Cold Caps Users Past and Present, to Save Hair
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Hi Ang7;
vent vent vent. I have often thought when reading the board that I don't know how anyone goes through this while taking care of a family. It's just unbelievable. Well, my iron and Vitamin D were low when I finished my treatments so I took prescribed supplements to get me in shape for my exhange surgery 5 weeks later and I was fine to go then. I didn't have the DIEP; i couldn't bear any additional surgery, having had cervical neck surgery and worn a brace for 3 months last year. I had a skin sparing mastectomy with an expander put in at surgery - and saline injections throughout chemo and did the exchange with a silicone implant last week, which went fine although I felt like i was shot in the chest for a few days. I did have a different problem after the chemo which was practically worse; a pinched nerve in my neck which has been excruciating and has kept my left arm and hand pretty useless these past few weeks. I think the chemo really runs you down even if you don't feel it, and then it doesn't take much for something else to go wrong since you're in a weak position to resist. Hang in, your body has been through the worst.
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Thanks for all your kind words...
I have a somewhat stupid question - Have many of you gotten a haircut? My hair really could use one but I am so afraid to do ANYTHING to it. Hubby thinks I could go get a trim and everything would be fine. Finished chemo in March. Is that enough time?
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Hi ladies~ I am very interested in any information regarding the use of the Penguin cold caps! I have undergone a bmx, pos-opt 2wks, and just found out they are recommending 6 regiments of TCH every 3wks. Is there anyone on this board who has had this treatment plan and used the Cold Caps with success? I am set to start chemo. on June 11th and frightened. I have placed several calls to the Cal. number for the caps, but have not been able to reach anyone. I'm getting discouraged. I would really like to be able to use them if at all possible. I'm really trying to "spare the hair"...
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GAgirl01 - don't get discouraged. Please email Frank Fonda at penguincoldcaps@btinternet.com. He is a busy guy but I'm sure he'll get back to you. I have just had one treatment of TC (Taxotere/Cytoxan) so far (will be getting the H soon) so I can't comment on my hair yet but I'm thinking positively that this is going to work for me. I know that at least 2 woman on this board did TCH x 6 and were very successful. The woman I got my caps from who I met in person is one of them and she looks amazing. No way you would ever know. You should have no problem getting the caps by June 11th but definitely stay on top of it.
I highly recommend you reading through all the old posts. There are so many wonderful recommendations for hair products and hair care during treatment and preparing the cooler for the day of treatment.
I'll be happy to answer any questions you have. I think these caps are amazing. I feel like they helped my breeze through Tx #1 because it's all I thought about. The chemo was secondary.
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GAgirl01 -
Like Drim said, I used the Cold Caps for 6 TCH treatments that were every 3 weeks. I only lost a bit of hair right around my ears and it is growing back now. It is coming in gray compared to the rest of my hair, but it is underneath my hair so no one can see it anyway. I ended up talking to my hairdresser about getting a haircut. She looked at my hair and told me I should wait a month until the parts by my ears grew out a bit longer. She is a cancer survivor and she asked me for some brochures on Cold Caps that she could give out to some of her clients! Another good way to spread the word!
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Hi GAgirl01-Like Ang7stated in her post I too was on 6 rounds of TCH (Taxotere, Carboplatin and Herceptin) with my last one being on February 25th. I started out with really thick long hair and did fine with the caps. My hair did thin quite a bit especially around the 6th treatment but I don't have to wear a wig and it's growing back really fast...however it is growing in grey but I color it (color w/o ammonia and peroxide) and that takes care of the grey hair. Keep trying to get in touch with Frank Fronda and he will help you with the information that you need to get started. I posted photographs after each chemo treatment (every 3 weeks) so go back through the posts and you can see how the cold caps protected my hair. This thread has a lot of great and experienced people on it so don't hesitate to ask questions and let us know how you are doing.
Carol
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Hi GaGirl01,
My regimen is slightly different from yours (Taxotere/Cytoxan x4@3weeks). I am officially halfway through my treatments and have not shed one single bit. I have long, thick, curly hair and was very anxious about losing it. I am jumping up and down telling EVERYONE about Penguin Cold Caps. My oncologist was skeptical, but this week (week 5) she was truly surprised and started to change her tune. My social worker at the cancer center has another patient (at another hospital) who just completed use of caps with success, and I was able to pick up caps from another user on the list here (joansf) who also had success. It is alot of work, if your cancer center isn't familiar with them you may get some pushback but BE FIRM! (I am the first person at my cancer center to use them, but I had a steady stream of nurses and clinicians coming to visit me during my second treatment because by all counts I should have been bald as Buddha by that point.) Whenever my oncologist made me doubt, I just logged on here, read through everybody's great success stories, and so far I am one of them also!
