Cold Caps Users Past and Present, to Save Hair
Comments
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Runner - looking great!!!
FYI there was a study completed a while back (prob around 2010 - 2012) comparing 4 to 6 TC's (I think) that showed 4 was just as beneficial as 6 for early stage breast cancer, whereas side effects start becoming more severe after treatments 5 and 6. So you may want to go search for that article, it definitely is out there somewhere (sorry, I have lost the reference).
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Hi everyone, Hope everyone is well. I'm 5 weeks post chemo and I used Artic Cold Caps. I was very successful. I've thinned some especially above my ears and my hairline. I was wondering if anyone knew when the shredding will stop or slow. Also when is the earliest I can color and cut my hair. Thanks in advance.
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Runner- you look beautiful! And you are really brave to even consider adding 2 more treatments. I am sitting here sobbing about the thought of doing another 3 TC. The last 2 days were so painful. I'm not sure if I can do it 3 more times. The pain is better today and thankfully I had Percocet left over from my surgeries or I wouldn't have made it. I feel like a crybaby, but I want my life back! And if one more person tells me to be strong, I might kick them in the shins!
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Alright, here is the final result! I am over the moon!
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Alright, ladies, here is my final result. I am over the moon!
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Runner and JC, I am so happy for your positive results!! You both look stunning:)))
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JCS- you look great! Congrats on being finished!
Phaila- hang in there. Your last pic showed a lot of hair. I know it seems less than you are used to.
Sheri- sometimes you need to tell your doctor what you need or they won't know. Get some more Percocet, some lorazepam (for general shakiness, anxiety, and also is good for nausea), and flexiril helps with that taxotere muscle pain. After realizing how badly my first round went, my dr gave me all these things to help. They will do whatever they can to get you through this. There's no shame in asking for pain meds. Hurting keeps you from resting and healing. And if you don't say something, they will not know how bad it went.
LeMint-I'm curious about when you can resume normal hair activities too. I'm a ways off still but I can't wait for my first trim and highlights! I guess I don't really need the highlights since my hair isn't growing. It is getting really dry from freezing during the cold capping. Today I bought some Pantene dry condition to spray in it. It feels so much better now! And it poufed up my waves.
Have a good weekend everyone!
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Is there any girls in here who in North New Jersey /New York area who used cold caps. Anyone who is going with Memorial Sloan hospital?
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Hi I am starting with Arctic Caps Tuesday, I am very very worried if it will work and if i can manage it. We are having a skype training tomorrow. I was told by Nurse from Arctic caps that i can color my hair before i start treatment. Which i did yesterday (back to my old dark color) hope it will not be that much noticeable when roots grow up. I am also doing a trim on Monday and then i guess i will need to survive all these time without hair styling and hair products. Bought some bandannas that don't cover whole head, hope it will keep when it gets to bad hair manageable.... Nurse from Arctic caps recommended "Madison Reed"- they make an organic hair powder that you can put on your roots. Which is great to know i can use once my roots grow up to much -i do have some grey hair.
Any last minute recommendations? I am so worried about the whole process of caping not even talking about chemo part that i am so scared
My regiment is weekly taxol for 12 weeks + herseptin.I am getting crazy about thinking how will we change caps on the way home from hospital. The drive takes from 40 to 60 min depending on traffic (we drive to NJ from NYC). It means every 20 min we will have to get out of highway and stop on the street or shoulder and change it. Sounds crazy, but I don't have a choice...
So if you see on the news "crazy woman stopped traffic for her cold caps in NY city" -it will be me.:)
But on a serious note, ladies, how did you manage getting home from treatment in cold caps and changing them on the way. Am i the only one who lives that far from hospital? Any stories?
