Cold Caps Users Past and Present, to Save Hair
Comments
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Hanging in there--is your rep from Michigan? If she is, it may be the same same one I have. Zero personality, all business which is shocking because supposedly she used this when she went through chemo. No empathy at all, all business.
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Hi all,
im using elastogel caps.
completed round 2, of 4 ac treatments... with 12 weekly taxol treatments to follow. Because I'm cold capping, My oncologist offered dose dense taxol on a two week basis for 6 times instead. Any advice on changing to dose dense two week interval taxol?
Also I would love to get info about successes with my AC plus T treatment. I keep hearing with my bad type of chemo the cold capping is not going to work? No one at my cancer center believes it will work. so far I'm just thinning...I'm stubborn so I'm doing it anyway.
Caps questions ;
I started thinning little by little since the 3 week mark. I've had 3 clumps come out 1 this am! I started with a load of thick long strong and straight blond hair. I cut 13 of my 18 inches off. now have chin length bob.
During capping I start by wetting my hair and using a bit of cream rinse and arrange wet hair to to have no part line. I sort of streamline my straight hair backwards all over with my fingers no pulling. I use a thin shower cap over this so the caps don't stick to my hair. I cap for about 6-8 hours. Starting one hour before, then for as long as I can stand it after.
I did get a tiny bit of frostbite with flaking after the first capping. This was from frozen hard wrinkles in the top of the cap material. My cold cap crew got better at smoothing the hard frozen wrinkles out the second round of chemo. On round 2 we had a problem with the type of dry ice so they couldn't get caps to -31f only -21! Round 2 the dry ice was not avail in cubes so they had to smash it and was very hard to deal with. I strongly recommend the cubes. The boys resorted to changing caps faster every 15 mins because the temp was only -21. I hope it worked I'm just 10 days out from round 2 AC.
I really want to partially cover my hair on off days since it's a mess. Any suggestions on covering it with bandannas and or skull caps? I excersize and do use bike helmets and plan to use ski helmets when I'm feeling good. The helmets alone will rip up the hair. I've been using shower caps under my winter hats to avoid pulling. The shower caps work great under winter hats but not good for social gatherings.
I've No idea what shampoo to get in the USA.. Does anyone use leave in cream rinse for cold cap days? How about using just water with no cream rinse on cold caps days? I've been wrongly rinsing the cream rinse from my hair the night of cold capping..I read this is a no-no. I can't stand to sleep in a cream rinse head. I would rather just use plain water with the caps next time?
Thanks much for any input. I lost a larger clump just now so I'm getting scared. My hair still looks normal but it is thinner now.
I'm telling myself that it was worth it just to still have hair in this moment.
My questions again;
Important option for me! ..Taxol weekly x 12 vs biweekly x6? Anyone do dose dense biweekly taxol?
Shampoo cream rinse types USA?
And what to do about cream rinse in hair night after capping? Leave in cream rinse? Or just water under caps? How avoid washing on chemo day?
What to do for covering protection under sports helmets?
I want to hear more about success with TAC or AC n T gals? Especially blondes. No one in my cancer center believes in what I'm doing with the caps! I need some inspiration.
Stage IIIa grade 2 invasive ductal carcinoma with lymph node involvement. Neoadjuvant Chemo- 4 AC plus 12 Taxol. surgery to follow chemo. Followed by radiation, tamoxifen. I'm 53 years old
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hello,
I wanted to connect with you because we are on the same chemo and our infusion dates are very similar.
I'm using elastogel caps. I'm wetting my hair during infusion and using a bit of cream rinse and a cellophane shower cap..might be a difference with our caps. Elastogel says wet hair and they provided the shower caps.
So I read you are researching shampoo? I'm also trying to figure that out. I read baby shampoo is not always recommended.
I am also noticing our shedding schedule is the same. I started thinning on day 21. I've pulled three larger tangles or clumps out in the last few days including today. I'm getting worried. No bald spots yet..My hair still looks fine though messy. I'm using a bandanna cause I can't stand not to mess with it otherwise.
Anyhow if you have any tips send em over!
What are you doing while sleeping? Silk pillow case?
Do you wet hair with penguin caps?
Hugs I'm right there with you!
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Hello!
Elastogelgirl - I did AC 4 rounds and I just finished round 2 with my dose dense Taxol every two weeks. I have 2 more to go. I am using Penguin Cold Caps. I have blonde, wavy (when not blown dry) shoulder length blunt hair. I did pretty good through the AC, lost maybe 30%. Have thick hair so it wasn't noticeable at all.. On the last two rounds of Taxol I have had HUGE shedding. I am probably now at 50%. My MO said the does dense Taxol would be harder on my hair and it has been. I did sway 3 times from the suggested process and blew dry on warm the ends holding them gently straight out as to not warm my scalp. So could have contributed to some loss. Otherwise I do everything they advise. I have no bald spots and I believe I will have hair when I done but it'll be thin. I don't have to wet or apply cream rinse with Penguin so can't offer any advice on shampoos or cream rinse.
