Cold Caps Users Past and Present, to Save Hair
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Well ladies....tomorrow morning is # 2 for me. One of my helpers has to go out of town for work so it is just me and my girlfriend. I am sure it will be fine. We did the last 4 hours at home and last hour of chemo by ourselves last time so I am confident! Will check in later. So far so good. Shedding started on day 18 and has been minimal so far.....happy with everything so far. Everyone have a good evening . Hugs
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Good luck tomorrow, Schoolmom!!!
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OK, so I know this is normal but I'm having my first big shed and it's driving me nuts! I'm 12 days post treatment #3. Combined with the bald spot on top from frostbite, I'm feeling very vulnerable.
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301724 - Poor you! I am sending you a virtual hug () I felt the same way, very vulnerable, when I was at your stage this past summer and watched my hair falling out and had frostbite spots. Try to keep your spirits up, you will keep your hair.
The frostbite spot hair comes back very fast and very thick. I was surprised. Check it and you will probably will feel, or soon will feel, lots of little prickly things which are the new hairs sprouting. I actually thought the spikey things I was feeling with my fingers were just more flakes of frostbitten skin until I looked closely and spotted all the new hairs regrowing there. I was so excited!
They were almost transparent at first, but once those tiny new hairs got to be about half an inch long and had some color the bald spots vanished as the new hair started blending in with the old when I combed across it.
Do you have one more treatment or three? I had four infusions. By the fourth my shedding had slowed and steadied. It hadn't stopped but it had slowed to the point that I could reasonably tell myself that it wasn't so bad. I lost proably 30% of my hair volume which meant I had lost all of my oldest hairs. I still had hair all over my head and was not bald. It was just not as thick as it had been. I knew I could live with that.
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Hi all, hope yous are all doing well. I haven't posted in a while so taught I'd share that at 18wks pfc I finaly got some highlights and all is good. hair starting to thicken up all over. with the colour you can't really see how thin its got, only me. shedding seems to be completley stopped, doh can't remember what pre chemo shedding was. pcc realy work so follow instructions and keep faith.
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Hi all, hope yous are all doing well. I haven't posted in a while so taught I'd share that at 18wks pfc I finaly got some highlights and all is good. hair starting to thicken up all over. with the colour you can't really see how thin its got, only me. shedding seems to be completley stopped, doh can't remember what pre chemo shedding was. pcc realy work so follow instructions and keep faith.
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Thanks, Hortense! That helps:-) I have one more treatment - next week (12/5). Looking forward to new growth!
I've read elsewhere on this thread about folks who used Joan Rivers Fill in Hair Powder to cover scalp areas where hair was thin/non-existent. Is it OK to do this while still getting chemo treatments? Would appreciate hearing others' experiences.
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Finished # 2 today. Lots of shedding during the day but I guess expected considering all the off and on with 14 caps. 5-6 hairs at a time on my shirt, pants...probably lost 75 or so during the day. Half way through. Need to go drink some liquid. Check in later. Luckily I have very thick hair so perhaps it wont be as noticeable. Night
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schoolmom - that many hairs were normal for me each day. Having 5 or 6 hairs trailing down my clothes any time I looked for them all day long during shedding periods was usual. It is upsetting to see so many come out, that's why I encourage people to remember that they have over 100,000 hairs on their head so that they can put losing a bunch each day into context.
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Hortense, Thanks for the encouragement. I tried to attach some pics but the system is not very user friendly or I am not very techo....
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Hi everyone...survived my first chemo session exactly one week ago. All I can say is the first 5 minutes of the first 3 caps were brutal. I was in so much pain despite taking extra strength tylenol an hour before the first cap. Any tips? Perhaps my hair is thinner than I thought.
Anyhow, it turns out that the chemo started closer to 20 minutes into the cold caps because there was problems with the IV. I really am hoping that my hair will be okay. It would be such a shame for all that pain and time to go to waste. Trying to stay positive. Anyone hear of other users that didn't start at the 10 minute mark?
