Cold Caps Users Past and Present, to Save Hair
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Ali68, From all I have read, the cold caps will make your hair grow in much faster, even where you have lost some.
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Ali68: Cold stimulates hair growth (whether hair loss is due to chemo or not)(I always joke that once bald oncologists realize this, they will be recommending caps to everyone!) So the hair you shed and the hair you keep, both, will grow much faster due to the cold cap stimulation.
When I was using the caps 2 years ago (I can't believe it's been that long ago already!), there was a woman in NY who learned of PCCs after she'd already had her first chemo, too late to prevent hair loss. Her hair fell out after the first chemo, but she began using the caps anyway for her 2nd and subsequent treatments. She finished chemo with 2" of hair all over her head! I think she used gauze or a stocking on her bald scalp to add a layer of protection. Frank told me the story, I forget all of the details.
This Friday marks my 2-year cancer-free anniversary. And I think with my next hair trim, I'll be getting rid of much of the "chemo curl", as my hair continues to grow so quickly that my normal wavy hair is coming in (about 3" just since December) and the curl is all towards the ends. If I don't get a trim soon I'm gonna have one of those 1970s feathered flip hairstyles! :-)
Cheers all,
Susan
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Sebm9 thanks for that I was a bit upset at having to cut my hair because it had died. I am going to continue as my bob is in good way now.
Great news about you and thanks for all the help and advice you give everyone it really does help us.0 -
Ali - the good news is hair can continue to grow through chemo. By the time I got done with chemo my roots were almost 2 inches long. Hang in there...
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Hi everyone. I was reading the Emend side effects that came from the pharmacy and it says hair loss. I was thinking the caps would protect from that hair loss as well but figured I should throw it out there just in case some of you used a different drug. I was also reading in a different forum where some people had refused the steroids and was wondering if anyone using the caps refused them.
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brax, I have had 3 TC infusions of 4, and have had very little hair loss with the caps. I am getting both steroids and Emend in my IV, and take steroids after treatment for 2 days (to combat nausea and water retention). I was switched to Emend because of severe nausea during/after my first infusion.
My attitude has been that my comfort comes before my hair, but you must make your own decision.Good luck with your treatments!
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Hi brax: I did a lot of research on Emend before I had my first treatment, because of the concern of any possible additional hair loss. I did not want to go through all this and then be sabotaged by Emend! I needn't have worried.
When SEs of a trial are listed, ALL of the SEs have to be listed. So, when Emend was studied with chemo patients, of course hair loss occurred.
However, I found a study of surgical patients using Emend, and in that study no hair loss was reported. So, I think the hair loss in the chemo studies was due to the chemo, not to the Emend.
Emend is a very powerful, very effective anti-nausea drug and I am extremely glad I used it. I suffered no hair loss from taking it. I understand that it is fairly expensive (my insurance covered it all) and so many women don't have the option of using it for financial reasons, which is horrible.
You should study for yourself and make the decision that's right for you, of course, but many women on this list have used Emend and I have not heard anyone report hair loss from it.
Once PCCs are FDA approved, it'd be great to see a study of PCCs with and without Emend, just to confirm.
Steroids: my doctor did not prescribe them. The topic never even came up. I had absolutely no problems. In fact, I had almost no SEs from chemo whatsoever (TCx4@3, almost 2 years ago).
Btw, if you (or anybody else just starting) would like, please private message me your email address and I'll send you my very extensive writeup about my experience with PCCs. Lots of how-to info, as well as lots of tips for getting through it, hair care, SEs, etc.
Cheers,
Susan
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How do I send a private message, please? started chemo Monday, using PCC.
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Ali68, like many of the other posters, I wear my cold cap one hour before tx, during tx, and four hours afterwards. We put moleskin on my forehead, the back of my neck and my ears to protect them. We also took a gauze bandage and used it to further secure the cold cap. We also religiously massaged the cold cap as directed during the treatment. My cold caps weren't cold enough, however, so I don't know whether they worked during the first treatment. We will have them colder for chemo 2 next Thursday, the 23rd (TC). So far I haven't had any hair loss anywhere on my body, although my leg hair is barely growing. Since no other hair has yet departed, we don't yet know about the cold caps' effectiveness for me. I should know in another ten days or so and am keeping my fingers crossed until then.
