Cold Caps Users Past and Present, to Save Hair
Comments
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I don't even know if private rooms would be an option for me. I had one of my chemos the week of Christmas when my center was shut down for 3 of the 5 business days and it was more crowded than the other chemo (I have only had 2 so far.) The time it was crowded, I couldn't have both my helpers with me since there weren't enough open chairs available; I am sure we put on quite a show.
I was worried that I might get a negative reaction from others in the room, especially from someone dealing with me and my little circus that is sitting there trying to relax and is hairless because they either didn't know of this option or didn't have the resources to try it. To my knowledge, everyone around has been quite interested and supportive. They ask questions and most leave the room and stop by wishing me luck,... they seem to be curious to see if it is going to work or not. They also seem to want to steal my hubby after watching him run around changing my caps and tending to me the whole time I am there.
I find this last part ironic because for both of the chemos I have done so far, there as been at least once or twice I was ready to kill him so their compliments to him so must either be God's way of reminding me that he's not perfect but I'm lucky he's mine or God's way of showing him at least SOMEONE appreciates him! 
The nurses that run the infusion room seem to to be more supportive than I was anticipating based on the initial response by my MO and his PA to hearing about me trying the cold caps.
That being said, my next chemo is tomorrow morning. I guess I will see if how crowded the room is for a normal week. Hopefully, chemo is still a go. I have labs in a bit and I am struggling with a cold. Fingers crossed that I get to have it or at the very least wish me luck that if it is postponed I get the word before I go buy a mountain of dry ice.
~Stephanie~
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deepcreek, I hope one of our AC/T chemo cold cappers comes along to tell you about their experiences, but in the meantime if you have some time I would recommend reading as much as you can of this thread. I will say that your biweekly regimen of AC followed by T is probably one of the hardest on hair, and thus less successful with cold caps than other regimens. But there are successes out there, and I hope that you will be one of them!
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round 3 is tomorrow. Looking forward to tomorrow afternoon.... Being able to say I am half way there!
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Warrior - sorry for the late reply... I had not completely stopped shedding when I colored but it had slowed significantly. Also, my color was completely organic so I wasn't too concerned about it. I just so anxious to not look so ragged.
I hope you are doing well after your infusion this go 'round. Thinking about you and Texas Day - Tex... you're half way there!!!!!
Sending everyone good vibes,
Kay
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Just completed my LAST and final TC treatment!!
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Okay Ladies - I have a confession to make. When I first saw this thread and started reading I contacted the BCO moderators to ask if this was some sort of scam. I suspected that many of you were plants from the PCC company and were conspiring to swindle my money and leave me with a frozen bald head. I have now read all 338 pages of posts (I'm a slow reader) and followed your journeys from your first inquisitive posts to your shedding panics to your satisfied success. I have used every piece of advice you've given to try and keep my hair and ward off as much of the other SEs as possible. If you noticed me looking at you in funny ways over the past few weeks, please forgive me. It is too soon to know if this will work for me but I do hope my outcome is like most here.
LisaM - Congratulations! How are you doing?
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Lisa, congratulations. How did your hair hold up? Ship those caps back, reclaim your freezer and do something nice for yourself.
Warrior, I think most of us were pretty skeptical in the beginning. I remember an "aha" moment during my treatment. Sometime during chemo I was in the grocery store. There was a woman there with a bald head who was obviously a cancer patient. I'm sure I was rudely staring but not for the reason she thought. I stopped in my tracks, teared up, and realized the caps were working. No one in that store would ever guess that I was also a cancer patient. It was a pretty powerful feeling. There's no reason to think the caps won't work for you. How are you feeling?
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Lisa - congrats!!!
Warrior - I hear ya! I am impressed you read this entire thread. I never did that! I was fortunate that someone from a completely different thread (whose story I had been following for several months about chemo, etc.) messaged me about the caps when she learned I would be doing chemo. If not for that wonderful person, I would not have known about the caps.
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Just a strong warning to you all...If anyone is Triple Negative it is strongly recommended that cold caps are NOT used as this type of cancer tends to spread to the brain and other organs. The cold caps can interference with the chemo ability to penetrate the tissue enough to be effective. Please consult with your onc. If you are triple neg before considering this option.
