Cold Caps Users Past and Present, to Save Hair
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Me, too. Used to wash every other day. Now, a year out, only need to wash every 6 days! But looked horrible at first when doing cold caps before hair adjusted. So I'd twist or fold a scarf and make a wide headband to wear. That helped cover the dirty hair.
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@Hortense-Are you using dry ice or a freezer? Penguin caps? Even women who don't use the cold caps experience that tingling, tight sensation of their head hurting. Some who use the caps also have flaking. It's usually because they need to shampoo their hair more frequently. The flakes can be the result of detoxification. I think you might be experiencing that and possibly a bit too cold of caps. As was mentioned be sure to wipe down the cap before it goes on your head. Unfolded a 1 inch piece of gauze-refold to @1/4" X 4", in between the moleskin and hairline. Do the same for your part. It is not necessary to change your part at every cap change-each treatment yes. PM if you have any questions.
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lbrewer -did Geralyn tell you to only wash once a week? When I asked her if that was best, she said no - they want you to wash your hair every 3 days. It may be different depending on your protocol, I don't know.0
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Help!! My oncologist is not receptive to my plan to use of the Penguine cold cap. Are there any of you out there that can recommend an oncologist in the Denver/Boulder area that is willing to work with patients who want to use scalp hypothermia???
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TrinityMom, I am sure there are plenty of oncs in your area who have done their homework and are not afraid of cold caps. If you decide to stay where you are, just tell him or her that you are using them anyway. I doubt they will turn down the thousands of dollars they make from chemo.0
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TrinityMom,
I'm not from Colorado, and I have NO idea about oncologists out there, BUT, I remember reading about an oncologist in Denver who did some of the research on permanent hair loss that can happen after Taxotere. I read about it on the taxotears site. Here is a link to what I read, and a link to that doc. Again, I don't know him personally or if he is ok with cold caps...but you could ask.
Q&A with oncologist Dr. Sedlacek Denver, Colorado
http://rockymountaincancercenters.com/rmcc-difference/our-doctors/sedlacek
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Thanks for posting that article dancetrancer. It really bothers me that Oncologists don't tell their patients about this. How observant are they if they haven't made that connection??? Could it be that after their treatment the patient moves on and doesn't continue with the same doctor? Perhaps they think it a worthwhile cost, to lose ones hair if saving their life. But, you now know, as do most who have used the caps, it is an unnecessary cost.
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I also no longer have to wash every day, only 2x per week. I think that most people (even those that don't have chemo or do caps) can readjust their hair wash schedule by tapering off shampooing. Shampoos really strip your hair and it takes time to wean off of them.
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I know makingway. Where's the informed consent, huh? I mean I see their point about cancer being the priority...but...wow - we still have a right to know ALL of the consequences, AND the options to prevent them.
For those of you PFC, who now only have to wash your hair a couple times a week b/c it is drier and doesn't get nasty...do you use products on your hair? I normally (when not in chemo) have to use a TON of hairspray to hold my hairstyle in place. It is very fine and thin and just has no body or style unless it is blown dry or curlers are used to lift it up from the root, then hairsprayed once lifted (or it goes way flat as the day goes on). By the next day, my hair is definitely flat and dirty from the hairspray.
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I gotta tell you, I felt sick reading that Q&A with the Denver Oncologist. I know that we're "supposed" to make cancer survival our priority, but it's unconscionable that there's a way to keep hair given possible permanent hair loss, and MOs aren't telling their patients about it.
My oncologist was pretty much convinced that the caps would not work, but she was open to me trying them. After she saw my success, she now tells every patient in her practice about them. How in the heck do we get the word out better???
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ckk~
It is really tough. My oncologist was very pleased with the process, spoke to Frank etc. but when I recently asked her about others using the PCC's she said "she had not had many asking about them."
Well, of course, how would they even know to ask about them?
I am pleased that I just go another email from someone who heard that I used them and what did I think about them?