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penguin capsreally need to put gel in the part that comes down around your ear. That section just doesn't get cold enough and is why most of us have severe hair loss in that area. They also need to expand the back neck 1-2 inches. Actually adding 1-2 inches all the way around would be much better adding the above ear gel and it might be a winner. Every product goes through many design changes and this one really just needs to be enlarged a little bit. Also maybe offer different size caps. I know if they had one I would have taken an extra large for my massive noggin
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Phaila - you're so right about the cap sizes. Mine seemed to fit my head perfectly. But at my last infusion we put caps on my two helpers just for fun (caps that I'd already worn, so they were relatively "warm"). On one friend the cap was way too small, and on the other, the cap was way too big. For both of them, they were shocked by the cold, even though they'd been handling the caps for 12 weekly infusions!
victoryak, I had a medical freezer in my facility, so I capped the entire time at the facility. I know there are some who capped on the way/at home after finishing their chemo, so hopefully they'll pop in with advice. I can tell you, though, that the caps work very well with the 12 weekly taxol and herceptin regimen. I lost essentially no hair - maybe 5% at most. Just make sure your caps are cold enough and fit snugly to your head. I think Arctic uses Elastogel caps, which don't have as many adjustable parts as Penguin. Hopefully your Arctic advisors have the process down well for best success. My advice to you is - use a travel/neck pillow (the U-shaped kind) to support your head. The caps are heavy! Also, drink lots and lots of water. It will keep the chemo moving on out... Dress warmly and take an electric blanket if possible. For me, side effects of taxol were minimal. I never felt sick, and never had taste changes or anything. I did have some problems with constipation and diarrhea at various times - you might want to stock up on OTC meds for those problems. Taxol can cause neuropathy, usually in hands and feet. When I started getting symptoms (after the 3rd or 4th infusion) I started taking l-glutamine (30 grams per day, divided into 2 or 3 "servings" and mixed in a liquid of your choice) and Vitamin B6 (100 mg per day), which seemed to help. Be sure to check with your oncologist before starting any supplements. Good luck to you!
JC - your hair looks fantastic! I don't see any thinning at all.
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PatinMN, thank you ! You really made my day. I feel so much better and more optimistic. Just received cooler from Arctic Cold caps..Wow! They so cold already and heavy! Doing skype training tomorrow.!
Hope any ladies will share their experience about car travel home with Cold caps. Any hints how to change them on the way? I will be stopping in a mid of NYC and some parts of NJ lol right on sidewalk to change them! I hope we will not be arrested for it
Please let me know any hints on that. 0 -
I don't think the elastagels are as cold as the penguins but they are staying sub -32 when time to switch. We had them at - 4 going on then scalp area was 28 - 35 when switching. I think wearing two ear bands over the top really helped press it down on my (very thin spot from first cap/first shed) there was actually frost under the bands on the outside of the cap still to insulate further. This first shed was scary bad and I think I compounded it because I rinsed in cool water last night as my hair was all matted down and still wet/damp from spraying before chilling. I don't think I'll loose much from this one, but our first capping session as good as I thought it was - wasn't the level we needed and took it to this time. It's like you need a full on practice run or a pro with you for the first time. Anyhow I've kept my hair or a good chunk of it longer than original treatment 4 years ago. Just sucks is one half assed capping with Taxotere can zap it. I am doing 4 sessions so I'm 1/2 done. Capping with our without hair the last 2 in order to help it grow back quicker and block permanent damange. Will post a pick in a day or two if the first shed stops/slows...heard day 30 is the magic number, I have a few more days to go!
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viktoryak - If I recall correctly, sebm9 stopped on the freeway to do a cap change. She is still around but doesn't post on this forum too frequently any more. However you can try private messaging her:
https://community.breastcancer.org/member/100560/p...
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7of9- my 2nd "big shed" wasn't bad at all. Nothing like the first one. Hopefully yours will be light. I just did chemo 3 so I still have 2 more sheds to get through. It IS scary to think one bad capping day and it's all over! My hats were too cold this last time so I'm worried I left my warmed up cap on too long before changing. We finally started taking them out of the cooler earlier. My hair has gotten redder because it's mostly dark hairs coming out. I didn't even know I had black hairs until I saw them falling out. I guess red heads really are stubborn!
I'm really lucky. My cancer center is just 2 miles away so we do a quick cap change right before leaving then once home there's plenty of time to get everything set up in my bathroom so I can do my own cap changes. I live alone and I hate to monopolize my friends' entire day changing my hats. Plus I usually just want to be alone to read my iPad or watch tv. Chemo is exhausting even though you just sit there. My last session had more patients and they were all asking questions and thought what I was doing was neat. I felt a lot less self conscious about it since it was my 3rd treatment and it's obviously working. Even a guy said he would do it had he known about it!
