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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    Magari - i went on the Dignicap website earlier today and got all good info. Thanks for all your help! I Bought shampoo, leave in conditioner and powder shampoo that are mild and free of al bad things and started using it today. My center did not provide any info regarding the cap. I was a little upset about that since there is all sorts of care you have to do. I decided last minute to add the dignicap when I called to schedule the first treatment. Maybe that’s why they didn’t give me info?!?

    butterflyLilli- I asked my MO about the potential heart complications. I was worried too! He said that they only recommend the adriamycin if your heart is healthy enough. He said I was fine (based on my Ecco results). our MO should have ordered an Eccocardiogram to check your heart. Check with them and ask all your questions.

    Rockcity - I’m so sorry you had such a bad reaction! I haven’t done my first treatment yet, so I can’t comment on my reaction. I hope you feel better!

  • itsstillme
    itsstillme Member Posts: 48
    edited February 2018

    I had my last chemo yesterday! I rang that bell! 🔔🎉 So thankful to finally be done with 6 TC. The bad part is that my liver enzymes are so high that my MO had to decrease Taxotere by 20% and Cytoxin by 25%. Chemo’s toxic cumulative effect really takes a toll your body. I have mixed feelings about not being able to throw 100% at this %#@ cancer, but I just need to move forward to surgery and rads.

    My DH took the PCC caps to Fedex last night. My hair has really thinned maybe 50 +%, and that’s after 6 rounds of TC. But I’m happy to have what I have even though my part now runs down the back of my head. Uggh! I am looking into Toppik, which many ladies on this thread have said gives good coverage. Hang in there ladies, keep fighting....cold capping is worth it!

    Mama Felice - how are you feeling? Hope your recovering well from your last chemo

  • SoniaL
    SoniaL Member Posts: 85
    edited February 2018

    Pbello, that's right...you want clean hair when you put on the Dignicap so I usually washed the morning of chemo (or you could do it the night before). They will have you wet your hair at the infusion center and part it down the middle. The timing of when to put the cap on is a little different between AC and Taxol (because of pre-meds), but my chemo nurses were on it! They knew when I should go wet my hair and get the cap on. As far as enduring the cold, well...it's not fun, but I know you can do it. If you can just make it through the first 10 minutes, you'll be fine. It feel painful and claustrophobic at first, but hang in there for 10 minutes and you'll be good! Wear layers and ask for heated blankets. Also - the chin strap on the cap is very tight. Take a yoga strap and thread it through the chin strap, then you can pull the yoga strap down tight under your legs and it keeps the chin strap from being so tight at your neck. Hope it goes well!

  • SoniaL
    SoniaL Member Posts: 85
    edited February 2018

    Pamela23...I'm 4 1/2 months PFC and just experienced another eyelash loss. I was so excited when they came back in December! I was using LashBoost and they were growing so well, then all of a sudden a week or so ago I realized they were super short in the middle. I actually had to trim the lashes at the outer edge of my eye because they were so much longer and it looked really weird. So now they're all super short again and I can barely put mascara on. So you've had this happen multiple times? I wonder how long till we just get to keep our eyelashes? I think my brows have thinned too but at least they haven't all fallen out like during chemo. I quit using the LashBoost for a while since I've read it works by interrupting the growth cycle. Thought maybe I should just let them grown on their own for a while? If you hear of any other tricks to help the lashes, let me know. I'm glad to hear your hair is getting thick again. I had to cut off my length so I've got a short cut now but the thickness is slowly coming back.


  • LoveAndLight88
    LoveAndLight88 Member Posts: 70
    edited February 2018

    Hi cold cappers !

    So it’s week 3 post EC infusion, mums second Infusion is tomorrow.

    Her shedding started 3 days ago but this morning was not great... her hair just kept falling out and she has a little bald patch at the back. The crown of her head still has hair and I hope it stays.

    Below is a photo is of all the shedding this morning. Do you think there is any point to continue with cold capping of this much hair is already fallen ?

