Cold Caps Users Past and Present, to Save Hair
Comments
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portishk, I don't know anything about the Elastogel caps as I used Penguin. I have the impression that Elastogel does not recommend the same timing and does not work as well. If you go the Elastogel route, I would use the Penguin timing which is, I think, significantly longer with more cap changes (could be wrong about that).
I will tell you the Penguin caps worked like a charm for me. I still can't quite believe it. Now that it is starting to grow in a bit (I'm 7 weeks post final chemo -- acronym PFC -- first time I saw that I thought the F stood for something else) I can see where I lost it but you would NEVER know I went through chemo.
Geralyn was EXTREMELY helpful to me. I called on a Wednesday and had the caps by Saturday to start chemo the following Tuesday so don't get too worried about the timing. The initial cost was high, but my deposit was refunded within a couple of days of returning the caps. They are not shipped from the UK -- mine came straight from the factory in California.
I figured therapy would be far more expensive than the caps!
If you go with Penguin, do be sure to tell your dry ice vendor that you are using them for chemo -- my vendor sold me the ice at cost -- $25 vs. $125.
The women here are quite passionate about spreading the word about the caps and supporting their use so please post your questions and experience!
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Portishk: My blog is in my signature below. I used PCC's. I think some girls on here used Elastogels but I don't recall them having great success. You get what you pay for. I know that it is expensive, but if you spend money on something that doesn't work it doesn't matter that it costs less. I worked with Geralyn. She was so helpful and supportive. She continued to call me and check up on me post chemo to see how my hair was. If you have questions, feel free to PM me. Best of luck to your daughter.
Dexxy - you look fabulous! So nice to see your photo. I hope life is good for you now!
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I don't quite understand, because Advance Cold Cap Services (Elastogel caps) provides a complete service. They deliver 6 caps packed in a cooler of dry ice that lasts 48 hours either to your home or to your chemo location, and they recommend that the patient starts wearing the cap an hour before chemo, and 4-6 hours after, and the caps can be cycled multiple times because by the time you get to the 6th cap, the 1st one is frozen again. Does Penguin suggest a longer time frame? Just trying to compare and make the best choice. If I understand correctly, with Penguin you have to order your own dry ice? Sorry... new to this and just trying to understand the difference processes. Thanks for the info.
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One of our members posted this:
I used the ElastoGels and kept my hair. I understand (not positive) that the Advanced are used caps which is not good. My EGs were brand spanking new and I believe I did as well as the PCC gals and much easier to use and much less money. Worked for me but no guarantees. I never needed a scarf or a wig. Good luck in whatever decision you make on the caps. Remember we are all here for you too! Best wishes!Arlene
link: http://community.breastcancer.org/forum/6/topic/735873?page=172#post_2781743
There are a couple of other comments discouraging the use of used Elastogels -- just enter "Elastogel" in the search box on the upper right.
I was unaware Elastogel had a service like that -- nice! You can buy Elastogels from Amazon and my impression is some ladies tried to get by with too few caps (like three) and maybe couldn't get them cold enough in the interim. I had 8 Penguin caps, so if you go the Elastogel route just make sure they give you enough!
Yes, with Penguin you must get your own dry ice. You will also need an Infrared thermometer -- i would think you would need that with either brand as straight off dry ice the caps can be below negative 50 degrees -- don't want to put that on your head for sure!!!
If you go the Elastogel route, I would be sure to follow the specific Penguin protocol -- we can help you with that and the other ins and outs.
It is quite a fiddle getting the caps changed and to the right temperature, etc., but SO worth it.
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@potishk- I used the PCCs and highly recommend. I am over a year PFC and am thrilled with the results...please read past posts..I know of one person that did have success with Elastogels...she used the PCC Protocol and bought and packed her own ice. If you read back on this thread, there was one person that used Advanced with Elastogels in Atlanta actually and had bad experience. The theory is the same...But results have been different...believe the caps fit different and use different material.... What tx is your daughter going to be on....best success seems to be with TC and TCH....if A or E is in the protocol...harder on the hair...good luck!...best to your daughter... this thread is awesome support for those using caps.....
