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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited July 2017

    Mari-oh I see. So maybe you saved yourself from metastatic? Or the tamoxifen losses effectiveness? And /or there were cells left behind that were stubborn.

    I also hear that there is a test to see if tamoxifen will work for a given person. I. Looking into the test. Don't want to take tamox if I'm resistant I will go with ovarie shut down and AI. You could have been tamox resistant I think it's rare though? There is also loads of things like benedryl and Prozac types that I read will interfere with the tamox.

    I did biotin during chemo and then/now viviscal with extra biotin. My hair is coming in fast strong, darker, and thick.

    Hugs


  • Pamela23
    Pamela23 Member Posts: 394
    edited July 2017

    Elastogel-- I definitely won't be cutting my hair but somehow it seems thinner every month although I don't see it happening. Nothing note worthy in my comb anymore. I hope the worst is over. It's so see through when the light is behind me! I really need to get Visical and I want to add some essential oils like peppermint and rosemary to add to my shampoo and stimulate me scalp.

    https://draxe.com/essential-oils-for-hair/

    I have the same reluctance with the tamoxifen--hate the thought of a chemical in me for 10 years. I picked it up last month and just got a call from Walgreens reminding me of my refill but I haven't even started the first bottle yet. I wanted a few months for my body to heal. I had my estradiol taken in May and it was 16! It was close to 200 beforehand. So I figure with chemo & radiation and low estrogen levels, I could afford a couple months to heal before putting another chemical in me. Mari has a valid point and it's a wake up call for me since I come from the school of thinking as GoKale. Mari--was it the same breast as before? Same type? I don't see any footnotes. It'd be great if you could add them to show others that it CAN happen no matter how well we take care of ourselves. I am like Elastogel in that I exercise, eat well, don't drink, steady weight. I'm a registered dietitian and have always lead a healthy lifestyle.--drank green tea daily, blueberries daily. The stress was "normal mom of 3" stress. But there was room for improvement. I cut out the parabens and have switched to a plant based diet with organic grass fed beef and chicken. Cut out eggs and most dairy. Eat a ton more vegetables, beans, seeds and nuts. Letting things roll off my back now instead of being a control freak.

    The eye opener was today--my 1st mammogram since this whole thing started. They took images and had me wait. Then called me back to do another image--on the GOOD breast!! Then an ultrasound on the GOOD breast. They kept hitting 1 spot and I felt like I was going to throw up. Longest 5 minutes ever!! I was praying up a storm--calling on all angels, all my dead relatives, anyone who would listen! Then she came in and said all clear and the dr took me into his office and showed me a white spot that had shown up on my image. Once they redid it and smooched it more, it disappeared. It had only been my dense breast tissue that had overlapped with other tissue. They utrasouneded just to double check. THAT is when I decided I need to start my tamoxifen sooner than later (ok, I may give it a couple more weeks) but I WILL do it!

  • Willow22
    Willow22 Member Posts: 104
    edited July 2017
    Mari I'm so sorry to hear about your recurrence - sending a big hug and healing thoughts your way!


    I'm an odd duck in that my 5.5mm IDC tested as ER positive, but only7% and very weakly stained at that. My MO said the oncotype dx results show that tamoxifen will have no impact on the tumor because there are so few estrogen receptors , and that for treatment purposes it is a triple neg cancer. A consulting MO told me they don't give tamoxifen for ER+ less than 10% because there aren't enough estrogen receptors on the tumor to make it helpful.

    If you are deciding about tamoxifen therapy, has your MO talked about your ER+ score and expected benefits for your specific cancer? Since tamoxifen attaches to the tumor's estrogen receptors so that they are blocked off and estrogen can't attach and stimulate the cancer cells, it seems like the higher the ER+ percentage, the more effective the tamoxifen would be (i.e., an ER+ score in the 90% range might have a higher degree of treatment benefit compared to a tumor that's only 25% ER+). Hopefully you guys can get info and stats specific to your tumor to make this tough decision!

    Since my tumors are triple neg, there aren't any hormonal or targeted therapies available. I fall in the "consider chemo" category in addition to radiation and surgery, and while the benefit percentages are small (I think 3-4% better 5 year survival with chemo), I decided to go ahead with it. It's a very personal thing, and for me, it is important to know that I've done everything possible to prevent recurrence (which is very likely with TNBC). It doesn't change my odds dramatically, but I think it will give me greater peace of mind and less stress as I cope with the first 5 years of monitoring/waiting/worrying.
  • Radmonkey
    Radmonkey Member Posts: 38
    edited July 2017

    imageI bought this toppik instead of the dry toppik. Is it ok to use this?

