Cold Caps Users Past and Present, to Save Hair
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rwns- oh no, can you use some prescription meds like oil- to grow it faster- I forgot the name .
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What shampoo are you ladies using?
Thanks! Cindy
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SHAMPOO: I hardly ever wash my hair. This means that it doesn't usually look super fluffy, but it also doesn't look like a grease bomb--I think chemo kind of dries it out. I use the shampoo that came with my Paxman system--I think that they claim that it doesn't contain "sulfites or parabans," but I have no idea whether that's just their PR hype or whether it matters.
Instead of washing my hair very often, I wear a shower cap during most showers. I wear a "snood" at night, to keep a mess off my pillow, since I certainly do shed some hair every day. I comb w/ a wide-tooth comb, and I often wear a hairband or a kerchief to cover up some of my hair. I'm retired, so I can usually have a casual hairdo.
I do wash my hair on Day 3 or 4 of each infusion cycle---Penguin CC Company recommends this, as it's the time when supposedly a lot of the chemo comes out, and this is a time to clear some of the poison off your scalp. I'm GENTLE w/ my hair, trying not to pull it hard, or style it with a bunch of heat near the scalp. Penguin (not my company, I"m using Paxman, but Penguin has published a lot of pdf and guiding literature for using their system) suggests that washing hair weeks 2 and 3 is just fine, but I've just decided to minimize washing, hoping that it will keep my hair in a bit longer.
COLD CAP USE ON INFUSION DAY: I've been pretty obsessive about how I put my cold cap on. I use the conditioner that came with the Paxman system, and I wet the hair a lot at the scalp, with water and the conditioner. I also use the brush that they send to work it in and slick down the hair, so that the hair near the skull is flattened down and the cold can really reach the scalp. Then, I work the inner cap down so that it's firmly around my whole head, including hairline, and then I cinch the outer cap tightly, using the cords. I find it to be extremely uncomfortable for about 15 minutes each time so far. Horrible and icky and freezing. Then, suddenly my brain stops complaining. Just gives up, I guess. Gets accustomed to it, I suppose. So, I haven't used painkillers, although, each time, I think, "Wish I'd thought of taking a couple of Tylenol first," but then after 15 minutes, my discomfort really goes away.
My protocol (customized to my chemo and the machine, prescribed by the Paxman company) entails wearing the cold cap 30 minutes BEFORE infusion (after pre-cooling the machine for about 30 minutes) and also 90 minutes AFTER infusion ends, and it's a LONG TIME to sit there with all that freezing-ness, but I am glad I've done it....
AND ICING FINGERS AND FEET: Just because I guess I love torture, I also set my bare feet on an ice bath (9x11 cake pan w/ ice + water +washcloth), and my fingers also in a Rubbermaid container w/ ice water. I take them out when they scream, but this is for just about an hour, and I usually make it for 1/2 or most of the time, with some de-numbing breaks. This is because there's anecdotal (not yet empirical evidence-based science) support for this helping to prevent some of the neuropathy caused by Taxotere; I do this only during the Taxotere infusion. I DO have neuropathy in my feet, but not hands. It's a vague numbness--always sets in about Day 3 after an infusion. My oncologist is completely neutral on this ice bath treatment, and he says there's no evidence to support this as a way to prevent neuropathy. I'm doing it anyway. Just in case it helps. Not necessarily sensible scientifically; just a fear-based decision, frankly.
Like the small but real percentage of people who suffer permanent baldness after Taxotere chemo, there's a small but real percentage of people who suffer permanent neuropathy, so I'm just doing whatever might work to prevent that. I'm a classical pianist and a hiker, so my fingers and my feet have a big role in my quality of life going forward after treatment.
I'm one week past my #3 TC infusion; one more still ahead.
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I am in the process of finding a medical onc that I feel comfortable with. I’m located between Memphis and New Orleans (and would not be opposed to Texas) but one of my main concerns is selecting one that has access to Dignicap or Paxman. Did anyone struggle with this? I wasn’t sure if doctors can send you to other locations for treatment. Likely not..... ugh. I. Am. So. Scared.
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Sadlynew201...
It's definitely worth the time to find an oncologist you are comfortable with! I changed doctors about 3 days before I was supposed to start chemo, with one of my reasons being access to a Dignicap machine! Both Dignicap and Paxman have a location finder on their websites. A quick glance shows Dignicap has 3 locations near New Orleans and 5 in Texas, Paxman has 2 near New Orleans and several in Texas. Not sure if Atlanta is an option for you, but both have locations in Atlanta too.
Good luck with your search! You can do this!
Kim
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HikingLady,
You look great! Love the beautiful silver!
I'm also icing hands and feet with the same reasoning, not that I'm a concert pianist, but still want to do whatever might help to avoid neuropathy!
