Cold Caps Users Past and Present, to Save Hair
Comments
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Ralston - i was left with a small section of long hairs ... the rest was a bunch of 2-4 inch pieces that covered my head. Like you - not sure what these are because i've never had my hair that length. i'm very disappointed that no one from PCC ever called to see how i was doing (I would have asked about my hair loss and the remaining short ones). I'm 2 months past my last treatment, and nothing from the company.
Soccergirl - I had the same experience - but mine was family members. My sister, brother and sister in law never once called to see how i was feeling. Never called to take my kids to a movie - not one word to show they cared. So many of our friends sent over meals, called, emailed, etc. I'm finally getting past it, but when chemo first ended i had a really hard time. I found as the steroids went away - so did these negative emotions. It really is eye opening to see who your real friends are.
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Soccergirl - I am glad you also had success with the caps. I also experienced people acting like they didn't care when I was going through treatment. I have gotten over it. I guess I do know who I can count on and it's not those family members. I was deeply hurt by it but I just don't care anymore. I am not going to spend my days thinking of painful, hurtful things...I am greatful for being done with treatment and being healthy. One thing BC has done has made me more compassionate to others going through an illness or bad situation. It has made me look at how I respond to others going through things like this too. I can't change other people's behaviors at all, but I can control how I feel about it and how I choose to treat others. That is the only thing I have control over. I refuse to waste time and energy on this stuff. It's not worth it and it won't change anything.
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Thank you ladies! I needed the support. Although I didn't experience a lot of physical side effects, I have suffered with the emotional piece. I have participated in a cancer support group during my treatment and every person in my group ( including myself) has felt isolation and a sense of loneliness with their diagnosis of cancer. It is sad that we all have stories of people who didn't care or didn't get it. I am amazed how badly people behave during a crisis. I need to heal my body and my spirit too!
I will let it go. Thanks for sharing your stories. I am shocked and sad that so many of you had to experience the feeling of being left behind. With that being said, I wonder if I would have felt more isolation (discrimination) if I had not been able to keep my hair.
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Soccergirl- I decided long time ago (I was diagnose 2006) that I was not going to talk about BC, to people that didn't have BC. (except my dad & husband), because they don't understand, don't know what to say and can not give me any advice.
Like Maria, I have learned a lot with this experience, I am more sensitive to people's pain and problems and now I have other priority in life. I want to enjoy my life, laugh a lot, and don't want to take life so seriously. I love my simple life and I am happy that I have hair, yes people tend to discriminate.
Blessings,
Tiki0 -
I am excited as my new oncologist referred me to a support which at this point I don't need. The girl who called just assumed I was newly diagnosed rather than finished with the exception of Herceptin. However, she asked me if I'd volunteer to talk to like ladies new diagnosed, I said I'd be happy to volunteer and what I'd really like to do is tell the new ladies all about cold caps so I'll be going to a presentation and I'll take one of my caps to show them what they are and to explain how to use them....very exciting. I'll let them know about both types of caps - the PCCs and the ElastoGels and let the ladies make up their own mind. I'll give them the website for both. I am happy to donate my caps to the organization too.
Good to get the word out where ever we can!
Arlene
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Soccergirl: This is a very lonely disease. I am so happy to have found this website as it has helped me more than I can express. I have also created wonderful friendships with other women from this site that has made me feel less lonely at times.
Arlene: That's great! Spread the word!
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Boy I was away for a few days and look at all the messages!
I am sure all of us share similar experiences, knowing who our real friends are, feeling let down by whom we thought were real friends etc. This is truly a lonely disease. I find the emotional toll far greater than the physical one. Everyday thinking that I had cancer - I hope I start forgetting about it. If I had lost all my hair, emotionally it would have been worse. I am sure with time, our wounds will be healed. Like mdg, I choose not to focus on who let me down, although it still stings.
It maddens me that cold caps are not public knowledge and offered to ALL women going through treatment.
I too find that this experience has made me a far more compassionate person to others suffering. One thing I notice myself doing is looking for other women "like me", but I do not look like a typical chemo patient. I guess I want to know I am not alone. I never seem to see anyone, but at least I know I have my friends here and I do not feel so alone!
Regarding life - I am now savoring every moment. This dx has heightened my sense of "smelling the roses". I want to live life to the fullest! Take care everyone.
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Thank you for all your wisdom and support. I will focus my attention on the beauty of life and the unexpected people who made kind gestures during this difficult time. I don't want anger in my life. Life is to precious. We all know how precious it is really is!
I do plan to help other women when I have some to time to recover. The caps have allowed me to keep my privacy, my dignity and femininity. I know I would have felt more physical side effects if I had to start my marriage with out my hair.
I am so grateful to have my hair, even if it looks less than desirable. I know I will be back to my normal sooner than later.