    Kindest

    Sarah x


    image

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    Dearest Loveandlight, your poor Mum! Did it fall out on its own, or did this come from a combing? All and all, I may have lost at least 50% after 2nd round (going for 3rd round on Monday) but I never did a massive comb through and I am constantly finding hairs all over me and pretty much everywhere. If you go to the January chemo thread you can see a photo of me, not really showing any loss, but then you would have had to know my head prior to capping. It is pretty evident at the scalp line.

    I wrote to Dignicap to ask about getting the newer caps. Here in Europe we have the old caps that leave too much room. This is what the guy wrote back "The Click Caps you are referring to are brand new in the U.S., we are currently in the process of rolling them out across the country to all our facilities. This will take a few more months to complete here, after which we will start to offer them internationally.

    Yes, the very top of the head is the most common area for shedding, what you are experiencing is normal. If you feel the cap is not touching your scalp you may want to try a larger size cap, or perhaps add some padding at the very top, in between the silicon cap and the neoprene cap to apply pressure."

    I will stick my ankle weights between the cap and neoprene cover.

    Have your mom try it again. Don't be discouraged, they say that EC is pretty harsh and doesn't have the same guarantees as CT.

    As long as she is comfortable leaving the house, or getting a partial hair topping piece, the cold cap will protect the follicles and hair growth will be easier and quicker.

    xx

  • LoveAndLight88
    LoveAndLight88 Member Posts: 70
    edited February 2018

    Hi Amelia !

    Thank you for your concern ! So she had put her hair in two braids but it kept on matting / dreading so she couldn't bare not brushing out the matted clumps, so she's ended up combining it out but sooo much came out. She's basically lost the hair at the nape of her neck lower head and overall thinning everywhere. She has a good amount on her crown and on the sides still.

    She’s using the Paxman machine, her onco said it should be able to help save atleast 50 percent of her hair but at this rate I’m not quite sure but then again I don’t want her to give up. Her 2nd EC infusion is tomorrow and I hope the shedding calms down.

    xxx

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    SoniaL - how long was the post infusion time with the cap during the weekly Taxols? I do 2 hours post infusion on the EC and am hoping that the weeklies will cut it down some! Not like I have anything else planned for those days, but still!


  • MamaFelice
    MamaFelice Member Posts: 165
    edited February 2018

    Good morning ladies! So great to see so many of you supporting each other as you begin your chemo and capping journey! I am just over a week PFC and finally coming up from it-- as the cumulative toxicity really does take a toll, and recovery has been slower. HOORAY ItsStillMe-- last chemo for you too!! We made it through the 6TC!! I laughed how you mentioned the Fed Ex box, as my hubby had those caps wrapped, packed, and shipped by next day! Capping was his mission through all of this and he was thrilled to move them OUT! My liver enzymes were elevated too, but not enough to where they adjusted the drugs I guess. Do you know what the #s were-- curious how close I was to yours. How has your WBC rebounded? I'm expecting to hit that post chemo nadir any day when I can feel it dropping significantly again.... nap city here I come! With each symptom that presents, I just smile acknowledging it is the last time I have to deal with it! Right now I am in the puffy/swollen face, legs and feet phase-- apparently it is from the Taxotere. Does it happen to you? Recognized it most the last 2 infusions. I also had a huge shed the first several of days after infusion 6, and then it tapered off. Not sure how many more big sheds my head can handle. I too have lost at least 50% all over....no noticeable bald spots except one along hairline behind my ear.... mainly just overall volume. Only time will tell over these next couple of months. I'm curious as to when shedding will stop, and when new growth will come back underneath. Let's definitely keep checking back here with one another!

    I loved seeing pics of MJPow! Looking beautiful! Depending on what I end up with when shedding stops, I know I will have questions regarding extensions if they are an option. Stay healthy and beautiful!