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portihsk, "Does Penguin suggest a longer time frame?"No, Penguin is normally 50 minutes prior to chemo, wearing first 3 caps for 20 min. each, then all through chemo, and 4 hours post chemo, caps changed every 30 min. Elastogel must have changed their timing, because I don't think they instucted you to wear them nearly as long as they are telling you now. Penguin does not supply the dry ice, but if you contact Rapunzel they will donate a freezer, allowing you to keep the caps at the chemo center which was so very convenient. I agree with TheLadyGrey, if you decide on Elastogels, I would follow the Penguin protocol. And ask all the questions you want! We have all been there and we are so grateful for the help of those who were prior users.
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Lady Gray: THANK YOU for explaining the PFC acronym. I've been racking my brain trying to figure that one out.
Portishk: I am using Penguin but I considered Elastogel. The thing is that since there are so many more positive reviews on Penguin, that is the way I went. Seeing how I only get ONE chance to do this, I sided with the one with the most positive reviews. Not to say Elastogel does not work. They definitely offer a good service as dry ice and packing can be a pain.
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I thought I was alone in having unsympathetic chemo nurses. During my very last chemo - after going through cap changes for eight hours - my nurse - looked right at me - with a full head of hair and asked, "was it worth it". You bet your @ss it was worth it. I have a 5 year old daughter and a 7 year old son - and being able to prevent them from seeing "sick" mommy was all the incentive that I needed. Further, I have a job that requires me to travel - and not having people treat me like I have a disease or like I'm sick was very important to my mental well-being and my ability to do my job. It's easy enough to say it's just hair - unless you're the one facing the situation. I heard similar comments about the BMX I had to go through - they're just breasts. It's unbelievable the comments people will make when they learn you have a disease. At least we are all here for each other - paying it forward. Thank you to all those who came before and were willing to share -
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@ TheLadyGrey - interesting to hear. My daughter is having her treatment at Peachtree Hematology-Oncology in Atlanta, and they said that cold-caps were pretty much standard treatment there... that the majority of women there use them (if they can afford it).
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luckyjnjmom, I can't believe the chemo nurse asked you that, bet you wanted to slap her
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KCD: The taxanes (taxol, taxotere) are *guaranteed* to cause you to lose your hair, usually 14-21 days from the first infusion. In about 5% of cases, permanently (the pharmaceutical company does a fabulous job of hiding that info). If your doctor is telling you otherwise, you need a new doctor.
Portishk: RUN, RUN, RUN from the Advance cap. What Advance sells are *used* Elasto-Gel caps. The Advance Cap crew were actually on the lamb for having stolen funds from Hurricane Katrina victims (they were booted off breastcancer.org about a year ago). Advance Caps are different from Elasto-Gels (which are sold new). EGs don't have the success rate that PCCs have - they don't get cold enough or stay cold long enough, but there are many women who have been happy with them. I do not recommend them however. Most women who have had success with them have changed them more frequently than recommended by the EG company, and they've also adapted the hair care protocol fine-tuned by Penguin.
Just emailed my PCC writeup to you, hopefully it will give you some info.
KCD again: I agree, the Penguin video doesn't have enough info about the straps -- they turn out to be very important because everyone's head is different form and shape, and the bands really help strap the cap to your custom shape. The other thing that is important is when each cap first goes on, knead it for a couple of minutes -- to get the gel evenly distributed around your head. About 10 minutes in, knead it again. I ended up kneading it constantly, just out of nervousness (I was one of the early users and didn't even know whether or not these suckers worked. THEY DO!) I believe somebody made an instructional YouTube video? Anybody remember the details? I should have taken notes!
