Cold Caps Users Past and Present, to Save Hair
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Hi everyone !
I realised my mums hair has started to curl/wave a little. She has super straight hair. She's washed it once since her first infusion last week and let it air dry - she combed it with a wide tooth comb gently. No shedding yet, but we found the new curls a little strange !
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BELLS WHISTLES and ALL the best wishes to MamaFelice!!!
Whooooooo Hooooooooo! You got this! Behind you
Xx
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Willow--I protected my hair the first 3 months from anything and when the shedding slowed down, I only blew it dry on cool when it was a necessity. At the 6 month mark I felt I could do what I did before cold capping. I still only wash my hair twice/week and let it air dry 50% before using a blowdryer but now it's just habit!
MJ-- you look great! Your bangs are the length of mine! I think my new growth is about 4-5 inches. Seeing the other girls who didn't cold cap, I know I"m Way ahead of them and look normal in a hat because my back is the longest. I pretty much lost all my sides sometime in the past year. I'll post a picture this week when it will have been a year since my first selfie after chemo.
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Thank you MJPow, Willow, Pamela23 and others for coming back to let us know your PFC experiences. It is so helpful and encouraging for those of us still in process to have this first-hand info.
HOORAY, MamaFelice for your last infusion today! And with still so much of your hair; that is great!!
My scalp condition is not 100% resolved, but much, much better - I'd say about 85%. There is just a bit of flaking and itchiness; the awful shedding has stopped, thank goodness. My dermatologist said to rotate different dandruff shampoos each week because they have different active ingredients and the yeasts can't build up resistance if you keep switching them out. Under the circumstances I am having to break all kinds of rules and am now washing every 2-3 days. I don't notice much shedding beyond what I'd normally have at this point, though there is less *to* shed.
Yesterday I had an appointment with my breast/plastic surgeon and then at my MO's office for my Neulasta shot. Did errands afterwards since I was already up and out of the house. I'd used a bit of Cover Your Gray hair powder to help disguise the scalp show through on the thinning bit along my part line, but had intended to wear a beret. Realized when I was already in the car that I'd forgotten the hat and didn't feel too terribly self-conscious without it. That's a big win in my book!
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I've just gotten off the phone with United Healthcare and need to submit a letter to their Appeals Dept to try and get coverage for the Dignicap. Anyone have success? Have a template or talking points that worked? Other than hearing of one success story using code 1399 very little I can find.........Thanks!
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ladies, I'm supposed to start chemo on Feb 9th and I'm terrified. I just turned 41 and premenopausal, had 1 node positive and tumour .8mm. I've been debating chemo or not pretty much non stop. Read some scary posts about chemo causing early menopause, side effects on sex life, skin changes, makes you look much older , slows you down cognitively and so on and so on..I really don't want to competely lose my current self due to chemo. For all of those who've done it - are all these SE true? Did it make you look older, give you brain freeze, impact your sex drive etc?? Is this a more or less accurate picture of post chemo existence? Please help!!
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Thanks everyone for the WoooHooos! I felt them all day yesterday! Such a great feeling to be done with chemo. Here is a pic of the sun shining on my smile while heading into chemo! Caps are in the box already and heading to the post office tomorrow!
ButterflyLily-- Sorry to hear you are having to contemplate all of this. Amelia and I shared many PMs discussing our challenges with chemo benefits vs toxicity. Did you have MammaPrint test done? Considered very reliable with determining benefit of chemo to your cancer cells. Other tests are oncotype DX or ki67-- have you done any of these?
Magari-- so glad your scalp condition has improved! I use a cover powder on my gray and bare spots that has been working thus far....probably will need something with more coverage in months to come.
Off to another nap! Smiles to all of you! 😃
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Pamela & MJ - thanks for the styling and coloring feedback! After everything we've done to preserve my hair, I don't want to do something too soon to screw it up, so it's very reassuring to hear it straight from you gals!
LoveandLight - I've heard that chemo can change hair color and cause waves/curls, but that's crazy your Mum experienced it so quickly!