    Amelia-- loved your comment about gravity vs hair on your new rebounder! I have one too but have not used it as much for that exact reason! Ha ha! I def need to get back to bouncing for sure! Glad to hear you are tolerating your EC infusions well! Those will be the toughest on your hair. You have Taxol after -- right? Many stop losing with Taxol and even start growing back hair. Keep it up! 👍🏼😃

    Butterfly-- Good luck with First Chemo today!! You've got this! Focus on the capping process and it will be done before you know it! Stay on top of your anti-nausea meds and get rest! You mentioned your fear of adriamycin. The docs wouldn't give it to you if your heart couldn't handle it. I received it 25 years ago to treat lymphoma. Just saw a cardiologist the other day and my heart appears very healthy.... though my MO would NOT give me more adriamycin to treat my BC because I had already had the life limit before complications can occur. You got this!! Sending hugs! 🦋🦋🦋

    rock city-- Hate to hear how your 1st treatment caps made you so nauseous! First of all-- congrats on 1st chemo behind you! In all my time following this board, I've never read of anyone talking about such extreme nausea. I was advised to take 2 Advil and an Ativan morning of infusion, and I did, and I never had a problem with headache or brain freeze. By the end of all the post infusion capping I would be totally exhausted from it all, but not nausea throughout. Have you been sensitive to cold before? Perhaps contact the capping company and ask them. Hope it was a one and only time to have to deal with that! Hope you get to feeling better real quick!

    Loveandlight-- Wow-- that was quite the pick of a big pile of hair! You said your mum is 3 weeks post 1st infusion which would be the exact time of her "big shed". My question is-- was the hair amount in the picture just from one comb out, or a pile you were keeping over the course of several days of combing? Or had she not combed at all in several days and finally did with that result? I comb out every morning and often in the evenings before bed and each time have a nice pile of hair in my sink....and if I gathered it over several days it would probably look like your mum's pile. Her shedding should definitely taper at this point....and Try not to let her hair get matted-- I have read of others that made the mistake of not combing regularly and had to cut out matted hair. I'd start by using spray on conditioners in between combing, and a good leave in conditioner after washing to soften it and prevent matting. Good luck and let us know how she does with her next infusion! You are a wonderful daughter to be helping her so much! Giant hugs to you!! 😘😘

    Whew! Took me a while there to catch up! I'm off to take another shot at some shut eye! I'll be back with some pics again soon! Happy Hairing everyone!!

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited February 2018

    Rockcity,

    Sorry you had so much trouble with the caps your first round. Maybe try the sedative before you go in and consider some Ibuprophen ( I took 800 mgs my first 2 times).  The nausea could be from the chemo as well, check that you are getting the bests meds through you IV.  May I ask where you are getting chemo? I am in SE MI, would be glad to help you with round #2 if it is close enough. Sometimes it helps to have an alumni there to cheer you on and offer tips.

    Anne

  • LoveAndLight88
    LoveAndLight88 Member Posts: 70
    edited February 2018

    hi cold cappers,

    We just left the onco office and they said that my mums hair won’t last with the cold capping and there is no point to continue.

    It’s a little disheartening because her hair stayed on so well for 3 weeks. She has her 2nd ECchemo today.

    Her hair is shedding ALOT. Her first EC dosage was very High they have lowered her dosage today a lot perhaps that would play a role in mainting the rest of her hair ?


    Xx

  • LoveAndLight88
    LoveAndLight88 Member Posts: 70
    edited February 2018

    Hi Mama Felice - it was a one big shed after one combing session. Even tho her onco said not to bother, she's still going to go through with her second session of cold cap ( another's onco was passing by her room and told her that because she still has a significant amount of hair still that she should give it another go.

    So here we are, second EC infusion and cold capping away ! Positive energy ! Second you big hugs !

    Hi Amelia - Mummas EC infusions are 3 weeks apart and she’s doing 3 sessions of it. Then will start a weekly taxol infusion for 12 weeks ! So far she’s handled the EC well no nausea no vomiting she’s just achey and fatigued for a few days. How are you finding the EC so far, your treatment is more or less the same an mummas. Sending you positive energy ! X


  • Herohs
    Herohs Member Posts: 2
    edited February 2018

    Hi,

    I just went through the first session of chemo with cooling cap last Thursday. When the session ended and thecap was removed my hair was not freezing cold. This frightens me if that was working properly. Can you please share your experiences?

