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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited January 2017

    dandiloin wishes- if you are doing elastogel caps...the chin strap is not enough to get the cap tight. I don't even use it. We made a few Velcro straps for under the chin and around the brow. I also use as supper wide spandex head band. I place it under my chin and my guys pull it up over to spread over my whole head then we Velcro strap down the whole thing. The head band keeps the straps from cutting into my chin. See my previous post. And there is a gal who is pulling her caps down with towels. Do try using the caps without the shower cap if your getting your hair wet...it will stick to the cap


  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited January 2017

    Hanging_in_there - I did not ice my hands/feet. In fact, I was told to avoid extreme temperatures, cold or hot, on my hands and feet as it might trigger neuropathy, so I was surprised to see that so many ladies did ice their extremities. I never found and answer to why there was such discrepancy in instructions.

    I was told by my MO that I could use vitamin B6 and L-Glutamine powder because there were reports that it MIGHT help prevent neuropathy, although there were no real guarantees. I took B6 and L-Glutamine religiously and I don't know if this was what really helped, but I escaped without any neuropathy in my hands. Part of my left foot felt numb for about a year after chemo, but the numbness gradually went away and now my foot feels normal.


  • anoncub
    anoncub Member Posts: 18
    edited January 2017

    Luvmyys and willa216- thanks for the encouragement on dealing with the long-hair / fine hair rat's nest... I flat-ironed the ends (naughty!) during wash day before my next infusion and don't think there was any more shedding than the big shed earlier this week (boo hoo!) But the combing in the morning is certainly a lot easier... I just think I get so anxious about my scalp heating up and doing everything "right" by the instructions that it's not worth it. The mindshare that my scalp and hair get at this point is bonkers. I was at the local Women's March yesterday and instead of enjoying being able to be around positive energy, I was worried about hair, which was coming out in droves everytime the wind blew... Sigh. I bought a wig yesterday just in case I end up losing 80% of my hair, and I think that'll help with the obsessed thoughts.

    I do think Penguin changes their recommendations. Geralyn sent me instructions which said to wait 4 hours after Perjeta, not just the TC chemo. I asked her why that changed, and she never responded, so I called my rep and he said he'll call the company about it, but that Perjeta hasn't been shown to cause hair loss individually (never been tested except in conjunction with chemo). It freaked me out and made me mad that they change messages and instructions like that mid-treatment.

    DandilionWishes- My port recovery wasn't painful, just uncomfortable when trying to do normal range of motion stuff for a couple of days. Mainly because I had so much edema at the site that I felt pressure around the port site. That, and they left a needle in my port- since I got my first infusion the day after my port installation, so there was some discomfort sleeping with that. I was probably more out of it with the other side effects of chemo and wasn't really thinking about the port, so maybe I was just distracted... Do ask your nurses/doctors about the pain - mine suggested Tylenol and a heating pad (no ice since it causes restriction to the vessels) if I had any pain. I did use heat packs and tried moving my arm around to keep the fluids moving around the area, so I'm not sure whether that helped me out.

    Elastogelgirl- love your pics of skiing and your hair! It is really encouraging to see them. :)

    Hanging_in_there- I have my hands and feet on ice packs when I'm receiving my Taxotere infusion. I might try sucking on ice during the Taxotere infusion, too. The cold wasn't an issue for me, but then again, the cold caps weren't painful for me, either. Or, I suspect I was so loopy from the Benadryl and pre-meds that nothing was really registering for me...

    Hang in there, indeed everyone!

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited March 2017

    anoncub- thanks..

    Im bored and snowed in now so...

    thought I might post a pre-hair pic... and my current unkempt style below. My new style, from what I gather, is going to be my new look for around 5 more months. We have to endure no styling, dyeing, brushing, washing etc....just to set expectations....since we all know after starting this that our hair is not going to quite look like it used to for a while.

    Way better than bald! more comfy too I'm guessing.

    Our hair will recover maybe better in some cases!

    Hugs all

    E

    First My pre chemo photo last November.

