Cold Caps Users Past and Present, to Save Hair
Comments
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Arlene do you take Herceptin with a hormone pill?
On another note, there is a link to penguin cold caps on naturally curly.com. The word is spreading! This website is amazing and there is a section with how to handle chemo curls.
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Hi all, I start TC treatment on Monday.
Funny question but have any of the cold cap users had a port? I'm sure it shouldn't make a difference but it seems like it would be closer to your head... I said it was a silly question. I should have my caps by Friday and be ready to go.
Also did anyone pick up their dry ice day before? It seems a bit stressful to pick up the dry ice and head to chemo at 9:00 am.
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Hi Pokey65~
Yes, I had a port and it was no problem with the Cold Caps...
And yes, we picked up our dry ice the night before as it was in the winter and we left it outside over the night. We bought extra due to the fact that some of it would be gone by morning...
Sending good thoughts your way...
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Thanks for answering ALL of my questions!
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Pokey: I think most of us cold cap users have ports! We picked up ourdry ice the morning of treatment and that gave us a couple of hours prior to treatment for them to get down to the MINUS, MINUS temps required. You'll be just fine. Good luck!
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Soccergirl: I started the Armidex right after radiation so yes I am on it at the same time as Herceptin!
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Arlene: I didn't realize they doubled up! That is a lot!
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I'm told they start them right after finishing radiation. Good luck!
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I made the impossible decision and have opted for chemo (onco 22 so no clear choice for me). Was gung ho about using cold caps, but have had every Doctor tell me they don't work well, and that most women end up cutting off the hair that remains because they lose so much and it looks bad with the regrowth.
I'm kind of freaking out that 1) I'm actually going to have chemo (afraid of side effects, menapause from chemo) 2) that I am going to lose my hair!!
I'm so scared.
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LeesaAnn: Sad that a LOT of doctors say that and it isn't true. Just talk to most of us here with hair and SOOOO happy. It is a lot of work and a big commitment....but it isn't for everyone. We wish you the best of luck!
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LeesaAnn: My Med ONc had the caps and freezers in her office and still told me they only work 50% of the time which I don't believe. I met with another med onc for genetic counseling when I was done with chemo and she looked me in the face and told me they don't work....and I had a full head of hair. She said they only worked on me....they are very uneducated about PCCs and quite honestly don't care. They just are concerned with treating the cancer but not the entire patient. Don't expect any doc's to be supportive. Most aren't, but don't let that stop you from using the PCC's if that is what you want. I am glad I used them. My hair is not exactly my pre chemo hair, but I look normal and no one knows I had chemo unless I choose to tell them.
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Lessane : I have 90% of my hair and I finished two months ago. I cut a couple inches and it is starting to look good again! They work! What chemo are you going to have?
Arlene: I am ER positve with an over expression of her-2 cells and this combo could be resistant to tamoxifen. I am receiving herceptin and could be resistant to Tamoxifen. I am struggling right now because my area is grey. The articles I have read suggest these two drugs don't mix well and to be honest I am confused why there are so many drugs with BC. I had chemo. I want to be done! I meet with my oncologist next week and he never mentioned pairing them. He did tell me I could attempt to start a family when I finish Herceptin.
The armidex is compatible with Herceptin. Many women my age shut down their ovaries with my cancer combo. I can't imagine doing that. I hate cancer!
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Thank you ArieneA, mdg, and soccergirl. I'm having an especially bad night, feeling very anxious, sad and afraid. I am just so shocked at how casually the people in my life (family, friends, doctors) are dismissing chemo hair loss in such an off hand manner. I've had several friends totally discount it like its no big deal. This is hurtful and seems woefully insensitive. Am I the one who isn't seeing this clearly? This feels like a horrible loss to me. A very public, long term loss of my identity and femininity.
P.S. I am having TC x 4
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Oh LeesaAnn~
Here is a big hug for you.
Many of my friends and family were the same way. They did not understand that I had 4 kids and I KNEW that if I looked "sick" I would feel sick. By using the Cold Caps I was able to do the things that my family normally does ie: swimming, school functions, life in general and no one had to know about my cancer but me. I know that the Cold Caps were huge with my self esteem and making me feel good even though I was tired etc.
I would use them again in a heartbeat.
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You will do very well with that protocol. I felt the same way! Hair is a huge deal and you will keep yours! My looks are a part of my identity. I enjoy hair, makeup and being a woman. You are not alone and you will maintain your femininity and your privacy. Having hair keeps the disease private if you want it to be! I kept my cycle through half of the treatment and didn't experience hot flashes or night sweats. I am confident it will comeback. That piece was and is important to me. You will get through it and the women on this site will help. I focused so much on my hair I didn't experience many side affects. My motto is if you don't look sick , you don't feel sick! Also, the treatment goes by quick. I am so glad I did the caps!!!