Butterfly Lily - I think your MO would be the best person to talk to for side effects and long term impact for your specific situation and chemo meds, and you two could talk about the issues you care about. I think that's the best way to understand your real risk as opposed to what drug companies have to say for liability purposes, or what you may see posted but doesn't fit your situation.
I was part of the "starting chemo in August 2017" group on this website --- a really amazing group of women ranging in age from 28 to early 70's. Some pre-menopausal, some mid-change (me at 55) and some post-menopausal. We haven't been done with chemo long enough to talk about long term effects, but I think almost everyone from the group was surprised that the actual chemo sessions and immediate side effects were easier and more manageable than we had imagined. I'm not saying it was all easy, but it was definitely not the horrible situation I was afraid it would be. I experienced dry skin (rich, lightly or un-scented moisturizer is your friend!), fatigue and brain fog, but all of those symptoms dramatically improved within a month or so of the last chemo session. Personally I wasn't interested in sex during chemo (for me, it would be the same as not feeling like it during or right after the flu), but felt back to normal about a month after last chemo. I'm about 4 months PFC, and with the diet and exercise changes I've made post chemo, I'm actually feeling & looking healthier than I did before my BC diagnosis.
I can't color my grey roots yet (will do that in March at about 5.5 months PFC), but I am so excited to see how great I look with my hair done normally along with my leaner/fitter shape! Keep in mind that your doctors have recommended chemo so you have the best chance of killing the cancer cells and not allowing them to grow somewhere else in the body... remember to weigh the possible side effects of having chemo against the risk of advanced BC impacting your life. I was given the option of having a lumpectomy + radiation, or adding chemo to the mix, and I chose to do chemo (even though I hated the thought of going through that) because my tumors were grade 3, triple negative, and the highest risk of recurrence was within the first 5 years after treatment. I am praying I will be "one and done", and that by hitting the cancer hard right out of the gate, I won't have to deal with a recurrence or metastasis. Whatever happens, I know that I've done all I can to beat this thing, which gives me peace of mind.
A BC diagnosis and all the treatments is a scary thing to have to deal with at such a young age - sending hugs and good energy to strengthen you as you face this!
Willow
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mamafelice - you look terrific! Congrats on being done with chemo! I'm totally having a glass of wine to your health today.
could you share some of the pros and cons you considered before chemo? And did you experience any changes physically, physiologically or cognitively after chemo? I'm using the arctic caps (I think) thank you for the test recommendations-will ask MO. ❤ 0 -
Willow: a huge thank you for your post. I needed to hear it!
I spoke to my MO after I posted earlier. She said because of my 1 positive node she leaned on the side of chemo. She also discussed it with my BS and apparently they both came to the same conclusion. I think what ultimately played into the decision was that the invasion of my lymph node was more than "micro"- I forgot how she phrased it. The T was strong/aggressive enough to overpower a lymph node even if it was a mere 8mm. She did not pressure me at all. She just believes we'd better hammer it now in case something is still lurking out there. So it looks like chemo for me? 😠 how do I say no to that given that info? Also, she said it would reduce my risk of recurrence from 18% to less than 9% (when combined with tamoxifen)
I admire your bravery in choosing chemo. You made an intelligent choice for your situation. And congrats on feeling and being in better shape than ever. You are a trooper!
Thank you for your post. It is helping.
Hug❤
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Hi ButterflyLily - I'm so glad you were able to speak with your doctor and get risk/benefit info for your specific situation! BC brings so many tough choices, and for me, agonizing over the decision has been the toughest part. It was such a relief to choose what felt right for my situation and just move on to actually starting treatment and taking care of the problem.
Thinking of you,
Willow
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Butterfly, did you have an oncodx test? You are er and pr positive small tumor 1 node, why are you having chemo? The oncodx is good up to 3 positive nodes, it can show if chemo would even be useful or not.
