Cold Caps Users Past and Present, to Save Hair

Options
1…277278280282283…716

Comments

  • sciencegal
    sciencegal Member Posts: 1,120
    edited May 2013

    Shipsgirl and SusieQ I hope you are both feeling okay after your chemo. Pleease take care of yourselves and try to not stress too much. Ohhhhhmmmmm.........



    The caps sure worked for me, in spite of what seemed like massive shedding around chemo rounds 2 and 3. In the end it was not enough to make me wear a headcover. It is all relative to the huge numbers of hairs we have on our heads.



    I wish the same level of success for all of you! Take care.

    · Share on FacebookShare on Twitter
  • tmb173
    tmb173 Member Posts: 111
    edited May 2013

    Question for capers.  I got my capps and am practicing for Wednesday (chemo #1).  How did you wear your hair under the cap?  My hair is shoulder length.  If I wear it down, it gets stuck in the velcro :)  Did yoou do a loose poneytail?

    Also, just a tip.  I did not order the headbands (to be honest I misunderstood what they were).  But I have noticed that regular cheap fabric headbands with elastic that I got at CVS work just as well.  I just wear a few.

    · Share on FacebookShare on Twitter
  • sciencegal
    sciencegal Member Posts: 1,120
    edited May 2013

    Hi tmb173 - wear your hair straight down because you need to change the part several times through the process, to avoid frostbite. This is hard when your hair gets damp and you have to do it SO fast, you could not take out a ponytail and then redo it.



    It is important to practice, practice, with your capping team (preferable before the caps are cold) to avoid the dreaded velcro. They can fasten the front velcros prior to putting the caps on your head, and hold the back velcros out, then readjust everything once it is situated on you.



    The cold cap headbands are filled with the cold gel and give a few more inches of coverage. I have a super big head, so needed them, others do not.



    Be careful wearing a headband under the cap- anything it covers, like the hair right in front of your ears, or where it sits in back of the head - will go bald because it is insulated. I tried this to protect the top of my forehead above the moleskin, and lost all the hair that was below where the headband sat. in a clean line. it is growing back now and about an inch long- little tufts right in front of my ears.



    This shows how well the coldcaps work for the rest of the hair!



    If I was doing it again I would not use the fabric headband, just the moleskin.

    · Share on FacebookShare on Twitter
  • mdg
    mdg Member Posts: 3,571
    edited May 2013

    My hair was long but I did wear a loose, low ponytail.  I did have to re-do it sometimes but that kept the long part of my hair away from the velcro.  I also would have my cappers undo all the velcros and then I would bend down and hold the cap in my hands while they made sure my hair was free from the velcro before they took the cap away.  So I sat in a chair and bent forward with my hands holding the cap and I dropped my head down towards my thighs....I hope that makes sense.   I did still change my part every time to avoid frost bite. 

    · Share on FacebookShare on Twitter
  • tmb173
    tmb173 Member Posts: 111
    edited May 2013

    Got it- thanks!

    · Share on FacebookShare on Twitter
  • curly123
    curly123 Member Posts: 127
    edited May 2013

    tmb - i have long hair. i actually take a spray bottle i got from the dollar store and spray water around the sides just before removing the caps to help minimize tangles in the velcro. it seems to help, but there are always a couple of hairs that pull.



    good luck!!!



    curly

    · Share on FacebookShare on Twitter
  • Laura5133388
    Laura5133388 Member Posts: 577
    edited May 2013

    tmb173,  My cappers also fastened the front velcros before placing the cap on my head, then as the caps were being placed, I gently held my hair down.

    · Share on FacebookShare on Twitter
  • shipsgirl
    shipsgirl Member Posts: 264
    edited May 2013

    SusieQ hope yours was better than mine.  I felt extrasensitive yesterday.  PMS? I hope not; I'm hoping chemopause has started.  Anyway, I was edgy despite Ativan, my first IV vein blew so she had to do another.  Ouch.  Before she started the IV, I suddenly didn't feel well and had to go an puke.  Think that was the lunch I ate.