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LeesaAnn, I was so scared, just like you. I thought maybe the caps wouldn't work for me. I wanted and needed the privacy of keeping my hair. I have completed 5 of 6 TCH treatments and have all my hair. Do not listen to the naysayers. Maybe it is not a big deal to some, but I'm pretty sure it would be if it was happening to them. Most doctors just don't care and have not done their homework on the improvements made in cold cap therapy. I won't vouch for all types of them, but Penguin Cold Caps do work. You will be so glad you used them!0
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LeesaAnn, I just had my first TCH with Cold Caps on Wednesday. I've never been so scared in all my life -- at one point I thought about blowing off the caps because they are just one more thing to be scared of -- what if they don't work?
But my husband was the cold cap champ -- he and my sister had them on and off me in seconds and I just sat there, crying for the most part. I calmed down after the chemo started -- I guess it was that point of no return.
For me, the caps hurt like nobody's business between 3-4 minutes after each change, the first one hurting the most. Just keep an eye on your watch. It does end and then it just feels weird.
I iced my fingers and toes with frozen peas through the TC part to avoid nail damage and neuropathy. That part was AGONY. After a while the nurse brought in some cold packs for my hands which were bearable. I minute later we figured out the frozen peas had been packed in dry ice -- WAY too cold to put directly on your skin. DO NOT DO THAT!!!!!
During the taxotere it occured to me to ask why the Atavan didn't seem to be working. Uh, because I didn't have any. You have to ASK for it at my hospital. Once I got it and it kicked in the rest was a cakewalk -- I dozed between cap changes, slapping my hand on top of my head on command (your sole job), got home and even took a walk around the neighborhood with a large black scarf over my head during the final cap.
It is my impression that Cold Caps don't work as well/at all with adriamycin -- if that is your protocol I would talk to Frank. I would be suspicious of the doctor's freezer story -- the caps have to be cooled WAY lower than your average freezer (-32 degrees C) and even if it is a Penguin Freezer it may need service or calibration.
Of course, at this point I can't testify to anything besides that it is a doable process with help. I know there are 5 women in this area who have successfully used them with TC or TCH.
Oh, and be sure to tell the dry ice vendor the purpose. My dry ice was $120 until I told them it was for chemo, then they charged $24. I'm sure not everyone does that, but it is worth asking.
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LadyGrey~
Your story reminded me of when we had a huge snowstorm and my husband went to get the dry ice from the store. The manager was locking the door as they were closing due to the weather. When my husband told him what we needed the manager went back in and got him a couple bags and said "No payment-good luck with the Caps."
It was people like that who kept me going during that time...
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LadyGrey, I've thought the same thing about the caps. That I'm barely keeping my self together, now I have to orchestrate this cold cap operation, too? Feels overwhelming. I can't have my 73 year old Mother helping me with this. I am single. Has anyone had friends come in to help them? Do you use the same helpers every time? I am wondering if it adds to the struggle to have different people come to each appointment, so any one person isn't burdened with all four treatment days. Sounds like they will be very LONG, stressful tiring days.
Ang7 and Soccergirl, thank you for your encouragement. I'm not a vain person, but the whole 'cancer patient' identity is one I want to escape. Feels good to be understood, thanks. I feel so alone in all of this. It's invaluable to share this with others who KNOW what it feels like, and are willing to be REAL with you about it.
Lisa
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LeesaAnn,It is quite the contrary, the hubbub of the caps is a great distraction. The day seems to fly by. It is best to have the same helpers each time if possible, that way they get it down to an art. My helpers don't feel "burdened" at all, we have a day to just chat away and get caught up. They are so happy to help me through this. You can do this, the anticipation is the worst!0
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I agree Laura5~
With 4 kids at home the chemo days were a great time for hubby and I to actually talk without being constantly interrupted.
Except when I yelled because he made the Caps extra tight...
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LeesaAnn: Send me your email and I'll send you my writeup about my experience. I'm an early user of PCCs and was the first at my cancer center to use PCCs where I encountered the same skepticism (at best) to naysaying (at worst). Now ALL of my doctors recommend PCCs to their patients. One of my doctors even sent her best friend to me. And I'm located near UCSF where the caps are known in the BC center (the study has been running there under Hope Rugo), but there still wasn't a lot of information. It's a very patient-driven movement and will be until the caps get FDA approval, which is within sight I think.
