Cold Caps Users Past and Present, to Save Hair
Comments
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luckynjmom, thanks for reporting in about your shedding finally slowing at 11 weeks. That gives me hope. I've lost half of my hair. Fortunately it was thick to start with. Its now very thin. I'm 8 weeks PFC. This is gut wrenching and while somewhere in my rational mind you have faith that you will not be bald in the end, you anguish a little bit every day over this, and over time, it's gut-wrentching and very discouraging.
No one talks about this, but every woman who starts this journey needs to know that this could be a possibility. That you might lose A LOT of hair, inspite of the caps. Not everyone has the fabulous "I barely shed at all" experience.
I'm having a bad day, can you tell?
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LeesaAnn, thank you so much for sharing your experience. I would rather know that this is a very real possibility than go in with unrealistic expectations. I have fine, thin hair to start with, so I could be in trouble if I lose quite a bit. I truly do appreciate your post.
And hello, I see we are "neighbors"...3 hours away, but still closer than anyone else I've seen on here using the caps!
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TC9876, as you know, my MO is a supporter of the caps. But most of the success he's seen has been with TC or TCH. He doubts it a lot more for AC&T, I assume because he hasn't seen a lot of success with that regimen. He and the chemo nurses seem shocked that I still have a good amount of hair. I know I'm not out of the woods yet, but am really hoping to make it through my final chemo and the post chemo shed (knock on wood) with most of my hair.
Portishk, sorry to hear that your daughter had such a rough time the first time around. I would first make sure that she received the appropriate anti-nausea in her pre-meds. That could be the issue. But if you feel it was directly related to the caps, then an ativan may do the trick.
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Portishk: I took ativan before every chemo and had ativan in my premeds along with benedryl. I was drowsy and would nod off a little. After the first chemo I did not have an appetite on chemo day and would not eat too much either...felt a little queezy those days but it was managable for me. I hope your docs can help with another medication that may not knock her out as much.
LeesaAnn: I had horrible shedding after chemo was complete. Mine lasted for a long time and yes it was "gutwrenching" to me. I would get really upset by it but then it just stopped. I felt like my hair was horribly thin but in the photos it doesn't look that way. I also felt much better when I got a good haircut post chemo and it made it feel healthy and thicker as well as look much better. Hang in there.....don't give up hope!
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LeesaAnn: What is your chemo regimen? I don't think I'd be able to hide it if my hair thinned by 50%.
For those that saw shedding PFC, did you see any significant shedding during chemo?
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Re: shedding...everyone is different...I did not shed at all between #1 and #2. Then would shed from Day 5-14, then not at all, til 5days after #3 etc. I had TC x 4. I thought three to four weeks after last chemo I would just be done with shedding. WRONG. It was never a lot, but more than I did pre-chemo...I kept thinking, you can't really tell when I looked in the mirror, but every so often I'd get a clump of 4-5 hairs. Freaked me out a few times...but i promise..it does stop, your hair thickens back up quick, and kept trying to put in perspective. My sister had gone through chemo without the caps a year and a half before me ...and was still growing hers out...my hair was thinner, but still past my shoulders and no one could tell but me ...especially when I put in a ponytail.. It may not be perfect or the exact hair pre-chemo, but its a matter of perspective...."change the lens" someone once told me, you get a whole different picture.... Keep the faith!
I went on a family beach vacation 6 months PFC and was the first time I washed my hair in warm water in over 8 months...I just got sick of the cold and said the h*^% with it...as with all things once I gave into it and quit obsessing (am sort of OCD)... It quit shedding!
I have such an appreciation now, and so thankful to find this site and caps...it totally changed my experience with chemo.0 -
Portishk...I get nausea with each cap changes. What helps me is to make sure I eat during pre meds, I also take two nausea meds orally during premeds...the nausea progresses during my treatments but is worse if I dont eat
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LeesaAnn: Please stick with it. You may lose hair but the cold is so protective and helps your hair regrow much more quickly. Everyone loses differently. I lost a lot but had a LOT to begin with and never went bald, nor needed scarves....Finished chemo 6/6/11 and while my hair is short (I chopped it off), it is really thick again and anyone who didn't know me or hasn't seen me in a while would never know. Many of us panicked....but it will work out. Arlene
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LeesaAnn, I'm so sorry that you are discouraged, but I do think that it's important to present the results realistically to those who are starting out or considering the caps. Thank you for doing that. I think that there should be a range of cap sizes available to account for different head sizes and hair thicknesses, as it seems as though many women both lose volume and lose hair around the perimeter. I think that women who have very thick hair like you should be told that there is a possibility that their hair will thin considerably. It's heartening to hear from others that their hair filled in quickly.