Dexxy: I think you look awesome! You absolutely do not look like someone who has gone through chemo! Congratulations!! Fingers crossed that you have the first of a lifetime of clear mammograms. I find these follow-up exams nerve-wracking when it's time. I'm getting used to it now -- 2 years cancer free and counting!
Cheers,
Susan
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The negative attitudes of some nurses and doctors and other health professionals against cold caps is quite astounding to me. I recently went to a breast care conference and started speaking with a person who was staffing an information table (advocacy organization for alternative treatments.) I started telling her about the cold caps. An oncologist who was standing next to me listening said they didn't work. I showed her my long hair and they could clearly see my hair and also the new stubble growth where the cap had not touched. I am 6 months PFC and used the Penguin cold caps. . The onc said they had done studies 10 years ago showing it did not work. I told her the caps now are much more effective and she said all of this was anecdotal. I then told her about the 10 studies from Europe I researched and she said they needed studies from USA, not Europe. She also said using the caps was "labor intensive." If women want to get their own team of helpers then they should have the right to do this and if they want to put in the effort they should be allowed to do it. I just do not get the resistance of some of our health professionals even when they see the results in front of them. "Iam glad it worked for you." If women want to put in the effort, endure the cold, take the very very slight risk of scalp mets, then they should have that as an option. Luckily there are others who will tell people about the caps and that this is an option. But it was sad for me to see so many women with bald heads at this conference. Just venting but I was very frustrated by this response. I am so grateful I learned about the caps in time, kept my hair. I wish other women could be told and have it as an option.
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I agree with what is being said about the negative attitudes!
Serenity Wisdom and Luckyjnjmom I see we are all Her2+. Wondering if you were given Herceptin first or last? I was told it would be last but then they told me it would be first after I began my caps. So my premed time 55 minutes, 90 minute herceptin time (long because it was1st herceptin infusion) and 60 minute wait period after herceptin did not count! Just wondering what your experience was with herceptin as far as timing?
I will be taking LadyGrey's advice and some others too I believe mentioned...writing the infusion manager. I did request the nurse call my onc's nurse because the onc and nurse said herceptin would follow chemo but apparently they said they should proceed as they normally do. I did call my dr's office and spoke to the nurse and explained what this meant for me as far as having to continue with my protocol 4 hours post treatment. I said if there is not a medical reason why the herceptin should come first, why should it matter. Apparently this is the order from the pharmacy? But no one has said if it is medically necessary...and apparently, it is not if other people are getting it last?
Actually I will have to rethink who to send my letter to, I am not receiving my treatment in fhe infusion room. Which does actually work out better for me, it gives me a little more room and I do like the privacy as my center's infusion room is one big open room (however there were some semi-private spots with more room and some curtains). However, I don't think the decision to give my treatment in another department had anything to do with my convenience but was really just an effort to "hide" me. One plus, was that after my blood work and doc appt. when I went to the infusion room they said an hour wait. We wheeled our coolers into the waiting room and I was quickly escorted out (out as in the same direction we entered-not through the door everyone else was going through when they were called). Like I said it's better for me personally, but I think this action says a lot!!!
Just hoping for the success of all of you posting on this site. I have to look over my instructions, because I just did two 20 minute caps and my infusion started 10 minutes into third cap which was my first 30 minute cap.
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brax, I had suggested speaking to your office manager, but maybe you should speak with your onc. instead. Remember, they are working for YOU. You can go anywhere you want to get your treatment. There is no reason why they can't give you Herceptin last. The center should make it as easy as possible for you.
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brax: Also ask for the Patient Advocate at the hospital. (Usually the minute you even ask about the patient advocate, everybody runs to help you -- it means you know your patient rights and are aware of the chain of command to get things going your way.) There is no reason the herceptin needs to come first, and it will shorten your day to have it come last.
Btw, you did your caps correctly at the start:
The first cap goes on for 20 minutes (during premeds). The second cap goes on for 20 minutes. Then the third cap goes on, and exactly ten minutes in, the chemo infusion starts. The third cap and all subsequent caps stay on for 30 minutes each.