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carolsk54, click on the person's username that you want to send a message to, and then on that page, in the right corner is a link to send a private message. Susan's write up is indeed very helpful.
I am in the midst of using cold caps, and at around page 163 of this thread, I asked people to post their top tips for using the caps. People were very generous in providing that, and I would suggest checking out those pages. I am using dry ice slabs, and they get the caps very cold.Here are my top tips for those starting:
1. Tell your dry ice distributor that you are using the ice for chemo. They may give you a considerable discount. Also, slabs keep the caps colder than pellets, and your distribuor should be able to cut them as the PCC instructions tell you to.
2. Take the caps out 10 minutes before a change to test, in case you have to knead them to get them warmer. The thermometer should be close to the cap when taking a reading.
3. I made a template of my hairline and ears with waxed paper, and then used that to cut moleskin sheets into the exact shapes that I needed. You can get multipacks of moleskin sheets from Amazon.
4. Ask for Ativan in your IV with your premeds. It will make the first 5 minutes of that first cap much more tolerable. After that, it's a breeze.
5. Bring an electric blanket. It makes a HUGE difference.
6. Keep your hand firmly on top of your head on the cap while your helper is putting the cap on you. It makes it easier for them, and much faster.
7.When your drip is done, wait to leave the chemo center until your next cap change so that you're not pressured to change the cap as soon as you get in your car.
8. Take another ativan by mouth when you get home if you can - 4 hours is a LONG time.
Feel free to PM me if you want. I have my last infusion next week, and still have all of my hair.
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Mom2JJ, Hopefully your caps weren't too far off the right temp. TC does well with the caps.
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Hi,
My first chemo is next week. I have questions for those who had weekly infusions.
How often and when did you wash your hair? If I wait three days before and after that will only be once weekly. Did you rinse on days in between washing?
I will be on weekly taxol- if you had that how long afterwards did you keep the caps on?
Some of the information on the video is different from the emailed instructions- which would you follow?
And one more, who is Frank that people are referring to?
Thank you!
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Can anyone give me links to actual pictures of people wearing cold caps- thanks!
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There's several on youtube.
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KCD: Frank Fonda is the scientist in England who invented the Penguin Cold Caps. A kind man who called me From London twice to answer my questions. I think he truly cares about us.
The website for PCC is www.msc-worldwide.com. There is a "training video" where you watch them put on the caps.
Also google "Good Morning America Penguin Cold Caps" and watch the Good Morning Amer TV segment. That's how I learned about PCC and became the first to use the caps at our major medical center.0 -
Hi,
I do have the caps already, and have watched training video but the video instructions differ somewhat from the written instructions. And the training video doesn't actually show both black straps or how to use the gold strap if you have thick hair. I am worried about wearing the caps correctly.
I though the usage times for the caps differed based on your chemo regime- how long after did they tell you to wear them? I will be on taxol for 12wks
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Hi everyone, I've been told wearing a wig while having cooling cap is not a good idea. My only hat that suites me is wool. Help. The thinning is very bad on top.
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KCD, There is a photo of me wearing my cap on mdg's blog if you want to see it. http://breastcancerwontdefineme.blogspot.com
I wore my caps for 50 min. prior, during, and 4 hours after chemo. I think that is pretty standard. I wore the 2 black bands, the gold band, and a gel strap (I ordered gel straps because I have a big head) for extra coverage above my ears where the cap did not quite cover. I found a video of someone wearing all the above, and I will post it if I can remember where I saw it.
We found that it didn't matter how you put all of the bands on, just make sure the cap is snug fitting all over your head. My helpers tried different ways until they found a way we felt was the best. Believe me, they will get plenty of practice!
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Ali68, I mentioned in an older post a product called Joan Rivers Fill-In Powder. It comes in a compact with a brush and you brush it on the areas where your scalp shows. It stays on until you wash your hair. There are quite a few colors to choose from to match your hair. If you google it, you can find their website. It looks natural and quick and easy to apply.
I have not lost hair since the week long shedding starting 17 days after my first chemo but am at the same time period from my second treatment so hoping things hang on. My husband did not always get the cap on exactly the same way with each change and kept snagging my hair in the velcro. He tried his best though and not complaining.