    But despite it all, I made it through.  I was falling asleep between cap changes near the end.  Today has been the best day 2 I've had.  No nausea, no heartburn, no sore throat, no bladder control issues.  Just a little tired.  SusieQ I hope your Day 2 was as good as mine.

    I'm returning my electric blanket.  I've never used it. 

    · Share on FacebookShare on Twitter
  • SusieQ_inCA
    SusieQ_inCA Member Posts: 61
    edited May 2013

    Oh shipsgirl I'm sorry you had a rough go but I am very happy to hear you had a good Day 2. I must be very fortunate as all 3 treatments have gone well with minimal side effects (heartburn) but no nausea. I've been able to get out and exercise by walking a hill near my house and that always makes me feel even better. No chemo pause yet-2 full fledged periods during treatment so far. My biggest complaint is my gross 6-day unwashed hair so I cannot complain at all. Again I feel very fortunate.



    Wishing you a continued good week of recovery!!! Hang in there!!



    SusieQ

    · Share on FacebookShare on Twitter
  • shipsgirl
    shipsgirl Member Posts: 264
    edited May 2013

    SusieQ, good on you!!  I'm always glad to hear someone is doing okay. 

    I'm 3 down, one to go on AC.  Yay.  I still have the "hit by a truck" phase to get through on this one, but I'm really looking forward to the end of this part.

    What can I expect on the T phase? I'll be on Paclitaxel.  Is that easier on hair?  I think it's easier on side effects.  Does anyone have any experience?

    · Share on FacebookShare on Twitter
  • PatinMN
    PatinMN Member Posts: 920
    edited May 2013

    Ships girl, I had taxol and Herceptin only. The weekly dose of taxol, for 12 weeks. is that what you're having? For me the caps worked extremely well on taxol - I essentially lost no hair. My local Penguin rep was amazed at how well they worked, having not had anyone on just taxol before. side effects for me were also minimal, although I think women who have AC first have a harder time with taxol probably because of the cumulative effect. Taxol can cause neuropathy so be ready with supplements to deal with that if it starts. I took vitamin B6 (100 mg per day) and L-glutamine (30 grams per day, powder form, divided into two doses, mixed with a liquid of your choice). It worked for me.

    · Share on FacebookShare on Twitter
  • hope49
    hope49 Member Posts: 370
    edited May 2013

    Hello Cappers!  I am wondering if anyone has advice on dry hair.  I am now 9 weeks pfc and my hair is really dry.  I had my first trim last week - just a 1/2 inch and I was terrified when the stylist was combing and cutting, but all went well :)  It felt a lot better afterward, but this week feels back to dry.  I'm using DermOrganic shampoo and conditioner and then Sea Chi leave in on the ends.  Any other ideas from the veterans?

    Glad to hear things are going well for all the new ladies - keep up the good work!

    · Share on FacebookShare on Twitter
  • schoolmom
    schoolmom Member Posts: 458
    edited May 2013

    I am 4 months pcc and struggle with the dry hair also.  I had dry hair prior to chemo and now it is thin, dry and frizzy.  I still wash once a week and condition with argol oil and color every other week with semi permanent Beautiful by clairol.  I have trimmed 1/2 to 1 inch three times now and have some hair regrowth 1/2 inch long and others 3 inches long. It barely touches my shoulders and pre chemo it was 4 inches past my shoulders down my back. I guess it depends on when it shed.  I shed for 2 1/2 months after chemo so I have all different lengths of regrowth.  I will be glad when school is out in 3 weeks and I have a few months of regrowth before going back to work.  My hair is acceptable...not chemo recognizable but still a mess.  My pic is the last day of chemo in Jan.  I will post a new one.

    I posted the pic I took today.  When I go back and look at the pics from Jan, it really is just a little frizzier but fuller and obviously shorter.  I am hoping that 3-4 months from now it will have calmed down and I will have trimmed some of the chemo frizz .