    Second My new average look for the duration of treatment is below....I can accept this. Probably much more thinning I assume..hope not but.....at least that's my hair flowing out the back of the scarf

    I cut my hair very carefully after AC 1...it was so heavy when I washed! I feared it would pull too much. It was so hard to deal with not being able to really brush it. Cutting Was super sad..but I'm glad I did..

    Oh and somehow my skin looks better in the photo below...I think it must be the steroids. My skin is shriveling again like a prune now that I'm 10 days post 3rd AC infusion.

    Preimageimage

  • Kthielen
    Kthielen Member Posts: 176
    edited January 2017

    I have had to receive Taxotere twice:(

    The first time I did not ice my fingernails and lost almost every single one of them. The second time I iced them with frozen peas(cheap and easy:)). I finished my chemo in September and have not lost one fingernail. It was pretty tough, doing cold capping too but well worth it!! I only iced during the Taxotere infusion( not the 3 or 4 hrs after that you have to do with the cold caps)

    Good luck to all! There is a light at the end of the tunnel:)


    Best wishes,

    Kathy

  • lizjo
    lizjo Member Posts: 20
    edited January 2017

    Curious, with those of you who first noticed peripheral neuropathy twinges, exactly when did you first notice them, and did they come and go? I ask, because this weekend on day 2 after my second Taxol, I started to get a tingling/numb pain in my left middle toe that basically fit the bill. It was worst at bedtime, but it seemed to subside so it's barely noticeable now.

    The nerves in that toe were already messed up from a poor-fitting ski boot incident more than a decade ago. I'm wondering if I'm just being hyper-vigilant, or if it's common to have nerve symptoms/tingling directly after treatment that may lessen over time. Regardless, I'm calling the doctor today to report it. I just wanted to understand if this is something to expect after every infusion.

    Because the cold-capping has not been as painful or unbearable as I thought it might be, I'm definitely going to ice my feet at the next infusion. This was recommended to me by the nurse navigator at first, but she thought the caps would have maxed out my cold tolerance.

    BBwithBC45, the icing of the hands and feet is the same concept as the cold caps for our heads. Freezing those peripheral nerves during infusion is thought to keep the toxins from affecting them. While certainly traumatic in the short-term (just like icing our scalps is far from babying them), the long-term benefits appear to justify it. There have been some recent studies with really encouraging results: http://nursing.onclive.com/web-exclusives/frozen-g...: "CIPN was significantly reduced from 81% to 28% in hands and 64% to 25% in feet."

    Elastogelgirl, I am obsessed with your skiing photos. Keep them up! With two little ones at home, THIS was to be the year we got them on the slopes, and I was really looking forward to getting up to Tahoe after a 3-year hiatus. Looks like we'll have to wait out another year. I can only hope we get the same snow conditions again.



  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited January 2017

    lizjo-I'd say you should come try but...when I went up to the top 10000 feet my energy really tanked. We've been skiing the face mostly lower by the lake.

    Im feeling so good I often think I might want to take a trip....but when I think of the details I realize my sleep is spotty I'm up walking around every night trying to fix whatever problem I've got that's keeping me up..headaches, dry mouth, stomach probs.... And huge almost desperate problems with constipation. None would be Tolearable overnight somewhere.

    I'm really trying not to get too far from my comfort zones. Even if it is the lodge at heavenly or my car...or especially my home at night! Skiing in our backyard on my really bad days is great because it's all down hill to my living room!

    Cat imagine doing this with kids, job, post surgery etc!,,you guys all rock! I'm just so lucky to get to just focus on getting better. Being retired is much easier I can see.

    Hugs

  • willa216
    willa216 Member Posts: 162
    edited January 2017

    Kechla and Pamela: thanks for your comments on the PFC color timeline. I'm feeling more confident again to color this weekend.

    For those further out: If you colored at about 3 months PFC, do you recall the specific brand of hair color you used? My hair stylist is not being super helpful, I think because she's afraid to recommend something that doesn't work out okay. I told her no ammonia and no peroxide and she says that even Whole Foods brands have some peroxide. My appt is this weekend. I am not sure what to do...