I'm using the elastogels and they came with a bunch of straps to tighten. My hair loss has been very even except that one stupid bald spot in back. Now I really push the hat down tight before strapping it on but it's probably too late. I've been really happy with them and the customer service at chemo cold caps. I haven't had the issues with hair loss around the ears. I'd rather have that than where mine is but I don't even care if it shows anymore. I guess that's the attitude a lot of people who don't cold cap have.
So, do cold Cappers still get that great thick hair regrowth I keep hearing about once someone goes completely bald? Maybe the back of my head will have a ton of hair!
I decided to stay with 4 TC instead of 6. I just flat out asked my dr what she would do if she were me and she said 4. She said she would do 6 if the tumor was large, fast growing, inflammatory, and multiple positive lymph nodes. My tumor was small and I had one positive lymph node. Plus I'll be doing radiation andtamoxifen so it isn't like I'm going to stop treatment just because chemo is over.
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The cold cap results I am seeing here are amazing! I just completed my first round of ACF and cold capped. Now the question is when is the best time to shampoo/condition? I bought sulfate/paraben free products and am so ready to wash my hair now 2 days post round 1. I know I need to use lukewarm water and be very gentle, but is it okay to towel dry just a little (pat dry)? My hair holds onto water like crazy and it is going to take an eternity to get completely dry otherwise.
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Phaila, My penguin caps came with 4 gel bands. They are also frozen and refreeze within an hour. So you can just rotate them. Once the cap is on, you wrap the gel band around the bottom and sides. Works like a charm.
:-)
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I've been using them. Since there are only four the second time around they are never cold enough:(
I might order 4 more for my next treatment.
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We rotate them. It only is supposed to take an hour for them to freeze again so, there is plenty of time for the first one to be ready when you get done with the 4th one. Just a thought. :-)
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No, I've been using them since I started cold capping March 17th. The bands start off at -35 but by the time we get back to number one band after going through all 4 it has only cooled to 20-25 below which just does not feel cold enough... So hope that's not screwing me up:
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I just finished chemo last week and I used Penguin Cold Caps the entire 12 weeks. I have shed a LOT of hair, but I still have hair and I am very grateful for that. I have been using sulfate- and paraben-free shampoo and conditioner and actually started a few weeks before I started chemo. I very gently towel dried my hair and then just let it air dry on its own. Chemo week - washed my hair on Tuesday and chemo was Friday. Then the following Monday I was able to wash it again. Usually washed 2-3 times a week during the off weeks. I definitely used a large wide-tooth comb and not a brush. I am going to post the recommendations that Penguin Cold Caps uses and I am following them as closely as I can. Hope it will help those that have questions. I had a longer drive back as well, but it was just over 30 minutes and I would wait to put a new cap on just before leaving the infusion area. After you have practiced with the caps, you won't have any problems changing them. I was able to change them by myself (at home) after the first session and my sweet oncology nurse helped me during infusion since I was "hooked up" and it was a little awkward with a BP cuff, etc. Good luck to all of you that are trying to save your hair. I have been able to keep my cancer diagnosis and treatments "hidden" from my friends and co-workers and no one has seemed to notice any difference and keeping my hair has been one of the main reasons that has happened.
BTW - for those receiving the Neulasta shots - I found that taking just regular Claritin helped with the joint/bone pain. I would start with the first one on chemo day and continue until the 10 were gone. My oncologist agreed that the research is out there and that it helps.
Penguin Cold Cap recommendations --
Hair Care - Before - During - After - Chemo
Even though you are using Penguin Cold Caps to prevent hair loss during chemo, your hair still needs to be treated gently and taken care of during the attack of chemo on the follicles.
Because of this, it is vitally important that you "baby" your hair during treatment, and for a period of time after chemo is over. Your cooperation in this process will greatly influence the overall success of the Penguin Cold Caps, and will keep any shedding to a minimum. These are only recommendations we found helpful from past users. Keep in mind that everyone has a different hair type so you may have to alter some of the recommendations to suite your hair. Please discuss this with your representative.