    · Share on FacebookShare on Twitter
  • jc254
    jc254 Member Posts: 439
    edited May 2013

    I have a appointment Monday morning with Dr. Marisa Weiss for a radiology consultation.  Dr. Weiss is the founder of Breastcancer.org and a breast cancer survivor.  Since I will be arriving for my appointment with a full head of hair at 32 days past my first chemo, I thought it might be a good opportunity to speak with her about cold caps and suggest ways this website can be used to better educate women about the cold cap option to save hair.  It seems to me that too many women find about about cold caps too late or have no knowledge at all. I'd like to brainstorm with others on this forum for ideas to share with Dr. Weiss. Does anyone have suggestions?

    · Share on FacebookShare on Twitter
  • shipsgirl
    shipsgirl Member Posts: 264
    edited May 2013

    I would just like you to thank her!!  This site has been a godsend to so many of us.  What a great opportunity for you. 

    · Share on FacebookShare on Twitter
  • Gattina368
    Gattina368 Member Posts: 1
    edited May 2013

    Hi everyone!

    I didn't find out about PCC until AFTER I had my first chemo on April 22nd. (Taxotere/cytoxan). I talked with Frank and Geralyn and obviously knew I was going to lose what was there during first treatment but was told this could still help protect the rest and new hair may grow back sooner than later. My hair did not all come out until 20 days later on Mother's Day and the only reason I think it came out all at once so drastically is because I had itched my scalp like crazy all day the day before under the scarf (I have always been that way with hats, etcetera since childhood so not necessarily from chemo.) and woke up looking like Coolio or with dreads! Haha. I ended up having to comb out the mats and it mostly came out then. I have a very thin covering of hair left on my head.



    I had my 2nd treatment the next day on Monday (May 13th) and used the caps. I know next time I will definitely need to put some sort of cap on to prevent frostbite because my hair is now thin. I have to find out what to use for that so as not to compromise the effectiveness yet protect my scalp. (?).



    I agree with others you need help to do these caps - if not for the sheer mechanics of it but also because of the line in your arm makes it hard. It was great to have my friends along and I guess you could say I am approaching it all with laughs and fun. I was called diaper head and igloo head but it was a good laugh during a crappy time. I do think it would be hard to change them alone and I'm not sure we even got it "down pat" but if it helps, right?



    The hardest thing is the attitude of the people that don't know about the cold caps. Just because you haven't heard of it doesn't mean that you should make a patient feel like they're out of their mind for wanting to be pro-active. I am hoping to educate more people about the success rate of others. For me, I don't know how to tell "success" unless I have new growth during chemo. Which I guess leads me to my question...



    Has anyone else used them AFTER the fact like this? And if so, any thoughts?



    I would love to hear from anyone if they "came late to the party" like me!



    Thanks and blessings to all riding this wave together!

    Kimberly

    · Share on FacebookShare on Twitter
  • mdg
    mdg Member Posts: 3,571
    edited May 2013

    Welcome Kimberly!  I am sorry you found out about the caps late....I so wish women were offered this choice just like they are offered other choices through chemo.  I don't know of anyone who started using them late....I hope you start seeing hair growth now that you are using them.  You are also protecting your follicles....some women have permanent hair loss from chemo.  What chemo are you on?

    For all of those that finished chemo - I also had super dry hair.  After I got a good hair cut it seem to cut a lot of the dead stuff off but remember I had long hair and then got it cut to shoulder length.  I still like the deep conditioner from Organix.  I use the Argon Moroccan Oil deep conditioner once or twice a week.  I still do this to keep my hair healthy.  I think it helps.  The other thing I want to mention is when you are ready to start coloring your again, really look at the products you use.  I switched to a more natural coloring product with far less chemicals and my hair is SO much healthier than it was before chemo.  I use Naturtint.  I would never go back to regular colors or regular salon colors...If you don't color your hair yourself, find an organic salon.  It's worth it!

    · Share on FacebookShare on Twitter
  • Hortense
    Hortense Member Posts: 982
    edited May 2013

    jc254 - I know you will be an excellent advocate for colds caps. I am so glad you will be seeing her. 