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Butterfly, if I may add to Willow's and the other's comments, since they're all part of the factors that lead us here to cold capping. Based on the initial hospital pathology report for my lumpectomy, my surgeon automatically had a sample sent for an Oncotype DX test; at that point, both she and my MO still believed that all indicia pointed to nothing more than 3.5 weeks of radiation. Then the Oncotype # came back at 38. I was shocked (as were they) and of course scared because that meant chemo and, worse, hair loss. When I'm not a BC fighter/survivor, I'm an attorney; when some party writes to a client of mine to demand that they stop something the client is doing, it's my job to research the issue and find a way to tell the other side: no, my client doesn't have to stop. I treated the Oncotype/chemo result the same way and went online researching anything looking scholarly and legitimate supporting other tests which, hopefully, would have a different result. I stumbled upon the MammaPrint test which reviewed many more genes and, in some instances, came back with different recommendations than the Oncotype. Aha!
Then I met with my MO, who really respected how I had tried to research and educate myself on the issues. She explained how the BC oncology community (in the U.S. anyway) followed guidelines established by the National Comprehensive Cancer Network (https://www.nccn.org/). Based on the NCCN guidelines, my MO took me through a flow chart of various options based on specific factors. These same factors also were critical in determining which of the tests were medically "validated" for which factors. In my case, the Oncotype DX text was medically validated for determining the efficacy of chemo, and the MammaPrint test was not validated. (The MammaPrint test is validated for BC having other characteristics, just not mine.) The NCCN guidelines also provided my MO with the recommended chemo cocktail options. As the saying goes: your mileage may vary.
Reluctantly, I had to tell my client -- me -- that it was necessary to comply with the demand: chemo, at least if I wanted a better chance for a more favorable long term outcome. As for the hair, well that's why I joined this discussion thread for cold capping (I'm using Arctic's system).
All the best on your journey.
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Willow-- what a lovely testimony you shared! Always guiding us and sharing so openly about your experiences and feelings. Love your posts and encouragement always!
Butterfly-- Praying for you as you navigate these decisions. Have you had a MammaPrint or OncoDX score done? MammaPrint released its latest study this past summer that patients with up to 3 positive nodes may not be best candidates for chemo (must be ER+\HER2-). It is looked at and used more at the higher institutions than local hospitals. Google and read, and present the MO with the journals and studies on it if you want another piece to add to the confidence of your decision. Your clinical grade is not mentioned in your bio.... so I am assuming from your docs lean towards chemo that it is Grade 3. This is often a strong influencing factor to them.
As for chemo and aging.... sure, during the process you will feel older, whether it is the fatigue or the hot flashes, or the puffiness or baldness....but like Willow shared, it is temporary and you will recover if you take care of yourself and rebuild with a healthy diet and exercise. The cold capping and having hair has been a magical part of feeling better during chemo. I am very thankful that this was brought to my attention and something that could be a part of my journey. I hope it can be for you too. I went through chemo for Hodgkin's lymphoma at age 22-3 and lost my hair then. It grew back, and all my youth and beauty returned. It is a little more challenging at 47, but now I am surrounded by a loving husband and beautiful children to carry me through. They don't see me as a tired woman with no breasts or eyebrows.... they see me with the same love they have always had. Chemo will not define you. You have got this! 💪🏼😃🙏🏻
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Mamafelice congratulations you are done with the worst part of this journey.
Butterfly as they say you have to make your own decision. I was 46 starting a new job when this nightmare started. I went through; exams, biopsy, lumpectomy, oncotype, chemo and radiation. All these working. I never said anything in my job, and I haven't tell anybody only my family and 3 friends. I lost 70 percent of my hair due it got tangled the day 21 after the first chemo but I was able to go out with a pony tail, I bought extensions and I wear them when I go out, that makes me l look normal.
About the side effects with the meds that they give you really you can do it. I did the chemo Wednesday, cold calling for 9 hours, Thursday I stayed at home but doing things, and Friday went back to work.