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Marie3, I had a helper in the front and one in the back. The front helper fastened the top velcros, then held my shoulder length hair in place while the back helper fastened the back velcro. It also helped when we decided to fasten the front velcro before it was placed on my head. Made for a very quick cap change.
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KCD, There are pictures etc. on the Rapunzel website. www.rapunzelproject.org Look under "Cold Cap Therapy Making Headlines".0
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Susan,
Someone on the blog mentioned that they had purchased a cold cap that they continued to use post-chemo to promote growth - do you know what the name was or where I can get it? I'm 6 weeks pfc, shedding like crazy - and need to accelerate the growth to fill in a few bald spots.
thanks,
Lucky
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Laura what a great story on mdg's blog. You described what we all go through so well. Your family is beautiful. Thanks for the tips too. I will practice having my husband put one on with the front straps already fastened. I am only allowed one person to be there with me. He is pretty fast getting them off and on. I think I will try out using pantyhose or a scarf to get the top to fit tighter as well.
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KCD:
The first cap goes on for 20 minutes. The second cap goes on for 20 minutes. And exactly 10 minutes into the third cap, the chemo infusion begins. Therefore, you have to count backwards a little. Ask your nurse how long your pre-meds will last ( i.e. the medicines they give you before they give you the components of the chemo cocktail, for me taxotere and cytoxan. My premeds included IV pepcid, benadryl, Emend, and I forget what else). My premeds lasted about an hour and five minutes. And the taxotere began just after that. So, we calculated 50 minutes: about 15-20 minutes into my premeds we'd put on the first cap. It stayed on for 20 minutes, then switch to second cap for 20 minutes, then third cap. Exactly ten minutes into that, the nurse pushes the button for the chemo drugs. If your third cap hasn't reached 10 minutes, your nurse can absolutely wait before starting the chemo IV. We had this happen twice; one time the nurse waited 10 minutes before starting, it worked out just fine. Another time the nurse had to wait 3-4 minutes, no problem.
The reason for this timing is that these first three-cap sequence will make your scalp completely frozen and follicles are asleep.
The third cap and all subsequent caps stay on your head for 30 minutes.
You wear caps until 4 hours after your infusion has ended.
For your first chemo, be aware that the chemo session will last much longer than all your other sessions, because all drugs (including each of the premeds, even things like IV pepcid) will be given on a slow drip for the first few minutes, to make sure you don't have an allergic reaction to anything. I used 17 caps my first session, though my prescription was for 14 and that's what I used for the other sessions.
You are able to "recycle" the first caps of your day and re-use them at the end, refrozen. They'll have plenty of time to cool back down, but make sure you number or otherwise mark them so you can keep track.
Feel free to email me if any questions!
If you want to see my pictures of my before, during, after, and way after, click http://www.facebook.com/media/set/?set=a.102992449790904.6332.100002404474878&type=3&l=d97c5ccbfe
They're from my facebook PCC album but you do not need to be on FB to see them. If you click on the individual pictures you can see my comments (I think). There are also pictures of my post-chemo growth, including my wacky wings, my ringlets at the nape of my neck (where I lost hair), and my curly post-chemo hair. I've also got some pictures of my up-do from the Nobel Prize ceremony this year. I was so glad to have hair to wear in an up-do for this incredible occasion!
Today was my official 2-years cancer free mark. And I got 3 compliments on how silky and pretty my hair is -- my super-curl hair is now transforming back to my former very-wavy hair. I've enjoyed the curls but I'm happy to see my "real" hair come back, and the texture has really recovered fully now. I couldn't think of a nicer way to celebrate this anniversary, than getting unsolicited compliments on my hair!
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Lucky: You can probably contact PCCs about purcashing a cap outright, or else just continue to rent one for a longer period and return the others. I have a demo cap which I use for instructing new users in the area (it actually has a small rip in it, but works fine for demos).
I was an early user of PCCs so we did not know then that we could use them afterwards for PCC shedding. Another new piece of advice is to begin taking iron supplements after your final chemo has occured; this helps restore your stomach lining, which helps you stop shedding.
