Cold Caps Users Past and Present, to Save Hair
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I have a question on what brands of vegetable or natural colors people have found effective after chemo. Geralynn said I can use this 3 months out, but I want to use something people have had good experience with. I still have 2 chemo treatments to go, but want to be prepared.
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I used a spray in conditioner, too, because of massive tangles that otherwise caused even more shedding when I tried to comb them out. After I started using this leave-in conditioner, my hair started looking markedly better - no longer dry and frizzy at the ends. This is the product I used:
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I also wanted to share that I just recently had my first hi-lites post chemo! I am 6 months PFC now. Since bleach is so much more damaging than color, I waited the full amount recommended by PCC. My stylist recommended we use the gentlest of the bleach possible, just to be safe (it lifted it slowly - had to sit there quite a while). My hair is still darker than I'm used to (I was a blond pre-cancer), BUT...I have a few hi-lites, and it feels great! My hair did very well with it, no increase in shedding. I'm oh so happy with my hair. I have spots behind my ears near the nape of the neck where I obviously didn't get it cold enough - but you can only see that regrowth when I pull the hair up. It's all curly there, the rest of my hair that I retained is poker straight as it has always been. The curls are a curiousity for me!
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Hi, I was wondering whether the shedding continues at the same pace for the whole time PFC until it stops, or if it slows down as you get closer to that point? I ask b/c I have lost a fair amount of hair already, though I still have a ton left b/c my hair is so thick to start with. So it looks fine. I'm just nervous if it still sheds a lot for 3 more months. Actually I haven't noticed it too much lately -- maybe it's already slowing down? Wishful thinking, probably. No regrowth yet anywhere else and my eyebrows seem to be worsening. Ok thanks!
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cypher - I have seen people post everything from they did not shed at all PFC, to they shed for a few weeks after it, or they shed as long as I did, 16 weeks. I have never seen anyone say they went longer than that. It seems to be different for each woman.
My shedding had slowed down a week or so before my last chemo and stayed steady at that slower pace for three weeks following it when suddenly it increased. I continued shedding at a great rate for about ten more weeks when it again slowed down to a steady pace for a while, then stopped completely at 16 weeks after my last chemo. It has not shed since other than the normal few hairs.
I did not take any vitamins during chemo as my doctor said not to, but I did start taking Biotin, Iron and Silica as soon as I had clearance. I know those take time to start helping, but they are supposed to help strengthen hair strands.
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Disclaimer, this has nothing to do with the PCC but I don't know where else to post as I've only posted on this thread. I'm just so devastated I wanted "someone" to talk too. I just found out that my husband of 2 years cheated on me (no sex, just made out) with some girl he met at a bar. He finally confessed after I pressed him on it for coming home at 5am smelling of perfume. I'm so sad and depressed, he was supposed to be my pillar through all of this. I moved out and am staying at my moms. He's begging me for forgiveness and wanting to go to counseling but I don't think I can get over this. He keeps saying how he's having a hard time getting over the fact that we can't start a family for another 5 years. He's scared he's going to be alone when he's 50, he's scared I'm going to die. I can't change any of that. How does anyone move forward from something like this? How can someone do this to their partner when they need them the most? Sorry to vent ladies, I just didn't know what other board to turn to. It seems that most women here have such supportive husbands through this and I wish that could have been me. I feel like I'm on someone's shit list and I don't know how much more I can take. Thanks for being an ear...
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Somewhere you will find the strength. My longtime boyfriend moved out of state before I knew about all of this. I decided I was not going to tell him because I wanted him to decide to come back or not on his own, not out of guilt. There have been many nights I have cried myself to sleep with no one to talk to, wondering if I was making the right decision in not telling him. I find strength from friends , family and inside.
You have to decide whether it is worth it to save your marriage but I would say counseling is a must. C is scary not only for us but for those around us. Not saying what happened is right, just saying think it through.
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Good morning everyone,
I had my first TC treatment yesterday and used the cold caps. Wow it really made treatment fly by! The hardest part was getting home. We had to stop in a parking lot and change them I was also so nauseous on the car ride home. I was seriously brought to tears when my helpers put the 1st one on. We practiced with the ones out of the freezer, but it wasn't near as Cold as the dry ice. It brought tears to my eyes. I pray this works. Also, I know that 3 days after chemo I'm allowed to wash my hair, but if I get sweaty from excise can I rinse it with cold water? One other thing, I have a sore on the front top of my hair is this anything to be concerned about? Thank you guys so much!!
Shawna0 -
((((((ndmk))))))) Big hugs to you. I can only imagine the sense of betrayal you are feeling. I think you did the right thing moving out and giving yourself some space and time to think about this. I highly agree with the recommendation for counseling. Perhaps individual counseling first, and then if you decide you want to try to work it out, you could consider the couples counseling. Trying to build back trust after something like this has to be incredibly challenging, and it is not something I would want to tackle on my own...let alone during a crisis time like facing cancer. I'm so sorry this has happened to you on top of everything else.