The weekends I went out with friends and tried to do my life as normal so anybody notice I was sick. Every person is different but I thought I will do everything the doctors say to stop this nightmare come back. No I am 4 months PFC taking tamoxifen even they say has very side effects. I am fighting with my fears, doing yoga and changing my diet. It will take time to heal physically and emotionally, but we didn't choose to have this so we have to accept it and try to move forward. You can do it.
Blessings for all of you. Hope and faith. 🙏
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Vivianlu, mamafelice, shlomit, meow! I am so grateful and pleasantly surprised by the responses I received and all your suggestions/feedback. Thank you!!
I believe the node involvement, although it was just one of of 13 nodes, was significant. As in, not micro..but macro. Or something like that. I mentioned the oncotype test to my MO yesterday. She said she would have considered it were it not for the 1 affected node. She did say I'm free to get second opinion and she is totally onboard with that. However, she believes 99% of MOs would tell me same thing that I should do chemo. I have sent my path report and biopsy to MSK here in the city but not sure they'll be able to schedule me to come in before Feb 9 when I'm supposed to start.
On dosage, she said they tailor it to each patient-height, weight etc. And that she can adjust it as needed if the SE become too much of an issue at any point during treatment.
She did say I can use the Arctic Cap which I'm ordering this week (yay!)
This whole thing started with 2 IVF cycles. I have frozen 12 embryos. I was preparing for embryo transfer when the tumor was found. 😱 Hopefully, somewhere down the road, I'll be able to compete a transfer and carry a bambino. Tamoxifen and being strongly ER+ will sure be a big hurdle to navigate. I have no children as of yet and am 41. Would love to have little ones and cancer will not get in the way!
MamaFelice: I will def ask about the MammaPrint rest also. I will call the MO again tomorrow. The biopsy report says moderately differentiated. Not sure if that makes me grade 2? I chose the Arctic caps too if I were to proceed with chemo. Seeing your post gives me so much strength. Not just preserving your hair, but how you bounces back to enjoying life and being your true self without letting chemo be a lasting detour. 😀
Vivianlu: you worked throughout your treatment!?! You are an inspiration. I aim to do the same (prayers!) I am scheduled for Fridays and MO said most women are able to go back to work Monday.
Shlomit: I followed your decision path leading you to conclude chemo is the right choice. I hope it makes the experience more manageable when you are able to justify/rationalize it for yourself. How are you feeling? I see you recently started chemo.
Thank you all for the overwhelming support. My heart is with you! ❤
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Hi Girls, just a shout out to those going through chemo now- stay strong!
I am now around five years out, NED, and I never got eyebrows or body hair back (good to not shave legs..), and I do have bad neuropathy, but thanks to the penguin caps the hair on my head is great! Back down below my waist, thick, unaffected by the ordeal. I hate to think what might have happened in my case without the caps, considering my brows etc.
Well worth the added inconvenience and expense while going through all of the other torture, in my opinion. Hang in there. Please take extra special care of yourself.
hugs,
Jan
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Butterfly, thank you for asking. Saturday/Sunday -- the first two days post (1st) chemo were pretty good. I almost considered going to my gym for a light workout on Sunday, but realized that since it's part of a larger community center, the place would be crawling with kids and more kids and all the germs they may be carrying from their day care, school, etc. (down in the gym, at least I can be wiping down any equipment I'm using), so I thought the better of it and stayed home. Then came Sunday night into Monday, and lingering into Tuesday, with side effects, all of which I'd been cautioned about. Oh, sure, with the 1st two days going great (as I also had been told about), I just figured I was home free. I felt like I had food poisoning, the flu, and whatever else. Kept up my fluids (my kidneys have had a fantastic work out), and the weight loss, though perhaps temporary, was welcome. Yesterday, I finally went back to my office for a few hours, and today has been closer to normal; well, except that my tongue and mouth aren't feeling that great, but at least I'm back to more complete nourishment. Bear in mind, though, my chemo and yours are different. I have 3 more rounds, for a total of 4, each being 21-days apart. Then it's a break on to radiation. Saturday, I am looking forward to meeting w/my personal trainer again and endorphins I hope to generate, although he and I realize it won't be one of our killer Saturday morning workouts.