    Thanks

  • magari
    magari Member Posts: 335
    edited February 2018

    PBello - Glad the Dignicap link I gave you provided helpful info. It makes me mad that your treatment location didn't give you all the info themselves though. They are charging you money to use the machines, correct? Seems like the least they can do is give their paying customers all the details they need to have a successful experience.

    Rockcity - So sorry to hear you had such a tough time with Round 1. Was the prechemo infusion you receive Emend? If not, ask for it next time. Not sure what chemo drugs you are receiving, but there were new guidelines issued by ASCO in July that recommend it be included for most types, along wih various other anti-emetics. Please make sure you are getting everything you should be! http://www.breastcancer.org/research-news/updated-asco-guidelines-on-antiemetics I take Decadron and Zofran on a schedule surrounding my my infusion days and have Compazine to take as needed. Also take an Ativan before I leave for my infusions - can't hurt and may help....

    My scalp dermatitis, which was about 85% better, had gotten worse again over the last several days. I've been madly applying the prescription solution I received and using dandruff shampoos every other day as my dermatologist instructed, but was still dealing with significant flaking and scalp residue. Bought Neutrogena T-Sal shampoo and used that this morning and it is the first time my scalp has felt truly clean since I started cold capping and stopped washing my hair every day. (Which feels wonderful, I must admit!) The inflammation I was having should now be much better, which will hopefully limit any further shedding.

    This whole thing has been very stressful. I am breaking every rule in the book by washing "too often," not using natural shampoos, applying chemicals to my scalp and rubbing them in with my fingertips, etc., etc. But have no alternative and it's the only way to hold on to what hair I have left. Fortunately, doing all of this seems to be helping rather than harming my hair, under my specific circumstances.

    Wanted to recommend Cover Your Gray Fill-In hair powder to those who are trying to disguise thin spots. (I have tried Toppik on the thin patch on the top of my head and have been unable to make it look at all natural; I end up with clumps of the fibers in some areas and not enough coverage in others.) I find being able to apply and blend this product with a brush much easier and more accurate. It's also much cheaper than Toppik, and you don't need much. Available in single or 2-color compacts. https://www.amazon.com/Cover-Your-Gray/b/ref=w_bl_hsx_s_be_web_2587767011?ie=UTF8&node=2587767011&field-lbr_brands_browse-bin=Cover+Your+Gray

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    MamaFelice- I did not take any Ativan or Motrin/Tylenol before my infusion. I felt pretty good when I showed up and figured I could do a 10 minute brain freeze. Ummmmm.. Wrong. I don't think the chemo was to blame. Maybe it was the immediate hyperventilating that started the nausea. I kept getting sick each time the cap changed then would recover. At the end of seven hours, I was so wiped out. I had been given Aloxi in my IV prior to chemo. I will try Motrin and Ativan prior next time. I will also talk to the PA in next week follow up. I’m so scared to be nauseous during chemo next round. The infusion nurses are already planning to give me more privacy next time. Vomiting must be bad for business🙁. After calling PCC I also figured out that husband had been putting the caps on a little too cold. Grrrrrrr..

    Magari-I’ll check into the Emend and why they use Aloxi instead. Price maybe? I hope your scalp continues to feel much better.

    Lovesgreenthings (Anne)- I definitely need to try something different next round, otherwise the anticipation of coldcapping may be enough to make me feel sick to my stomach. I live and am getting treated in Macomb, MI. I would love to hear your experiences of how you managed this.

    MamaFelice- thank you for reminding me that I actually finished round one. I got so caught up in the queasiness of it all Tuesday, at the end of the day I never took a moment to realize it was done! Your advice, beautiful pictures and words of encouragement on this thread the past few months help us all

  • SoniaL
    SoniaL Member Posts: 85
    edited February 2018

    Amelia01 - yes, the post infusion time is shorter with the weekly Taxol. I did 3 hours post-infusion with AC but then it went down to 1.5 hours with Taxol. I was so happy! I will say, if they will let you keep the cap on a little longer, you might try that and maybe get better results than I did. But I know what you mean - nothing else planned for the day, but still, getting that cap off is like getting out of prison so the sooner the better!