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Holly- my initial biopsy results came back as ER+ at 44% but my Oncotype results said my cancer was triple negative. The thoughts are that at least some of my cancer is triple negative. My oncologist and my second opinion oncologist at Emory were both totally fine with me using the caps. The oncologist at Emory is widely recognized for her research on triple negative breast cancers. The caps do prevent the chemo drugs from completely affecting the scalp, but not the brain. There is a chance that all breast cancers can spread to the brain or other organs. The chance of scalp mets is extremely low. These caps have been widely used in other countries for over 15 years and the studies don't show higher rates of recurrences in patients who use the caps. You should really check the facts before you make a post like that.
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Daye, well said. Of course everyone should check with their oncologist before using cold caps.
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Daye, very well said indeed. Brain mets occurs in the brain, not on the scalp. Blood supply to the brain does not come through the scalp. It comes up internally via the carotid and vertebral arteries.
Holly you definitely should check your facts before giving others advice.
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Congrats Lisa - what a huge relief to have this behind you.
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JC - I thought for certain you were a plant. I figured "they" created a fake identity of a person in my neck of the woods to give me that false sense of comfort.
Dancetrance - I was not able to read this entire thing until after I started with the caps. There are a LOT of posts! This makes it highly unlikely that you all conspired to trick me and took all the time and effort over a couple of years to plan this out with the hope one day I would show up.
I knew this stupid cancer would push me over the mental health edge. LOL
Daye - Two of my path reports showed me as highly ER+ (70% & 90%) and my Oncotype report showed ER - . Needless to say I freaked out. Then it was explained to me that the tests are run differently but the good news is that the research on the effectiveness of Tamoxifen was conducted with the same measures as my initial 2 pathology reports.
I made it very clear to my MO that my #1 objective is to be healthy and disease free. Cosmetics is a far 2nd...or 3rd or somewhere down the list. I told him that if he had any concerns about the caps interfering with treatment I would not use them. I actually stated this to several MOs. The replies were all the same. It's a labor intensive pain in the butt but if you want to do it go right ahead.
4 days out from 1st infusion and I am tired with achy muscles and my face is breaking out. I'm continuing to exercise and I have tickets to the theater with my husband tonight. I think I'll be fine. Finally a chance to have some fun!
Enjoy the weekend everybody!
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Warrior, I was also very skeptical, especially since the person who told me about the caps was a PCC distributor. I was complaining about having to loose my hair for a second time, and no matter how much people trivialized it (but you looked GREAT bald, etc) I knew it would be years before I looked the same. But this person was a survivor, and she had the same reconstructive surgery I did and participated in the Nola in September thread. I am very thankful she let me know this option was available and she didn't push it, the product sells itself. I'm 12 weeks PFC and my hair looks great. I may never return to my former hair care regimen.
Holly, it's clear you are not comfortable with this option and that's OK. I'm not going to try to convince you otherwise. The truth about cancer is that we don't know what the future holds. Each one of us has to take what we do know, based on what our doctor tells us, studies and statistics of others with similar diagnosis, stories from friends and connections through communities like this, and what feels right in out gut, and we have to decide what makes sense for us. If there is a 1% chance of something happening but it happens to you, it's 100% to you. You have to ask yourself is the risk worth the reward, and for you it isn't. For me it was. Neither is right or wrong it's just a personal decision.
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Congrats on finishing Lisa! That's great!
Warrior.....yes, you figured me out..my entire blog is a plant!
I think many of us thought "if these are so great and really work - why don't the MO's tell patients about it???" After diving into it we see that most people including the medical community are misinformed and not educated about cold caps. Holly if you are uncomfortable with the caps, that is what is right for you but it's really unfortunate that you chose to post here were obviously most of us are using caps. Like anything else in this process, the caps are a personal decision and each person must weigh out what is the right thing for them after consulting their doctors. There are a number of studies available about cold caps and if you google you will find them and that may provide you with more information. Maybe you didn't mean your post to come off negative and perhaps you thought you were offering valuable information to others, but here most of us have already given serious consideration to using the caps or are using them. We are here to support each other....not bring up negative things. I hope you understand you are welcome to participate in the posts here but please don't make anyone feel bad about making the choice to use the caps. I hope my post doesn't come off mean... I don't mean it too. I am saying this in the kindest way. This is just a place where we can come to get support about the caps and talk with others that have used them or are using them when most people don't really understand all of it. If you have any questions about the caps, we are happy to share information about our experiences and support any fellow BC sister.
