Cold Caps Users Past and Present, to Save Hair
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Drim, Good luck with #2 tomorrow I'll be thinking of you. I forgot to tell you that I met with my Radiology Onc at SLR and he is an absolute doll! SO informative, thorough and bright and SO entertaining and lovely as well. A real treat. I know you are considering SLR for rads. I would definitely consider a consult. He books up, so do it early.
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DesignerMom - thanks for the well wishes and thanks so much for the heads up. I will make an appt. ASAP. I really liked the rad. onc. at BI but if you like this guy it would be so much better for me at SLR.
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Yea!!!! Frank called me today and we spoke for a hour and a half.. What a great guy!!! as GAgirl01 said,he told me he has a 90% success rate, he said i would lose 25% of my hair.I'm good with that!! My second opinion is tomorrow and appt with my PS on Wednesday. (oh yea!!) lol Frank invited me to a function about the caps in S.F. (i live only two hours away) on fathers day. Ill be excited to meet him...I'M still thinking ACx4 then T x 12 is a lot. im needing that second opinion, i have more questions, a number of them you girls have enlighten me to ask about. I thank you for that!!
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Hi All, Just a quick update. I am Day #4 post TC#2 and still have a full head of hair! I have had some shedding, but it's only noticeable to me. I feel soooo much better go through this with my hair! Hope you are all having good days!
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GolferGirl, YEA!!!!! im so ectited for you well my second opinion is thursday at 12:45... waiting kills me, but almost there!!! 0
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GolferGirl - Glad you are doing well. Just had my #2 today. I am starting to experience what appears to be more shedding than usual. Still not sure but its definitely more shedding these last 3 days than it has been up until this point so it must be the chemo affected follicles. Definitely not noticable - not even to me.
cheyenna - I'm excited for you about your second opinion. I am pretty confident that things will only be better from here on out. Less than 2 days to go! Also, that's really cool news about Frank and the function. He sure is a busy guy. I spend some time speaking with him this weekend as well because I'm sharing my caps with someone who won't be able to get her caps until her 2nd treatment. A good friend of hers who is one of her helpers came to my house to pick up the caps and I invited her to watch a couple of rounds of cap changing. We happened to be doing treatment at the same hospital (same onc too) so I will be able to visit/meet her tomorrow when I get my neulasta shot.
Take care all!
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Wow!!!! I can't believe how many people are getting ready to use the caps or have just started them. When I was deciding about it there were only a few people on here.
I did taxotere, carboplatin and herceptin x 6. I finished March 22. I never really lost any hair. Strands, but never anything noticable. I did lose all my body hair and that shows how the follicles were hit by the chemo.
In my opinion the caps and saving my hair was really important. People say, "what's the big deal? it will grow back". Maybe not with taxotere. The hair loss can be permanent. But, it became the one battle I could win. I had already lost my breasts, my ability to have another child, the chemo caused menopause, took away a year of my life, etc. Should I let it get my hair and my normal looking appearance too? No. I wasn't going to lose another battle in the war. I was determined to keep my hair, if for no other reason then to have a victory. And I did win that battle! I have a full head of hair.
It was great to prove my chemo office wrong. They said I could do it, but that it would never work. They were all astounded when I kept coming back with hair.
I didn't know about caffeine and sugar having anything to do with hair loss. I had them through my chemo and it didn't make me lose my hair. I did get rid of aluminum deodorant. I used mennon speed stick. It was for men but it was one of the only aluminum free types that actually worked.
I saw the worries about scalp mets. Frank Fronda talks about that on his site:
http://www.msc-worldwide.com/scalpmets.html
I read about it before I used the caps. The possibility of this happening was so miniscule I decided to go for it. Everyday when I look in the mirror I am happy I did! I have been finished with chemo for over two months but I would still be bald.
If anyone is deciding and wants to read about the experience you can check out my blog. I detail each chemo and have pictures of the cold cap process:
maryellenandjulianna.blogspot.com
Good luck to everyone!!!!!!!
