Cold Caps Users Past and Present, to Save Hair
Comments
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Yeah, I'm starting to obsess that the first caps weren't cold enough because it took me longer to get them on ice than I planned. Not freaking out about it yet, but I am sure I will even if there is nothing I can do about now.
I did manage to get a blister on my right ear from the cold cap.... Ouch! Gonna use the panty liners next time. Assuming that I still have hair and there is a next time.
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You will have hair...buy your pantyliners now
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I colored my hair last night and put it up in rollers. Took some photos for you ladies. 6 weeks PFC. Getting a real haircut next week. Im wearing more eye makeup to compensate for no brows or lashes.
Excuse me while I hit the town! Swing dancing tonight.0 -
Good for you! Have fun!0 -
My MO told me that although some patients had been experimenting with cold caps, the success rate with the regimen she is recommending for me (6 3-week cycles TCH) is not good. She says that virtually all of her patients on this treatment lose all hair, including eyebrows and eyelashes.
All of the positive comments on this thread would seem to lead to the opposite conclusion. Is it just that people who are successful post here and those who aren't, don't post?
If it were easier, I would definitely try. But I'm having a hard enough time imagining how my 2 working parent family with young kids is going to handle chemo period, much less obtaining/dragging around bags of dry ice and having a team of people working on my head for hours upon hours (I'll actually be doing TCH + Perjeta which I think adds another 90 min).
Any thoughts on this?0 -
With the TCH I am on (Taxotere, Carboplatin, Herceptin), I am hearing good success rates. Fingers crossed here!!!
There are other Ts and Cs but I am not so sure they don't have good results as well. I think it is the A (eespecially given in combo with Taxol or Taxotere) that is tough on hair loss. Others here can give you the skinny better than I can.... When I thought I was going to be on TAC, I wasn't going to do the cold caps.... The folks at penguin cold caps were very open about the different regimines. If you are interested at all, I'd reach out to them via their website, they were quick to respond back.
Good luck in whatever you decide.0 -
We have had some on here who were not successful, mostly those who received ACT. I'm not sure about your particular regimen, but I'm sure someone will chime in. Yes, using cold caps adds another level of complexity to chemo days. But, you'll be there anyway and probably not by yourself. You'll most likely find that everyone wants to "help". So put them to work, picking up dry ice, being a cap changer, watching the kids, preparing meals etc. I understand that it's all overwhelming right now. Using cold caps is something you'll do for your own sense of well being and now is the time you need to focus on yourself and your needs. That's hard to do for a working mom with young kids, but if you can figure out the logistics it will be well worth it in my opinion.
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Marsha - you look awesome! Congrats! So happy for you!
Orange Mama - I am one of the ladies that weren't abundantly successful. I was on FEC D and told that my chances of success could be anywhere from 50% to 80%. I tried it because I knew that if i didn't try it, i would always wonder and be annoyed with myself for not trying. I'd say I lost about 80% of my hair, but never went bald. My hair is very thin and i can't wear it down, so i opt for a fake ponytail and now, more recently, even though I am almost 5 months PFC, have opted to wear a wig, as I contemplate going back to work. I don't want people to know, although I'm sure they've figured it out, but until my hair looks reasonably normal, I will be doing whatever i can to camouflage. There is lots of short re-growth, but it is abundantly clear that it's going to take a very long time just to be a decent length. Looking back, I still would have done the caps. Yes, the work involved is daunting, but once you do it the first time (and get past the stress of buying your supplies), it's not as hard as you initially think it will be. What do you have to lose? Nothing! But you do have the potential to save your hair - and that is a big plus. Even where i am now, i have the option of wearing a fake ponytail because my head still has coverage. Others at my stage that didn't use the caps only have very short hair, say 2 inches. Do I like the look? not at all, but it's better than the alternative and frankly, i escaped wearing a wig for 7 months. That must count for something. I finally used herbatint a couple of days ago, and finally have coverage of the greys. What a relief. And my scalp is just now starting to feel clean. Another relief. I put up with so much hair related stress for so long, sure i wonder if wearing a wig would have been less stress, but i don't think so, now that i do wear the wig. I don't like wearing a wig, but we do what we have to do. My kids love the wig - they lit up when i first put it on, because they think i look the way i used to with it on.