Straps: yes, the penguin video does not give sufficient instruction on use of the straps, imo. We figured this out by trial and error. Since everyone's head is different, the straps are really important in customizing the fit. For myself, I doubled up on the hairline perimeter, especially the front (since I figured it would be most noticeable around my face). I had a slightly older-style cap, since then reconfigured a bit, and it kind of popped out a bit at the sides of my crown, so one strap went to secure the cap there. I was sure I'd lose hair there, but not a bit. The hair I lost was at the nape, above the ears , and slight shedding overall. The back of my head felt very thin but it wasn't noticeable -- as you can see by the photo links in my other post, I had and have a full head of hair before, during, and after.
Susan
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Dear Susan,
Thank you for all the wonderful useful information. Today I went into the infusion unit for my herceptin treatment and the infusion nurse commented on my long hair and how great it looks. It has been 6 months PFC for me and I am very grateful to have my hair. It is good to know that your hair is returning to its normal wavy type. My new chemo hair where the cap did not not touch seems to be thin and like peach fuzz and very curly. It does not match my rather thick straighter hair. The nurse told me that some people have their new chemo hair (very fine and curly) for life and others have their hair change back to how it used to be over time. Que sera sera.
How much Omega 3 fish oil do you suggest taking/day.? My hair is still dry and nails break all the time
By the way, for those of you who are having a difficult time with veins and getting infusions, you might want to ask your oncologist about getting a port. With veins that are small or difficult to start infusion or damaged easily, a port can be a whole lot easier. Have a good weekend everyone
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Thank you Marie3, I just love them to pieces
Will your facility make an exception to the one person rule? It is so much easier with at least 2 helpers.
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Susan, that's great that you demo them for local women. It would have been so helpful to have a live demo! Are you compensated by PCC?
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My husband and I have gone to the homes of 4 ladies in our area and have done a PCC demonstration. This would have been SUCH a big help when I was using them and I am glad to do it when anyone calls our house. My DH seems to take pride in the fact of how quickly he can change a Cold Cap!
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ckk: No, I am not compensated by PCC for doing my coaching or demos. I am strictly a volunteer and passionate about helping other women who are going through this but who are lucky enough to have discovered PCCs. I've been on Frank's contact list, which he gives to prospective new users so they can ask what it's like, what's involved, etc. My DH does a great job coaching the helpers.
serenitywisdom: Where I lost hair altogether (i.e. nape of neck) it came in fine and super-curly, like corkscrew curls, and soft. But my existing hair, as it continued to grow, also came in curly. Since I kept so much hair, I had an odd period where I had wavy long hair but super-curly at the top. I kept constantly trimming, then my whole head was full of curls. Now, my regular wavy hair is what's growing in, so I have wavy hair at the top with super-curls at the bottom. All my hair has come back in my regular color. Now my natural highlights are returning too.
For fish oil: I take 1000 mg daily. I use Nature's Bounty (from CVS) which claims to be purified of PCBs and mercury which can be found in fish. It is also soy-free (very hard to find soy-free vitamins and supplements, has anybody noticed?) My other morning vitamins include calcium (to prevent bone loss from my AI), glucosamine (for my AI), 1000 mg each of vitamin E and C which combined with the 2000 mg daily of vitamin D (which I take to boost my uber-low vitamin D level, a 7 when I was diagnosed!) help prevent inflammation in my left rib as a result of the rads.
(Aside: When I developed the pain in my rib, I was sure I had bone cancer. All of my doctors were stumped and suggested tylenol, but as soon as I told my rad onc she said "That's my fault. I was trying to avoid any scatter to your rib but you are so small, looks like a little of the rib got hit. It's inflammation. Take a megadose of vitamins c,d,e and the discomfort should go away. If you ever forget a dose, you'll know right away because the pain will come right back.)
I also take a TeGreen capsule, part of a Chinese herbal regimen I'm on via my acupuncturist. It's the equivalent of 6 cups of green tea but without the caffeine.
For veins: I did not use a port, and my nurses suggested that the day before my infusion I "plump up" my veins by having lots of broth and salty things (saltines or pretzels). It worked for me.
Marie3: I would request an additional helper be allowed. The sad truth is, us cancer patients are big business for the health care industry and they fight for our business. Every hospital has a Patient Advocate. If the nurse manager won't give you permission for the extra helper, ask to speak to the Patient Advocate. That will signal that you know your Patient Rights and they will take your request *very* seriously. They are required to make reasonable personal accommodations for your care. This definitely counts. Good luck!
Susan
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