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Hi everyone,
I'm just back from Chemo #3 and still have a few caps to go tonight, so I'm typing under brain freeze conditions. We got started late so are finishing late, but the nurses were hugging and high-fiving with me all day, telling me how excited they are to be part of this! My nurse today was my Chemo #1 nurse also, so she was practiced in the cold caps routine and it made things smoother (plus I no longer have to explain what I'm doing). My oncologist came by and I think was officially astonished, finally. It's the first visit I've had with her where she hasn't tried to gently prepare me for the fact that my hair will fall out. She said that the cold caps came up in tumor board recently (I'm the only patient to have used them at my hospital) and the issue of scalp mets, etc. was raised. I reminded her of a conversation we'd had early on when discussing chemo, about the teensy remote possibility of developing leukemia from chemo. The odds were a fraction of a fraction of a percent and she'd never seen or heard of a case even second-hand. I said that I considered the odds of scalp mets to be the same as that, and she nodded in agreement. She's a great doc, with a research background also (one of the reasons I chose her); perhaps in future she'll be involved in some much-needed cold caps research in the US?
All of my blood etc. levels are great, not a hitch, so I don't have to have them done next week unless I start feeling funky. (I'll see my acupuncturist in the interim, who can order blood labs if needed without me having to schedule an add'l appointment.)
I had slightly more shedding the last 2 days but barely; I've kept my shed hair since the beginning, in a ziploc in the bathroom. This morning when I saw extra strands in the comb, I got a knot in my stomach until I looked in the baggie and compared it to my head: not much in the baggie after 7 weeks. Hope I can keep it up just a few more weeks!
Susan
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YEA!!! im so glad for you sebm9 0
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Just wanted to say hi to everyone and it sounds like everyone is doing great and has so much information to share!! This is such a wonderful support group for everyone-new and old!
I finally colored my hair to cover the greys (I have dark brown hair with old highlights) I haven't colored it since my chemo last May! I used a wash out color (I still want to stay away from ammonia and peroxide) with a few highlights and it covered the grey and looks great! Plus I want to say that now almost a year out my hair looks and feels thicker than ever!!! And looks healthier too! I run my fingers thru my hair and am so happy!! All of the hair that I lost around the hairline in the back and around my ears has grown at least 4 " and it gives my hair the fullness and body it had before chemo. It feels all back to normal! That's the great thing if you consider that the women not using cold caps -1 year out have little hair growth and still need to wear a baseball cap. Which I am sure is depressing for them. I just wish more women knew about these caps!! Little by little-one by one they are finding out!! Our Secret Society (LOL!) is not so secret any more! Yeah!!
Take Care Everyone,
Geralyn
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Hello everyone. There is an interesting new charity called the Rapunzel Project. They are dedicated to getting the word out about the caps and making it easier for women to use them.
Check it out:
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Geralyn! Congratulations on being brave enough to color your hair. I'm so happy it came out great and that you are so happy with your now. I appreciate you continuing to update those of us that are still in the early stages.
I just finished #2 of 4 and the hair is definitely holding up so far! I have lots of gray hair so it looks crazy when I don't either put it up in a pony tail or put that Color Mark stuff in it. If the wind ever blows open a part in the back of my head people will definitely think - why hasn't that woman colored her hair yet!
I really feel like these caps are about to take off here in the US!!! I'm so excited that hair loss from chemo could be a thing of the past for most.
Shadow- great picture of your little sweaty pie! The Rapunzel people are trying to get a freezer in my place but I think there are some obstacles with regard to the doctors actually recommending the caps. Hopefully they will go forward soon.
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Cheyenna,
Sorry for not getting back to you sooner but I haven't been on here lately because I have been recovering from my surgery. I used the PCC's on AC & Taxol and had my last round on 3/31/10. I want to tell you that I am happy with the results. My hair did thin out some and I have a couple of small bald spots on the top of my head (nothing a headband hasn't covered). Throughout my treatments (4 months) I worked and alot of people at my work didn't even realize I was going through chemo until I had to tell everyone right before my surgery. I also believe (like Ang7) that the PCC's helped me mentally getting through it.