I had very fine hair to start with, and I lost a small amount of hair after my first tx, nothing really after. I am currently a little over 5 weeks PFC, and I do not need to wear a wig or head covering; it looks like I have a full head of hair. My hair sits very close to my (small) head, and I think that's why I didn't lose much after that first tx - the cold was able to get to the scalp efficiently and evenly.
I'm very grateful to this forum of women who we can have discussions with, because some of the info from PCC is contradictory (hair care, coloring , etc) or lacking entirely.
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Leesa Ann,
I agree with you - I had no idea that I would shed like this PFC. I thought I was home free having gone through chemo wiht very minimal hair loss. I was devastated when it started coming out - my hair is quite thin and still shedding a bit - but slowed down considerably - especially after shampooing.
Like you, I had a lot of hair to start with - thankfully - I think penquin cold caps could do a better job of balancing expectations - but I guess that's partly my fault for going into it with rose-colored glasses. At the end of the day - I would have still used the caps even if I had known I would have ended up with this amount of shedding - I'm not bald, after-all.
Good luck - I sincerely hope your shedding stops soon - and I understand about the bad day - I've had my share of meltdowns when trying to get ready for work in the AM - trying to look professional. As my husband always says - this too shall pass - Lucky
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I was disappointed when I was reading the CURE magazine that came in the mail today. It contains a small magazine that is titled Countering the Effects of Cancer Treatment. They have a section on Hair Loss. "Strategies to reduce or prevent hair loss caused by cancer drugs generally do not work."
What a shame that they do not counter this with any PCC articles etc. I may have to write in.
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Ang 7,
I agree with you - even though I've ahd a lot of shedding - I woudl do it again - because I know for a fact that I woudl ahve been bald otehrwise. A woman I work with was diagnosed a few months before me - and was on teh same chemo as I was - and she was totally bald within 22 days. I definitely prefer what I have now to being bald - I have full coverage - and I don't mean to sound like an ingrate - I'm very thankful that I found out about these caps and will continue to pay it forward. I think that the bc related publications don't talk about it because it's not FDA approved - and frankly perhaps because so many drs and nurses continue to tell us that they don't work. I hope the Oprah focus on them will change some of that.
BTW - Did you experience shedding pfc? when did yours stop?
Lucky
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Lucky~
I actually had minimal shedding...it stopped after about a month.
I am wondering if it helped that I was on a heavy dose of iron due to anemia?
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Again being an old - timer,,,not like Susan or Ang7,,, but an OT none the less... Frank actually warned me about shedding because I'm basically a vegetarian...but definitely no red meat kind of girl...and that "carnivores" shed a lot less ... I think what Ang is saying matters... It may be the iron...Ladies, we are on the beginning of the paradigm shift to saving hair through chemo...I guarantee in 10 years we all look back and won't believe what we accomplished and innovated in this.... It's not perfect yet...but I bet it will be... Can't wait until Frank or someone like him figures out how to better save hair with 'A'....
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I agree. I remember Frank asking me if I was a vegetarian and when I said no, he replied something like "that will help". There are several ladies on this thread who have written about iron supplements slowing/stopping hair loss.
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I'm almost 11 weeks PFC and shedding like mad. I have very fine hair -- a fair bit of it I guess -- and all I can say is I had better wait to commit a major crime until I don't leave DNA every single place I go.
I don't really worry I'm going to go bald -- new hair is coming in in the places of total loss around my face so even if I did I would be sort of OK with it. I had a real TERROR of being one of the 6-10% (depending on who you ask) who have permanent hair loss.
I really wonder if 100% of taxotere treated women used caps whether that percentage would drop to zero.
In other words, can the caps prevent taxol induced permanent hair loss.
To me, that is the biggie. Yea, it would suck to be bald but I would have gotten through it. We all would. It does grow back, except when it doesn't.
There is simply no excuse for the medical community to refuse to explore this issue by insisting that all women treated with a taxol be fully informed and offered this option.