    Thank you, all.

  • Luvmyys
    Luvmyys Member Posts: 67
    edited January 2017
    Hello!


    Willa - so jealous... but happy you will have some resolution soon. Thank you for making me feel I am not alone in my hair agony. Your words are always so comforting.

    Elastogelgirl - love all your pictures. You're doing great physically and mentally. Wish I had a better mindset about my hair. I wasn't a fussy girl before all this. I have lost my eyelashes and most my eyebrows with the Taxol and my skin is so dry and black circles under my eyes. Now I look sick. No way I could be discreet now.

    Did any past cold cappers feel you just couldn't do the PCC protocol anymore? You were on a ledge and you needed to just do something with your hair? I just feel if I found something to improve the look (a small cut or mild layer up, a loose scarf or beanie I could constantly wear) I could get through it. Ugh! Feel like such a cry baby. Maybe what I need is for my doctor to give me some anti-anxiety meds to push (sedate) me through treatment and this mess.. but she friggin' won't.. doesn't believe in them.
  • Luvmyys
    Luvmyys Member Posts: 67
    edited January 2017

    Hello!

    Willa - so jealous... but happy you will have some resolution soon. Thank you for making me feel I am not alone in my hair agony. Your words are always so comforting.

    Elastogelgirl - love all your pictures. You're doing great physically and mentally. Wish I had a better mindset about my hair. I wasn't a fussy girl before all this. I have lost my eyelashes and most my eyebrows with the Taxol and my skin is so dry with black circles under my eyes. I look sick. No way I could be discreet now. We took a vacation after 1st Taxol. It was fine nice to get away. Planning a big vacation in April when I am done with radiation.

    Did any past cold cappers feel you just couldn't do the PCC protocol anymore? You were on a ledge and you needed to just do something with your hair? Any words of encouragement.I just feel if I found something to improve the look (a small cut or mild layer up, a loose scarf or beanie I could constantly wear) I could get through it. Ugh! Feel like such a cry baby. Maybe what I need is for my doctor to give me some anti-anxiety meds to push (sedate) me through treatment and this mess.. but she friggin' won't.. doesn't believe in them.

  • il311
    il311 Member Posts: 26
    edited January 2017


    Panic...just when I thought I was okay biggest shed yet. I pray it is not my fault in using the clariol semi permanent color after my last chemo. Please follow directions and don't be like me!!!!

    I finished my last round of four rounds of chemo three weeks ago...managed to keep 70/80 percent of hair... now all of a sudden shedding like crazy. I so afraid as had the biggest shed yet... had two weeks of normal and boom! does anyone have any guidance? When can we expect the shedding to stop????

  • kechla
    kechla Member Posts: 181
    edited January 2017

    Willa, so... I was really bad and just did regular color. Hopefully I don't regret it later, but so far so good. I did wait about 3 weeks after my shedding slowed way down (11 weeks pfc).

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited January 2017

    Luvmyys- can you wear a scarf with your hair out the back? How's the shedding now? If you are up to it send message me a photo.....I'm a troll too. My hair without the color and actual brushing and washing is just gross. I'm doing kind of okay with it all because I told everyone I know that Im doing chemo and cold capping.,so when I feel ugly I know they know why I look so bad. All I get from everybody around me is support.

    Is PCC the paxman protocol? Do they say no hats scarfs?

    I also set my expectations low because I was told it would not work by so many face to face. The only reasons I'm trying the caps is because I see that it works in some cases, and I feel it will help save follicles....anyhow I'm routing for you!

    I figure if even I go totally bald on the top that scarves with hair out the back would be better than wigs for me.

    I washed last night and I did not get my hair rinsed well at all. Cold water doesn't clean the hair! It's filmy now...plus I have horrid flaking! My ear is mostly better though.

    Also I'm up at 2am with desperate constipation. I've done everything in the book front and back! Need to resolve before my next Ac at the end of this week!