    Please tell her that I second your position that her website would be an excellent place for people to learn about cold cap therapy. That is because it is so trusted. Doctors at both New York Hospital and Memorial Sloan Kettering recommended it to me. Like many women I was numb and confused by my diagnoses and by the speed at which everything was happening. I needed learn as much as I could as fast as possible about breast cancer and its treatments because I knew very little. 

    I was lucky. I accidentally stumbled across a brief mention of cold caps saving hair on a chemotherapy thread on this website just days before I was to start chemo - or cancel it, as I was seriously considering not having chemo because I felt so strongly about not going bald. I couldn't believe what I had just read, so jumped on the Breastcancer.org search button and looked for any information I could find which eventually led me to Penguin. I had to change doctors and hospitals in order to use them, but the effort was worth it. Keeping my hair and looking like myself throughout chemo, radiation and recovery has helped me keep a positive attitude and stay strong. I've never shed a tear or become depressed. I believe being able to NOT go bald, to remain looking like oneself throughout this terrible illness, is powerful medicine.

    Please tell her that Memorial Sloan Kettering Cancer Center in NYC is now allowing cold caps, after noticing some of us were going elsewhere to be able to use them and that it was losing all that income - chemo is expensive. New York Hospital, where I went, has been welcoming them for several years. Unfortunately, I don't think Sloan Kettering has gotten to the point that it is openly telling people about them which is shame. Because cancer centers, doctors and nurses across the country are not yet telling patients about cold caps, it is important that people have reliable places where they can learn about scalp cooling therapy in time to know they have a choice.

    Breastcancer.org would be an excellent place.

    · Share on FacebookShare on Twitter
  • makingway
    makingway Member Posts: 799
    edited May 2013

    jc254-Thank you for advocating on the behalf of women! All past and present cold cap user's diligence is so important in changing the choices for women of the future. It's important that women learn of cold caps early on. I found that bc.org has finally updated the cold cap information page! Yay!!! http://www.breastcancer.org/treatment/chemotherapy/side_effects

    Unfortunately, it's not entirely accurate...Only 2 caps are mentioned-One of them, the Dignicap by Digitana, is not even available to the public, let alone in the US.There is no mention of Elastogel caps which is the ONLY other cap available to the public. The page mentions a success rate of only 50%, when it's actually closer to 90% depending on the caps used and the drugs given. It's also mistakeningly written that the caps are more effective with Adriamycin than with the Taxanes, when it's just the opposite. The scalp metastasis scare is mentioned, yet, no research is provided to support this theory. In fact, the studies show there is NO increase in metastasis for those using scalp cooling. There is no mention of the possilility of permanent hair loss either... This information should be disclosed. You can print out this article for Dr. Weiss to read. It was the most comprehensive one I've read. http://www.medscape.com/viewarticle/737144?src=rss

    Good luck~Keep up the good work!

    · Share on FacebookShare on Twitter
  • Debwarrior
    Debwarrior Member Posts: 72
    edited May 2013

    Hi cold cap users



    I am also using PCC. I've had m second treatment of carbo/taxol and I have been using a nylon wig cap under the cold cap to keep my hair out of the velcro. It's still mighty cold and I have been taking vicodin and ativan at the same time that I put on my first cold cap to get through it. What I wanted to ask is am I compromising my results by using the nylon on my head. It's thin, but it's there. Thanks for any advice you can offer.

    · Share on FacebookShare on Twitter
  • Laura5133388
    Laura5133388 Member Posts: 577
    edited May 2013

    jc254, What a great opportunity to get the word out in a big way. Hope you can convince her to get more and better information out, so that everyone at least has the knowledge that they do not have to lose their hair.

    · Share on FacebookShare on Twitter
  • schoolmom
    schoolmom Member Posts: 458
    edited May 2013

    Deb - I have always seen on here to not put anything between the cap and your hair.  I avoided the velcro snags by having my helpers loosely connect velcro before putting the cap on my head.  Then they went around tightening it.  No snags.  Easy off.