It's hard to understand exactly what someone means when the post things because often the tone of the message is lost online. 0 -
Thank you so much for this info. I have spent the last few weeks reading this board and preparing for my first TCH treatment with cold caps on 1/27/14. I am feeling scared, anxious, thankful, and probably many other emotions that only women in this "club" can understand.
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atlbc, I'm glad you found us. Using cold caps during chemo adds a whole other level of anxiety to what is already a stressful and emotional time, but the results are worth it. The support, encouragement and advice from the women here was invaluable during my cold cap days. Please keep posting and we'll help you through it.
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Warrior, you caught me. I'm secretly making millions working for the funny little man with the British accent : ) Actually, if I really was working for PCC, I'd do a much better job promoting awareness of cold caps than the company currently does. In real life, I'm just a boring old CPA who first heard about cold caps when I stumbled onto Maria's blog during a late night, can't sleep, internet search. I did my homework but remained skeptical until my surgeon put me in touch with a patient of his who had successfully used the caps. It really does take a leap of faith.
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JC254
Thank you for the encouragement. It looks like you did your treatment at Penn. Were they receptive of your cold caps? How was the drive home?
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atlbc - Yea! You're right behind me as I just had my first TC infusion. It's too soon to know how I will fair but you can be reassured I will post a blow-by-blow of every hair I shed. I had my surgery at Penn but I'm staying local for chemo as I don't want to change caps on 95. I did speak with the folks at Penn about it and they do have women who use them from time to time. They seem accommodating and have more private rooms than most places. BTW - I purchased the Brian Joseph's brow and lash conditioner at their Faith and Hope shop. I was told to use it 2xs per day starting the week before infusion #1. Also, if you haven't done so, order your caps now. My delivery was delayed 3 days in Ohio when there was some sort of weather emergency. You want to allow time for your helpers to practice in advance.
MDG - Not only did you create a fake blog to lure me in but you also managed to get 93,887 hits on your blog to make it appear credible!
JC - I did figure that if the caps worked they would be widely used and publicized. While they've received attention on national programs, I probably never paid attention until now. After one infusion, I have found the caps to be a distraction to all the other side effects that I may experience.
Marsha, MDG & Everyone who has posted before and after photos - Thank you! Your blogs / photos really helped to sell me as they are genuine. The photos showed that there was thinning but that your hair survived. It wasn't some late night infomercial where I was led to believe my hair would be better than ever. Nope. It will thin, frizz, dry out and if I am lucky, survive well enough to be able to be repaired when this mess is over. If I have a relatively decent outcome I will post my before and afters too.
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atlbc, I wouldn't describe my chemo nurses as receptive. Tolerant would be a better description although they did warm up towards the end. I'll send you a private message since it sounds like you might be local.
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Hi all,
Sorry I did it write sooner but had a rough day yesterday. Did not even think I would make it to get my nuelasta shot but I pushed through and did. Probably the worst day I had but today I am so much better. Throughout all of my treatments I have been great but I guess my body saved the best for last.
My hair is awesome! I had barely any shedding and I am so happy with the results. I agree that I wish I could tell everyone about them. So many people look at me strangely when I have to tell them I am going through chemo and look directly at my hair. It is nice when you don't fit the "mold".
Wishing everyone starting or going through this roller coaster in your life best wishes! The PCC's really do work!
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Lisa congratulations for making it through. Remember to keep babying your hair. I think I shed for 6 weeks after my last chemo, probably more than during chemo!!!! Now one year later the frizz is gone but the curls are still here. I trim sparingly every 4-6 weeks and have maintained just below shoulder length. Pre chemo it was 5-6 inches down my back so some small adjustments. Everyone is different so just hang in there!
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Hello there! Great to see so many success stories here in recent weeks. I just wanted to give an update. I'm almost 6 weeks out from the last chemo. I've noticed that my shedding has started to significantly reduce in the last week. It's still there but nothing like it was during chemo. I decided to henna my hair two days ago. I used a lot of water to mix the henna and made it very watery. I also only left it on for 20 minutes, which is a very small amount of time for henna (people usually leave it on for hours). I just wanted to test it out to see if it caused any further problems with shedding. It turns out that it worked really well. I got a little boost of color to my hair and it left my hair shiny and there was no issue with increased shedding. This may be a good option for those who are not sure about using a chemical dye but want to brighten up the color. I'll post pictures of my hair as soon as I can. Have a great week and good luck to those trying the caps for the first time.
