Cold Caps Users Past and Present, to Save Hair
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Hey girls....I just wanted to let you know that our amazing Warrior Woman (Brina) has allowed me to share her cold cap story on my blog. It's posted! Thank's Brina! If anyone else would be interested in sharing their story on my blog, let me know. I get nothing out of this.....I just want people to see that cold caps really do work. I know many of you found your way here and tried the caps from seeing my blog. I just want to continue to show women there are options out there to keep your hair through chemo. PM if you are interested. No pressure.....
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Yea, I'm famous! Ha ha ha ha. My videos normally get a few dozen views. This one has well over 200. People are quite curious about chemo and capping.
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Hi ladies,
I just got diagnosed and was told that I would be needing chemo, dr. said my hair would fall out. I really really want to keep my hair, i have lots of it, and i think i could get by even if i lost 30% of it. So, I'm very interested in doing the cold caps, however, several doctors which i have consulted have said that they definitely would not recommend using the cap.
I did a bit of research online as well as read some of the posts in this board. I'm aware that there is a study out there which compared scalp mets between cap users and non cap users, which seemed to indicate it makes no difference. I am also aware that this is widely used in the UK especially, but the freezing method is still under a clinical trial in the US.
My questions for all you ladies are: did your doctor (surgeon and/or oncologist) approve your choice of wearing the cap or recommend it to you or were they opposed to it but you made the decision to do it anyway? Also, have any of you spoken with a doctor from the UK on this to see how and why they have been ok with this for many years while US doctors seem to be hesitant? My aunt had cancer treatment in the UK 25 years ago, and at the time they had tied a very tight elastic band around her hairline which to me was to serve the same purpose (reduce blood flow to scalp to avoid hair loss), so they have been doing this without being scared for mets for years it seems.
Please let me know, I really want to keep my hair too.
Thanks.
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hi windgirl, sorry to hear of your diagnosis but you've found great support and resources here on these threads.
My oncologist was not supportive and indicated it wouldn't be successful but didn't prevent me from trying cold caps. I am through 7 of 8 rounds already of dose dense ACT, and while shedding is significant and increased the last few weeks, thus far it isn't clear to strangers that I'm undergoing chemo. I'm not certain it'll fully hold given shed pattern and an expected month or more of heavy shedding but I have had 2 months of coverage and don't expect to have to shave my head at this point. I am very glad I pursued cold cap use despite expense and labor intensity of the process.
I have met several others at my leading hospital that have used cold caps successfully despite the oncology team not being supportive. Others on the thread will chime in that they've had support and even some who had cold caps recommended by their oncologists.
Best to you as you navigate your course of treatment and make decisions. You'll find plenty of support here.
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Thank you Kazzy, this site is very informative. I hope you get to keep the rest of your hair, looks like you have very little left! Honestly that's all i want, to be at a point where I can get by and not have to shave it.
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hi windgirl,
I fall into 'my oncologist recommended them' camp. I am being treated at a major NCI comprehensive cancer center - I'd never heard of cold capping, but when we decided chemo was in the treatment plan, MO suggested if I was interested (um, yeah!). MOs view was that they have had good results w my treatment (TCx4).
I am 14 days past first infusion so too early to tell how it's going. I wake up every morning scared to find clumps of hair on the pillow...but the ladies on this thread are an inspiration, so we will see.
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Hi Windgirl, also in the MO recommended camp. I was treated at Emory and my MO brought up the subject of cold caps. I had 4xTC and kept probably 70% of my hair. I am 6 months out and hair looks like it used to look. Good luck, these ladies are a great source of information.
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Thanks Raindew, good luck, it really does seem to work from reading these posts so I'll cross my fingers for you
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Windgirl.....I am a brand new Cold Cap user....had my 1st treatment last week....so havent even gotten to the 1st shedding period.....so I cant talk to if they work.....but I am sure spending a pretty penny hoping they do.