  • Pamela23
    Pamela23 Member Posts: 394
    edited July 2017

    Willow--what was your Oncotype Dx score? Mine was 28 which prompted 4 rounds of TC. Took my distant recurrence chance from 18% to 12% which I thought was 6% drop but really a 30% drop in my chances. I was 100% ER+ and 98% PR+. Thanks for the reminder that tamoxifen will work better for higher percentages! That helps me.

  • Willow22
    Willow22 Member Posts: 104
    edited July 2017
    Hi Pamela23, I'm sorry you had to go thru that stressful 1st mammogram post treatment! I can't imagine sitting thru all that testing on your good breast, so soon after treatment.

    My oncotype score was 43... according to my breast surgeon it is one of the highest scores she's seen, even for triple negative 🙁. The one thing that is keeping me from completely freaking out right now, is that my MO told me the oncotype score is purely based on the tumor's genetic makeup and characteristics, and it does not take into account tumor size at all (mine were only 2mm and 5.5mm, so we caught them really early). I'll see my MO to talk about everything this week before starting chemo, but knowing how aggressive it is, she may switch me to AC + T since hormone and targeted therapies won't help at all. Triple negative is most likely to recur/metastasize in the first 5 years, and then the risk goes down significantly. My surgeon also said TNBC often travels thru the blood stream rather than thru the lymph node system, so I'd rather hit it with the big guns now and hopefully wipe it out thru out my body. I'll also have radiation for local control.
  • Mari-
    Mari- Member Posts: 57
    edited July 2017

    willow- I am with you, do all you can! I am glad they picked that up so early! We need to do what works for each one of us. The chances of my node neg less than 1cm, low grade cancer were 1-3%. With no family hx, 41 yo..... really low chances! I still took my tamox!

    Pam- my oncotype was 24. And lees than 1cm So small but being a recurrence and grey zone on the oncotype they decided on 4 TC. And then rads

    Elastogel- I have being trying the signature thing! I was able to add some but can't do the tx! Yes my cancer is same breast, same area of the breast! First one was picked up by mammography, recurrence was picked up with a shower. I felt a little corn! It was so superficial since I had a BMX, there was no place to go! My hubby kept telling is a pimple! Ultrasound showed the area and the doctor told me" it is fat necrosis" very common......until we got the biopsy!

    There was a new study released, I believe, it was a clinical trial done here in the us to compare tamox and AI w ovarian suppression. that shows AI more effective than tamoxifen. They need to induced menopause in order to give you AI. I can't find the study, but I was glad that my MO suggested that. I try not to think of tamox/AI being bad. What feeds your tumor is the estrogen, estrogen is what you need to block fron your body! Tamix and ai are blockers! Pls check w Mo about it meanwhile i will look for it and post!!

    BEs of luck to all of us

  • Fastgirl
    Fastgirl Member Posts: 65
    edited July 2017

    Radmonkey--I have not seen this Toppik product before. I have used the powder in the shaker container, and it works really well. I have also used the Loreal temporary spray color, and I don't believe have suffered any ill effects from it. But of course, all of that was against PCC protocol. But I used it for half of my treatment, and since I finished also.

    I recall others have posted about a crusty area on their scalp, like cradle cap? Anyway, I am 13 weeks PFC, but am aware I have this crusty area near my crown where my hair is thinnest. Today, I felt what seemed like a crusty piece that was loose, so I pulled it through my hair, and it pulled out about 15 strands of hair with it! OMG. Does anyone have a solution for how to soften this area without pulling out hair?

  • Mari-
    Mari- Member Posts: 57
    edited July 2017

    I have not seen this toppik either. I found the powder like one at target. I did not use the applicator.

    Oh sorry for the crust! Not looking forward to more loose hairs. What about tea tree oil? Also I read some using castor oil??

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited July 2017

    Hello Cold Cappers!


    I thought it might help some of the newbies to hear how things turned out for me with cold capping. I started on February 28th and last chemo was July 12th, yea!! AC DD x 4 and Taxol x 12. I used Penguin Cold Caps and have about 50% of my hair with an inch of new growth all over. No bald spots, just overall thinning where the cap was not snug enough and of course hair that was old and going to leave anyway - now it is coming back in.