I recommend use of the caps without hesitation. Keep trying to contact Frank (I have had better luck via email recently); he is extremely helpful and will also put you in touch with many other past users so that you can speak with them in person -- very very helpful for me in planning.
I also echo what others have said; read through the earlier posts on this group -- lots of info here.
I will be having my last treatment on June 21 and my caps will be available after that; Frank was very helpful in arranging delivery from one user to the next. Joansf also handed us the igloo coolers, thermometer, gloves, everything we needed. I'm going to sign the igloo containers and wish the next user good luck as I pass it on!
Best,
Susan
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Hi All, I am on Day 15 after my first TC treatment, and so far, so good! I am shedding in other places, and from posts I see on other threads from other ladies going through TC, they have had substantial hair loss right about now. So far, my head has not shed anymore than normal. I am so happy to have my hair! Using the caps and the limitations on hair care are a bit of a pain, but so worth it in the long run! Definitely keep trying to get and use the caps. I am really happy I did!
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Hi GolferGirl - So great to hear from you. I've of course been wondering all week how you're doing but not surprised to hear you're doing great. So happy that the caps are working for you so far. I'm still anxiously awaiting but confident. I'm 4 days behind you so no signs of shedding anywhere yet. I would say due to the fact that I'm washing it less and using no products I have probably shed less hair in the last 2 week then normal. Have you been using the caps out of the freezer. I did a couple of times and I think it's giving me a headache. I'll still continue to do it if it really helps stimulate hair growth. Have a great weekend!
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Ladies! I am so thankful to hear of your words of encouragement!
I am trying desperately to reach Frank or someone from MSC...so far...no such luck. If there is someone out there who has cold caps I can rent (pass down) PLEASE...I am willing to do so... I am hoping to reach him or hear from him soon! I keep trying... I have emailed several times. So has my husband. Hope our diligence pays off. I am doing like you all suggested...reading older posts...it all is very encouraging; I just want to be able to practice with them in hand.
I'm sure you ladies completely understand my anxiety :0) How soon before your treatment did you begin to "prepare" your hair by not using the any alcohol based products i.e deoderant, shampoos, hairsprays etc. ?
Thank you for all of the advice...it is incredibly helpful as I dive "head" first into the unknown!!!
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Hi Drim- I don't have access to the caps in between treatments since they have them at the hospital and I just rent them as I use them there. I'd use them in between if I could and it would help! I'm getting used to washing my hair less, but I still rinse it everyday. It's the only way I can get rid of the bed head and look semi-presentable for work. I'm a little nervous about what the next few days will bring as I am shedding in other places so think I am in the danger zone right now. But it all seems to be hanging on so far!
GAgirl01- you might also want to try to send a Personal Message from this board to gmp300. She is the Cold Caps rep (and former user!) in my area and may be able to help you out. I was late to the cold caps game, so didn't have a lot of time to prep. I actually colored my hair back to its natural (?) color about a week before my first treatment and I didn't stop washing my hair and using product until 48 hours before the first treatment (and waited 48 hours after treatment before washing again). I've been using some organic products vey sparingly and so far those seem ok for me, but it may be to soon to tell. I'm just now at the point where most people lose their hair so the next few days will be telling for me.
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Golfergirl~
Thank you so much for the contact info. I will definetly try to reach her. I have already stopped using alcohol based product and not using a blow dryer either, in hopes of reaching anyone with the cold caps products. I am so encouraged with the comments...I am hopeful! Stay encouraged...keep us posted. I'll be reading & praying for you as you continue your chemo!
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GAgirl01 - You should be hopeful. This is going to happen for you. One other thing Frank Fronda told me before I started was to stop using aluminum based deodorants/anti-persperants. Based on that I started using a product called Crystal and I actually really like it. I'm not a big sweater so I guess that's why it works for me but now I actually like it better than my old deodorant.
The shampoo that everyone is suggesting - Pure Results by Regis Designline is difficult to get because you can't buy it online. You have to find a salon that sells it so you can start researching that product and fine out where you can buy it. Its a sulfate free shampoo. I got the conditioner too to use on the ends of my hair. I like them both. The other difficult thing to find was 2 or 2-1/2 gallon ziploc or hefty freezer bags so you can start looking for them now. My sister found them in a Walmart near her. The bags are used to put the caps in and it makes it easer to get them to the right temperature all over and it makes the caps fit in the cooler better.