I am responding to you regarding your MO. I am going against my MO as well. They cant tell you what to do. I do not understand their rationale for telling woman not to do this....ok, maybe if the patient is in advanced stage. I am at one of the best hospitals in the country....here in NYC.....and I am the very 1st person to do cold caps in the hospital. There is only 1 hospital in NYC that "allows" cold caps. I read the study, you are referencing....and on that I also decided that I have a greater risk of complication for the chemo itself than the risk of Scalp Mets.
I pray these caps work.....because they are expensive and a hassle. The process is labor intensive (b/c I live in a 5 floor walkup). time consuming and a lil painful.....though it does make the day go by quickly. But....if I get to keep most of my hair...and keep my privacy.....then soooooooo worth it!!!!!
If you decide to do cold caps....I urge to take a stand against your MO.....and do it! I think they are more concerned on their reputation....then concerned for their patients emotional and sometimes physical health (docs that over prescribe powerful chemo protocols for small amount of cancer).
And if you do decide....we are all here to support you....and give you advice of what products to get...how to use the caps and to calm your nerves when you think you messed up...they all did that for me!!!!
-Jennifer
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Windgirl, most oncologists are not very knowledgable about cold caps and some seem to take a stance aganst them without doing their homework. What was your doctor's reasoning for discouraging cold cap use? l was treated at a top NCI designated cancer center. Although my oncologist was aware of cold caps, she had never had a patient use them. When I told her I was considering cold caps, her response was "If it's important to you , then why not?" After seeing my success (I saved at least 70% of my hair), she now often recommends them to her patients. I consulted for second opinions with two other oncologists before making my chemo decision. Both were relatively young woman doctors. The first had never heard of cold caps and stared at me blankly when I mentioned them. The second expressed concerns about possible scalp mets. I am completely comfortable with my decision to use cold caps and so happy with the results. If you are comfortable with your oncologist otherwise, then you should just tell him you are using cold caps if that's what you decide. You don't necessarily need permission or approval. I really wish more in the medical community would get excited about the possibility of cold caps for their patients. We are offered all kinds of medications and remedies to treat the side effects of chemo, but when it comes to the most devasting side effect for most women- hair loss- we are expected to just accept that as inevitable.
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See page 4 of this article for info. related to scalp metastasis. As you will find the claim many onoclogists make is highly exaggerated:
Presentation, Impact and Prevention of
Chemotherapy-induced Hair Loss0 -
Windgirl - 2 oncologists, one at an NCI, both didn't care what I did as long as I got through chemo. One thought it was a lot of work to keep hair but it's wasn't his hair that would be falling out. What type of chemo are you doing? It does make a difference. I lost about 50% of my hair but managed to get through this just fine.
And Ladies, I colored my hair today using the Naturtint. My stylist was amazed how well it covered grey and how soft my hair is now. Thank you to everyone who recommended this brand. I've never used a store brand and I am satisfied with the results.
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Congrats WW on the successful coloring - I know how great it felt to me to get my first highlights after chemo!
Windgirl - my oncologist told me I was free to use cold caps but that I would definitely lose my hair. I did not. It was great to prove him wrong! My pic is approx 1 year PFC with highlights. I shed, but I kept probably 75 to 80% of my hair. No one could tell but me. I did TCH (Taxotere, Carboplatin, Herceptin).
IMO, oncologists:
1) are clueless that the newest cap technology really DOES work for most regimens (Adriamycin has lower success rate)
2) discourage CC based upon:
a) it requires more coordination with timing of chemo with nursing staff (not much, but some)
b) it is expensive for patients
c) it takes more space up in the chemo rooms
d) not being up to date on risks of scalp metasasis (~1%) from breast cancer vs risks of permanent hair loss from chemo (Taxotere I believe is 3 to 6% risk)
Hope this helps!
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wind......my onc never heard of the caps but told me chemo drugs would not go to scalp. Said I was free to use them but they probably would not work. It has taken me over a year to feel like my hair thickness is back to normal. I lost about 30% I am guessing .