Oh, wait. There is an excuse. It is "just" hair.
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TLG - excellent post!
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I agree - knowledge is power - so there should be full disclosure for all methods to retain hair - as well as the risks of Taxotere induced PERMANENT hair loss. I've looked at the Taxotears website and it's heart-breaking.
BTW - I was on iron supplements - mega doses for a long time - due to anemia from blood loss prior to chemo - that may have played a role in my shedding - but my iron levels are normal now - have been for awhile - but each person is different and it could have taken a while for the rest of my system to recover even though iron alone was in the "normal" range. Still - what I've got beats bald any day - Lucky
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Ang I was wondering if you used the extra gel straps with the caps?
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brax~
When I did the caps we only had a large Gold velcro type strap that went around my whole head?
I must say that my husband made those caps incredibly tight. He used to climb on my chair in order to put them on and then strap them.
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ang7, at what point did you start normal hair care, such as coloring PFC? I am nearly 6 weeks PFC and have had little to no shedding. My caps were also put on incredibly tight by my daughters. My scalp was so red and frozen by the end of the day that it took hours for the feeling to return!
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Portishk- I was given Ativan with my pre meds as well as Aloxi that helped tremendously with nausea. For some reason I have not experienced nausea, I do hope they can change her premeds so she doesn't have this issue going forward. I feel horrible for your daughter! The picture you portrayed about the awesome teamwork really touched me and I am keeping you in my prayers. This is the first day that I have been able to log in to read anything......My side effects have been really icky. I wound up in ER because it felt like an elephant was sitting on my chest and I couldn't breathe. After an EKG, chest X-ray, and cat scan, they didn't see anything and gave me morphine for the pain......and sent me home. that was several days ago and it is getting better.....I hope this is not how the remaining treatments will be because it is unbearable. Will be speaking with onc tomorrow for sure..going back to bed now....
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Victorious - I didn't have an electric blanket for my first treatment but I have one now. thanks for the tip. My first treatment day went well, each day after not so well.....forging ahead though. This forum is extremely helpful!
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ckk~
I actually had my hair colored about 12 weeks after chemo. My hair dresser used a "natural" dye and the color was SO dark. The hair really seemed to suck up the color at that time.
I have to give credit to my husband for how tight those caps were although I was not very happy about it at the time...
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Will the cold cap work on the 2nd chemo round? Here's my story..., I had 7 weeks Taxol and will resume AC in 4 weeks (4/19/12). If I initiate use f the PCC will it help to retain the slight buzz cut/f uzz that I have remaining and inhibit further hair loss??? PLEASE advise. Thanks!
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cathleen, I'm not sure if any of us have an answer for you, but I would call Frank or Geralyn ASAP. Good Luck.
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Thanks, Ang. Ironically, after asking you about the tightness of the caps yesterday I found I had lost some hair near the ears. I can't see the back really I was going to have my daughter take a picture so I could really see if anything was going on there. She said it was hard to tell but she thought all looked good. My husband thought the caps were very tight, I did complain abut chin strap being too tight and that was loosened and so I'm a little annoyed with myself right now.
I was actually lifting the hair with a pik near my ears and I was going to clip it loosely when I saw it. It's not a bald patch but I could see right away it was very thin. After studying it my family agreed but I'm not sure they would have noticed if I had not been so upset pointing at it. When I saw it my eyes filled up and I could feel myself getting all worked up and then I stopped myself and said this is nothing. It's day 11 of my second cycle, so we will be working at making the caps even tighter.
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Hang in there brax~
Even though my caps were super tight I still ended up losing some hair under both ears. It was a small area and no one noticed with my hair down and it grew back quickly...
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Brax, try not to worry about losing a little hair near the ears. I think most of us have lost a little in that area. If your family members have looked and can barely tell, you are probably fine. Since you are well into your second cycle and still have hair, I'd say all is well. I absolutely despise that chin strap. It is so uncomfortable. I usually loosen mine and I haven't had any issues. It sounds like you're doing a great job with the current snugness of the caps. Try not to stress too much.
DeesDaughter, my thoughts and prayers are with you. I hope the SEs and complications pass quickly. Keep us posted.
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I can't decide between Penguin COld Caps and the elasto-gel brand. Any imput would be appreciated.
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