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Hi I am starting paxman cold capping with taxotere and cytoxan x4 in a couple of weeks.. any advice? I'm trying to go through this great thread, but there's alot of posts so it's hard to find suggestions😉 also did anyone do anything for eyebrows and eyelashes to preserve them or if they fell out, any great products you used? Thanks!
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HI Butterfly. I finished AC+T (16 rounds of chemo all together) 4 months ago. I used Penguin cold caps - lost about 40% - just overall thinning. I was 40 when diagnosed. I had 2 lymph nodes involved and chemo was not an option for me. It's a long road, but totally manageable. You can do it! Good luck!!!!
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shlomit: Congrats on being done with 1st chemo session. Sounds like it wasn't the most pleasant experience, at least in the beginning of the week but you did it! I love that you're seeing your personal trainer this Saturday! You're getting after it! I admire that. How was the Arctic Caps by the way? I'm ordering mine tomorrow.
Ykh: you made my day! Glad your treatment wasn't too bad and more importantly that you are done with chemo. I hope you never ever have to deal with it again. Did you notice any other changes? Like your skin tone or color? Did you see any weakening of your immune system? And - very important - in your cognitive ability. I work in a bank and use my head more than anything. I hope my brain is spared 😰
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Butterfly, the Arctic caps process went well, so I believe. The company has a registered nurse in the Baltimore area which was convenient to me (DC suburbs) and I "invested" the additional $$ to have Nurse Kelly come for the first day to work with me and more important, my capping buddy, to make sure we were doing it right. Ask about what options they have in your area. Of course, my capping buddy is beyond organized to begin with (she prepared a spreadsheet to time out which cap #s were switched out at what time, etc.). The key, as with any of these systems, is getting the cap down to cover your hairline, all over, and just "suck it up buttercup" on the cold part. It's more than just the initial few minutes of the 1st cap placement and getting through the cold; it's like the movie "Groundhog Day" because you just keep pushing through the same cold shock with each fresh cap placement. I also found a local dry ice supplier (they specialize in beer and wine; go figure) that has the dry ice in pellet form. Not only that, when I went into the place ahead of my first treatment and tried to explain why I needed the ice -- thinking I was probably speaking in some strange language -- they pulled out brochures from Arctic, said they'd been trained, and knew exactly what I needed. Who knew? I took care of the dry ice buy the night before the treatment and just left the cooler in the back of my car.
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shlomit, glad to hear cappung went smoothly for you!!!
When you buy dry ice, the vendor should remind you how to transport and store it safely:
Cover dry ice with plastic bag and then beach towel, but leave lid of cooler cracked to vent the CO2 gas as it evaporates.
Drive with fresh air circulating thru car or windows cracked.
Store in well ventilated space (if left in car, make sure windows are open, and you open garage door in am to get fresh air circulating into car). We left the cooler outside overnight rather than leave our garage window open.
I read that driving as little as 15-20 minutes without good ventilation can give you a headache, so I think its worth being extra careful with the dry ice.
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hi everyone!! I just finished my first round of chemo on Tuesday. I felt a little tired yesterday but today (two days post chemo) I have absolutely no energy. Getting up to go the bathroom is like a workout. I’m not really having any other side effects except everything tastes like metal. I’m doing 4 rounds of TC. I did the PCC and it was great. Don’t get me wrong, it was really cold the first 5-10 minutes but then it was manageable for me, and I have no pain tolerance. If I can survive it then anyone can!! It is a lot of work for your helper. My husband didn’t sit down for 10 hours. The rep for PCC had me do the cold capping 1 hour prior to treatment, then the 4 hours during treatment and then 4-5 hours after treatment. It was a total of 10 hours but made the chemo go fast. The last 4 hours was the hardest because we live over 1 -2 hours away because of traffic and had to pull over every 15 minutes to get everything prepared and put on new cap. It’s nice to know that I only have to do this 3 more times. My PCC rep said no shower caps in the shower and no taking hot baths.. she said the steam will get in and your hair might fallout. That happened to some of her clients. a hot bath sounded good but I want to do everything by the book. Goodluck to everyone in treatment and congratulations to those who have finished. We are all going to survive this!,
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Willow, thanks re: the dry ice. Driving home from the ice store, I had my car windows cracked. The a.m. drive to the chemo place was 10 minutes or less, and we also cracked the windows for that as well as the drive home. After we finished the capping at home, the ice chest was moved to my balcony (I'm in a condo). It took days for the ice to finish evaporating. I'll bring the chest inside tomorrow morning, give it a wipe down, and get the caps ready for the next load in two weeks.