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Thanks everyone for all the responses, it's very encouraging. Also I dont see how this is any different than icing nails or mouth to protect them, and I have not read that doctors are against that. My breast surgeon said he was against it as the medicine would not go to that part of the body effectively, but I will be seeing my oncologist on Monday for the first time so will be asking him the same thing, except this time around I will be more informed thanks to this site and u ladies
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I'm in the same position. I had my lumpectomy yesterday and felt good enough today to take my baby out for a jog, thank God. I asked my breast surgeon about the caps and she told me point blank that they don't work and the hospital frowns upon using them. (I'm being treated at Sloan) I ended up talking to a few nurses in the breast center and they both said they heard of good results. I still want to try them but finding the extra money for the caps when I'm being discouraged by my drs is making it such a hard decision. I have very long hair my whole life. I'm only 39 with a 1 year old. I just don't want to look sick because I'm not sick. Chemo is going to be no walk in the park but I don't think adding the cold cap is going to make it that much worse. Curious if anyone has ever had success with insurance covering he cost? Still don't know my chemo plan yet - not until after they review the pathology of the lumps removed. Very early stage since both lumps were less than 1cm. Sorry for the disorganized ramble. I'm on information overload. I just want to keep my hair and I can deal with everything else. Geez- I wored a corset for months after I gave birth. I went jogging the morning after surgery. I think I can do this...right?
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my dr told me caps don't work and I'd lose my hair, but I could do what I wanted. I saw the leading gal at the university of colorado anschutz, and she highly recommended them, because the risk of permanent hair loss with taxotere is far higher than the risk of scalp mets. So I went for it!
I've lost a good deal of my hair, more than I was hoping, and I have 2 chemos left, but..... I was out with my husband last night and we saw a friend. I commented that I'd be back on my EMT schedule once I completed chemo. He stared at me in confusion because he didn't know what I was going through, then asked me when I'd start chemo
I told him I'd already finished 4 of my 6.
Best. Moment. Ever.
Even with hair that I think looks like shit and makes me sad right now, people who don't know about my chemo, can't tell I'm in the middle of it. That's a big win
worth all the hassle and the cost.
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DaniellaD...I'm being treated at Mount Sinai...and was discouraged by my Oncologist there to use them. I'm the 1st in the hospital to use them....and have to say the nurses in the chemo center are all helpful and encouraging. If Sloan says you can't...you can always go to another oncologist/hospital. NYU Cornell actually has a freezer and is the only Hospital in NYC that encourages using the Cold caps...
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Daniella-If you can't afford the Penguin caps try the Elastogel caps. You can get a set of 8 for $720.00!
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Daniella - there is some organization someone pointed out on here the helps financially with cold cap costs if you qualify...I don't recall the name, though, or know any details. Maybe someone on here bookmarked it and can post it again???
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Daniella, try an online search for the Cold Cap Assistance Project. They're a nonprofit based in Texas that supposedly helps wth financial assistance for cold caps. I know nothing about them except for what I read on their website but it's worth a try. I didn't try to get reimbursed by my insurance company, but I remember two women on this thread who had success getting partial reimbursement. It took a lot of effort and the reimbursement was equivalent to the amount they would have received to buy a wig- maybe $500?0 -
Hi ladies I have a question to all the past users - my last round is August 11, sooooo excited . My friends wedding shower is August 24 how soon after our last round can we start blow drying on heat again? Can anyone let me know
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Here is something to add to the mix. Water-only fasting around the time of your infusion protects hair follicles as well.
I lost hair on the sides, underneath, as many others have as well as the caps don't cool that area well enough. I noticed that I had hair regrowth in these areas when I did a water fast.
The theory and practice:
I did a water fast (water- only for 18 hours before start of infusion and 7h ours after) for round 5 of 6 treatment with TCHP. Fasting helps healthy cells slowdown metabolic processes which can protect them from the cell-phase affects of chemo which work on dividing cells. It also freaks out cancer cells, which are primarily glucose dependent, the added activity of which makes them more susceptible to the affects of chemo.