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I explained everything by phone earlier this week they said they would get back to me. I haven't heard anything,but I have two weeks to go. I will call the nurse again next week and if I don't get anywhere I will ask for the patient advocate.
Thanks!
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@Laura5 - after reading all of the public and private messages regarding which caps to use, my daughter has decided to go with Penguin, and I've already been in touch with Geralyn. My daughter is having her chemo at Peachtree Hematolagoy and Oncology in Atlanta, and they have a couple of freezers there. However; the nurses at Peachtree told her that she should start wearing the caps an hour before she gets there, so I'm thinking we made need to purchase a portable cooler, dry ice and a thermomoter for before and after. Any advice would be appreciated. Thanks! ~KP
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Portishk, I'm relieved to hear your daughter decided to go with Penguin because I KNOW they work and this isn't a situation where you get a "do over" if it doesn't work.
One advantage of using coolers to freeze the caps is that you can leave after chemo is completed. If you are relying on the center's coolers, you have to stay for four full hours after chemo is over -- I was ready to get out of there!
Please listen to what Geralyn and Frank tell you and not the nurse - it sounds like she was well intentioned but there is a very specific protocol for changing the caps, the goal being to have the scalp at its absolute coldest when the chemo hits the first time.0 -
Brax, my herceptin is given after my taxol.
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portishk, You will need the thermometer either way. Each cap needs to be checked right before you use it, regardless of how it was frozen. Also, as TheLadyGrey stated, follow Frank's instructions, as it is very important to get the timing down on those first 3 caps, and be ready to go on the chemo 10 minutes after cap 3. They will be giving her premeds during most of this 50 minutes.
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Brax,
They gave me Herceptin first on my frist chemo infusion - and it really lengthened the day with the cold caps. After that, I requested that they do the Herc last - and they did - didn't give me any argument at all. I have been astounded by the lack of privacy that seems to be normal at these infusion centers. While awaiting my 5th Herceptin treatment in the waiting room - an Onc was telling a woman literally two chairs away from me that her brain scans were showing some areas of mets, and discussing other distrubing findings. I was shocked that this woman's private medical matters were discussed openly in plain earshot of several people in the waiting room. I wanted to speak to the Onc or report this to someone - but I wasn't sure how to proceed - and I did nothing. I still feel badly about my lack of action. When did we as cancer patients stop having the privacy rights of others seeking medical treatment?
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Laura5 - yes - I did want to slap her! Problem is that I still see her since I have several more Herceptin infusions. I went through the 4 chemo rounds with IV - and still don't see a need to have a port for an infusion that I receive 1 x every 3 weeks - but she is one nurse that I won't let near me to start the IV - she jammed the needle into a nerve bundle in my wrist on my last chemo round - I still have numbness in the wrist. I know that starting an IV is a skill that requires a lot of practice - but I have never had anyone jam a needle into a nerve bundle, and I've had several IVs. So in addition to being completely insensitive (i.e. the "was it worth it" comment) as far as I'm concerned, she's also not competent to start an IV. Unfortunately, I think a lot of the chemo nurses lose the touch because they become so accustomed to dealing with ports.
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I used the PCC - and kept most of my hair - I have shed a great deal since my final chemo Taxotere/Cytoxan - on 1/11. There was far more shedding PFC than there was during chemo. Just finished week 8 PFC and the shedding is starting to lighten - hope that's a signal that it's going to stop soon. I was wondering if anyone has ever used Rogaine to accelerate regrowth? Anyone have experience with this?
thanks, Lucky
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Lucky, That onc's lack of respect of a patient's privacy not to mention total insensitivity is horrible. I think I would say something to the onc.