I actually think you're in better shape timing wise than most so I'm sure you will get the caps in time.
If you have any other questions or concerns I would be happy to help you out.
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Drim & Golfergirl! I can't thank you both enough for the wealth of information and support! You both have been such an encouragement! As I began typing this my phone rang and it was Frank! You couldn't have said it better...he was amazing! Walked me through exactly what I needed to do, the caps should be on there way in plenty of time! Let the "spare the hair" campaign begin!!! Got me caps comin' and my chemo kickin' shoes on! Let the games begin!!!
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GAgirl01 - so glad you heard from Frank and will get your caps! I'm on Day 16. I think I am shedding a little bit more than usual, but not much and maybe not really more at all. I think I might just be hyper aware of it these days! Anyway, it's certainly not much and not noticeable, so another good day so far. I'm starting to feel more and more confident that the caps are going to work through the whole treatement. I'll keep you posted and good luck!
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Drim & GolferGirl~ I purchased the Cyrstal and am looking for the shampoos suggested. There are several places locally which have the shampoos, I just havent been able to get across town to pick them up yet. Quick ?, Is there a particular type of skin lotion you should be using as well? My skin tends to be dry anyway, and I'm concern about it during chemo.
Golfergirl...that awesome about your hair...good news! Keep up the good work. I'm praying for complete success! I know you'll keep us posted, I read anxiously! Good luck.
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Hi GAgirl01 - I'm so excited for you. I knew this would happen for you. I'm on day 13 and so for nothing more than normal hair loss I think although just like GolferGirl, I'm hyper aware. I usually wash my hair every day and that's where most of the daily hair loss would occur but now that I'm hardly washing it I guess the hair just falls out throughout the day but its just one piece here and one piece there. Really its just too early to tell because I hardly have hair loss anywhere else either.
Someone suggested Aquaphor which I guess is good if your skin is dry. My skin isn't normally dry and so far it doesn't seem any different than normal. There is a good thread on here for chemo tips.
Good luck and I promise to keep you posted. I'm thinking if I make it through Wednesday I'll be in good shape.
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Hi GAgirl01-
I used the cold caps and finished my chemo on 3/22. I had 6 rounds of TCH. I still have herceptin. I lost every strand of body hair except for my head. I have a full head of hair. I lost some strands but that is about it. Nothing noticable. The fact that I lost all the other hair shows that the follicles were really effected by the chemo. I didn't lose it on my head though, that was the caps.
I blogged the whole experience if you want to read it. www.maryellenandjulianna.blogspot.com
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Hi. Just checking in after 3 rounds of Taxotere and Cytoxan. I also still have a full head of long, blonde, wavy hair. My doctors are astonished. The word is getting out on BC.org. I have had PMs from women who are following the TC threads. I expect we will see them posting here soon.
Drim and GAgirl, where did you find Crystal? I would like to try it. I have been using baking soda in lieu of antiperspirant. It works well and is inexpensive but it is a little messy and inconvenient.
Frank Fronda is amazing with all of his advice for us. I do miss my morning cup of coffee though. And afternoon tea as well. Do any of you know how soon after our last round of chemo we are allowed to resume caffeine and sugar? I would hate to get through chemo only to lose my hair to a cup of Peet's coffee or a pot of Earl Grey.
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Hi NewBride - I got Crystal at Walgreen's. Hopefully they have it at your local drug store.
OMG about the coffee - I've been drinking like 6 ounces every day!! Is that bad for your hair. Sugar too??? I have not heard this at all.
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Hi All, I hadn't heard about the no caffeine/no sugar rule either! I know sugar is bad for cancer in general, but I've been told to drink lots of green tea and I've been doing that. I've had some coffee, too and despite my best efforts, I'm still eating sugar, though less than before. Hopefully that will all be ok! I'm on Day 17 and my hair is doing good. Seems like there were a few more strands than normal in my comb today, but nothing that I would normally even think twice about if I wasn't so worried about my hair in general. I found the Crystal at Meijer's and I've also used Tom's of Maine and a few other organic deodorents. None of them seem to work as well for me as the good old aluminum kind, but I'm not willing to risk the aluminum anymore.
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Hi all,
I don't know if these are new ideas from Frank Fronda but I always had coffee and tea during my chemo treatment. The thing I did stay away from was the Emend for nausea as one of it's side effects can be hair loss. I did change to Arm & Hammer deodorant which is the only non-aluminum one that works for me. Also I am still using the Regis shampoo and conditioner.
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Thank all of you for the speedy responses about deodorants.