You indeed will find a way through this! 0 -
Hi Everybody!
I used the cold caps this past summer. I had DD AC (AC x 4 every two weeks) and 12 weekly taxol. It is my understanding that under this regimen, there is a far lower success rate. Unfortunately, they did not work for me, but I also wasn't able to keep the caps on for the full time after chemo due to extreme nausea. I did manage to complete the full time the first session and I still had a complete head of hair until about week four when it slowly started shedding. I stopped using them after the fourth AC as I had lost more than half my hair at that point and weekly taxol is not usually as hard on the hair. In fact, my hair slowly started growing back on the bald patches during that time. It wasn't until about two months after chemo, maybe a bit less, that I had full coverage though.
The cold caps are expensive and even though they didn't work for me, I am happy I did them for two reasons. Pyschologically, it helped to have some hope that I might not lose all my hair. When I made the decision to take the caps off early, it felt like I still had the control. Also, and this is entirely hypothetical and only based on my experience, but I feel that my hair is growing back faster than it would have without the caps. I am currently three months past chemo and I have a full head of hair that ranges between a half inch and an inch and half long. I plan to get extensions soon at a place that specializes in doing this on very short hair after chemo. I have spoken to a girl who did this and she was very pleased with the results. If you google "hair extensions after chemo" you will see her story. Once I am done, I will post here to let anybody who is interested know how it worked out.
Anyways, if anybody needs any tips or has any questions, don't hesitate to ask!
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(((ndmk))). Wish I could be there to hug you in person! So glad you have your family to help get you through this crisis. I know it's the last thing you want to be dealing with right now, but I agree that counseling is the first step toward repairing your relationship. Praying you find the strength to make the best decisions for YOU!
I had a lot of shedding after tx #1 and many of you ladies were so kind to respond with words of support when I was freaking out. I am happy to report that I am day 8 after tx #2 and the shedding has slowed down significantly. I am kind of neurotic about saving the hair that falls after washing and combing and have collected almost a quart size bag full, but hair remaining still looks nice and full. I was especially encouraged when MO told me non cold caps users would be bald by this point. That helped put things in perspective and my satisfaction level went from about 50% to 100% in no time!
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Hi SLB11 - So glad you've had your first treatment and that the cold caps worked well! I did get a sore place on the top of my head with the first treatment. Turned out to be frostbite. That place eventually flaked off - and is still flaking (sone 9 weeks later!) - taking the hair with it. Fortunately, I can comb over it. On subsequent sessions I used gauze strips to protect the thin areas. The good news is that new hair is starting to grow already! You may be lucky and it may just clear up but if not, treat it gently.
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(((ndmk))) - Hugs to you!
You have every right to vent. What a horrible thing to have happened to you. I am so sorry. It's so wrong. You deserve to have a husband and friend to lean on and trust when you need him the most. You were absolutely right to move out to your mother's. He needs to understand what he did was both awful and completely unacceptable. It was no small thing to be brushed aside with an apology and a string of self-serving explainations.
Clearly he could do with some counseling to grasp how immature, dishonest, irresponsible and hurtful it was of him to be hanging out in a bar until 5 am when his wife was at home battling cancer. It was not a cool or OK thing for a decent, honorable man to do - and when he married you that is what he basically swore he would be.
Being afraid to lose you is normal, most of our partners are afraid they might lose us. Feeling disappointed that having much wanted kids might have to be delayed five years is understandable, but under the circumstances should not be a big issue. What's more important? Saving your life, or having kids right away? Even being very afraid to be left alone at 50 is understandable - as long as it is in the context of his being very sad if he lost you, not just that he is afraid to be alone. That would simply be extreme selfishness.
Feeling so sorry for himself because of these things that he felt it was all right to stay out until the wee hours drinking, and as a result got tempted to make out with another woman - and gave in to that temptation - is no excuse for his behavior, not when his wife is so sick at home. It shows a serious character weakness.
Give yourself some time to cool off, think about and digest what happened to see how you feel about it before taking any serious steps. Consider every aspect from emotional to financial, and who has the primary insurance that covers you, before making any decisions beyond staying at your mother's a while. You have to do whatever is necessary to try to lower your stress level right now. You have enough else going on healthwise.
My brother cheated on his wife years ago with a jerk of a woman who knew he was married - so she was just as guilty as he was. It was disgusting and caused his wife a lot of pain. She took the kids and went to her mother's too. He tried to talk his way out of it, sent flowers, etc, but it wasn't until he realized she wasn't to be sweet talked and wasn't a fool that he began to seriously apologize. Eventually after many months apart and some counseling the two of them felt it was worth working through it, mostly for the sake of the kids. They divorced after the kids got out of high school.
I wish you much luck and the wisdom to do what is right for you.
