. I believe there are a few other cities that may have helpers you could hire as people on here have mentioned doing so. My helper travels into New Jersey and I am sure to Connecticut to help people.
I suggest that you should also ice your nails on your hands and your feet during the infusion of whichever chemical you are given that would cause you to lose your hair as it will also hit the fast dividing cells in your nail beds and you could end up with damage to them. They could turn dark, possibly fall off or become yellow and thickened.
Crushed ice in zip lock bags will work just fine. Put your fingers into the ice up to the first joint during that particular infusion. In my case it was Taxotere, I didn't need to do it during the Cytoxane. You can take them out for a short while if they get too cold, but put them back in as soon as you can. Some people have recommended starting ten minutes before the infusion and icing ten - twenty minutes afterwards. I didn't and was fine, but knowing that now, I would have done so just to be sure. You can just lie the bags over your bare toes.
As Taxotere can cause neuropathy (nerve damage) as well as nail damage - I used frozen gel packs for my feet. After putting a towel on the floor for insulation, I put two large gel packs on it, placed my feet on the gel packs and put two gel pack over my toes. It was cold, but worth not having any problems.
With any kind of cold caps you will need an electric blanket to wrap up in and to wear multiple layers of clothing to keep your core warm. That means several layers on your legs as well as your torso. Long underwear if you have it under sweat pants or heavy yoga pants, two layers of sweat pants might also work. On top I had four long sleeve layers, the top one was a fleece jacket and was over a cable turtle neck.
While you will keep your hair, you will lose your eyelashes and eyebrows along with most of the hair on the rest of your body. Some ladies have tried using prescription Latisse on their lashes, I did not as I have heard that it can permanently darken eye color and I have light blue eyes. If you have brown or hazel eyes it might work for you.
Whatever you end up doing I wish you tremendous good luck in your treatment!
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We used oth elasto and Peguins. The elastos are difficult to control temps, freeze rock hard and cool too quickly needing a 15 min interval. Avoid Advance CC. The owners are from Katria scam "Camp Costal."
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motherofpatient - Did you start with elastogels then switch to Penguin? How did your patient do?
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rt44...., On the contrary, all cappers welcome! Sad truth is, whether you are man or women, most oncologists have never heard of cold caps, mine included.
It is true that getting everything needed and ordering Penguin Cold Caps was very overwhelming at the time, but really-once treatment started it was fine. I hope you have good luck with Elastogels, but I must tell you that I helped a women with them and I agree with motherofpatient's description. The worst feature is that they are not quite shaped to fit the head snuggly, where as Penguin has velcro tabs for a snug all over fit.
I was fortunate that my center accepted a freezer donated by Rapunzel Project, so no dry ice was needed. Not sure where you are located, but there may be a freezer in a facility near you.
Good luck to you, I wish you the best!
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Hi all,
Ordered my penguin caps yesterday, set up a FedEx account, and downloaded the cold cap with chemo app. Went cooler shopping today- scorded at Walmart.
Chemo #1 on May 22.
I ordered the thermometer, gloves, and satin pillowcase on Amazon and located dry ice for sale at an ice creamery nerby.
At the very least this has kept me busy and not brooding
One question. My mom has offered to go with me for my first chemo but I didn't know if I would want company, frankly. Is the capping too much for one person?
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Hi tmb173
Is anyone else going besides your mom? It is impossible (in my opinion) to do the caps yourself.
I found with all the coolers and supplies having my husband at the clinic is all I need, but when I go home 1-2 friends come over to relieve him. One person is a must; two is nice to have. I hope that helps! Great job getting prepared -- it gets easier once you do it once. Best of luck to you!
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You absolutely need help! A previous CC user came the first and third times with my girlfriend. She helped at the center, the two together and then when we came home my girlfriend continued by herself for the next 4 hours. She was exhausted! It is hard work physically. I would say 2 people the first time who have practiced with you at home before the big day. You would be able to use different helpers but they always need to practice ahead of time. Good luck.
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tmb173, be sure to practice first too. When you're at the centre, request 2 chairs for your coolers. Your helpers will kill their backs otherwise.
What I learned is that stress can make the cold of the caps harder to handle. I felt I had to "manage" the time and the temperature etc. It was almost traumatic for me. THe second time, I had 2 helpers and requested that they know the "rules" and manage them. It was so calm and organized and made such a difference.
One thing about doing the caps, the time goes very quickly. Good luck to you.
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Tmb173- good luck to you. I have a feeling you are going to do great.
I have a question for you and the other cold-cappers here.. Which thermometer should I get?