  • MamaFelice
    MamaFelice Member Posts: 165
    edited February 2018

    Thank you Rockcity for your kind words! We are all on this journey together, and I have found this thread a place where I can focus on my effort to control something positive in the midst of all the negatives. I really hate to hear it was that bad of an experience with each cap. May I suggest you practice with one in the weeks to come before next infusion? Maybe give it a try at home freezer temp and see how you handle it. That may give you confidence to handle it colder with some ibuprofen and Ativan. Fingers crossed!! How are you feeling otherwise post first chemo?

    Sonia-- I like how you refer to final cap to getting out of prison! I capped an extra hour post infusion because it was suggested by earlier callers for thick hair, and boy was it tough sometimes to push through that extra hour! I also see you are from Charlotte-- so am I! Please PM me details on where you are being treated and such! Imagine if we have passed in the hospital halls!

    Magari--So glad your dermatitis has improved! That must be so stressful, and more stress is certainly not what you need. And thanks for the review on toppik. I have been using a different brand powder compact as well to both cover my grays that have come in around my temples and touch up in any areas that seem thin. I'll keep up with this for as long as I can.

    Heroh-- which capping system were you using? Each one has its own "rules" as to temperatures and changing times. I know my husband says I have ice crystals on my head when he is changing the final caps, so I would think your head should definitely be cold in the end. Is there a support person you can call? Good luck figuring out what the challenge is.

    I'm happy that my shedding has tapered off again and I am back to my usual daily amount. Do any of you find that your scalp hurts by day 5 of not washing it....the kind of hurt you get from wearing a ponytail way too long. Mine will be so achey that I just can't hold washing off for another day, and I find relief once it is washed. I love wash days! Can't wait to get to that sweet spot PFC when I can wash it more frequently! ☺️🙌🏼🦋


  • MamaFelice
    MamaFelice Member Posts: 165
    edited February 2018

    Almost forgot.... Loveandlight & Mum-- I'm so glad you gave it another try! Though that was a big shed of hair, it should not happen again. Do your best to avoid tangles and mats. I can take pics of some of the products that I have found to help me if you need. Silk pillow case is also a must. It is great that she now has 2 EC behind her and only 1 more to go! After that, the Taxol will be much easier on her hair. You guys got this for sure! 2 down-- yay!!! 💪🏼❤️

  • Herohs
    Herohs Member Posts: 2
    edited February 2018

    Hi MamaFelice, I used Paxman but they never changed the cap during treatment. Was I supposed to do that? I am getting very stressed now. Please let me know the way they did it in your session.

    Thanks

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    hi ladies!

    Mamafelice- congratulations on being one week PFC! It must be an amazing feeling! :)

    Rock city- hope your next cold cap experience is much better! Definitely talk to the MO about this.

    Love and light-I'm also glad you and your mom are not giving up on the cold cap. I hope her shedding stops!

    Magari- happy to hear you got the dermatitis under control again! And that you feel like your head is clean!

    I'm not happy about the lack of upfront information from my cancer center about chemo. Hopefully on Monday (my first infusion day) they will provide more info.

    I have read all your comments and tried to base my approach to cold cap from you guys and from the Dignicap website. On Monday, I will wash my hair before going to the center, take some tylenol or Motrin 30 min before putting cap. How much should I take? Should I keep taking it throughout the day (as per directions on bottle) or just that first time before cold capping? Then make sure I wet my hair and part it in the middle to put cap. Afterwards, I will only wash my hair twice a week (or should I do it only once a week?). Using cold water at low pressure? I got a silk pillowcase and hair nets to keep shedding in check. I can't use hair ties or anything that can pull on hair. Use wide tooth comb once daily carefully to avoid knots build up. Avoid getting head hot from sweating. On days I don't wash hair still use coldish water so no steam around my hair (and do not use showe cap?)? I can use dry shampoo if hair starts getting too greasy. Also use castor oil for brows & lashes.