I'm glad to hear that caffeine doesn't make your hair fall out. Yay! I'm going to have a cup of tea right now. I'm almost sure Frank said no sugar or caffeine but with so many people telling me what's bad for me it is entirely possible that I got him confused with somebody else. Sorry if I alarmed anybody. I really wish I had posted my question earlier. I haven't had a cup of coffee or tea since the end of March.
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Hi NewBride - It's entirely possible Frank suggested minimal sugar and caffeine. Caffeine is dehydrating so probably not a good idea to have a lot of it but a cup of coffee or tea once a day should not be bad especially if you are drinking lots of water. Also, I did read that sugar is not great for ER+/PR- so maybe that's why Frank mentioned that to you. I'm not sure the deoderant has much if anything to do with the hair (I could be wrong) but they say that the aluminum can cause breast cancer so I think that's why he suggests the non-aluminum products. He's just an all around great guy.
Day 14 and counting (seriously counting)
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Hello, im brand new to this and am hoping for some help, im so desprately not wanting to lose my hair, i can not even see the keys as I type due to my tears, im very scared! I lost my breast, and am wanting to hold on to my hair. I am hoping someone can help me, I dont know how to get them? it gives me hope reading your posts about those caps. can i buy them or rent them? will it be in time? please help me with this. thank you
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Hi Cheyenna, I am lucky in that the Hospital I go to for treatment has the caps available, so I didn't have to hunt them down. I don't have a contact number for the company, but I am sure some of the ladies on here can help you out with that. Otherwise, I'd suggest checking out the website www.msc-worldwide.com or googling Pengiun Cold Caps for the contact info. Not sure when you are starting chemo, but I think you can get it together pretty quickly. Seems like most of the ladies are able to do so. Good luck and keep us posted!0
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Hi Cheyenna - I know just how you feel. I was right there where you are several weeks ago but it's going to be okay. As GolferGirl suggested you should go to that msc website but you should also email the cold cap folks at penguincoldcaps@btinternet.com and someone will get in touch with you. You actually rent the caps. Perhaps someone in your area is finishing up with their caps. If not they will find caps for you and send them to you. You'll need to fill out a couple of forms and send them back. They will tell you everything you need to know. When are you supposed to start treatment and what treatment? The cold caps seem to be working for just about every one of the breast cancer regimens.
Please know that we will help you through this. These women are wonderful and there are so many great suggestions posted on this thread. It's well worth going through it and reading it.
I'm on day 15 of TCx4 and so far so good.
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Cheyenna, Sorry, I got booted from the computer last night before I could finish my thoughts. Drim is right, there is lots of support on this site and all of the cold cap users are very helpful! I cried when I thought I had to lose my hair, too. But so far, here I am on Day 18 post chemo #1 (I'm also TCx4) with a head full of hair and no major shedding. Thank you Penguin Cold Caps!
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I will be doing 4 TC also. I was absolutely freaking out reading about the amazing, activist taxotears women who have permanent hair loss. I emailed Frank Fronda, and he called me back this evening. He's a great guy! But quite busy. Juggling a lot of things. It was midnight his time.
I don't know what day I'll be starting chemo. I am hoping to wait until I'm better healed from surgery. And it would be nice to wait until my older son graduates high school 6/9. I expect the oncologist and his office to be very resistant to the cold caps--and to the commotion it's going to cause on infusion days--but I'm feeling quite determined. Someone, many pages ago, posted a bunch of research. When I see the onc in two days, to confirm I'm doing chemo, figure the start date, and announce the cold caps plan, I'll want to be armed with printouts.
My standard line has been "Hair today, gone tomorrow." Sure would be nifty if I was wrong!
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Hi ordinarymammal and Cheyenna, and welcome! I know exactly how you both feel. Penguin Cold Caps sounded too good to be true, and I am the first at my cancer center to be using them and I was met with much skepticism. However, when I researched, I found research in European literature and this wonderful group.
Frank@PCC is a *wonderful* resource and will provide you with contact info of folks to speak with. Make sure you call them! Their info was also very helpful (logistics on the coolers, dry ice, etc.) as are the posts on this list. I am halfway through 4TC and I have not shed a single hair on my head as of Day 37! I have lost plenty of other body hair and my eyebrows have thinned, but not so much that anyone notices other than myself.
It is alot of work, but well worth it. I will be completing treatment on June 21; Frank arranged for me to pick up the caps from JoanSF just as she was completing her treatment. Who knows, maybe I'll be delivering the caps and coolers to you, depending on when your chemo begins!
Best,
Susan
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