OTHER THINGS THAT WILL HELP
*TAKE SILICA COMPOUND FOR GOOD HEALTH OF YOUR HAIR. 250MG 3 times a day with meals. Always check with your doctor.
*STOP USING DEODORANT WITH ALUMINIUM IN IT
*STOP DRINKING CAFFEINE. DECAFFEINATED TEA IS A GOOD CHOICE
*DRINK PLENTY OF WATER!!! DURING THE INFUSION AND A FEW DAYS AFTERWARDS TO HELP THE LIVER AND KIDNEYS FILTER THE BLOOD. IT WILL HELP YOUR HAIR AND ALSO HELP MINIMIZE THE SIDE EFFECTS OF CHEMO! DOUBLE BENEFITS!!
BEFORE CHEMO
*DO NOT GET A DRASTIC HAIRCUT BEFORE CHEMO. IT IS OK TO TRIM THE HAIR BUT DO NOT CUT HALF THE LENGTH OFF. IT WILL WEAKEN THE ROOTS.
*DO NOT COLOR YOUR HAIR 2 WEEKS BEFORE CHEMO
*DO NOT WASH THE HAIR 2 DAYS BEFORE CHEMO AND 2 DAYS AFTER CHEMO.
*DO WASH YOUR HAIR THE 3RD DAY AFTER CHEMO TO WASH AWAY ANY BUILD UP ON THE SCALP.
DURING CHEMO
*USE A SHAMPOO WITH A MILD DETERGENT THAT IS PH BALANCED AND HAS NO PARABENS AND NO SULFATES.
*WASH YOUR HAIR IN TEPID (COOL) WATER
*GENTLY MASSAGE - DO NOT SCRUB
*DO NOT USE A HIGH PRESSURE SPRAY. IT IS BEST TO WASH YOUR HAIR BEFORE YOU SHOWER IN THE SINK USING A LIGHT SPRAY HOSE OR THE FAUCET.
*USE A WIDE TOOTH COMB WHEN COMBING THE HAIR AND HOLD THE HAIR AT THE ROOTS WHEN DETANGLING SO YOU DON'T PULL AT THE ROOTS. START AT THE BOTTOM AND WORK YOUR WAY UP. DO NOT USE A BRUSH.
* IT IS IMPORTANT TO DETANGLE YOUR HAIR BEFORE SHAMPOOING TO GET OUT ANY LOOSE HAIR SO THE LOOSE HAIR DOESN'T TANGLE WITH THE REST OF YOUR HAIR WHEN WASHING OR WETTING YOUR HAIR.
*ON NON CHEMO WEEKS YOU CAN WASH YOUR HAIR EVERY 2-3 DAYS.
*YOU CAN USE CONDITIONER BUT TRY TO KEEP IT AWAY FROM THE SCALP AND RINSE.
**IMPORTANT - REAL CURLY, FRIZZY OR AFRO HAIR IS MORE CHALLENGING TO CARE FOR AND TO GET THE SHEDDING HAIR OUT. IT SHOULD BE DETANGLED AND LOOSE HAIR COMBED OUT SINCE THE SHEDDING HAIR SEEMS TO TANGLE IN THE CURLS. YOU CAN USE WIDE TOOTH COMBS, DETANGLERS AND CONDITIONER.
IT IS VERY IMPORTANT THAT YOU GET THE LOOSE HAIR OUT ONCE YOU START SHEDDING STRANDS SO THEY DO NOT TANGLE IN THE GOOD HAIR AND FORM A KNOT. EVERYONE'S HAIR MAY HAVE DIFFERENT CHALLENGES SO PLEASE CALL YOUR REP TO DISCUSS SOME THINGS THAT OTHERS HAVE TRIED WITH THEIR HAIR.
3 NO'S TO REMEMBER
WHEN WONDERING WHAT YOU CAN AND CAN NOT DO WITH YOUR HAIR DURING AND AFTER CHEMO. IF YOU REMEMBER THESE 3 THINGS AND IF YOU ARE NOT SURE IF YOU SHOULD DO IT - IF IT HAS OR DOES ANY OF THESE THAN DON'T!