    Hugs E

  • jstan81963
    jstan81963 Member Posts: 24
    edited January 2017

    willa216, I used Daniel Field (http://www.danielfieldmailorder.co.uk/index.asp?) it comes from the UK and takes a couple of weeks but there is NO smell and it doesnt burn and the color takes on hair that has alot of gray (like mine after 5 months ) i just did a recolor today and no more gray LOL

    here is a question from the website:

    I am undergoing a course of chemotherapy treatment – is it safe to use Daniel's Water Colour?

    Of course it will be understood that we are unable to make any special claims as to the suitability of Water Colour for chemotherapy patients. We always recommend following the advice of the respective clinician. Having said that, many chemotherapy patients do use the product after taking advice and in many cases have been referred to us.

    Water Colour contains no ammonia, alcohol or other active bleaching agents, but in view of any treatment being undertaken we would always advise that the medical practitioner looking after you be consulted before using any product. A comprehensive list of ingredients can be found on our "Questions" page under the heading "What are the ingredients of your hair colours?" There is also a list of ingredients on our instruction leaflet: http://www.danielfieldmailorder.co.uk/instructions.pdf

  • willa216
    willa216 Member Posts: 162
    edited January 2017

    IL311: I'm sorry for your panic. I wish I had something really smart to say but I don't. I'm not sure how far back you've read in this thread but there are a number of people who have most of their shedding PFC or shed for as long as 16 weeks PFC. I recall a number of people who did have big sheds at a couple weeks PFC. Everyone is so different - it's hard to know. In the meantime, maybe you can try to be easy on yourself and just continue to baby your hair as much as possible. As you know, lots of people follow all the rules to a T and don't get a great result and others don't follow the rules so much and do well. I hope you're hanging in there. From the pics you've shared here you still have a lot of hair so there is plenty of reason for hope that your end result will be good!

  • willa216
    willa216 Member Posts: 162
    edited January 2017

    Kechla and Jstan: Thanks for your comments on what to use for first color PFC.

    My stylist just wants to use my regular color but I've read (not here) that dark hair can turn orange if colored incorrectly or too soon.

    Jstan: I remember now you got Daniel Field - I looked into that and it does seem wonderful. My stylist doesn't know it so she seems uninterested. I may delay my Saturday appt and order that. I also spoke to some other hair stylists who seem like they're more willing to think outside the box and help me. Kind of annoyed at my stylist (whom I love and have had for years and years) because she doesn't want to think at all. But maybe that's unfair . Is your hair dark? Do you think the shade of the color came out the way you expected?

    Thanks again to both of you for your help.

  • willa216
    willa216 Member Posts: 162
    edited January 2017

    Elasto - I'm sure you've likely got this... but have you tried Traditional Medicinals Smooth Move tea? I feel like an old lady saying this but, really, I count on it. Never fails. Use two bags if it doesn't work at first. And good luck!!

  • anoncub
    anoncub Member Posts: 18
    edited January 2017

    Elastogelgirl- your pics make me smile given your positive energy and attitude. You go, girl! Beautiful! Sorry about the constipation. I am prepping for my upcoming round with that. The pharmacist said it was OK to do magnesium oxide supplements to get things moving through the first couple of days, and then I'm going to hit the Imodium hard when the glorious sh*tstorm (literally) from Perjeta takes place.

    Luvmyys- yes, I have thoughts everyday about giving up on cold caps, and I've only been through 1 round of Taxotere, with 5 more to go, ugh. Mainly because of spending so much time WORRYING and dreading about the routine of "babying" the hair and the constant looking like a drowned (thinned out hair) rat, as well as not being able to put my hair in a ponytail or even being able to wear a wig/hat for fear of getting my scalp too hot (which it does anyway, given the night sweats and cardio exercise). Buuuuut, I think I'm just going to keep at it anyway. Who knows- it might prevent permanent hair loss, and I'll just do the best I can. I'm going to wear a wig during the work meetings I have, and if that makes the hair loss worse, then so be it. I just don't have the energy to be as stressed as I have been the past 3 weeks about the hair loss thing. I guess you can say I've reached the "acceptance" stage of the Kubler-Ross grief stages! The acne infestation and gynecologic side effects of chemo have been emotionally much harder for me to deal with than the hair loss, unfortunately.