Also, the cap didn't cover about 3 inches from the nape of my neck and up. Eeeeek! I was so bummed but figured that its better for the hair to be lost there than in the front. I tried to contact Geralyn for the extra strips but they are completely out!
Loafer- How is your hair holding up? Hoping it all turns out okay for all of us!
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Finished chemo #2 today. Infusion center is undergoing a remodel and they had us packed in like sardines. A couple of nurses were being rude about us needing more space to do caps, but we gave it right back to them. After all, the reason I switched from Stanford to UCSF was because they are doing a cold caps study and have freezers for me to use and a staff that is supposed to be more accommodating! They actually had the nerve to tell us to go to the ground floor lobby to finish post-chemo icing because the space they have designated for that in the 5th floor infusion center is closed off. And how did they expect my helper to go up and down every 20 minutes to get the cap on my head in time for a 30 minute change? This is definitely not what I had signed up for! Thankfully my best friend has no problem being assertive and told them we would not budge and they gave in and let us stay in my tight little spot for the remainder of the day. Aside from that, icing went well and I am thrilled to be half way done! Was particularly encouraged when my MO saw my hair and said it looked beautiful! I pouted a bit about all the shedding I've been experiencing, and she said ladies who are not doing cold caps are either bald from chemo or have shaved their heads by day 24 (today for me). That really helped put things in perspective, and I will take shedding and thinner hair over no hair any day!
Ndmk-I had quite a bit of shedding last week. Last night I decided I needed more straps, but with no time to sew, I found these at Walmart and tried them today. They are narrower than those supplied by Penguin, but we used them to fit the cap closer to the nape of the neck and they worked just fine. http://www.walmart.com/ip/Velcro-Stretch-Strap-Black-2pk/17190454
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ndmk - I'm so sorry you had such a rough time at the start. Did you take two Tylenol, or just one? I would take two about 20 - 30 minutes before the first cap. The first few minutes are certainly hard as the caps are startlingly cold and it takes a few minutes for the scalp to numb enough that they become bearable. I found that after those first few minutes the rest was handleable.
Not sure exactly what you described timing-wise. The ten minute mark for starting chemo comes after having worn two earlier cold caps for 20 minutes each, which would have cooled your scalp down for a total of 40 minutes. Chemo is then usually started 10 minutes into the third cap, so that in fact the chemo medicine begins to enter the blood stream after the scalp has been cold cap cooled for a total of 50 minutes. If chemo starts a bit later that's fine because the scalp has already been cooled to the correct temperature. The important thing is for the head to have been cooled long enough and according to protocol.
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Has anyone used thes in the Denver area?
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btrflynaia - I believe I have seen women from Denver posting here. Hopefully some will drop by. Meanwhile, go to www.rapunzelproject.com for information about keeping hair during chemo. It's a very reputable site. It's a non-profit dedicated to helping woman keep their hair that also donates freezers to hospitals and breast centers for women to keep their cold caps in during their treatemnts. My hospital in NY has one from them.
Do you know what type of chemo you might have? Cold Caps seem to work very well for T/C (Taxotere/Cytoxane), which I had, and not quite as well for ACT, although there are women on here who have had succeess with them during ACT.
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RE: Total head coverage - My helper put some of Penguin's gel eyebrow bands just below the cold caps to cover scalp areas the caps did not reach. I have a big head and would have lost a wide band of hair below the cold caps if she had not done so.
I highly recommend that people use the brow bands like that, as the cold caps do not always entirely cover every person's head. She said she had used them that way on a number of women, so it seems others were finding the cold caps did not come down quite far enough either.
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I also use headbands that they sent me with the caps. A box of 4 with the 8 caps. It wraps along nape of neck and up over the ears covering the temple hair line area. I then put the 2 black straps over to tighten and the gold across the top of my head and under my chin....as per PCC protocal. I just finished #2 and have started shedding but have a full head of hair. Going to change my avatar pic to yesterdays pics cause I can not figure how to copy pics in messages.