Arlene: that is great you are getting the word out! I can't believe what your former friend said to you! That might be the most ignorant statement I have ever heard!
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March 30, 2011 - Before Treatment
July 1st, 2011 - After treatment
September 23, 2011 - 13 weeks PFC
September 23, 2011 - 13 weeks PFC with hair extensions
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Tiki~
You look great even from the back of your head...
I hope that sounds like a compliment!
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As someone who did not use PCC, I think it would be great to get the word out to more people prior to treatment. Being that I had 16 chemo sessions, and I started a week after meeting my onco for the first time, I don't know it would have changed my plan, but I do know hearing from someone first hand, would have really made an impact in the beginning.
Speaking of the physical and emotional toll of BC, I can tell you that every morning that I woke up and looked in the mirror at my bald head was a constant reminder of it.
I also agree about the friends and family support comments..I had friends I spoke to daily,who never once contacted me, while others really stepped up and helped without me asking for a thing..0 -
I totally agree with getting the word out...
I would not have even heard about the PCC's if I had not signed onto BC.org and found the thread before I started my chemo. I am forever grateful and am so glad that I found an oncologist who was willing to research & let me try them.
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Tiki: you have gorgeous hair!
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Thank you ladies for the compliments! I am very greatful to Frank and PCC. Finally, I can tell the caps works, as I mention before my shedding is less that before chemo, and I have a lot of hair growing, so from now on my hair will be better. I feel good about myself, lost 14 pound that I gain during treatment, I am exercising 5 days a week. I feel strong and healthy. I had some stressful times when I didn't know if the caps will work and the shedding wont stop, but now I can look back and say. IT IS WORTH IT!!!
Ladies, thank you for your support.
Blessing,
Tiki0 -
Tiki - your hair is amazing. What kind of chemo did you have? i know that makes a difference.
I wish PCC was more organized. I wish they had a better handle on which drugs do better, and what we should all expect. Frank told me I'd keep 75% of my hair. I lost 90%. They really should be tracking all of us. I had started on a draft form that we would all fill out. Tons of questions that would help others in the future. I didn't do anything with it because I don't feel the company is organized enough. I think the future is in the companies like Paxman and Dignicaps. Perfecting these products will be the way to go. If anyone has info on the success of these can you send it to me?? thanks!
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LivCar - I have also struggled with PCC and the lack of follow up especially with us on AC. Unfortunately, I have not found yet anyone who has substantial success undergoing ACT. Have you send your final results to Frank? Have you asked for any reimbursement?
Tiki - Wow, now I understand why you are so happy to have used the PCC. Congratulations !
I am really happy for all of you that were able to keep your hair during treatment. After 4X AC and 3x Taxol (of 12) I have lost 90% of my hair. I am still using the PCC and following protocol, but I have to confess that I have moved on to focus more on my health and do more for my body .The positive outcome is that since I already lost so much hair, I stopped worrying everyday about how much I shed and I feel I am much more relax and free.... Who would've known...
I agree. I also found this site and all of you while researching the PCC. I have to say that I feel really lucky for that.
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LivCar- I started TCH on April 24,2011 every 3weeks 4 times. I am still getting Herceptin up to a year. I had Herceptin before in 2007-08. And did very good, my only sice effect was stiffness, it feels like you have arthritis. But after finished Herceptin it went away.
Tiki0 -
Thank you all ladies; my relative was laid to rest on Friday in Maryland.
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Liv Car: I agree with you that we should be tracked and specific variables analyzed to ensure success for future users. I find it interesting that many don't shed much during chemo but shed heavily after or vise verse. Our diets, iron levels, condition of scalp, did we use eyebrow straps, did we take nausea medication or any other medications, supplements, etc. could be studied. Many woman might have saved more hair if they had more insight about complicating factors. I spent hours studying the posts of the woman who claimed they saved most of their hair prior to chemo.
I am sorry you did not save75% of your hair. What chemo did you have? What is a Paxman cap?
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Ralston- probably ACT, is harder on the hair. But I agree with everybody, they should keep track on us. I shed the most after chemo. And I lost like 60% of my hair, my last picture is with hair extension.
Tiki0 -
Tiki that is crazy that you maintained so much hair during chemo and lost so much after. I wonder why that happened?
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Soccergirl- I finished treatment on June 24, 2011. My July 1, picture is just one week after treatment. I remember I post something here saying how happy I was with my hair. After that I started to shed too much, that I had to take xanax when I wash my hair. I became more active in this site after treatment because I needed support. Soon very soon all my wounds will be heal.
Blessing,
Tiki0 -
Snoopy73. Sorry for your loss. That is hard , I know : (.