If you have any questions, please pm me or even call me. Take Care.
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Hi,
I was diagnosed mid-May with DCIS, 2.2 cm, no nodes and found out today it is triple negative. I will be doing chemo and surgery at the Norris Cancer Hospital/USC. The order is flexible but I was told I should beginning "something" in the next 2-3 weeks. Most likely I will start chemo to try and reduce tumor. I have spent the last 3 days reading all the posts and I want to use PCC. The oncologist has no objections.
The treatment is taxotere and cytoxan, every 3 weeks for 4 cycles (seems to be a common treatment protocal). The oncologist said treatment time is 3 hours, but when I spoke to his nurse she said to plan on being there 4-5 hours because of the labwork, meet with doctor, pharmacy will NOT start mixing chemo drugs until ordered by doctor, anti-nausea meds and then 30 minute wait before taxotere is started.
I'm going to be emailing Mr. Fronda. Based on my reading of all the posts, I am guessing 14 caps. I live in the Los Angeles area (only 20 minutes from Norris Cancer Hospital) and I'm willing to drive to pick up caps. Is it reasonable to be able to get them within 2 weeks?
Colleen
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well i just got back from my second opinion, he says he wants to treat me with TCx4 then Tamoxifen only. the first ONC wants ACX4 then Tx12 then Tamoxifen. WOW!! what a difference, ONC #2 says beings it is not in my nodes and all my numbers and scans look good he feels no reason to have prolonged chemo, the onco typeDX test is good to do but with my case the size of my tumer tells him i need the chemo. he said we need to weigh the benifits against the harm of chemo, though i do need it, He said as far as the differences between A an T, AC has a history of 30 years and TC has a history of 8 years, T is newer but is said to be the superior drug but still only have 8 years of studies. He said not one is stronger then the other but the side effects differ, He does use AC and Taxol, but not in my case. he said if id prefer AC because of the 30 year history he would use it rather then the TC.. he says we need to treat my cancer and not my neighbors.. i dont know what to think? i went for a second opinion cause i felt the first ONC was really hitting me hard, Help????? and now the second is not? will it be enough????
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cheyenna Most likely Onc #2 is looking at the results of a clinical trial called USO 9735 (you can google it) that shows TC 4 cycles has more benefit in early breast cancer than AC 4 cycles. Taxotere is considered to have fewer long term toxicities than adriamycin, especially in terms of risk of damage to the heart. I discussed TC vs AC for a long time with my oncologist (he advised against adriamycin), and in the end I agreed, why take adriamycin if I don't need it. I can't remember if you had the oncotype DX test or not. I hope you do get it. If you research "21-gene assay" in Pubmed (a way to access medical research papers) and look through the abstracts, it would appear that having the test done is "economically feasible" and also that a significant number of medical oncologists and patients change their treatment plan based on what the score tells them.
I talked with Frank again this evening (1:30am his time, when does that man sleep?!!) and things are coming together to use the caps for my first chemo on June 10. I believe I am the first in my area to use them, and I doubly hope they will be successful, not only for myself, but for upcoming patients.
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Thanks OrdinaryMammal for that information. I have seen so many people like me being treated with TC vs. AC and didn't know the background or studies behind this.
Cheyenna - I think you are waiting for the Oncotype score. I feel like that is always good information to have. Thanks for posting your information as well.
cmksocal - 2 weeks should definitely be enough time. You only really need to have the caps a day or so in advance so your helpers can practice putting them on but there is a bunch of stuff you will need to do to prepare for the whole process. Being that you have read the posts you are probably up on all of it but certainly ask questions if you have any left. A bunch of us are doing TC and the caps seem to work well with that treatment. I could not be happier with my decision to go forward. 14 caps is definitely enough. They get cold pretty quickly so they can be reused during treatment. I have 14 caps but used 17 with my 1st TC and 15 with my 2nd. Good Luck!!!