I too received my treatments - TCHx6 - and now H every 3 weeks by IV. A few times I ended up with quite a bruise. I had not thought about the nurses losing their touch, but I am sure that would be the case, as almost everyone has a port....or maybe your incompetent nurse was "getting you back" for keeping your hair, LOL! I am 3 months PFC and quit shedding about a month ago, so I'd say you're on the downhill stretch.
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Laura,
It has been on my mind a great deal - which tells me I need to take action or I'll keep wishing I had. I have never spoken to the patient advocate - but I'm going to.
Thanks for your feedback on the shedding. For a while there I really thought that I might go bald - but the longer I keep my hair - the less fearful I am about that. The shedding is annoying - but I know that eventually it will stop.
Take care, Lucky
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luckyjnjmom: You are right to be horrified by that doctor's discussion of private medical information in front of others. It is a violation of that patient's HIPAA privacy rights, and the physician is subject to very steep federal and state fines for disclosing that patient's medical information in front of others. You should let the nurse manager of the oncology unit know of this. If they do not correct this, you can contact the Privacy Officer and/or the Patient Advocate at the hospital. You can also contact The Joint Commission -- the organization which accredits (or not) all health care organizations. (I work at a hospital, is how I know all this.) Please speak up about this, the physician needs to change their ways and did that patient an unbelievable disservice by having a private medical discussion in public.
p.s. don't worry, you aren't going to go bald! For myself, I mentally thought that 3 weeks PFC the shedding would stop. I didn't realize it would keep going for a couple of months (for me, almost 5 months). Back then, I didn't know to take iron supplements, but even as I shed, new hair was regrowing. You don't need Rogaine: the best thing to stimulate new hair growth is *cold*. You can use a cold cap out of the freezer once for an hour every few days, if you haven't returned them all.
Btw, there is an article in Oprah's magazine on PCCs. So glad that word is finally trickling out!
Susan
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Can anyone advise how to take iron to help reduce shedding? I'm 6 weeks PFC and shedding heavily. It's scary. Granted I had very thick hair to begin with, but at this rate I'm worried. Thanks!
Lisa
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LeesaAnn - I shed worst after completing chemo than how I shed during chemo. I finally started taking iron and magnesium. Chemo left me anemic. I read that low levels can affect hair loss. Also if you read about hair, when hair falls out - new hair is coming in. My shedding did finally stop but it took a few months for that to happen. That is NOT the norm (to shed that long PFC) so don't freak out. I shed for 4 months pretty bad but STILL HAVE A FULL HEAD OF HAIR! Don't freak out. I felt the same way and started to lose hope. You can see my photos on my blog.
Hang in there!
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Susan,
You and the others are right. What I witnessed was a violation and I am going to call the patient advocate tomorrow morning to report it. If it had been me - I would have told the Dr. that I was not comfortable discussing this in the waiting room and that I would like the privacy due me. Not everyone is comfortable challenging a dr about anything - this poor woman may have been just as uncomfortable and appalled as I was - but not comfortable challenging the situation. Reporting it to the patient advocate may raise awareness amongst all of the staff - including the onc in question - and prevent this from happening again. Thanks for giving me the push I needed to do it.
Lucky
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Lucky: thank you so much for speaking up! I feel so sorry for that patient; it could have been any patient if that were allowed to continue. You are doing the right thing! I work in a hospital and we never have a conversation of that type in front of anyone, ever. I'm sure that physician is a good one, clinically, but you will help them to be better by reminding the whole organization of the need to be sensitive in these discussions.
News: I am participating in a LIVESTRONG panel tomorrow, about online support groups. Of course, I am talking about this group and the huge impact it had on me when I was using PCCs 2 years ago, and how the group continues to be tremendously important to those using caps (esp. those who are the first at their centers). The panel is being held by SXSW, the large music/film/interactive conference in Austin TX. A friend of mine founded PlanetCancer for teens and works at LIVESTRONG and is running the panel. So excited to be able to talk about caps in front of a large forum like this!
Susan
Cheers,
Susan
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