*NO CHEMICALS
*NO HEAT
*NO PULLING
CHEMICALS - Hair products that we like to use have many ingredients and chemicals in them that can react with the residue of chemotherapy drugs in your follicles. Refrain from using hair products such as gels, mousse, powders, dye and hair colors, and even chlorine in swimming pools. If you swim in a chlorine pool do not put your head under water. Even salt water can dry your hair and is bad during this time.
NO HEAT - Anything that will make the scalp hot do not do. That includes - hot water, hats, scarves, headbands, hot irons, blow dryers. The follicles like it cool.
Keep the heat away from the scalp.
If you have hot flashes, temperature etc. Try to cool the head as soon as possible. Heat can make the chemo strong again.
NO PULLING - Anything that pulls the hair at the roots should be avoided. That includes - tight ponytails, barretts, brushing the hair etc.
AFTER CHEMO
Continue the hair regimen for at least 1 - 3 months after your last treatment and see what condition your hair is in. When all shedding has stopped (different for everyone) and your hair feels healthy again and there are no hair issues then take baby steps with changing your shampoo, warmer water, etc. Still no chemicals for 6 months after chemo. You have to give the hair follicles a chance to recover. When your hair feels as though it is in better condition and the shedding has stopped "Baby Steps" means - start to use warmer water, see how it goes then, after a while, a little warmer. Change your shampoo if you like, dilute it and see how it goes then don't dilute it, You will know your own hair and the condition it is in and what you think it can handle. Chemicals should wait for at least 6 months after chemo since it takes 6 months for the hair follicles to fully recover and everyone is different.
HERE ARE SOME FAQ'S
Q. Can I wash my hair before chemo?
A. No, on chemo weeks you should not wash your hair the 2 days before or 2 days after chemo. Do wash it on the 3rd day after chemo to wash away any build up on the scalp. On the non chemo weeks you can wash your hair every 2-3 days as needed.
Q. How long do I continue with the limited hair washing?
A. Continue the hair regimen during chemo and for a few months afterwards. Everyone is different and you want all the shedding to stop and see the condition of your hair 1 - 3 months after chemo. Remember it takes 6 months after the last treatment for the hair follicles to fully recover so take baby steps before going back to your old hair routine.
Q. What kind of shampoo should I use?
You should use a shampoo that is PH balanced or PH neutral. It should be both Sulfate and Paraben free. The best place to find shampoo free of these harsh chemicals is from a natural food store like Whole Foods or a Beauty Supply Store or Salon.
Q. Can I cut my hair and color it before chemo?
A. It is not recommended that you do anything other than a small trim within a month of the pre-chemo period. Cutting a lot of length off the hair, actually causes the hair follicles to become weaker, due the new lighter weight of the hair. Under ordinary circumstances this would not be a problem, but we want to avoid that going into chemo. **Coloring is not recommended for 2 weeks before chemo and 6 months after your last chemo treatment. If you want to color sooner then wait for 3 months after your last treatment and use a vegetable color with NO PEROXIDE AND NO AMMONIA.
Q. Can I use a hair drier ?
A. You can blow dry your hair with cold air but not with heat mode. Exception – if you have long hair you can use heat on the ends but NO direct heat to the scalp.
Q. How long until I can get it trimmed or cut after completing all chemotheraphy?
A. You can trim your hair a little at a time after one month. Do not trim any more than 1 inch at any one time.
Q. Can I swim in the ocean or swimming pool during treatment?
A. It is not recommended to let chlorinated or salt water on the scalp.
Q. What about exercise?
A. Obviously it is good for your immune systems and general health to try to continue your exercise regimen as much as possible during chemo. But try not to allow your hair to become too sweaty during your workouts. Head heat is not good for the hair, and if your hair is sweaty you should rinse your hair out following the shower instructions below. You can also put on a Penguin cold cap (from the home freezer) to cool your head down after workout, if you still have them.
Q. Can I get my hair wet in the shower? Can I stand under a rain shower faucet in my shower?
A. It is best to use a wall shower head, where the water is not falling direct onto your scalp – only allow water no hotter than body temperature to be gently applied to the scalp – no high pressure showers to the scalp. It is best to wash hair first then take your shower unless you like cool showers!