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I know cck. I appreciated his honesty about what happens...but he was pretty blunt in that interview! I am thankful he did that study on permanent hair loss. Seems like it's something none of the docs want to face/talk about. I know it's rare, very rare to lose your hair permanently, but it happens to a few people. I certainly didn't want it to be me. I was already in the 1% statistic that has a lung collapse due to port placement...my odds of getting the weird stuff seem unusually high, LOL. If I had a chance to prevent it, you bet I would. I am so thankful I heard about it before starting chemo. And I'm saddened that many women cannot afford it...so that may be another reason why docs don't bring it up. The average person is not going to be able to afford to do this.
I think we get the word out by publicity. That requires US to put ourselves and our diagnoses out there. Not everyone is comfortable doing that!
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I'm not taking this sitting down!! I'm going in to my MO tomorrow armed with a dossier of abstracts from the recent studies regarding PCC effectiveness and scalp mets. I'm telling him that I'm choosing to keep my hair and then I will ask him if he is willing to work with me. Thanks for the empowerement!!!
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Go Trinity! Keep us posted!
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@Trinity-You Go Girl!!! That's the only way we are going to bring about change-by hitting them where it counts-in the pocketbook. There are many, many oncologists out there who are willing to accomodate you, and your peace of mind. Here are a couple of more recent links on scalp mets you might not have seen:
http://annonc.oxfordjournals.org/content/16/3/352.full
http://annonc.oxfordjournals.org/content/17/2/350.1.full
http://www.ncbi.nlm.nih.gov/pubmed/21431870
I think a good way to spread the word would be to wear a Penguin cap at the 'Walk/Run For A Cure' events. People would be curious and ask about what it is you're wearing on your head. Might even get some film coverage...But I don't see Frank going along with this.There are too few caps to allow this.
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Hi all,
My onco was very receptive to the cold caps however another doctor in the same practice was strongly opposed when I referred someone else to pcc. Not sure why he knows about me and knows I have kept my hair. Everyone heals in different ways and having your hair is a great start as far as I'm concerned.
On another note I need some advice........I have so much conflicting information about coloring my hair. I was originally told I could use vegetable dye a month after my last chemo. Geralyn said three months from last chemo even with a vegetable dye. I spoke to my salon who will use a pure henna, no peroxide, no ammonia etc......I am not ready now as I am still shedding, but I wasn't counting on three months either.......by then I may be all gray......any suggestions?0 -
@Leveled-Geralyn has it correct-No hair coloring until 3 months PFC and then only a vegetable based dye. This includes henna. Regular hair dye is NOT recommended until 6 months PFC. Some women find grey roots unbearable and go against the recommendations. Some even have cut their hair, but do you really want to risk it after all you've done to save your hair...?
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Yay Trinity! This is YOUR decision and I'm glad you won't take it sitting down.0
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Trinity - good for you! Most of the gals on here had resistance from their docs. My med onc had cold caps and freezers in her office and briefly mentioned them and then said they only have a 50% success rate. She then told me later when she saw me during chemo that I had the best success she had seen and that I did not look or act like her other patients. Her nurse even tried to warn me that they did not really work well. They were WRONG! I guess what I am saying is even an office that has the caps acts like it's no big deal and they don't work well. Most doctors are uninformed and quite honestly just don't care about how we feel about this. It is NOT about vanity, it's about privacy and a sense of dignity. I went through chemo without anyone knowing I had cancer UNLESS I chose to tell them. I finished chemo and then went back to teaching aerobics a few weeks later with my hair and my class never knew I had BC. It's not like people with heart disease, aids or diabetes have to go around announcing their medical situation to the world - why should cancer patients have to because they are NOT told about cold caps! Don't give up Trinity...this is YOUR choice just like everything else along the way in the BC journey.
OK - I will stop venting and put my soapbox away now:)
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I did use a semi permanent dye 5 weeks PFC .... I had my hairdresser do it, only cold water, only washing every 4-5 days .... I was still shedding and did shed for a long time ... 5 months... But not sure if the coloring had anything to do with it.....I waited 8 months to use permanent dye on my hair.
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Makingway, thank you. Yes it would be crazy to loose your hair after all this crap. I just look at myself and ugh........it's been tough. I think the thing is, is its a combination of gross hair, gray hair, can't blow dry it and really can't wear it down, only the days I wash it.