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kdrake, thank you so much. I honestly feel crazy basing a decision on access to a machine but I may still be in “shock” from the diagnosis.
Does anyone have any input on Dignicap v Paxman? Preferences? I see that Paxman is newer.
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RE: Dignicap vs Paxman
Just looking at Dignicap online, I see that its set-up and components look just like Paxman---same exact idea, and I'm using Paxman. If you do end up having a choice, maybe choose whichever company sounds the most supportive on guiding you to a good fit. Or maybe price, if there's a huge difference. Paxman treated me really well, was available when I had questions, and they even accommodated a size change.
When I was initially sized for my cap (at my oncology clinic, by a medical assistant) it just wasn't quite tight enough, and a Small sized outer cap ended up cinching the whole thing on my scalp more successfully (than a Medium sized one) over a Medium inner cap; I returned the too-big Medium outer cap and they mailed me a Small size in a really timely fashion.
My impression is that no one has studied, definitively, the relative success of these systems. And, I also sense that getting a really snug fit is the secret, and seems to be possible with all of the systems, from what people say on this forum and elsewhere.
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I love my oncologist and everyone in her office. But no cold capping system on site. I rented the kind you put on dry ice and brought them there in a rolling cooler. My company was Arctic; many use Penguin.
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How nice to have options! Dignicap was the only machine available in the KC area - St. Louis has several hospitals with both Paxman and Dignicap. I considered Penguin and Arctic but really was swayed by having the machine do all the work.
I didn't realize that Paxman ships a cap to you. The Dignicap at my infusion center has 2 caps of each size (both the silicone inner and neoprene outer). A really snug fit is vitally important! I have a really large head apparently and have to use the largest cap size - mostly because of my hairline. The next smallest size doesn't quite reach from my front hairline to the back. But we have to "shim" the large size at the crown with pads to get proper contact with the crown.
I have spoken to Dignicap's customer support and they were helpful. I know that they have reps but have not seen or talked to anyone local other than a friend who was actually the first Dignicap user locally 2 years ago. If you can have someone from the company help with your first infusion with fitting and making sure everything is really snug, I think that would be ideal. The nurses at my infusion center do the fitting and are responsible for getting me into the cap and managing the machine, but I really need to be aware when they're adding the pads to make sure there's good contact.
I know scalp cooling is not always successful with my treatment protocol. But to be where I am today and to still have hair makes it so worth it!
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Cindy- Paxman but they have ingredient Sofium laureate sulfate - that is not good , I also use Jason organic no sulfate parabdns- just go to the maxx they have plenty of natural ones just read label
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Many people are requesting data for Paxman and Dignicap, the scientific papers can be found in JAMA 14 February 2017 for both companies (unfortunately I cannot post links....):
Here is a quick summary of the results:
Succes rate:
Dignicap 66.3%
Paxman: 59%
Comment 1: The Dignicap results are only for taxane based chemotherapy treatment; 59% is for the part of the Paxman treatment that employs taxane based chemotherapy (the relevant comparison) the overall result which include antracycline based chemotherapy is 50.5%.
Comment 2: The endpoint of the studies are different, Dignicap has the endpoint 4 weeks after the last treatment, whereas Paxman has the endpoint after 4 treatments. My understanding is that there are on average 6 treatments during taxane based chemotherapy. To me, that is a significant difference.
Comment 3: The Dignicap results are not using DigniClickCap. It has been reported here and elsewhere that it significantly improve the contact between the inner cap and the scalp. There are unfortunately no new studies with the ClickCap.
Comment 4: My understanding is that the cooling of the scalp is more gradual with the Dignicap as it uses a more advanced computer based system for setting the temperature. Sensors are located at the scalp with the Dignicap system and at the cooling device in the Paxman system.
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As far as I know, there are no comparison studies of Paxman / Dignicap. There are differences in each study setup, making direct comparison of result data difficult. The 2 most recent clinical studies that I know of are both german studies from 2018, reporting more than 80% success rate for taxane treatment and more than 70% success rate for combination treatments with anthracyclines and taxanes. Both of those studies used the Paxman system. To get the cap fitting right is definitely the most important thing, regardless of system. (Forum did not allow posting links to the studies).
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Hi everyone, yesterday I did my third cycle of TC. I'm using Paxman System. I lost a lot of my hair and have some balds . I stayed 30 minutes before and 2 hours after treatment. I tried to attach photos but I don’t kwow why I’m not allowed.
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Fernanda, once I posted and forgot that I didn’t sign in, so make sure you log in. And when you start writing above there are some options to use pics- it is 2 small triangle in a frame , and thee is Smiley face - I did use pics for thread here hope you can find out!!!