I guess what i am saying is - there is no perfect answer, but will you look back and wonder what could have been if you don't try? If it doesn't work, you haven't lost much (ok, some money, but that's a temporary setback). If it works, you will be thrilled. I vote that you should try it.
xo
Curly0 -
oranjemama-Yes, I have thoughts on this-Your MO hasn't taken the time to research the facts! I have personally helped dozens and dozens of women to save their hair using cold caps. People just assume that an oncologist keeps up to date with the latest and greatest information in regard to their patients health and well being, I know I did, but, this isn't always the case. It is very frustrating for me when MO make these statements because I've taken the time to do my homework-I know the caps work and that their safe. I've helped many women on your same chemo regimen and they've managed wonderfully, and kept their hair. Using the caps is a great distraction from chemo and makes the time fly by! The greatest obstacle is the cost of the caps. There are 2 brands available to the public. One you rent, the other you buy. The majority of women on this board have used the Penguin rental caps. User's of the Elastogel caps have had some success also, there's just not many that post on this discussion board. The rental cap is by the month-their monthly rental price just went up from $455.00 to $580.00, an increase of 27%. You would need the caps for 4 months. If you can't afford the rental caps you can purchase the Elastogel caps which run @$90.00 each. You can get a set of 8 caps for $720.00. Some companies will give a huge discount on the price of the dry ice if you tell them what your using it for. It's up to you to decide whether or not to use the caps. If you decide to use the caps and your MO is not supportive, look for another MO. Chemo treatment runs @ $60,000.00! They should be giving foot massages and manicures at that rate! I'm sure another MO would be happy to accommodate you.0 -
I just want to chime in and second what Curly said. I was one of the unfortunate ones who didn't have success. I was on AC-T and lost about 50% of my hair after my second AC treatment. It was coming out in fistfuls by then and I knew there was no way it would last through six more treatments. For me, it was not worth it to spend that much money and put that much work into babying what little hair I had left for months and months.... it was too traumatic to me to look in the mirror and see how the caps were NOT working because I had been so optimistic. However, I knew going in that AC is NOT the ideal regimen to be on for the caps. I do not for one second regret trying, though.... none of the time, energy or money we spent was wasted, in my opinion. Even though we didn't save my hair, we TRIED. I would have always wondered if I hadn't tried.
Good luck to all of the current cappers! :-)0 -
it's been 16 days since my first treatment. This morning I lightly pulled on the hair around my ears and pulled out quite a few hairs and I don't think there are many hairs left there, but I know this is normal. The rest of my hair seems to be shedding a little more than normal, but not too bad. I'm thinking this means the caps are a success, at least for now!
Oranje mama- from what I know, pretty much everyone on TC or TCH has been successful, at least to the point that they never had to wear a wig. Using the caps during my first treatment was a little stressful, but it will all be worth it if I make it through this process with my hair.0 -
Marsha, forgot to say you look terrific. Another success story! Hope you had fun last night.
Daye, you're at that nail-biting point where you would be losing your hair if not for cold caps. Hang in there. When you make it to your second treatment with your hair intact, you'll start to believe they're really working.
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Ditto what Makingway says. As I note occasionally, I have compiled the research on the effectiveness and safety of cold caps. I am happy to share it with anyone who would like it either for themselves or to share with physicians and hospitals. Just PM me if you're interested.0 -
My new gentle shampoo won't make it here for a few more days. I need to wash this hair with something.... It's been six days and my plan is to go in office tomorrow. Any ideas of what I can use that I might have here at the house....?
I have dry shampoo here, never heard from anyone if that was ok or not....0 -
In a pinch - baby shampoo (Burt's Bees). It has less bad stuff than most 'grown up' shampoos on the market.0 -
Daye - at 16 days you are at the point where it is very important to baby your hair. Be extra careful not to pull it or stress it in any way when combing or shampooing (using very cool to cold water and gentle rinsing) and don't put it in a pony tail. My oncologist, who has a great deal of experience with cold cappers, told me that shedding would start between day 18 and about 22. Mine did exactly that. It starts slowly, with just a few extra hairs than normal, then more begin sliding out all day long. This is the period when, if you were not using cold caps, you would be going bald.
Most of us had days of doubt between this time and a few weeks later when we began to finally believe that the caps were working and that we would be keeping our hair. Shedding can be unnerving, but it is just a few hairs more than you would like sliding off uniformly from all over your head, rather than all of it coming out in big clumps.
Good luck!0 -
My oncologist was the one who recommended cold caps for my TC treatment. Finished my 3rd tx and no one would know I am having chemo. Hoping the hair stays for one more!0 -
One Texas Day - I think it's fine to use your regular shampoo until your new shampoo arrives. The most important thing is just to be very gentle when working it into your hair and rinsing.0 -
good for you Marley!!!!!0 -
I will be starting chemo on 12/20/13 with ACT regimen. Any cold cap success stories with ACT. I have heard it is not successful with ACT but just want to be sure before I throw in the towel and cutoff my gorgeous dreadlocks.