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I actually will find out my oncotype on Thursday. Depending on the score will determine chemo. I don't think it would be ACT. It would most likely be only rounds of chemo. Just trying to do research. I'm hoping that my score is low. Chemo scares the crap out of me! I admit to being vain about my hair. But, also secondary side effects.
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Good luck on your score! Hope you have good news. It's smart of you to do research ahead of time. It's much better to be armed with information so that you can better understand what is being told to you than being completely in the dark. My onco score was 19, on the high side of low or the low side of intermediate depending on who I spoke to, either way the agreement was I needed chemo.
Chemo, if you need it is no fun, but it's also not as bad as I had thought it would be. So much can be done to control nausea that I actually didn't have any afterwards, and that is what I had worried the most about.
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I agree that it has not been as bad as I imagined. The cold caps was a wonderful thing to find! My score was 21 which was low intermediate and 12% chance of recurrance....which was too high for me so I went with the 4 rounds of TC. I am halfway through !!!!
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Just want to offer encouragement to all still going through chemo. There were times I would wash my hair and watch it shed and I would just cry. I wa sso worried I would lose my hair. I stressed a lot through all of it and freaked about my hair. At the end of it all, I still had hair. It was thinner but I had a full head of hair and looked "normal" to others. Please have faith....you will get through this. Cold caps work!!!
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Tlym, Bravo to you and your helper. Telling you to finish post chemo in the lobby was ludicrous! If they are doing a study there, you should tell whomever is in charge about that.
ndmk, I took an Alieve and the caps only hurt for a few minutes.
btrflynaia, Wanting to keep your hair is not so much about vanity, as it is about trying to keep a semblance of normalcy and privacy. Rapunzel's address ends with .org rather than .com.
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FYI ladies-The headband was my idea 3 years ago...Originally the bands were called 'eyebrow bands'. At the time I was helping a woman who had a large head and the caps didn't provide good coverage. I came up with the idea and shared it with Frank-the inventor. In the years I have been helping Penguin cold cap users I have never used the bands for the eyebrows. It's simply not worth the added discomfort. The brows, if lost at all, are usually lost after completing chemo. They also grow back very quickly. A while back they were going to eliminate the bands entirely!!! I spoke with Frank and told him how necessary the bands were in providing the proper coverage for the nape of the neck, which you might notice doesn't have much gel (the cap also heats up faster in that area), and also the temple area where there are gaps. I use the bands with every woman I help, not only those with a large head. Thankfully the bands (whatever they choose to call them) are still available because they are very necessary if you don't want to lose hair at the temples and nape of the neck.
Tylm-Your experience reminded me of a simliar funny story. A woman I was helping was at a very small, busy oncology clinic. It was clear the staff didn't want to accomodate us. They said we would have to keep the coolers in the waiting room. We began the cold cap process there-in the waiting room. Luckily, the woman I was helping wasn't shy about being seen with a cap on her head. We got lots of looks, and questions about what we were doing. We were both more than happy to share information about the cold caps with others who were curious. I don't think the staff liked all the attention we were getting-kinda backfired on them.They seemed much more accomodating the next time we were there.
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We began the cold cap process there-in the waiting room. Luckily, the woman I was helping wasn't shy about being seen with a cap on her head. We got lots of looks, and questions about what we were doing. We were both more than happy to share information about the cold caps with others who were curious. I don't think the staff liked all the attention we were getting-kinda backfired on them.They seemed much more accomodating the next time we were there.
This was my exact experience. We started the caps in the waiting room -- figured that having them on longer than required was always going to be OK, but having them on shorter than required was going to be a big problem. Lo and behold were always ushered back within 10 minutes.
At my third chemo, a bald woman in the waiting room asked me what I was doing. When I explained the system to her she started crying and said "I wish I had been given that choice." I felt horrible for her.
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"I wish I had been given that choice."