Lmflynn, I love your guts, just afraid I don't have as much, maybe in a few more weeks I will feel more confident.
I guess the first thing is to stop shedding and take it from there.
When did you all notice some hair growth? how about eyebrows, mine are thinning and have some holes but I feel like I also see new growth......maybe it's just wishful thinking..
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I didn't wait six months to color. I had no shedding at all PFC, and colored with a semi permanent, PPD and ammonia free hair color at my salon. I have had no problems.
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I lost a lot of hair (about 2/3) from about three weeks after my first chemo until about 3 1/2 months after. The heaviest was about three weeks after the first chemo and then steady from there. Even with all of that, my hair only looked somewhat thin and part of that was the lack of blow drying to fluff it up. I couldn't bellieve when I was out in the world that a lot of women have very thin and crappy hair. And they have to live with that. I had my hair colored in the gentlest way professionally 2 1/2 months post. (I was having out of town guests and a big birthday). I don't believe it caused any additional hair loss and the boost to my self esteem was wonderful. Sometimes a girl has to do what a girl has to do to take care of yourself. I know three others that did it about the same time with no ill effects. On a funny note: once my hair stopped shedding it really stopped. I didn't lose any at all for months. Not even normal shedding. Very odd. Another odd thing is that I'm one of those who had fairly straight hair with a bit of body who now is a curly hair. I kind of like it, but it's definitely strange. Just shows you how harsh the chemicals they pump into us are to mess up even hair growth.
My best to all who are making this journey. It stinks, but it does end and you will go on with your life.
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Thanks for sharing your story Julia. I'm curious - what regimen were you on?
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I would love some advise from someone who has used the caps with the A/C x 4 & Taxol x 4 regimine. I am 21 days from my first chemo today. Yesterday I started losing hair for the first time about 100 in the moring and maybe 50 or so in the evening. Could someone tell me what to expect while on Taxol?
Thank you!!
Renee
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I was on Cyclophoshamide and Toxotere.
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@reneerodin-I recently helped a woman who had unique situation. She was advised to start TC(Taxotere/Cytoxan)X4 treatments every 3 weeks. She was waiting for the second opinions from the other physicians she had consulted with. Meanwhile her local doctor pushed her to start treatment. She had her first treatment of TC (which was hard on her)and then received second opinions from both Sloan Kettering in New York and MD Anderson in Texas. They advised her that she didn't need chemo, but if she were to go ahead with it they suggested she do weekly Taxol X12. Because she had already had 1 treatment of Taxotere (which counted as 3 treatments of Taxol)she only had to do 9 treatments of Taxol, for a total of 10 treatements. During this time she didn't notice any extra shedding at all until after round 7. Between 7 and 10 she didn't notice any additional shedding. She had little side effects after doing the Taxol and felt it much easier than with the Taxotere. I only know of 2 women who had your same regimen of Adriamycin/Cytoxan followed by Taxol. One did well, the other not so well. I believe other factors contributed with the woman not doing well. One of them was that she had thick curly hair. The other is that the person helping her did not put the caps on her head properly. When I saw her at the clinic the top of the cap was not in contact with her head! It's very important that the caps are put on correctly. I've seen the Penguin cold cap video and they tend to oversimplify this process. The other woman did very well on ACT. Are you using a freezer or dry ice and coolers? What temperature have you been advised to use the caps?
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Thank you for answering. We are using dry ice. Cold Cap Therapy of St. Paul MN is doing the change outs for me so they have a lot of experience. Geralyn advised -30c. First & second cap 20 minutes then the chemo is started 10 minutes into cap three. They then change them every 30 minutes until 4 hours after chemo. I am a little worried about Taxol. I have been told the infusion is 3 hours long. I'm not sure if I am going to be able to withstand 8-9 hours with the cap. I start Taxol on July 6th. I have the choice to do taxol x 12 at a lower dose but thought that would be a long time to wear the caps.
Renee
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renee - my TCH regimen lasts all day, too - I end up in caps a total of about 8 to 9 hours. I am exhausted afterwards, can't wait to get that last cap done - but I make it through!!!0
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Did the woman you helped with 10 taxol's wear the caps?
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