I also wonder whether all the night sweats I get from the chemo that makes my head hot, sweaty and is causing further damage. The sweat I am sure contains chemo residue. Every night I wake a few times with a wet head. Anyone else?
Willa - I am so glad you are finally in a little brighter spot with being able to get your hair done soon. I know what you mean about catching a glimpse in a mirror. My Penguin rep asked me to send him a picture of my hair. It took several shots and even the one I sent him I was embarrassed with.. I am going to try the Acure shampoo Tunegrrl has recommended. Kind of scared to switch up my routine but hopefully it won't make me lose more.
Tunegrrl - Thank you for the shampoo recommendation. Congrats on your brow and lash progress! Hope your appointment went well.
Hangin - Hope you get the shampoo you need
and the shedding slows down.
Happy weekend ladies...0 -
Yes Pamela23, Michigan.
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thank you! I am giving the caps a try - I go for second infusion next week. The first session was a breeze for me - I was mostly out of it after 45 minutes of benedryl before taxol - poor DH was hopping up and down switching things in and out and on and off before, during and after the infusion.
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Hey, thanks to all of you for taking an interest in my shampoo + conditioner recommendation. I hope those who end up trying it enjoy it as much as i do!
Good news from my appt with the radiation oncologist yesterday....
Although i had IDC and DCIS removed in december, it was not the original DCIS from back in the biopsy days of summer. That original 7mm DCIS has gone missing, or is hiding from the post-surgery imagery (mammo + MRI).
My surgeon proposed we carry on and act natural, repeat the MRI in six months and follow it closely with annual MRIs in case it turns up again. He said if the oncologists have a cow i'd need a mastectomy. MO deferred to the RO, and i saw him yesterday, and had a long and detailed appt.
The radiation oncologist believes i will have a 15% chance of needing a mastectomy down the road. I am tremendously relieved. I want to get on with my life, and mastectomy + reconstruction would make my breast cancer experience drag on longer.
My RO and surgeon also believe
- DCIS is deactivated by rads in about 70% of cases,
- that my missing DCIS may possibly have been cleared by chemo + herceptin (since 15% of biopsied DCIS turns out to be IDC in final pathology)
- DCIS becomes invasive in 30-40% of cases (so watchful waiting is not a crazy idea in my case)
- If it turns up again after radiation, a mastectomy would be strongly advised because you can't do rads twice on the same breast
- I need only worry about my breast at this point, not my life. They are not worried about the missing DCIS coming back and killing me under our current plan.
Lots of detail in this msg, sorry it is not the exactly right place for it. But there it is. I am happy.
Best wishes to everyone!
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hello Luvmyys,
thanks for your reply. So given a choice would you do weekly taxol x12 or dose dense? I'm not sure if my dose dense bi-weekly taxol was supposed to be 4 or 6 times...did you get the choice?
Sounds like our treatment hair color and shedding are similar. My hair is straight and I'm lucky I don't have the urge to blow dry.
Elastogel instructions are to wet hair down. They supply shower caps to prevent hair from freezing to cap.
My worst offense is the rinsing the cream rinse out the same night as chemo. To prevent urge to rinse I'm going to try using just water with no cream rinse with my elastogel caps for round three AC. The wetness does distribute the cold more evenly I think. I did get ice in my hair first round was slightly too cold. I had a tiny bit of frostbite with flaking. Not good!0 -
Elastogelgirl, the conditioner or cream rinse is to keep the caps from sticking to your hair when the water ices up. Probably more important to use it than to avoid rinsing it out later that day. Good luck!
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hello tunegrrl,
Okay I'll use the cream rinse. I'm am afraid to change things since it's worked so far. Elastogel does provide shower caps to keep caps from sticking. But if the cream rinse prevents Any freezing to my head I'll stick with it. I think elastogel said just water? Not sure. Instructions were very slim on everything.
I'm interested in the Acure shampoo and rinse? Is it strongly scented? I can't do scented...especially if I start associate the scent with the chemo..
I can't look at the elastogel caps in my laundry room without getting a bitnauseous.
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I just used water and a shower cap. After my second infusion of carbo taxol 3 weeks ago i had almost no shedding. I changed caps every 20 min and kept changing caps for about 3 hours after. (at home fell asleep with one on so stopped at 3 hours.