I kept my hair, I kept my spirit, I had very few (if any) side effects from chemo, in large part because I was able to keep active and keep my pretty-much regular life and routine. On my very worst day of chemo I felt probably 90% of normal. Nobody could tell what I was going through unless I told them. (I was so busy telling people about PCCs that everybody was following my success and cheering me on.) Best of all, nobody treated me like a sick or dying person. I've now coached hundreds of women in use of the caps and it's a great gift to be able to give something back after my experience.
My onco was 19 -- I was in the same boat as you. Don't be afraid of chemo, and try not to make any decisions based in fear. That was my promise to myself and I'm so glad I did it. PCCs totally changed my outlook on cancer, on battling cancer, and myself. It became a visible sign of my ability to defeat cancer.
Send me your email, I'll send you a very detailed writeup. But mostly, congratulations on finding out about PCCs and finding this group. You will be able to teach your care team new things, and many future patients will benefit. You can do this!
My husband was my helper but I have a colleague who is being helped by another colleague, and some people have a variety of friends helping -- throughout the treatment day and on different treatment days. The caps were a godsend on infusion days. We were so busy, and so focussed on our task, and had such incredible positive energy that it seemed to radiate throughout the infusion center. The first treatment I was most nervous, of course, and I really didn't know that the caps would work (there weren't many people in the US who had used them at this point. Without Ang7 and others I couldn't have kept my sanity.) By the time I went to my second infusion with a full head of hair, the dynamic changed. Everybody was interested. By my third treatment, again with a full head of hair, the staff were high-fiving me. One nurse told me they felt so blessed to be part of this, because they knew it was a game-changer for women (especially) with cancer. Another nurse told me I was the kind of patient that made her want to be an even better nurse and keep learning new and better ways to care for patients.
I'm headed to my biannual mammogram this weekend, this'll be almost the 2 year mark since dx. Wish me luck!
Best,
Susan
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Awww, thanks Susan!
I will be thinking of you this weekend...
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Ang7, I understand about the tight caps, ha ha! Wow, you went through all of this with 4 kids at home, kudos to you! We never know what we can do until we have to do it.
Susan, Ang7, Maria, soccergirl, Arlene, and so many others; I want you to know that your posts have been an inspiration to me. Susan, I know how you feel about wanting to get the word out. I feel I have been so blessed to have discovered the cold caps that it is my duty to tell others.
LeesaAnn, there are testimonials from cold cap users on the Penguin website. I also found these to be very helpful. Gave me hope.
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Thanks Laura5~
I have been promising Frank a testimonial but it is so hard finding the time to write one!
It's only been 2 years...
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I have written about them on my blog and posted my photos too. I hope it helps someone going through this nightmare of BC. Keeping my hair helped me keep my dignity and sanity through this...and prevented my 4 year old from learning what cancer and chemo meant.
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maria, Just so you know, your blog and pictures really have helped, especially at the beginning when I was so afraid the caps wouldn't work. Tricia Burn's blog (she appeared in the Rapunzel video, and spoke about her cold cap experience) also was very helpful. She has not posted since she had her surgery on Sept. 1. Has anyone heard from her?0
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Hi everyone. Two years ago today I discovered the lump which turned out to be cancer. So it was a good day to get a clear mammogram. "See you in a year!" never sounded so good! I am celebrating by taking myself to the gym for a nice long workout and a sauna.
To everyone starting out or mid-journey: you can do this! I can't believe I'll be approaching my 2-year mark soon. Wow.
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Great news Susan!
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Susan- so good to hear your news!
To all the new ladies starting outI am here to tell you that the caps worked for me. I had to really stand up to the clinic nurses who were all nay sayers except for one nurse educator. My onc was neutral and said go ahead and try it if I wanted to. Yes it was a hassle with the dry ice (picking it up the day before) and putting the caps into ice chests at 5AM the next day and then schleping them in my station wagon to the infusion clinic. But having my friends and even people I did not know well come in and help me put on cold caps was amazing. I have always found it rather difficult to ask for help but I found many friends and others who wanted to help. The caps actually made the chemo infusions go faster- we were all worried about getting the temperature right and getting the caps on correctly. Atavan helped me to relax, would take it about a half hour before infusion suppose to start.
I am now 4 months PFC and am getting ready to color my hair. I have had one small trim. It feels great and most people have no idea I went thru chemo. During treatment I remember going kayaking on Lake Tahoe and feeling so grateful I did not have to wear a cap or wig and could feel the wind in my hair. My 95 year old mother does not know and I never told my son. I get interesting reactions from health professionals. Some of very intrigued and want to know more. But a few have said " I am happy it worked for you." They don't want to believe what is in front of their eyes. They think I am a rarity, when I tell them hundreds are using this treatment with success they still don't seem to believe it.
If you are scared, that is normal, please ask us questions. We are hear for each other.
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