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Ndmk, that SUCKS. Last thing you need right now is a bunch of emotional upheaval. I don’t think it’s a great time to think about the long term implications of this though.
Shawna – I would be surprised if you got sweaty from exercise between now and when you can wash your hair. Might feel a little fatigued and not up to your usual workout. It sounds like you might have a touch of frostbite.
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Do you guys think my hair will fall out where it got frost bitten? It's right in the front. I think it's from the back strap wrapping around to the front. I am such an emotional mess from all the side effects I've been having. Has anyone decided to end chemo early?
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SLB11 - Please don't end your chemo treatments early, they are too essential for your health. Chemo is rough, but it does end. It seemed as if it would last forever when I in the midst of it, but now, five months later it seems so long ago. You will make it through, SE do end and you will go on to have a life again. Try to think positively.
I had several frostbite spots and as they healed the hair fell out which was upsetting at the time. They grew back very quickly though. I combed over them until they filled in.
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SLB11 - Hang in there. After you get past the week or so of SE, you have a normalcy for a week or 2. In the long term of it, you dont want it to come back because you did not give it all that you have. You can do this.
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Hi all - Just a note to let you know that I am officially PFC!!! I'm finishing up my last 2 hours of cold caps and will look forward to packing them up!
SLBII - hang in there - I have frostbite on the top front of my head - I can comb over it and I know it will be fine. It is definitely worth it. My oncologist and the staff at my cancer center are all so excited to see the results. I'm the first one there to use cold caps.
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Congratulations 301724!!!! I will be following you on Friday, with my last of 12 weekly taxol and herceptin. Before I started I was so worried about the 12 possibilities for error in using the cold caps, not to mention having to call on my friends for help weekly for 12 weeks. But it's gone well (a few hiccups along the way which I will write about when I have more time) and my friends have been fantastic. My shedding has been very minimal and I hope it continues that way!
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Congratulations to both of you! Well done!
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Thanks for all the support everyone! I am trying to remain positive. It's so hard to deal with the day to day matters of being married with a 4,3, and 2 year old, the SE of the chemo, and stressing if the caps were done correctly. Mentally I just don't know what to do anymore.
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SLB11, I cannot imagine going through all of this while taking care of a 4, 3, and 2 year old. Call on all of your friends and family to help you. Everyone wants to know how they can help you, so please use them. You will get through this.
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SLB11, you don't say (or I don't recall!) what your SEs are, but there are lots of ways the docs can jimmy with meds to give you greater relief of nausea or whatever. This is just going to be a really difficult and unpleasant period of your life, but it will be over before you know it.
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Hello to all you strong, beautiful women!
This board is great and supplies a plethora of information! Thank you to all the cold cap users for posting about your experiences and tips! I am 29 years old and start my chemo next week. Just received my cold caps yesterday and had to empty half our freezer to get them to fit.
I tried searching the board but didn't see much in regards to taking something for the pain. I had a fellow cap user tell me she had taken a vicadin before her first treatment, but that it had caused her extreme nausea, so she stuck to Adavan thereafter (spelling?) Any tips from anyone out there on that side of it? I'm so nervous!!! Have both my husband and a friend coming with me to help me with the caps. We plan on practicing this weekend. Any insight would be greatly appreciated! 0 -
I found I didn't need anything for pain, but many of the women on here just took 2 Tylenol before starting the caps. Of course be sure to clear it with your onc!
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I have been taking two Aleve and I'm not sure I even need it. The cold doesn't bother me so much, and I have a high pain tolerance in general.
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I took ativan right before I left the house for chemo. It helped me chill (nice choice of words hu???). They also put ativan and benedryl in my premeds before chemo. Good luck! You will get through this!!
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I want to echo what other ladies said: chemo sucks but you can do it!! I am two months out and remember clearly thinking 'there is no way I can do this'. I am an athlete-have run marathons/triathlons...nothing compares to the mental/physical/emotional stress of chemo. Don't quit! You can do this! Having your hair (even if ugly and thin:) will help your spirit!
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SLB11
I didn't do Chemo in 2010 when I had a 2 cm tumor with an ONCO score of 21. I was afraid of how sick it would make me. I had a recurrence this past March. It was small (4 mm's) but I followed the advise of my Oncologist this time and signed up for AC/T and had my ovaries removed prior to Chemo. You don't want any regrets in the future or to leave three little ones without a Mom. Chemo is tough but the first one is the worst. Once you find out what bothered you the most the Dr's can give you something to make you feel better for most of the SE's. Trust me - you don't want any regrets.
For all of you PFC - when did you highlight & go back to your normal routine of haircare??? I am 20 weeks out and want to color!!! I have resumed washing daily but still use cool water.
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Dancingthruit - I took 2 tylenol 30 minutes before the first cap. Completely doable. Amazingly enough, this last time I didn't even need all the warm blankets - and that was with icing fingers and toes, and chewing ice!
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