    I followed the timing PCC instructions to a tee however I did wash my hair more often (maybe once a week more and more of a rinse just to get the gunk in between chemo sessions.) I also just recently (PFC) used a demi-permanent dye on my hair but avoided the roots. My friend did it for me BECAUSE the other dye I used turned my hair a horrible red. It is NatureTint (sp) and just did not do it for me. I am a brunette with former blond highlights. I have not had any shedding since about #6 Taxol although I had been plenty worried about it. No further shedding with the dye job either although it is only 2 weeks out from that so will let all of you know if I wake up bald one morning. Hope not. :)

    I am taking Biotin daily. I bought the silica but never used it, might start but my MO was not excited about that during chemo. My hair is damaged for sure but the demi dye hides some of that. I wear it up in a modified French twist with a little clip in the back and it looks ok for now. For me, the gray coming in was making the hair look thinner and really bad so putting a color on it was worth it.

    And good luck to all the ladies considering Aromotase Inhibitors, it is a big decision for sure. Wishing you all SE free years.

  • purplestargazer
    purplestargazer Member Posts: 31
    edited July 2017

    Hi fellow CC'ers. Just checking in after Round 2 of AC. So far no shedding yet but I know to expect some. I'm using Penguin Cold Caps.

    I met this woman in the chemo room who had such an interesting contraption. She made it based off of the Dignicap model.

    She combined an Elastogel Cap with an Aqua Relief System : https://www.amazon.com/Aqua-Relief-System-Therapy-...=sr_1_6_a_it?ie=UTF8&qid=1501026067&sr=8-6&keywords=aqua+therapy+equipment

    + a temperature gun to make sure it was keeping to the prescribed coolness. I'm thinking of finishing out AC with penguin and switching to her system for Taxol. Did anyone here successfully use an Elastogel cap on Taxol?

    I don't mind paying penguin's fee but the 5 hours of cap switching post chemo is just so taxing. She leaves this on for one hour and her hair was perfect after 5 rounds of T. I think I'd still leave it on for the penguin prescribed 4 after taxol but not having to do the ice rotation, etc. would be a blessing.

    I also wanted to note, for those who have asked, that I found it VERY easy to do my own capping after chemo. I leave myself 5 min between cap changes to rotate everything and then just put it on myself. Not hard with a mirror.

    Best of luck to everyone going through this process!

  • kcmc
    kcmc Member Posts: 66
    edited July 2017

    Can any one give me a list of shampoos that I can use day 3 after chemo and during chemo. I am looking online and can't find anything can someone recommend a shampoo that I can order on Amazon so I can have it delivered on Thursday/Friday in the correct ph balance. My first chemo is tomorrow, I have everything else except shampoo. Thanks for any help provided.

  • Willow22
    Willow22 Member Posts: 104
    edited July 2017

    thanks for all the feedback everyone! First chemo is friday, and were going to do a trial run to practice fitting the caps on weds.


    Kcmc, the rapunzelproject.org website says that kenra clairfying shampoo is ph balalnced within the range recommended by penguin cold caps, and kenra daily provision leave in conditioner and detangler is good for cold cappers. Since kenra is a sponsor of the nonprofit site, i asked for feedback here and several folks said they were very happy with it while capping. I have fine hair, and am so happy with both products i plan to continue with them after treatment is complete! Got both on amazon for great prices and fast prime delivery. Good luck with chemo and capping!

  • Radmonkey
    Radmonkey Member Posts: 38
    edited July 2017

    thank you so much for your replies. I got the powder toppik but I haven't used it yet. I'm going to need it soon. I've had 4 dd AC and 1 dd taxotere. I'm still shedding.

    I get the scalp flaking. I obsessively pick it and get a few strands with it. I try to stop. I get so much "dandruff" from it. I thought it was frost nip but someone has said it was caused by the chemo. If I did not pick it, would it prevent or clog my other hair from growing?


  • kcmc
    kcmc Member Posts: 66
    edited July 2017

    Willow22 Thank you so much for the info just purchased it on Amazon. I couldn't find it on the Rapunzel Website and did send an email to them last week but never heard back from them. Thanks again! Reasonable price too.

  • Fastgirl
    Fastgirl Member Posts: 65
    edited July 2017

    KCMC--a lot of women on this site have used the Acure clarifying shampoo, so you could consider this as a backup in case the Kenra doesn't work for you

  • MJPow
    MJPow Member Posts: 74
    edited July 2017

    I have my last chemo tomorrow! 4 AC's and 12 taxol! I barely have any of my old hair I used penguin but my new hair has been filling in especially in the front.