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I think most of us couldn't believe what we were reading when we first read about Cold Cap therapy saving hair during chemo. I'd accidentally stumbled across a mention of them in another thread and they seemed too good to be true. I had my doubts about a few posts on the cold caps threads also, but decided that all the others rang true.
I just had a few days to look into getting cold caps, as I was scheduled to begin chemo within three days of hearing about them. After reading all that I could find over a weekend, I decided that it was worth a try. I made a leap of faith and cancelled my scheduled chemo appointment, switched doctors and hospitals in order to be able to use cold caps because mine wouldn't allow them at the time (it does now), got the caps in an almighty hurry - Thank you Geralyn!, bought an electric blanket and other supplies and began chemo with the caps a week later.
It wasn't until more than three weeks after my first infusion that I allowed myself to hope that the caps were working, but they did work. I shed after each infusion, and kept shedding lightly for 16 nerve wracking weeks afterwards. I thinned out uniformly all over my head, but probably kept 65% of my volume, nobody other than me and my immediate family really noticed. My hair kept growing throughout chemo, as was proven by my long natural colored roots, and the hair I shed started regrowing not long after chemo ended. I think the earliest shed hairs started first, followed by the ones I lost over the long period I shed.
I was able to keep my hair and feel like myself throughout treatment which was wonderful. Looking normal - well, as normal as one can look while being poisoned - made it easy to stay positive and never feel down, which I believe was very strong medicine.
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I am now 3 chemos in and at the point where the hair I am losing is from chemo #2 .So, the way someone like me looks at this is I have 3 more chemos but still 4 more treatments from a hair-loss stand-point if you get my meaning.
I have some bald spots and unfortunately some are closer to my crown than I would like. I am trying different hair fiber products to try to disguise this but regardless, I in no way look like a cancer patient so I am very happy with the results. By my calcs, I should have been bald by Christmas Day.
What does worry me is this word "shedding"? To me, "shedding" is alot of of hair on your jacket. When I comb my hair in the mornings, I have a lot, and I mean, A LOT of loss, no clumps. Not sure if what you guys are calling shedding is what I am doing or not. It just scares the hell out of me that I will get 4 weeks PFC and have nothing left. Maybe I will post a pic of what my comb looks like after a morning brush to get you guys thoughts...
I will tell you something that is different that I expected. I expected chemo to make my hair to fall out. What has surprised me is the breakage. The chemo has really dried my hair out and I I have been surprised to see much loss I have that has been related to hair damage vs. follicle damage. Curious if this has been any of your experiences as well? They don't want us using conditioners but is there something else that might help with this. The hair that I pull out of my comb look so dark and dead; I am blonde BTW.
I know I probably always sound like I need to be talked off the ledge when I post here. I am sorry for that, but there is not any other place I could go where ANYBODY would understand this feeling. I don't think I will ever stop getting nervous about all this until way, WAY down the road.
Have a great week ladies! So glad I found this site.
~Steph
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Steph - It is too soon for me to comment. I'm still collecting little hairs in baggies. However, every success story is the same. I read every one. There are a few who did not succeed and I know they were disappointed. We start cautiously optimistic, begin to shed, panic and expect it will all shed, and somehow come through it. I had a visit with my PS today and stopped to look at head coverings in their cancer supply shop. I held off on buying one. I read very few posts from people who stated they were entirely confident the whole time. In my head I keep thinking,,,What if...What if the caps didn't make good contact....What about the timing being off....What if we didn't knead them well enough....What if. It seems the critical period is around day 21 and you're well past day 21. I have another 2 weeks to go and I'll continue to save my hair in baggies like some sort of freak.
GildedCage - I'm wearing my little braid to the side.
I wish I looked good as a red head. I'll look for the colormark in a few days.Hortense - I think you prepared for the caps in record time. It's a lot to get everything prepared. Cutting moleskin shaped to my forehead was a major achievement. LOL
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Steph- I have been using conditioner on my hair but just being careful to not put it near my scalp. I also spray on Kenra Daily Provisions after I wash my hair. I have definitely noticed more breakage than normal, so that's not just you! My last chemo is this Friday so I still have a ways to go until I am done shedding, so I can't really comment on everything you said. I'm not sure what you mean when you say a lot of loss in the mornings, but just know that you started off with a lot of hair. I think the average person has 100,000 hairs on her head so I am optimistic that you will be just fine!
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I also used a spray in conditioner. The brand I used was Joico Liquid K-pak Reconstructor. It really helped my hair and reduced breakage.
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