Cold Caps Users Past and Present, to Save Hair
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If you're using Penguin caps having a freezer is easier than chilling the caps with dry ice. But, you need to make sure it's the right type of freezer, and not a plain household freezer. It must be rated to reach -34° C. You should also bring @ 40 lbs. of dry ice to cool caps that are too warm. I have had people mess with the temperature setting on the freezers, and had it not been for the dry ice the patient would have had to cancel chemo for that day. I just finished helping a woman who has been using the Elastogel caps. They worked great! She had 4 TX of TC and told me she thinks she hasn't lost ANY more hair than prior to chemo. I put photo's of her progress on the website Care for Hair. If you're planning to use a bio-medical freezer with the Elastogel caps you will need to buy the same number of caps that the Penguin company rents for those with freezers, which is 14. And, I would still bring some dry ice along. I have had to refreeze caps several times. It is assumed that 14 caps are all that are needed chemo, that's not always the case.
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Dry ice vs. freezer: freezer is cheaper unless you have a great deal on dry ice. We paid over $100 for 80 lbs for each treatment. With the freezer you need to rent more caps as you cannot reuse them. With dry ice we needed 8 and used each cap twice as they were refrozen quickly. With a freezer you have to stay at your center to cap post chemo-three to four hours. With dry ice you can head home. I see pluses and minuses to both for sure. Having a freezer reflects well on the center, though. They clearly support cold capping!
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I think a medical freezer would be better and easier, but a lot of us didn't have that option. We had to drag in coolers of dry ice for every treatment.
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So I was thrown for a loop when I went to my MDC meeting today. They now think I should have Dose dense AC-T. 4 times every two weeks then 12 weeks of the Taxol every week for 12 weeks. I see some of you have cold capped with the protcol. Have you had good results. I seems like so much work to cold cap 16 times when I thought I only had to do it 4 times with TC.
I am so upset.
Just trying to decide whether is is worth it now.
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melb, just to preface but I haven't started chemo yet, just trying to get all the info like you are too. I've seen both success and not-so-successful stories with CC and ACT. Curly I think is the most recent to have gone through it. Not the success she wanted, BUT she still has hair on her head. There seems to be a 50/50 chance of success with ACT. Looks like I might be going down this route too and it's definitely upsetting. But I might still try it b/c I'll never know if it works if I don't, right?
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I did the four AC with 12 weekly taxols. I cc the whole time and had very good results. The 12 tacol regimen is supposed to have less side effects or at least shorter-term side effects, important for things like neuropathy. It was worth it to me to try and reduce the sometimes permanent neuropathy that people can get. I also iced my fingers and toes during tacol for this same reason. It was difficult. I took pain medication in preparation for it. I am glad I did. I did not have neuropathy, not did I have problems with my nails. I'll post a photo of my hair six weeks pf
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I also did 4 rounds of AC and 12 of taxol and had good success with the cold caps. During the AC I definitely shed more, but didn't notice as much by the time I got to the taxol. Although it seemed like a part time job saving my hair, it was worth it 100%!
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Forgive the roots. I've never been happier to have roots though. I was very lucky and had virtually no hair loss, but I was pregnant during chemo, which I don't recommend as a strategy to keep your hair! Lol.
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Thanks so much StefLove and Mishyp and the pictures really help Gatomal.
How long of a day is it when you cold cap during the taxol rounds. I thought my oncologist said you are only in the chair for an hour with taxol. Is that right? I might have misunderstood her.
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that's right, but I would cap for 50 min before, one hour during and four hrs after. It's s big dsy, but was worth it to me.
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melb44....I too am on AC followed by weekly Taxol. Did dose dense AC in Feb & March and just had Taxol #2 yesterday. I would say I am down 5-10% of my pre-chemo hair. To me the cold-capping is the worst part of chemo. Luckily, I really haven't had that bad of side effects. During the AC treatments, I wore the caps for a total of 7 or 7.5 hours. 1 hour for the pre-meds, then 2 or 2.5 hours for the chemo infusion and then another 4 hours once chemo had finished. Makes for a very long day especially since my drive is another hour each way. Now that I am on Taxol, the infusion is only 1 hour so my cap-wearing time has been cut to 6 hours. I agree with you in thinking that 16 times is a lot; however, I am so glad that I am doing it for my everyday sanity. I realized today is my half-way point for chemo in terms of months (not treatments, though). 2.5 months completed in a 5 month plan. Yay! I'll post a picture, so you can see my hair situation after 6 chemos. Good luck! Angie
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Wow! You look amazing Angiel! Are you using the PCCs? You all are really helping. I almost had a complete melt down in my MDC today. My oncologist had said probably 4 TCs and to go from that to 16 seemed like more than I could handle but maybe I can. Of course the price goes way way up then though too.
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You guys both look amazing! Definitely makes me feel a little more relieved. I'll hold out the complete freaking out until I see the oncologist Monday.
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looking good Angie! Hang in there!
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Thanks Ladies!
Yes, Melb44, I'm using the Penguin Cold Caps. It really helps to have inspiration from the ones who have gone before us -especially with the same treatment - and have had success. For me that was seeing Gatomal finish at about the time I started this process :-)
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Angie and Gatomal - looking great! If only there were some way of determining why some people do so well with the AC/T regimen, and some do not.
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I know pattiMN! It's a lot of time, pain and money to see if it works. I was going to shave my head before it all started, and my MO said it wouldn't work (male) with AC. But my Breast surgeon (female) said 50/50, and my husband said lets try and see. If it doesn't work, you'll know when you want to shave it, and if it does work, you won't have to. Either way, if we don't try, we'll never know. So cold caps are kinda like life, I guess.