I decided to try it out, and I noticed since that others on the BC.org boards have tried water fasting as well. It did seem to lessen the side effects slightly, though I had a Zoladex shot to inhibit ovarian activity and that caused other side effects.
It wasn't until around round 6 that I realized that I had regrowth (I'm presuming starting after round 4) but the Zoladex side effects were bothersome so I didn't fast for my final round. Now it is three weeks Pfc and I'm losing some of the regrowth.
This protection of the hair follicles was noted by researchers of chemo and fasting.
The difficult parts of the fast were that you can't take the pre-chemo steroids with food for the evening before and the morning of treatment. Also, that evening after my dose I had massive uncontrollable diarrhea and let's just say I wasn't at home nor in a bathroom when it started. I think knowing about these two catches though it is totally doable and can help to keep or regrow hair sooner.
Ann D
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Dlove- I used my hairdryer on low heat and low air at that point after chemo. I just tried not to blow the hot air directly on my scalp. I used the cool blast when I had the dryer pointed at my scalp. I figured it can't be any different than a warm gust of wind blowing my hair outside, right? Around 3-4 months pfc is when I felt comfortable using a little more heat on my head. I think using the dryer on low is better than nothing and helped give my hair some volume. Yay for only one more treatment!!
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I think I was the first one at Virginia Mason Cancer Institute in Seattle to use cold caps. The chemo nurses have all been marveling that I still have hair. I shared information about logistis with my MOs nurse so she could help other women and their nursing staff figure it out in the future. My MO felt that there wasn't any definitive evidence against using the cold caps and that it was just an unsupported hypothesis from many years ago. He thought it was a lot of work but didn't try to dissuade me.
The relative luxury of having used them is that you are more anonymous as a person going through cancer treatment, it is much more private if you wish it to be so.Ann
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Agness - how is your hair holding up? I'm on the same chemo protocol.....and nervous.
I will be 14 days past my 1st treatment this thurs.....and so afraid my hair is going to start falling out like everyone else's. My 1st 2 caps were not only -24 Celsius, not the required -32.
I agree with you that keeping your hair helps you stay private about your cancer treatment...it is one of the major reasons I did the Cold Caps. That and not wanting 2 inches of hair for my wedding next year.
Praying these CC's work for me!!!
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Jennliza -
I can't answer your question as I am in more or less the same place as you (today is day 17 post first chemo) and every day I wake up wondering if my hair will all fall out.
What I can say is that I have noticed it substantially thinning in (ahem) other places, but haven't started any shedding on my head yet. I gather from women on this thread that is to come - I think I saw many had a big shed a few days after 2nd tx.
Fingers crossed for both of us!
(Also in it for the privacy)
Rain
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Jennliza, Agness & Raindew - I was on the same protocol as Agness, TCHP. I went through four rounds. My experience was similar to many others here - a LOT of shedding around days 14-21, but I still kept enough hair, no wig needed.
Like many others I thinned mostly just above my ears and at the nape of my neck, probably because the caps aren't as cool there. It may help to use some of the gel bands in those areas, if you can figure out a way to make them stay over those areas.
All the best!
Edited to add - Agness, I completely agree with you re. privacy, that's one of the best aspects.
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Hi All!
Quick question- I am going to visit with family for the first time since ending treatments. Is it ok to wash every other day now??? I am 12 weeks PFC and will be seeing many family and friends. Just curious!! Any help would be great!!!
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2 boys mom - I think we can tell intuitively what our hair can handle and what may be too much. Personally, I like the 2x per week wash as I did that prior to chemo. It leaves my hair shinier and it is a huge time saver. With that said, if you notice an increase in shedding you can cut back your washes. If it's feeling fine to you, gradually return to your normal wash. I'm betting you'll have a good sense of what you need to do.
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