    I am so grateful for all you ladies! You are my heros!

    I never used a wig and most of my hair stayed till about taxol 5 or 6. There was a few weeks where it was extremely thin and toppix was used to cover the balding spots. I have different lengths all over and I'm looking forward to it growing longer.

    I cried today at my last blood draw... happy tears

    Hang in there this is only a moment in time ❤️

    1 pm tomorrow last chemo!!!! So thankful

    LoveMJ

  • Radmonkey
    Radmonkey Member Posts: 38
    edited July 2017

    good luck MJ

  • Pambc010417
    Pambc010417 Member Posts: 89
    edited July 2017

    MJ- Good Luck tomorrow on your last chemo! It's such a great feeling! I'm 4 weeks post chemo and feeling better everyday. Taste buds are starting to come back.


    Sherryowang- congrats on your last chemo too and your hair looks great! I trimmed my about 1/4 inch each month during my treatments and my hair has grown about 2 inches since April 15.

    I have noticed more shedding after my last chemo but I knew my day would come because I hardly shed at all after the first three treatments. Now I'm preparing for Stage 2 Deip flap surgery on August 4. Besides closing the flap in my breast, I will have revision surgery on the abdomen with mesh. Hopefully, that will be my final surgery.

    Hope everyone is doing well

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited July 2017

    hi all,

    I got my first hair color today 4 months post chemo. I did a lay on color (won't last) and a wholistic Keratin smoothing treatment..
    It is an antifrizz keratin infusion. it does use heat and a flat iron.

    The long hair is still incredibly thin but having it all match color and texture really looks better. I still need the headband to cover the sites on top and at my neck that were just bald and are now unruly.

    image

    I always post this lower photo at my low point last March...to help those of you who feel it's not going to work out. My regrowth is fantastically thick strong. I cannot not believe how fast it went from below to above. It's going to take more time still but some good hair days are here again.


    image


  • ykh
    ykh Member Posts: 43
    edited July 2017

    Congratulations MJPow!!!! So happy for you!!!!! I had taxol#5 yesterday. Still shedding a lot and don't see any regrowth yet :(

    How much hair do you estimate you lost? I am just hopping that my shedding will stop soon (like you said)...

  • toughcookie_21
    toughcookie_21 Member Posts: 60
    edited July 2017
    Hi all, I am wondering if anyone knows how much lead time the cold cap companies need in order to get me set up with all the supplies I need to cold cap. I am meeting with the medical oncologist next week to find out what treatment is recommended for me and I plan to tell him at that time that I want to cold cap. I've been told by 2 women who were treated by this MO that he doesn't support cold capping, but I'm prepared to discuss my findings on the matter and will frankly find another physician to treat me if he doesn't agree with it.

    When do you all recommend I reach out to the cold cap company in order to ensure that I'm ready to go when I start chemo?
  • Pambc010417
    Pambc010417 Member Posts: 89
    edited July 2017

    tough cookie

    - talk with Penguin Cold Cap early on but do not order until you know when you're going to have chemo. I received mine within two days but they shipped from Michgan to Indiana, which is not very far to go. They should be able to tell you how quickly they can get them to you. I just finished up with my last chemo treatment at the end of June and I probably lost 10 to 15% of my hair with Penguin Cold Cap. They have been around the longest and I feel their product is very very productive. You should make sure you have at least two days to practice with the caps before your actual treatment starts. You can watch several YouTube videos that will help you with using caps. Good luck

  • Mari-
    Mari- Member Posts: 57
    edited July 2017

    elastogel- thdnk you for posting that pics! It gives me hope! I do not like my bold spot! Your hair looks great! How long do you have to wait before coloring??

    Tough cookie- mine came very fast, with in 3 days. But I wish I had slowed down and checked PCC. I got artic cold caps. PCC seems to give better instructions and caps are different! Meanwhile you can start googling where to get the dry ice. For me it was hard! It all depended where you live!

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited July 2017

    Mari- thanks. I think you are supposed to wait at least 6 mos for Color. The new hair is very fragile. I had used a henna rinse very early on with no heat... it was barely worth it. Now this latest treatment at 4 mos which is a non peroxide lay on type color. It will wash out slowly. it did require heat and I had a flat iron keratin anti frizz treatment. I would not do this if I was still shedding, I am not shedding and haven't been shedding at all since my last chemo. I do lose a tiny amount in my brush like a pre chemo amount .i don't really look in the brush for hair loss anymore.