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AngieL wish my hair looked as good as yours... My bald spots i can attribute to frostbite, where it just brokemy hair off, so without that i think i would look better... Im hanging in there, round 3 of Taxol in am, i just wish it would start growing and begin to fill in some, shedding has eased up ... I will be so glad when this is done, that is if i have any hair left!!
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If you have medical expenses over a certain amount of your income, you can deduct the price of the cold caps from your taxes. You can include co-pays, travel, and supplies so it adds up.
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I just wanted to say out loud that after tomorrow's infusion I only have one left (of six, every three weeks, sometimes with delays because of numbers). And guess what? My oncologist for the first time mentioned that he suggested cold caps to a patient based on my experience. (He said she has this long red hair. I'm all, "Her hair is her thing." He's all, "Her hair is her thing. Can she contact you for advice?" Well yeah. I also suggested that he refer her to this site.) So don't lose heart newbies with doubting staff members. The staff will always be skeptical and sometimes even critical or mean in the beginning if they have no experience with the caps. (I wrote a letter to my very sweet onc after my first infusion the nurse was so dreadful. He totally had my back. Nobody said a word after that.) But every success story means we have that many more women who get to keep their hair. What mdg said, possibly not the most glorious hair they've ever had, but plenty for most of us to keep our privacy and healthy self-esteem. The sense that we're healthy. What a huge difference that makes. Just to be able to go out for drinks with your girlfriends and feel normal. Or anywhere for that matter. Just to have your kids look at you and feel ok and safe. It's a big deal.
StefLove, I kept having nightmares that I had cancer in the beginning too. Then I'd wake up and all … crap. Anyway, now I have nightmares that I ran out of Toppik. I don't know whether to laugh or cry. I think laugh.
Anyway, onward ladies. Wish my hair luck for the last two sessions. And good luck to all of you just starting out. And *#*)%^ cancer.
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Tripper4ya, btw, my hair is beginning to fill in and I'm not done with treatment yet. (I started taxol/carbo in January.) I have hair growing back around my hairline and these bristly patches scattered throughout that I assume are new hair growing in. Hang in there. Use your Toppik or whatever. It's hard, but you'll get through it.
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Wishing you the best pch, almost done!!!
Privacy dealing with this is the big thing I'm looking for. And to live as 'normal' a life as possible while doing it. I've hated attention my whole life, I hate pity parties so this is all throwing me for a loop.
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Question for you AC-T ladies. When you are in the T weeks you need to stay 6 hours since you need to cold cap before and after? This would be vs the 1- 1.5 hours you would need to be there otherwise?
Were you able to do it with just one helper?
It is such a commitment. I am worried about finding a helper that many times all summer long.
My husband is trying to be supportive but he thinks I should just get a wig. I can't imagine he will be all that much help.
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Well said, pch! I'm all for anything that helps me keep my privacy intact, my self esteem relatively healthy and my kids feeling safe! Amen and cancer can take a flying $#&@!!!
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Tripper, glad to hear that you're still hanging in there and that your shedding has eased up. After today, you only have 9 weeks left, right? Yay! We are over half way done in terms of weeks & months!!
Melb44, you are correct in the time needed for a helper once you start weekly Taxols. It is 6 hours. Depending on if you will be using a bio freezer or not determines if you need to stay at your treatment facility. I know some cappers that use coolers & dry ice leave after their infusion is completed and just continue changing the caps in the car, at home, etc. in order to get the full time. If your caps are being stored in the freezer, your time must be spent there.
Luckily for those of us in the Minneapolis area, there is an experienced cold cap rep available for hire to do the capping for you. She also provides training classes so that your friends or family can be trained to be your cappers. She is very efficient and thorough with the capping and can easily handle capping a full day by herself. I did have 2 girlfriends trained by her as back-ups in the event that they would need to step in at some point since I've got 16 treatments. I think one person, once trained, could manage the capping process; however, another set of hands may be nice until everyone is comfortable with the process and your routine has been established. My husband didn't want to be involved in any way with the capping, so I was excited to find Susan - the CC rep and also had to recruit some girlfriends. Good luck!
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I am having my final Taxol/ Herceptin chemo tomorrow, 12 of 12.... With PCCs I can say I have lost no hair. My hair is nearly to my shoulders, don't ask about the roots however as I got fifty shades of gray, and red going on up there. The reason I know I've lost no hair , is that for a month before I started chemo I started on the PCC hair care regimine, and checked the filter in my shower after every hair washing. I lost no more hair in fact less than I normally would. The cold caps are amazing. My onc nurse had her doubts but seeing the results with me ( there is only one other capper besides myself, the facility has medical freezers) and seeing the NY Times piece on PCC she wrote a letter to the director of oncology nursing supporting the caps!
As for me, after tomorrow they're getting shipped back to PCC, I'm so grateful my doctors at UCSF suggested them
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Suladog -- Good luck tomorrow and congratulations! You made it!
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Suladog, congratulations! I'm happy to hear from you, and happy to know that you lost no hair. I have 5 more Taxols. My hair looks quite good so far and it makes a big difference how I feel nowadays
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Congratulations Suladog! I can't believe it has been 12 weeks already. So happy you were able to make a difference at your facility and promote cold caps!
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That is so wonderful Suladog!!! I am so happy for you. That is wonderful that your doctors suggested them. I think my whole medical team and family thinks I am crazy other than my best friend. She was so supportive and said they all don't know how determined you can be.
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