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Cheyenna - I think you should get the oncotype score. For my second opinion, I went to one of the National Comprehensive Cancer Centers (you can find them at NIH.org, I think). Anyway, they are the best and the onc there told me if I had a low enough score, I could skip chemo, if I had a low-intermediate score, he'd recommend TC x4 and if I had a high-intermediate score, he'd be more aggressive and go with the ACT. The ACT is definitely more aggressive chemo and has more side effects, so I was glad to have a low-intermediate score (20) and I feel confident doing the TC based on this info and all the other info I got. It's not exactly what the oncotype is for, but its additional info that definitely helped me decide how aggressive I wanted and needed to be. I'd also ask the first onc why she thinks ACT over TC. Sounds like the second onc gave you good reasons for TC over ACT, so it'd be interesting to hear what the first onc says from her side. These are tough decisions, but I think the more info you have, the easier it is. At least that was the case for me. Good luck!
P.S. Day #7 post TC #2 and I still have a head full of hair! Yeah! I notice a few more strands in my comb these days, but just a few. It's not clumps coming out and you can't tell at all, I just notice them inthe comb. So far, so good!
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Hi Golfergirl,
Congratulations! I noticed the first shedded strands around the same time as you. I'm 4 days past TC#3 and have started seeing a little more than before, but only when I wash (today was hairwash day -- yeehaw!) or comb (I only use a big pick-type comb on my thick hair). Seems to be evenly distributed, though I expected I might lose some behind ears or at nape because the caps don't fit as tightly there, even though I'm using the straps. But so far, it seems to be all-over shedding and evenly distributed. My eyebrows and other hair seem to have stopped thinning out.
Susan
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Those contemplating adriamycin - I read that a high CEP17 expression indicates your tumor would probably be sensitive to adriamycin; low CEP17 expression, not so much. Might want to ask your onc about it.
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I just want to let you girls know that I admire you cold cap pioneers so much. Though I am not choosing to use them (I am starting CMF with less risk of hairloss), I think you are all paving the road for so many women to come. You girls rock those caps!
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Thanks DesignerMom~
I begged my oncologist to use CMF because it had less hair loss risk. Since I am Her+ she did not want to go that route. I am sooo glad I found the Cold Caps on this site.
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Hey all,
I had to write because my sister had asked me to go wig shopping with her up until my 5th TCH. I kept telling her that I was hoping to not need a wig since I was doing the Cold Caps. Yesterday she called me and said that she was sorry, she had thought that I was in denial and she did not believe the Cold Caps would work...
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So happy to see so much success with the cold caps. A couple of questions: 1. Did using the caps prolong the lengths of your treatments? 2. Even though you were able to keep your hair (wonderful) was it very dried out? 3. Did you continue to use the cold caps even after your treatments ended? 4. When you needed to change your caps during treatment, did you need to have the iv taken out of your arm or did you just keep going? Any info would be much appreciated. Thanks so much.
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Hi cmz - I can answer some of your questions as I'm only up to day 6 of treatment #2.
1. It doesn't prolong the treatment itself but since you have to wear the caps up to 4 hours following the end of chemo it does make for a long day. You can do the cap changes at home so depending on your situation you don't really have to stay at the center too much longer than normal but the caps themselves don't affect the actual treatment.
2. I can't comment on this one yet as it's too soon. Certainly it's hard not being able to wash and style the hair but in the long run I think my hair will be healthier. I am using a good shampoo (Pure Results) so I think my hair won't be too dried out but we'll see.
3. You use them a few hours after that day's treatment but as far as using them after all the chemo is over you don't have to. Frank says the cold is good for the scalp so you can use the caps in between treatments out of the freezer. I think the reason for this may be that cool helps with inflammation which is no good for the hair follicles.