    Sending you hugs and solidarity!!

  • willa216
    willa216 Member Posts: 162
    edited January 2017

    Lizjo: I had a lot mild, intermittent neuropathy with Taxol, in conjuction with Carbo, Herceptin and Perjeta. I noticed it in my feet and hands after the second infusion. I thought, same as you, that maybe I was being hyper vigilant. My MO said to bring it up no matter what. It went on like that through 11 infusions and then after the 12th one I had serious consistent issues in my left foot all the way up to my knee. So upset. But, apparently it does often resolve with time and mine was gone about 2 months PFC. Best wishes to you.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited January 2017

    For those who ask about coloring the hair pfc:

    I waited 14 weeks before coloring & highlighting again but my stylist just used my regular pre-chemo product. If you're doing highlights you're going to use peroxide! Regarding the risk of hair turning orange or some weird shade if you color too soon pfc - my stylist was a little concerned about this so she did a few test strands to see what happened before highlighting & coloring my entire head. We waited a week to see if there was any breakage, color change, etc., with the test strands, but I had no problems at all. When she did my entire head the following week, the foil highlights and color turned out great. It felt awesome! One thing we think really helped keep the color true was the fact that I only used Kendra Clarifying Shampoo during chemo and for a couple of weeks afterward. My stylist thinks the clarifying shampoo, used consistently during chemo, stripped out a lot of the metals and chemo deposits that would have otherwise remained in my hair for a longer period of time. The Kendra was a little drying so I soon switched pfc to a yummy shampoo by Davines. I still use the Kendra stuff a couple of days prior to each color/highlighting session just to remove deposits, etc. so the color takes more easily.

    I truly think you just never know who is going to be successful at capping and who won't. You won't know until you try. I was one of those who started out sincerely trying to follow the rules but by the end of chemo, had broken them all...blow drying, more frequent shampooing than recommended, conditioner, hair spray, ball caps, hot sweaty motorcycle helmet (eek). I still only thinned about 30% total according to my stylist's estimate. This seems in the range that Penguin says to expect anyway. I'm not saying follow my example by any means - just trying to allay fears that you may have screwed up if you didn't follow some protocol exactly.

    I am so glad I capped although it was a pain in the butt! It sure did a lot to help me get to a more "normal" place much sooner, mentally and physically.

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited March 2017

    Hi all,

    So I did everything for my poo problem. Dried fruit, prune juice, Smooth move tea, Philips milk of mag, ducolax, miralax, suppositories, fleet enema, coffee enema....wow that was the worst. All that and I got nothing for days. But finally I sort of got some movement after using two suppositories ouch! I am So bloated so uncomfortable. But things seem to be trying to activate with the churning. Just wanted to thank every one for the advice and messages. I've been plagued with a slow bowel my whole life. I'm convinced this time it all began with a cheese craving I succumbed to last week. I don't eat cheese much usually. Got to really keep on it with the movement and watch what I eat! I usually eat a ton of dates and dried and fresh fruits but with all the heartburn and nausea I'm not into those helpful type foods! Plus the Zofran, Pepcid slow me up too!

    Alert to me! I found out that scarfs and hats are not advised! This makes me so scared because I'm wearing scarfs and hats and helmets. With the helmets I think I'm doing my best with a shower cap underneath to prevent tugging. I always try to make sure no tugging!

    Anyone wearing scarfs and hats etc anyway? Is it just the heat? My head doesn't get too hot usually. I can't go out without scarfs in the cold weather in Tahoe. Plus it's so much nicer to cover the mess!

    I'm going for my 4th AC on Friday. Started my fast mimic diet this afternoon. Anyone interested in my pre chemo fasting diet can message me I have a little routine.