    Am I forgetting anything? Any recommendations? Sorry so many questions. I want to make sure I am doing the most I can to help save my hair. Thank you!

  • coachvicky
    coachvicky Member Posts: 984
    edited February 2018

    Haven't posted here in awhile..,

    I had a second opinion to review my treatment with an out of state Oncologist. I wanted someone who did not know me, my center, my doctors to review everything I did. I got peace that I did everything possible and my odds are great to beat this.

    During the appointment I also met with Nurse Practitioner who complimented me on my hair. We shared (DH was with me) that DH used gel caps on me and I only loss about 40% of my hair. NP said she use to think "it is just hair and patients should get over it."

    I sat there listening. Then I said you realize you can lose ALL your hair?

    She said she "got it." She said she realized it was not just losing hair ... it was every time a woman past a mirror ... every time a woman put on make up ... every moment a woman is reminded she had / has breast cancer from the condition of their hair.

    I am not sure what changed her but I am sure she is a great NP who understands her patients. She got me and supported the choices we made. I share this to explain why I think my MO Team didn't get it. BTW we were the first people to use gel caps at the center I went too.

    When I first lost my lashes, my Oncologist's Nurse Navigator called and said my MO was "uncomfortable giving me an Rx for Latisse." I said he's uncomfortable? He is the one uncomfortable? I went on for a few minutes and Nurse said she was just telling me what he said. I got a call the next day that the Larissa Rx was waiting at my local pharmacy. I think she had a come-to-Jesus conversation with him!

    Looking back I have realized that interpersonally I never really connected with my MO Team. Sure, they were extremely technically competent but I think the reason I questioned every thing they did is because I did not connect.

    I (we) connected with the second opinion team and so much so that my Primary Care will handle my Rxs, scans, injections,and I will annually see the second opinion team.

    It is so much more than hair.

    Coach Vicky





  • SoniaL
    SoniaL Member Posts: 85
    edited February 2018

    Pbello...sounds like you are ready! I think you've made good prep and will do great. I washed twice a week for a while but cut back to once a week after my hair got super thin. I think you could do twice a week, it just feels better but wash days are emotionally hard because you do lose a good bit of hair. Wishing you all the best.

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    coach Vicky - thanks for your story! It’s great to hear stories of those who have gone through this and let us gain some insight from their experiences.

    SoniaL - I appreciate your response! Makes me feel like I’m ready for Monday. Thanks also for the info about wash days. It will help me get emotionally prepared for it. Thanks so much!!!

  • Willow22
    Willow22 Member Posts: 104
    edited February 2018

    Hi Pbello,

    you sound ready and will do great with capping! A couple things from my experience with penguin cold caps (I'm 4 months PFC now):

    - water for washing your hair just needs to be tepid - so slightly less than body temperature. You don't need it to be cold, since your scalp and follicles are at normally at body temperature.

    - yes, wash your hair with very low water pressure, or even better, put a small amount of shampoo in a water bottle and gently mix it. Use ph balanced shampoo without harsh chemicals, in a clear rather than milky/opaque formula (I really liked the Kenra clarifying shampoo I bought and plan to continue with it even after all my hair precautions are over). Use low flow from your shower or a cup of water to wet your hair, then gently pour the mixed shampoo and water all over your head. I gently patted a bit on my scalp, but never used my finger tips to rub or scrub my head or hair. I was trying to be as gentle as possible on the hair follicles, and also to prevent tangles. Rinse by pouring water over your head and letting it flow down and thru your hair. DON'T tip your head over to wash or rinse (in the shower or over the side of a bath tub or sink)!!! Several women on this site have reported terrible tangles from doing this, especially if you have long hair. I know this doesn't sound like it's going to do much without sudsing and scrubbing, but I found it really effective for getting my hair and head clean. Gently blot hair dry with a soft towel or wrap with a microfiber towel, but again, don't flip your hair over to wrap it up.

    Use a leave in conditioner to detangle before combing (I liked Kenra daily provision leave in conditioner), and would also use it to refresh waves between washes.

    I used nicely warm water to shower after washing my hair, or on non-wash days, but not super hot steamy water. With the fan on and the way my shower is set up, it didn't get very steamy.