SarahSC, thanks for sharing about the shower caps! My plan in the morning was to first take a hot shower w/the shower cap, and then bring the water temp and pressure way down to do my hair, which I haven't washed since Monday. I know the Arctic nurse cautioned me to wear a cap to keep my head cool when at the gym so that any sweating doesn't heat up the scalp (that big experiment will be on Saturday morning). I can do a more gentle, less hot shower with the hand-held, sans shower cap. I don't want to mess this up over things I can control.0 -
Hi cold cappers- I’m starting chemo next Tuesday. 6 rounds of taxotere, carboplatin, and Herceptin 3 weeks apart. I just got my penguin cold caps to try to save my hair. My question is what did you ladies do to protect your scalp at the partline during capping? Did you change your part every cap or did you protect your part with something? It takes more time to keep changing your part plus it sounds like it could be tougher on the hair as far as shedding goes. Thanks for the help. My husband is going to be very busy on chemo days
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Sarah: cograts on getting through the first round of chemo! Glad to hear it was manageable and you're keeping up the positive attitude! You're in my thoughts
yhk: you have given me reassurance. i read on another thread that cold caps don't work so well on adriamycin. don't know if i believe that.
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Good Morning,
I just wanted share a positive story. We have been getting our dry ice from a business in the area. My father-in -law picked it up the first 4 times. The nice gentleman that works there told my father in law, after the first 2 times, that if it was going to be a regular thing, set up an account because it will be less expensive. My father-in law did not share what the dry ice was for, but did set up an account and there was a huge savings. Then last week my husband picked it up, spoke to the same gentleman, and let him know that they were for. The guy was familiar and said he knew of at least three other people in the recent past who had got their dry ice there for cold capping and had great success with keeping their hair. This week my husband went to pick up the ice and the guy said "no charge, you have paid enough", and gave it us for free!
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Hey gang - I guess I'm not understanding the cold capping process. Isn't it supposed to be saving the follicle therefore any hairs that were saved should still be firmly anchored to my head? I note with some body hairs there are some that if I yank on, they'll come right out without resistance, and others seem to be in place (on the body hair front, shouldn't I be rid of them by 15 days post EC infusion 2?) Or does this mean that the chemo hasn't yet arrived at certain points of my body?
I can't not comb my hair daily otherwise I'll be cutting the matts out - and everywhere I look I have a hair hanging off my clothing or worse! I've seen them in the food prep area (grossed out by my own, for sure!).
I'd say I have at least 50% loss with my two uses the dignicap. Either I'm not doing something right or something seems off. If I have to do another 2 EC in addition to 12 weekly taxolos, I'm assuming with each tx more hair is going to go. I'm also at a point that when I think of it I get nauseous. Not a helpful association.
I've only washed my hair once since the 2nd infusion and must say that it was a delicate event.
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Butterfly, I tolerated chemo pretty well (no major side effects) and I worked through the chemo (only took a day off on chemo day) - I work for a software company. The main side effect from AC was nausea. But my advise to you - get antinausea pills (Zophran/Atavan) and take them before you start feeling bad. As for Taxol, I was feeling fine. The main side effect could be neurapathy. But if you ice your toes/fingers 15 mins before/after and during the infusion, you will be fine. I did not have any neurapathy. The other side effect on Taxol could be low WBC. You should eat more kale and green leaves to prevent it.
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