    · Share on FacebookShare on Twitter
  • SusieQ_inCA
    SusieQ_inCA Member Posts: 61
    edited May 2013
    Is anyone in the San Francisco Bay Area about to start Penguin Cold Caps?  My last chemo of TCX4 is June 6 and I'd like to pay it forward and give my supplies to someone who can use them. 

     

    Here is the list of items:

     

    Coolers:
     

    Items from the starter kit:
    • Moleskin
    • Infrared Thermometer
    • Gloves for handling dry ice
    • Plastic bags (for packing dry ice in the coolers)
    • Satin sleep cap (never used - I use a satin pillowcase instead)
    • Ear Mits (I opened the package but never used them.  I think my thick hair insulated my ears enough that I haven't needed them yet)
    • Alcohol wipes (use these to help remove moleskin at end of the day and also to clean the cold caps)
    • Only if you want them as they will be gently used (4 times):  neck pillow and electric blanket

    If interested, please send me a private message so I can arrange getting the items to you.

    On a separate note, THANK YOU to the women who continue to come back to this board long after treatment to give us advice and encouragement.  I am so grateful to each of you as I'm sure you see the same questions and concerns over and over.   A huge thanks for getting me through this phase so far!

    · Share on FacebookShare on Twitter
  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited May 2013

    YES YES YES   CALL ME  my email is leslieRvillarreal@gmail.com i'm at UCSF and i start Chemo on Friday CAll me 415-999-8720

    · Share on FacebookShare on Twitter
  • makingway
    makingway Member Posts: 799
    edited May 2013

    :) That's wonderful SusieQ! I love the practice of 'Paying It Forward'. It's a great feeling to know that you've helped another without expecting a return. Look, you've already got a taker! Thank you for your kindness, I'm sure it will be much appreciated.

    · Share on FacebookShare on Twitter
  • PatinMN
    PatinMN Member Posts: 920
    edited May 2013

    Leslie, I'm sure you'll hear back from SusieQ, but in her posting she said her last chemo is June 6 - so she wouldn't be able to get you the supplies before your first chemo.

    · Share on FacebookShare on Twitter
  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited May 2013

    YEs I already ordered some  coming tomorrow but If i only keep them for 1st treatment and return them It will be cheaper. as the price goes down form $455.per month to  $100 per month if after the 4th month?

    · Share on FacebookShare on Twitter
  • tmb173
    tmb173 Member Posts: 111
    edited May 2013

    Hello ladies,

    This may be an obvious question, but I pick up my dry ice tomorrpw for chemo on Wed.  Did you keep the dry ice in your freezer or in your coolers?

    · Share on FacebookShare on Twitter
  • Rhonda2
    Rhonda2 Member Posts: 133
    edited May 2013

    Tmb,



    We kept ours in the cooler.

    · Share on FacebookShare on Twitter
  • jc254
    jc254 Member Posts: 439
    edited May 2013

    My appointment with Dr. Weiss went well today.  She was definitely familiar with cold caps and asked a lot of specific questions-how much they cost, how do do you wear them, how cold is it etc. I expressed how disappointed I was that the medical community in general seems uninterested in cold cap therapy.  We try to manage all the side effects of chemotherapy except the one that is most devastating to the majority of women- hair loss. She asked me if she could record my thoughts to share with her website staff. So she turned on the recorder and I talked- first expressing my thanks for the lifeline that breastcancer.org has offered myself and others.  Then she asked me to talk about my experience with cold caps. I spoke about the need to do a better job making women aware that there may be an option for some to save their hair during chemotherapy.  I described how periodically women will post on the cold cap forum that they just found out about the caps but unfortunately they have already started treatment.  We spoke at such length about cold caps that it didn't leave much time to discuss my radiation treatment options!  I'm supposed to make another appointment for two weeks after my chemo treatments end and I'm sure we'll continue the conversation.  Thanks all for your thoughts and input. 

    · Share on FacebookShare on Twitter

Categories