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ACT is much harsher than TC. My oncologist in NYC who has had over 50 women use cold caps told me that in her experience T/C users had more success. She is now taking part in a clinical trial with four other hospitals across the country using the Dignicaps cooling method, which does not require cap changes. Hospitals in Atlanta and San Francisco, I believe, are also taking part. She has about eight women so far and needs to enroll a total of forty. If you are near any of the participating centers, you might want to enroll in the study.0 -
Kathleen, in addition to less cold cap success in general with the ACT regimen, I wonder if your dreadlocks would prevent the cold caps from making close and even contact with your scalp. Hopefully some of the ACT cold cappers will chime in, but it seems that most of them lost a good 50% of their hair. Are you going to have AC every 2 weeks or every 3 weeks? Taxol weekly or every 2 or 3 weeks? I think the dose dense (every 2 weeks) regimen is harder on hair.0 -
The type of drug is a BIG determination to success.
My drugs were CAT; all 3 drugs infused in one sitting (treatment every 4 weeks for 6 total treatments.) I tried the cold cap and quit after the 3rd treatment because hair was coming out in handfuls. I never did shave my head - just allowed it to naturally fall. (and I kept/saved it - stored in a bag) I do believe I did everything possible to save my hair - a lot of attention paid to it - but at the time I thought it was going to be worth it. And yes, it was very expensive!
I do believe cold cap works for those using OTHER chemo drugs.
So my opinion Kathleen63 is - since you will be having the chemo drugs CAT - don't expect success or you will be heart-broken. I won't say not to try it - emotionally you may need to do everything possible. I know that's hard to hear. I'm sorry.0 -
marsha - you look great!0 -
Thanks for all of the responses. I think I will look at the silver lining in this and enjoy not working so hard to save my hair. My plan is to wear some nice beanies and headwraps and have some fun with makeup and jewelry, and to wear a smile whenever possible. Blessings sisters- thank you for your support. kathleen
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Kathleen
With a positive attitude like that, you are going to kick ass and take names. .... Hair or no hair! Love it!
I am having a down day so your positivity is a much appreciated! You go girl!0 -
I want to pipe in here for the people considering the caps while going through ACT treatment. Several months ago, when I knew I'd be starting chemo, I read through this whole thread. It took me weeks to do it. Going back over the years I read that there were a few people who had success with ACT - if you define success as keeping SOME hair, maybe even just 20-30%. Some people had just enough not to wear a wig. Others had to wear a wig for a while but found that the hair they did retain looked better after the bald spots started to fill in after treatment and were happy for that. A few months back I also looked on the Penguin Cold Caps Facebook site and a few people there commented on having positive results after ACT. ACT is really hard on the hair but I don't think it's a totally foregone conclusion that you will lose all your hair on ACT with the caps. There are some people who have success - it's just impossible to tell if you will be one of those people or not until you give it a shot. If you have the time you might want to go back through the old posts to get a clearer picture of what you might be up against. I wish everyone good luck no matter what you choose to do.0 -
I just wanted to tell would be cold cap users what my experience has been so far, and what I would have done differently. So far, I got 2 treatments of TC, used cold caps 2x, and had professional CC therapists help me with the caps. I have 2 more chemo sessions to go.
My hair was long and thick and I have lost about 60%-70% of my hair so far. I started shedding on day 15 after the first chemo and it hasn't stop. Chemo has left my hair matted and brittle and clumpy. I followed the hair care instructions but nothing seems to stop the shedding.
If I can redo this, I would have cut my hair to shoulder length and thinned it. The caps might have better contact with my follicles that way.
I hope the shedding will stop. I am heartbroken that the caps don't seem to work for me. My third chemo session is in 2 weeks. I hope I still have enough hair to save. It's no one's fault, it is what it is.0 -
Data from the latest review study on the effectiveness of cold caps provides some information about the effect of various treatment regimens (Breed W, van den Hurk C, Peerbooms M. Presentation, impact and prevention of chemotherapy-induced hair loss. Expert Review of Dermatology 2011;6:109-25.)
In particular, the authors note that results are excellent for those being treated with taxanes (docetaxel [taxotere] and paclitaxel [taxol]), and anthracyclines (doxorubicin [adriamycin]) but poor for those being treated with the two types of drugs simultaneously in combination with cyclophosphamide (cytoxan). Results are somewhat better when the drugs are given sequentially – doxorubicin and cyclophosphamide followed by docetaxel.
As with all studies, this review reminds us that while individual responses vary, information on how a particular regimen affects a group of women can provide us with information that may help to make decisions.0 -
Very true, 301724. Sounds like dose dense ACT is really a challenge but those who do ACx4 every 3 weeks and then 12 weeks of Taxol might do better. If I remember correctly, those who opted for the ACX4TX12 chemo were the ones who reported more success on the boards here. Thank you for making that distinction.0