I have heard this so often, and it's always saddening. I hope to goodness someone on a heavily viewed TV show would cover cold caps so that they would get the wide exposure they deserve. Anyone have any connections?
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Hi Ladies! I have tried reading through many posts, but there is so much information going on it is hard to keep track. So, I apologize if my questions are repetitive to what you have already responded to. I hadn't considered the cold caps until reading through some of the posts here. I would really like to hear a recap and tips from those of you that have done it. Do you feel it was worthwhile? Did it take a lot of effort and commitment? Or, was it a simple process? Anyone use the cold caps but still experience full hair loss? Please also let me know what cocktail you are on, as I know that plays a big part into it all.
Thanks, and many good thoughts for you all!
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I've met some very influential people through helping with the caps. In the beginning most are extremely excited with saving their hair. But, is often the case after chemotherapy is complete, they are just glad it is over and done with... They don't want to think about cold caps anymore. Ultimately poor marketing by the Penguin Co. itself is to blame. I met with a woman the other night to give instruction to her and the 3 helpers who were going to be changing her caps. We all sat to watch the Penguin video on how to fit the cap, which is now 3 years old. Through years of experience I have developed a better method of fitting the caps, which I shared with them afterward. I'm not sure why, but the caps that were sent to this woman were white, they seemed smaller and contained less gel. I hope they are as effective as the ones that have been in production for the last few years.
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makingway- i agree that the headbands are very necessary. I am just so bummed that none were available when I started chemo. I'm hoping they can up the production very soon so that more of us can use it!
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ndmk-Have you called and asked for bands? I was told they can produce many in 1 day. They should never get to the point that they run out...
LadyGrey-It was fun seeing the staff do a turn around. But, it was also sad because what they wanted was to keep the caps a secret.
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skimommi - I just used them this summer and they were absolutely worthwhile. I highly recommend them. I had four treatments of Taxotere Cytoxan three weeks apart and I kept most of my hair even though I shed a lot. Being able to keep my hair has made dealing with breast cancer, chemo and radiation so much easier. When I see myself in a mirror I see myself, not some sick bald version of me. As a result, I have never felt the need to cry or gotten depressed. Believe me, that's powerful medicine.
From everything I have read on here, and heard at my breast center in NYC which has had upward of forty women use them, T/C users have very good success keeping their hair if they use Cold Caps and follow the protocol strictly. From what I have heard, ACT users may not be as successful, but there have been women on here who have used them with ACT and been able to keep their hair.
I was fortunate to be able to hire an experienced helper recommended by my breast center and she made the process easy for me as she did everything and knew what needed to be done. Others have had their husbands, friends or relatives help them and it seemed to work well. My husband just didn't want to do it. He prefered an expert handle it instead.
A few women have arranged to help each other, first one goes through chemo then the other, which I think is lovely. Some very organized people practice ahead of time so that they and their helpers know what needs to be done and so they can learn how to fit and change the caps efficiently to be sure the timing works smoothly.
Cold Cap therapy requires gathering the right equiptment (Penguin gives an exact list once the rental is arranged) and finding someone or two people willing to do the job carefully each treatment day. They must follow the timing and temerature protocol exactly in order for it to be successful. Basically the patient's scalp gets cooled for 50 minutes before the chemo is started, and continues to be cooled all through whatever chemos may be given, and for four hours afterwards. It's a full day's work. But, it is so very worth it for the patient if she can keep her hair!
The caps are extremely cold and not fun to wear, but those of us who have used them were willing to put up with the discomfort on the days of our treatments in order to keep our hair. We dressed warmly in zillions of layers and used an electric blanket to wrap up into to keep ourselves warm. Some of us also iced our finger nails and toes nails during the Taxotere infusion to protect them from damage - something I also highly recommend.
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makingway- It has been 2 weeks since I first ask Geralyn (I have already asked her an additional 2x in the interim) about the straps and she says its still being produced. Such a bummer that I couldn't get those straps for my first chemo last week. I'll still continue to hound her for it. I don't know if there's a production issue?
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