Q. How long does the follicle continue to be fragile after all the treatment is complete?
A. At least six months.
Q. When can I go back to using my normal deodorant/antiperspirant?
A. It is not recommended that you use deodorant with Aluminium as an ingredient.
Q. Can I wear it in a ponytail?
A. Not advisable. If you really need to do so, use a scrunchie and tie it back very loosely.
Q. What about clips to keep it out of my face or put it up?
A. Yes, but avoid putting too much strain on an individual patch of hair.
A NOTE ON HAIR SHEDDING
Hair shedding is normal; Cold Cap Therapy works by protecting the young to medium hair follicle bulbs against the chemotherapeutic drugs. The chemotherapeutic drugs accelerate old hair follicles to shed early, thus hair shedding (plus natural hair shedding occurs). Please also remember everybody's metabolism is different, so hair shedding can happen at different times.
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Thr yet: Thank you for posting this. I'm so happy cold capping worked for you! I'm being cautiously optimistic as I am using ElastoGels and am on ACF. Like you said..just keeping enough to not look "sick" means a lot.
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viktoryak, I changed my penguin cold caps on the way home, but we took streets and not highway. We would change a cap right before leaving the chemo facility, then it was mad dash to the car. When it was almost time for a change, we would pull over at a fast food place parking, or a library parking which was on our way and change the cap there. After that we had just enough time to get home and do the next cap change.
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Thr_yet: Thank you so much for posting that. It helped me to calm down a little! Happy to hear we can actually massage a little, use a hair dryer with cold, etc. I don't know why I couldn't find that (I am using penguin caps) and have only capped once so far.
My tricky situation is that I exercise a lot. Yesterday my husband set up a fan in back of our stationary bicycle and it kept my head cool for the entire 45 minute ride. Today we hiked. I made sure we picked a pretty shady trail, we left early (to avoid the sun) and I tried to shade my head as best I could (without a hat) when in the sun. The minute we got back to the car, I blasted the air conditioner at my scalp. I hope it works!
Question: IF we are supposed to only shampoo 2 full days after or 2 full days before, doesn't that look like once a week? And how many of you do just a super light rinse (cool water) in-between shampoos? Would love to hear from other exercisers!
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Susan, are you doing weekly taxol? I washed twice a week, usually. Chemo Friday, wash Sunday and Wednesday, for example. I did sometimes rinse my hair in between washes. I did exercise, usually just walking on the treadmill and riding a recumbent bike. My head sweats at the least bit of exercise, but there were no ill effects at least on my regimen of weekly taxol and herceptin.
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PatinMN: Thank you! Yes, weekly taxol plus herceptin and perjeta (every third week). I will be starting A/C in 11 weeks...4 treatments every other week.
It's nice to hear from other exercisers. You get so paranoid about what you can and can not do. But I will not give up exercise. It's too important, especially with this.
I am a former Minnesota girl. Orono!
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Hello Everyone,
I new here. Am thankful for this group lots of good information regarding cold caps. I went with the Chemo cold caps. SO far I've had only
One session so far of Taxotere and Cytoxan on April 20th. Kept the caps in the freezer at the Cancer center here in NY. Used 8 all together. Followed the directions on Penguin Cold Caps. Did not use Penguin as they were to expensive. I have a questions. The Chemo cold caps come with a shower cap for each of the 8 caps. I wore the shower cap during each cap change. My question is are we supposed to wear the cap? Did the Penguin Cold Cap users wear a shower cap underneath their cap? Do you think wearing the shower cap is beneficial? Wont the shower cap hinder the cold cap from reaching the scalp effectively? So far no shedding but getting nervous. Thanks
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Hi Lydia~
As far as I know the chemo cold caps(and others) recommend that you wet your hair before capping. However, Penguin cappers are told not to wet there hair, so no shower cap. not sure if there is a big temp difference between that two that explains the wet vs. dry.
BTW: WELCOME!
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lydialydia, welcome! Hang in there and way to go ! Glad you found these amazing people!
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I did not wet my hair I used the caps with dry hair. Just not sure if I need to use the shower caps under the cold caps as informed by Chemo cold caps. Has anyone used them? ..........
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