4. You definitely don't need to take the IV out because you aren't the one changing the caps. You will need 1 or 2 helpers to do that for you and all you have to do is hold the cap in place while it's being put on with the hand that does not have the IV in it.
Although it sounds like a bunch of work, and it is (mostly for the helpers), it is so totally worth it. So far, even though hair is definitely falling out I don't think it's much more than usual and no way you can notice. I'm hoping it stays that way.
Hope this helps.
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Hi Drim,
Thanks a million for your quick response. You are so helpful! Do you keep your caps in the freezer at home and put them on dry ice to go for your treatments? I don't have a sub-zero freezer at home - just a regular one.
I hope all continues to go well for you. I'll keep you in my thoughts and prayers.
cmz
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cmz - Yes, exactly, you keep them at home in a regular freezer and then put them on dry ice (2-3 hours beforehand) to take to the treatment center. Even if you had a sub-zero freezer at home that wouldn't be good enough to keep them cold enough during treatment. The center is the place that needs to have the sub-zero freezer and hopefully one day they will have them with the caps in them ready to rent. Until then, the cooler is not a terrible solution. The one good thing about the cooler is that you can finish the cap changing at home instead of staying at the center.
Thanks so much for your prayers!
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Hi All,
Here is a link to the Detroit Free Press from yesterday with an article about the Penguin Cold Caps. Dr. Margolis and Beaumont Hospital are my onc/hospital. 2 TC treatments down, 2 to go and I still have my hair! Hope this link works:
http://www.freep.com/article/20100606/FEATURES08/6060315/Frozen-caps-fight-chemo-side-effect
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cmz-
1. Did using the caps prolong the lengths of your treatments?
No. The length of treatment is the same. You never stop the treatment you just change the caps as you are going through the treatment. You would start the caps an hour before treatment. They usually give pre-meds so you would already be there an hour before the chemo meds start.
2. Even though you were able to keep your hair (wonderful) was it very dried out?
My hair was drier then usual. I don't think it was from the caps. I think it was from the chemo. Chemo is very drying. My skin was also super dry. I was able to use conditioner on my hair wash days and that helped.
3. Did you continue to use the cold caps even after your treatments ended?
I didn't use them after the 6 treatments were over, but I wore them for 3 hours after the treatment. I changed it right before I left the chemo office and then did the last few changes it home.
4. When you needed to change your caps during treatment, did you need to have the iv taken out of your arm or did you just keep going? You just change the caps. The infusion keeps going. The caps do not slow down the treatment in any way.
5 . What type of freezer I have a regular freezer. The kind that is the top of my fridge. I kept the caps in there and then got dry ice the day of or day before the treatment. I used the dry ice to get the caps to the -31 degrees C that they need to be. There are some chemo offices that have special freezers so the patients don't have to carry everything in. However, I do not think there are too many, yet. The Rapunzelproject.org is trying to get more of them out there
I would say the caps are a good amount of work to use. But, it is so worth it. Everyone you know may know that you are undergoing chemotherapy, but do you need every stranger who sees you to know about it too?
Good luck to you!!
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Sounds like the Power of the PCC's is speaking for themselves! Ladies, your stories of success continues to light a path for the rest of us; THANK YOU! It will be a glorious day when ALL chemo pt's have the choice to keep their hair. A quick update on myself: my second opinion appt. was fantastic. So glad I went. From the very start of this process, I had been asking about chemo options, one in particular- Taxol/Herceptin given weekly (12weeks) followed by Herceptin for 1yr. This is a national study (Dana Farber trial) offered to pt's with 1cm or less BC, neg. nodes, and HER2+. My prior MO didn't want to give this, but pushed TCH (the harsher of the two:TH is dose dense); my bc fit the profile for the TH protocol and I go back Tues. for my instructional appt. and start date. Soon enough, I'll be wearing the PCC's and on my way to kicking this chemo's butt!
Stay strong ladies...YOU can do this!
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