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Hikind lady - thsnk you do much for explaining staff. I talked to Paxman rep and she said icicles after removing cap is because spraying too much water before treatment, but she said it might be ok.
I m still concern about the size- I use small size and remember that after tying up when I put my hand it felt colder , I hope I m not wasting time and money there- I will try to find a winter hat over the neoprene and see. Otherwise Paxman reps said it should be snug but not heavy tight super tight!
I took 1000mg Tylenol and first 15 min was the coldest but I was drinking hot tea and hot soup - it wasn’t extremely bad in tolerance.
I m going for 2 infusion on 29 !!!
Please post some pics after 3 and 4 treatments please!!! You almost done!!!
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I've been using the Dignicap "click" cap for 11 weeks now, and it seems to be working very well. I use the small size cap, and I have fairly thin hair naturally, which helps with scalp contact, I think. The click system further increases the contact with my scalp by tightening the web of cords that covers the outer cap to match the contours of my head more exactly. My head does not seem to mind this -- until they turn on the machine and there is nowhere for my head to hide from the cold! But after half an hour or so, I just get numb. As for results, I have lost some hair, but even at the top of my head where I part it, the loss is not terribly noticeable. I estimate that I haven't lost more than 15% of my hair so far, and since the losses are minimal now, I don't anticipate that it will go much higher, if at all, after I finish chemo next week.
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Hikinglady-wow, what beautiful hair! Congrats on the wedding!
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Kdrake - don't worry- your hair will actually start growing back in the middle of Taxol treatment. I had the same treatment as you and thinned a lot, but then in the middle of taxol (around #6-7) I noticed new grows! Keep capping and baby your hair - it will be over soon! Good luck!
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ykh, funny you should mention that! I noticed a little over a week ago some 1/2 long hairs sticking up in my part! Yup, regrowth has started and the shed continues! :-)
Things have gotten pretty thin up on top, so I've started wearing hats when I go out and will pick up the wig I purchased pre-chemo to wear to a wedding in a couple of weeks. Still feeling good about cold capping and so excited to see the growth starting already - I have Taxol #5 this Thursday!
Thanks all!
Kim
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Hi everyone! I am using Paxman and have lost about 50% of my hair. Last Thursday was my 2nd TC infusion and was the day I lost a lot of my hair. The pic is what I lost that day and what the top of my head looks like. I cried for 2 hours. I literlly sat on the floor in the bathroom with my 10 yo daughter and cried. Hasnt gotten any easier....and not sure Id do it again. Its giving me a ton of anxiety and wondering if Ill have any hair left when Im done....half way there.
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Did my pics post?
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hi BCS, I didn’t see pictures that posted. I am so sorry you are going through this. Losing my hair is a tremendous fear of mine as well. I am interested to hear how the rest of your experience goes. I’ve heard that some people lose 50% of their hair but usually not more than that. Could it be that maybe the cap does not fit correctly? (Sorry for my ignorance if that doesn’t make sense). I hope that things get better for you.0
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Hi BCSilverLining, doing Paxman here too. I lost the most after my 1st TC. The 2nd much less came out. I just had my 3rd last Tues. I’d say I lost 50% but it’s mostly top and sides. I think the cap fit better with less hair. It’s hard but hang in there!
I can’t see your pics but try to remember that it will grow back. I tell myself that all the time. Hope this helps. Take care
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Hi Ladies, Im in the smallest cap already 😰 Im trying to prepare myself to have no hair
I keep counting down the days when Im all done. And hope I have hair when that day comes! Ill try and keep you all posted on the rest of my experience, but so far Im not sure....0 -
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BS silver lining- doesn’t look bad, I hope it stays in the top. Second picture- lost hair - .... I hope you stop right there!!!
Does the cap fits tight? Mine cap is Small size and I wasn’t sure if it is a bit big ! I m losing some on a side and shed some hair just before my second TC and developed Matts / trying to use some conditioner
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I just did my 3 days after 2nd infusion hair wash, and also lost a lot of hair. Very depressing. I started shedding around day 15, and feel like I’m 30-40% gone on my top front already. I’m very cold tolerant, so don’t really mind wearing the caps. I tell my capping buddies to put them on at -35c.I wash my hair in COLD water, not sure what else I can do. My attitude this infusion was must less positive than the first one. Have to get my head back on straight.
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Hi! Yes, my cap fits tight. This happened the night of my 2nd infusion. I was already exhausted from the day and then this.
Appyfan- I was opposite. My 1st infusion I was a mess. 2nd time I took Ativan and it helped a ton! I was able to nap a bit during infusion. I woke up with my husband still sitting next to me rubbing my back. I couldnt do this without him....
We can allow oursleves to not be positive all the time. Its okay....just try to change your thinking. Im terrible with this. Most the time I cry, but some days are better than others.
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