Are there special kinds? Brands that do better than others?0 -
Hi kaydeesmiles,
I ordered the below because the Amazon reviews were pretty good. I don't know what others have used, but I didn't want to spend a fortune and the booklet did not recommend a particular type.
http://www.amazon.com/gp/product/B00837ZGRY/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1
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tmb173-You need at least one person to help change the caps. Having 2 helpers can be even better, if they're helpful. If they are not, it can be like too many cooks in the kitchen. Do you think your Mom would be helpful or rather feel that you would have to entertain her? One of the ways I have found to include people who want to help is; One helper can prepare each new cap and make the change. Then pass the old cap to the other helper to remove the straps, while the 'changer' is fitting the fresh cap.
I have created instructions on how to prepare the dry ice and how to pack the coolers. http://penguincoldcap.wix.com/help The instructions provided by the Penguin company were written by me 4 years ago and are too complicated. I have since revised them, they are now much easier for all new Penguin cold cap user's to understand. I didn't see an electric heated throw blanket on your list! Many cold cap user's have found them to be the most important item to bring to chemo. You'll also need to get some moleskin to cover your forehead. Good luck!
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Thanks- I'll get a blanket!
In a way I got lucky- the dry ice place only sells pellets so I don't have to break up the slabs. Penguin told me that was fine, I just might need an extra bag or two.
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Where's th link on how to "massage the caps? do you massage each one before you put it on or while your wearing it?
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tmb173--don't skimp on the ice! Get 100 lbs, especially for the 1st time.
LeslieVilla-You can massage the cap after it is on your head, every 10 minutes or so, as often as you remember. This distributes the gel/temperature evenly throughout the cap. If you forget don't worry-most women do forget to do this.
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I've had the luxury of three helpers at my first two treatments. Definitely don't need the third, but everyone wants to help so I've brought along an extra person both times. Two people are ideal if available, so you don't have to worry about timing, temperatures etc. I also have a different team of two who meets us at the house for the 4 hours post chemo so I don't feel like I'm imposing on anyone for too long of a time. It's a long day. My teams had the cap changes down to a science for the second infusion. Looks like they're doing a good job. I'm day 26 past my first chemo and still have a full head of hair. I don't want to jinx myself, but I'm starting to believe the caps might be working (although the skeptic in me won't go away just yet!)
Definitely make sure you practice with your team using caps out of the freezer before your first infusion. We made it a fun afternoon with food and a lot of laughs.
Leslie, you're supposed to massage the caps while they're on your head. I don't do it the whole time, just every once in a while when I remember.
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Just wanted to add that I went to the American Cancer Society's Look Good Feel Better program last night. It was worth it for the nice selection of free makeup alone. There were four of us and I was the only one with hair. The other women and the volunteers who ran the program had never heard of cold caps. I was educating them and felt kind of bad that they were finding out about cold caps after the fact. If I continue to be successful with the caps, I will be definitely be joining the many women on this forum who continue to spread the word, educate and encourage others.
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I ordered my thermometer on ebay. Paid $16.
Also, be sure to tell your dry ice supplier what you are using it for, and how often you'll be back for more. Mine is only charging me $40 instead of $110. There are times to play the chemo card.
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I don't think I am violating any copyrights or rules...but the info is too good not to share. At least save someone the hassle I went through of finding all this info in different places....
https://www.dropbox.com/s/n2wzrklpf4ufori/ccc-booklet2b (1).pdf
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rt44252961 - Thank you for posting the dropbox article. It makes a lot of sense to have so much information gathered together. It was a great find.
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Getting ready for round 3 later today. I figured out why I get so very tired on chemo - all the running around and lugging dry ice, and packing caps! I'm exhausted before I've even begun.
Today, my dry ice suppliers wanted to talk about the caps. I was their second customer and since I started, they've been contacted by 2 more people. They are really supportive and caring. They want to be more knowledgable so they can help others that call. How nice.
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Does anyone find this an odd venue for marketing? http://youtu.be/dg-lFx3hU5k
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Fascinating......but any positive PR seems like a good thing.
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shipsgirl - That's wonderful news about your dry ice supplier! Hope you are doing well after this round. Get some rest and take care of yourself.
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jc254 - What you experienced about people in the medical field not knowing about cold caps is all too typical as I'm sure you have discovered - let alone the public not knowing about them. I had my chemo in the same building 2 floors above where I had my radiation and none of the radiation techs had heard of cold caps - until I told them. I am now 5 months past my last chemo treatment and also tell everyone about them. My husband made a video of me with his iphone havng my last cold cap put on and this is what I use to show people what the process is like. Thanks for spreading the word!!
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shipsgirl I had number 3 today too! So far, all good. The nurses were all commenting on my full head of hair! It's always stressful though - after each treatment I think "did we do that right"?
One more to go for me - the countdown is on to June 6!!0