Tiki. Thank you for posting your pictures. Your hair looks beautiful. Your hair has a beautiful wave and so healthy! Like you, I shed most of my hair after chemo not during. I am assuming you did not cut your hair, is your hair cut in layers? I am trying to understand why it got shorter. Mine is all one length.. So did not get shorter. Sorry for all the questions just trying to understand the progression.
Ralston. It was so much fun to see you again. You look absolutely beautiful. No-one would know what you are going through. I love your spirit. Hopefully your diligence with the caps will
result in protected hair follicles. I have met a few women whose hair did not grow back ( they were not using cold caps ). They wear wigs for life now.
I agree PCC could be using our experiences to boost their base of knowledge for free. What a deal we pay them and they get smarter and more able to provide better information to future users. It would be nice to see results getting better. I am still not sure why I shed so heavily just when I thought I was home free and it lasted soooooooo long. Ugh Xanax should be sent with the shipment of cold capss
Has any one had any cording? What did u do for it and did it resolve? You can pm me if u like. I look forward to hearing from you...0 -
Sashette- on Aug 2, on my 5 weeks PFC, I cut 2 inches since I had lost so much and look so thin. But during chemo it grow a little bit also. Anyways, thin hair is better than no hair.
Tiki0 -
Sashette - Meeting you has been one of the best things that have happened to my during this process! I am so happy that we live so close. I have an axilliar cord formation or Lymphatic cording, I hate it!
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I also had much heavier shedding post chemo than during chemo. I wish it would have stayed like it was a few weeks after chemo...back then I thought that was getting thin...who knew it would get a lot thinner in months to come. I also agree that xanax should come with the caps. I use to talk myself into washing my hair and then I would hide in my room and be depressed all day. I use to say to DH "I washed my hair today". That was enough said....he knew to stay away and let me be in a bad mood.
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Yes, the post PFC shedding is the worst. While I never got bald nor any bald spots, I only have a small section of long hair in the back and most I cut off last week. The rest I will probably have cut off by a stylist soon. Just trying to hold onto it but silly I know. It is growing quickly now.
Hair washing was drudgery for me too and I waited nearly 2 weeks many times between shampooing. I'm so glad that is all over.
Once I have my little pixy cut, I'll post pictures.
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Hi I started with dignicapa for first two chemos and then Paxman for three chemos. Lost 70% of hair after 2nd chemo. After I switched to Paxman, I shed a little and now 4 weeks PFC I hardly shed. I was on TC. Dignicap didn't fit well on my small head whilst Paxman did.
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I am wondering also about the post chemo shedding.
I did TCH X 6 and I really did not shed much after chemo.
I have been a big meat eater in my past and I wonder if that DOES have something to do with it?
Also, about the caps being tight. My husband climbed onto my chair while I was in it and made those caps so tight I could hardly stand it.
I am STILL waiting for any money from BCBS. They say they are waiting to hear more from Frank. Ummm, we are going on 2 years now...
I will not give up. Even to get some money back. You know, the money that should have gone to a wig?
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Snoopy: so sorry to hear about your loss.
Tiki: your hair looks beautiful. Did you color it yet? I'm trying to hold out until my hair feels stronger and not shedding so much, but I really need my blonde highlights back.
PFC shedding seems so individual and it would serve future pcc users to track results. I'm glad that Ang chimed in. I was wondering if anyone who had 6 TC treatments experienced heavy shedding after tx 4 so we could conclude that the chemo effects were cumulative, but we can't. There are so many variables.
I would say I shed very heavy tx 1-3 at days 18-24, and I shed very heavy on wash days, Xanax helped me keep it together on those days. Then after tx 4 I shed heavily daily for 6 weeks PFC. My shedding diminished significantly when I started washing frequently with a clarifying shampoo. I did develop an itchy, flakey scalp due to infrequent washing protocol. The last few weeks I have been shedding more than normal but not so much that I focus on the hair loss.
Today I discovered a great shampoo, Coloure, gentle daily clarifying shampoo with a ph level of 5. It does not contain parabens or sulfates. After 5 weeks of washing 2-3 times per week, my scalp feels almost normal. I do not know why I had so many problems with my scalp, but I worried this contributed to PFC hair loss.
Ralston & Sashette: I too suffer cording. It is impacting my QOL.
Arlene: love to see pics of your haircut.
I am so looking forward to a hair cut and color and hope my hair will be strong enough early November, if I can wait that long.
I just want to thank all you guys here for encouragement and support during all this. I wouldn't have known about PCCs if it weren't for mdg and her blog which I stumbled upon in April. Then I spent countless hours reading pages and pages of threads, learning from every one of you. Also i received numerous pms of encouragment along the way, when i felt hopeless, afraid and scared, but I was reassured every step of the way. I am grateful that I did not lose all my hair and it was due to joint effort. THANK YOU all you wonderful women!0