    I did use the softer ribbon hair ties to make a loose ponytail when I hit the big shed stages - I just couldn't deal with the amount of hair continually on my clothing, but didn't want to wear a hair net in public.

    If you are interested, I would be happy to email you the "hair care tips" provided by Penguin cold caps. The information about washing your hair right before chemo and the capping process will be different than your Dignicap directions, but you may find the basic hair care information helpful.

    Sending you hugs and sunny thoughts for an easy chemo and capping day tomorrow! You've got this Smile

    Willow


  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    Willow - great advice! Thanks so much! This really helps! If you get a chance, please do send me the hair care tips you got. Thanks for the good wishes for tomorrow!

  • LoveAndLight88
    LoveAndLight88 Member Posts: 70
    edited February 2018

    Hi cold cappers !

    Update - mums shedding continues but not as aggressively as a few days ago.

    Unfortunately she now has big bald patches at the crown of her head, the back of her head and she's lost the hair at the nape of her neck. She still has hair overall it's just very thin now.

    I came across this product on amazon called keratin natural hair fibers, has anyone used it before ? It 100% natural, its a product for those who are going through chemo and have alopecia.

    As mum already has hair all over still I was thinking would this be ok to use to cover any of her patches.

    Would love to know your thoughts !

    Link for the product below x

    https://www.amazon.co.uk/gp/aw/d/B00W86C5YS/ref=cm_cr_arp_mb_bdcrb_top?ie=UTF8


  • Willow22
    Willow22 Member Posts: 104
    edited February 2018

    Hi Love and Light,

    Glad to hear your Mum's shedding is slowing down, but sorry to hear she has such large bare areas! I wonder if the keratin product you listed is the same as what the Rapunzel Project lists on their "helpful tips" webpage (http://www.rapunzelproject.org/ColdCaps.aspx#HelpfulTips):

    22. If you are looking for help camouflaging thinning hair, once all chemo treatments are finished, consider Nanogen Keratin Hair Fibers,

    I don't know why they say to wait till all treatments are finished. Maybe one of the women on this thread has used it during chemo and can give feedback, or contacting Rapunzel project would give you more info about when it is ok to use it.

  • MamaFelice
    MamaFelice Member Posts: 165
    edited February 2018

    Dropping in to send Big GOOD LUCK wish to Pbello!! Sounds like you have everything all set and ready! You got this! Looking forward to hearing how it all goes! Sending strong hugs! 💪🏼💪🏼💪🏼😃


  • red332
    red332 Member Posts: 47
    edited February 2018

    Good morning all!

    Magari, so glad to hear that things are going better for you.

    Loveandlight, so sorry for what you and your mom and going through...this is all hard enough without stress and disappointment about capping, but I know EC is very tough on hair so I don't think it's anything she did (or didn't do) that caused the problem.

    It'sstillme--congrats on being DONE! I know it's hard not to second guess about the last infusion. I hope your body rebounds quickly. I just had a post-chemo surgery (re-excision) and my body reacted pretty much the same as for my pre-chemo surgery, so hopefully yours will too.

    Pbello-twelve treatments is hard with the cold cap, but gets easier over time. i've posted before about what helped me, but the short version is Tylenol and Ativan prior to capping, warm clothing (esp socks), and several thermacare heat wraps on your torso under your clothes).

    Someone here had asked me to provide the info on what I did to prevent/alleviate SE's from Taxol, but I had surgery this week and wasn't able to respond right away and now can't find the post. Please let me know if you still need the info (or you can click on my username and you should be able to see all my recent posts in this group, i think).

    Question for the veterans: how long did you wait PFC before you used root powders? I am desperate to cover my gray but will only be 3weeks PFC tomorrow. I haven't had any "big sheds" but am still losing hairs every day. hard to know if it's more than normal hair loss, though. prob have 75-80% of my hair (started with a lot).

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    thank you so much MamaFelice! Nervous but want to get this 1st one over with! You’re message helps so much! I’ll check in later today! Hugs back