    Photos... Here is my hair this eve 1 more AC and 4 dose dense taxol to go!

    ...I love looking at photos of hair and progress. Please all post your progress if you can.

    ..I was putting my sheding hair in my pocket at a restaurant today. The hair ball is what I've been putting in a bag when I get bigger snarls or pocketed collections out. It's not all I've lost but it's a good percentage of it. This is kinda weird but it helps me keep some perspective on the amount I'm losing . This hair ball is dense to the touch. I hate the photos of the top of my head...

    Hugs all

    I posted 1 pic from skiing yesterday. You all seem to love these! I was in so much gas pain there...but I did make some powder runs and it distracted me for a while. Had to quit early too much pain in bowel. So bummed bout that! Was supposed to be one of my good days!

    image

    This image

    imageimage

  • Hanging_in_there
    Hanging_in_there Member Posts: 113
    edited January 2017

    I know this is entirely off topic, but I posted it in a forum I bet few people read. So I'm posting it here:

    https://www.washingtonpost.com/national/health-sci...

    New study finds that BBQ and smoked meats tied to risk of death from breast cancer.

    https://www.sciencedaily.com/releases/2017/01/1701...

    This is a link to the study.


  • LachelleR
    LachelleR Member Posts: 1
    edited January 2017

    Hello Ladies,

    I am a newbie to all this. I am starting my chemo tomorrow and I was wondering how long you keep your caps on AFTER you chemo? I live 50 minutes away from the infusion center.

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2017

    Lachelle, four hours is pretty standard. What is your chemo? I think Penguin sometimes recommends 5 hours for AC. Good luck to you

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited January 2017

    Lachelle, My protocol is 4 hours after my T/C. I live about 25 - 30 min. from my center and we had to stop on the way home to change my cap. It wasn't easy, but we got it done!

    Hangiing in: Thanks for that link. I do enjoy smoked meats from time to time. I'd better rethink that!


    Elastogelgirl: You look fabulous! I hope I have as much luck with my cold caps. It probably helps that you are so active in such a beautiful place. i miss the mountains!

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited January 2017

    lacheller- I have two helpers, I live 1.5 hours away..we cold cap in the car on the way home. We switch my caps more often than most but ave 20 mins...depends on how cold they are..

    If you only have one helper or you are alone with 50 mins you could do a cap stop...or stay at the center.

    Ps I wouldn't do it alone! I take Ativan for the chemo capping session. Driving would not work for me I'm pretty out of it. I don't even remember my capping trips home in the car I only remember switching caps in car...eyes closed between.. I do remember still doing my capping at home for as long as I could stand it!

    I've done it three times now. Going again Friday URP makes me ill to talk about going! Capping make infusion part seem like nothing. But I associate the caps with nausea. Can't look at em now without urpping. It's doable though your head will numb out after the first one

    Good luck hugs e

  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited January 2017

    catgirl2- you are going to do better than me for sure! I'm doing AC and the taxol. I think your chemo is a tad easier than both AC an d taxol.. My nether region was quite a furry area... now totally bald down there. I'm losing my hair thinning constantly. I'm really just hoping for an okay comb over at the end. I'm certain your going to come out far better. Plus your a brunette?. I hear darker hair has a better outcome too. I was a blonde when I was younger... now I know my natural hair us ugly mouse color with gray.

    .I don't know what caps you have but my egels aren't highest on success list either...

    Thanks for compliments. It helps to have 'up' days on how things look. I'm fairly positive right now. Though I've started my fast mimick diet and I'm super hungry with a migraine on top. Blogging helps me cope!

    Hugs e


  • Catgirl2
    Catgirl2 Member Posts: 83
    edited January 2017

    Elastogelgirl, I do think my T/C is easier than yours for sure. I was a brunette before the grey and hair coloring. I will soon find out how much brunette is actually left when these roots grow out! One of the main reasons I'm doing cold caps is the permanent hair loss that some have on the taxotere. I'm hoping to avoid that and not have to start from bald! I'm using the Penguin cold caps, so I hope they work for me. I'm only on day 7 after my first treatment, so I'm dreading the first shed. I'm not very good about not wanting to wash my hair. I can't stand to go more than a day or two without washing!