    Don't worry about your bald spot(s) your hair will start to sprout and overnight after chemo...those areas that are showing scalp will disappear. I lost quite a bit more hair even after that balding photo I posted. Now with normal every day hair loss (not much) my little bit of remaining hair is even smaller.... there was just so very little left at the end there! but it still appears to be a head of hair though its hard to make it look right.. I have to have the head band to disguise the sprouts and the frizzy unruly chemo curls all over the back of my head which had balded too. I don't like short hair so I'm still fighting to keep some length, I did get a trim both on my old hair and on the new frizzy curls...lots of trimming to come. Trimming for the chemo curls..they come in frizzy and the first parts are initially good for your bald but they don't help in the big picture. Luckily my hair dresser knows what chemo hair is all about. Trim trim trim in the next year.

    Good luck the hair fight continues but stil think 'not bald' is worth the effort. I had very poor results. Many of my girlfriends wantedme to cut it all off. But they haven't seen my new doo!

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited July 2017

    Elastogelgirl - Your new hair color is gorgeous! Can you tell me the brand name of the color you used? I would like very much to trim my hair now, but I will wait a bit longer. Also, I could use a hair color, but I will wait for that, too. And when I do color it, I plan to use something mild like you did.

    Has anyone PFC gone swimming in a chlorinated swimming pool? Haha, that's crazy, isn't it? I have not done it. I could buy a swim cap, I suppose.

    Toughcookie - no one at my oncology center was gung ho about cold capping, but they didn't try to prevent me from doing it. What's needed most is for the chemo nurse not to mind having the big cooler nearby. My nurse was tolerant, but that just might have been her personality - not all that happy and pleasant. I tried to win her over, but couldn't. So my point is that I wouldn't let anyone tell me no to cold capping if that's what you want to do.

    MJPow - Hurray!!! So glad to hear you are done. What a marathon!

    Sherryowang - your hair looks great! Congrats!


  • Pamela23
    Pamela23 Member Posts: 394
    edited July 2017

    Hooray MJ!!! Let the healing begin! You must be so happy to have that part over. Will you do radiation next? Please post before/after pic on the other forum of photos when you get a chance.

    Elastogel--your hair looks amazing! I have over 2 inches of new growth and have been coloring with Clairol Natural Instincts the past couple months. It makes a difference to see a shine to your hair and when your hair is more monotone, it looks thicker. I know I'm at 6 months now and can go permanent, but no reason to right now. It's my sides and hairline where I lost the most, it's really hard to disguise it. I have 2" pieces sticking up in spots.I just keep combing it forward to hide anything. I can;t headband it or ponytail it without sides.

    GoKale-- I went to Hawaii last week and did the waterside at our resort--mind you, we did NOT take the kids, just me & the hubby. I had my hair in chlorine that day and in the ocean. Didn't make a difference.


  • Vivianlu8
    Vivianlu8 Member Posts: 113
    edited July 2017

    They recommend Accure clarifying shampoo and conditioner. I bought it in Amazon delivery the next day and very satisfied with the results so far. Good luck!

  • Elberama
    Elberama Member Posts: 20
    edited July 2017

    Yesterday, in the second hour after the Taxol infusion stopped, I realized that the cap I was cycling through was on too far back. It left an inch of my front hairline uncovered. I'm freaking out that it would be enough to make me bald there. Anyone had experience with one messed up cap with Taxol? Trying not to freak out. And trying not to be mad at my husband who has been a gem through my AC cycles and these 3 weekly Taxol cycles so far.

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited July 2017

    elberama-so sorry to hear of your possible mishap.

    I can't tell you if you will lose hair there. But I want to let you know losing at your hairline can always be remedied. Please try not to panic. You are capping, it's never perfect or any guarantee but it's better than the alternative.

    If it does cause hair loss there you can use toppik there, And when you feel it's safe you can possibly wear a stylish headband to cover the area until the hair grows enough for bangs or something. Growth will happen pretty fast.

    Just ideas to help calm you. And I'm crossing my fingers that your hairline will hang in there!

    Toppik if needed can help the hairline you would be amazed.

    Bad hair days will end I promise. I lost a lot all over and I'm using all sorts of tricks to cover up the areas. I'm sure you will figure out a way. time passes pretty quick.

    Hugs e

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