    I'm interested in your fasting routine. I've read the research on this and it is fascinating! I'm just not sure I could do it. I've never been good at fasting. Do you do a true fast or just reduced calories? You can message me if you don't want to put it all out here.


    Thanks!

  • Luvmyys
    Luvmyys Member Posts: 67
    edited January 2017
    Hello!


    Elastogelgirl - looking good! You have a lot of hair. If that's all the hair you've lost, that's excellent. I lose that much now with each wash weekly, besides the clump/strands that come out all day, everyday. I think Penguin advises no hats, scarfs etc.. is due to heat and friction. When I had more hair I would wear it back with a srunchie in a loose ponytail. It is so great you keep moving. I am a week out from last treatment (I have one more next week) and I feel great. Lots of energy and no nausea. Haven't had nausea with Taxol, had tons with A/C even with meds.

    As far as neuropathy, my toes are a little numb and fingers heavy but no numbness or tingling. I haven't used any ice or cooling methods while getting treatment.

    For those who have done dose dense Taxol with Penguin, how long have you worn your cap after infusion? With weekly Taxol how long?

    Hangin - thanks for the link. We love to BBQ everything. We've rethought our whole eating style since being diagnosed. I have thoughts in my brain of me wearing an underwire bra, talking on the cell phone in front of the microwave cooking bacon. Now isn't that a scary thought. Lol!

    Everyone have a great day and be well!
  • Elastogelgirl
    Elastogelgirl Member Posts: 184
    edited January 2017

    catgirl2- taxotere! Yes that one has a bad rap for permanent hair loss. You are doing the right thing. That's my reasoning too. We want to keep our hair but we REALLY want to save our ability to regrow our hair! It's supposed to grow in faster too! Do you have the option to switch taxol or pacitaxil? I'm going to confirm I'm getting taxol.

    Luvmyys...that hair ball clump looks smaller than it feels. it is dense. Plus it's not all I've lost. I'm just putting hair in there when I feel it's a lager amount. Otherwise loose starnds go in closest garbage. My hair looks impossibly thin to me to get through five more rounds of bad chemo plus pfc! But you never know! Please send me your updated photos as you get along! Plus I've seen a ton of creativity on how to cover the crown areas. I'm settiling with the fact that I just can't get thru this without hair coverings...so I'll update on how I feel about how that might be okay or backfiring! You do still look fine in photos! as I feel I do look Kay too if photo taken at the right angle. Just don't look up top! Being tall helps I'm 5’10...we are so alike in so very many ways except maybe now I have less almost no responsibility in the world! I worked my butt off when I was young burning both ends as a professional making as much money as I i could....I chose to retire early at 50 and live off our investments! My hubby used my income to collect real estate.. we survive now off our rents. No kids helps but we are missing the family love! Glad to hear the dose dense taxol is sort of more tolerable that the AC! I'll keep a mind toward not heating and tearing my hair with the coverings!

    To all who are considering fasting! Please know I've never dieted in my whole life! Never gone 1 day without eating crazy amounts of food! When I got my diagnosis I weighed 172...I was not fat except some jelly in my mid section. I'm just large with loads of muscle. I lost 10 pounds from stress after diagnosis then 10 more with my dieting and cleaned up diet. Anyone who wants to try but thinks they can't fast should at least give it a go if it fits into your schedule! My power comes from thought about how I can possibly keep the chemo from killing my normal cells! Just like the caps it makes sense and since we can all see how the caps work it's got to help. Fasting slows cells division just like the cold!

    Message me if you want my fast mimicking diet plan. Though just water two days before and 1 day after is even better! Not everyone has enough weight or health to do it! But anyone who can stand the capping can stand this fasting

    Hugs all c