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Elastogelgirl--sorry those of us on Penguin can't help. We are told to wash our hair 2 days before to make sure there's no build up from product. On the day of it goes on dry hair, no wetting or creme rinse. Then we wash 3 days after. Good luck to you!
Tunegrl-- you must be relieved! I have a question, how many cancerous spots did you have in August? Were they in the same breast? How did you catch it, on a mammogram? I s it common to have more than 1 duct be cancerous at one time? It's very interesting to me.
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hi janetsam,
So you used elastogel? Just water with shower cap no problem? That would be great!
My hubby doesn't want us to fall asleep with the cap on since they will get way too warm eventually, I'm sure you know this just wanted to say it. I was thinking I'd go to bed with a cold cap the second round he is smarter than me. We set an alarm even on the last one of the night.
And yes I wear them until I'm worn out!
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Hi Pamela23, yes apparently it is very common to have more than one cancerous lesion, and DCIS is so common that lots of people probably walk around with them in without it ever causing a problem. Only 30-40% of the time do they go on become invasive my surgeon estimates.
I had three tumours back in August, but we only knew about two of them until surgery pulled out a different DCIS than we had in mind. All in the left breast, around 12 o'clock, halfway btwn nipple and collarbone. Since they were close together and i have a big rack (32F), i was eligible for a lumpectomy. A plastic surgeon did my incisions, then rearranged the tissues and gave me a lollipop lift after my breast surgeon removed two golfball-sized chunks. He did such a nice job with the lift, it almost makes breast cancer seem like a good idea. He will lift and reduce the other side to match, six months after i complete rads. For now my left nipple is about an inch and a half higher than my right. My bras all fit normally and i look unchanged in clothes, which is a nice surprise. I am told i should expect to lose about a cup size by the time i settle in to the final results.
Felt a lump in May, mammogram, ultrasound and biopsies in June identified the lump as IDC plus a separate bit of DCIS. Mammo + MRI after my lumpectomy did not find the original DCIS, so it either was actually invasive and subsequently cleared by chemo + herceptin, or it is still hiding in my dense breast tissue. The radiation oncologist thought i was unduly obsessed with the idea of needing to get the remaining DCIS out.
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yes i am using elasto gel and yes i just wet down my scalp with water and use a shower cap. caps slide on and off easily.i only have 4 caps but was able to lower temps to -34 with crushed dry ice in baggies stuffed in cap and around them. this series i am only having 3 rounds of carbo taxol so it may be pretty easy on my hair. one more to go next week.
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okay I'll wet my scalp no cream rinse. Then I won't be needing to rinse afterward!
I'm betting you will have a great outcome! Your doing it right! How many lbs of dry ice do you buy?
We ran low and temps went up to -21 So we changed caps more often. Made the chemo seem to go by faster for me. I'm so hoping it won't fail. Obsessing actually, wish I didn't care so much about my hair!
I'm also doing Dr Longos fast mimicking diet 72 hrs before chemo and 24hrs afterward. It's supposed to put your normal cells into hibernation so the chemo will do less damage. I've done it for both rounds of AC chemo and I think is working great. Kind of the along same theory as the caps keep the cells quiet..
Here's a link..I don't know if you feel well enough to try this. If you are I am glad to give you my food plan and tips to get thru. I'm thinking it may help with my head of hair too
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elastogelgirl - My Dr. gave me the choice to do 12 weekly or 4 bi-weekly because I was cold capping. She said the studies show they are equally effective. After talking with the Penguin Cold Cap representative we made the decision to do the 4 bi-weekly. The rep said they have good results from either protocol. I pay a representative to do my cold capping during each treatment. He drives me home after treatment and stays with me for now 3 hours after, it was 5 hours with the AC. With young kids and paying for each cold capping session it seemed more practical to do 4 bi-weekly. I don't know how the last two will go. I have complete numbness in my last three toes on each foot. I was told I may not be able to complete all 4 or may have to stretch them out with lower doses. I was looking forward to my last one 1/31, but I guess feeling your feet may be more important 😊. I have no nausea like with AC but extreme fatigue and body aches. I do exercise most every day, it does help. I was like you all smells associated with cold capping or chemo would instantly make me get sick. I couldn't walk in the frozen section of the supermarket or open the freezer without holding my nose. My first round of Taxol I got sick the whole treatment. I was still nauseated from the AC and the cold capping really made me sick. The last Taxol was easier.. so I think 12 weekly would be easier on your hair, but I have seen women on here who have had great results with the 4 bi-weekly. I would love to hear from those who did 4 bi-weekly to see if their shedding increased with Taxol then tapered off? Getting nervous!
Tunegrrl - That is excellent news, congratulations. Thanks for sharing! Good news gives us all hope.
Happy Sunday ladies... I am going to try and escape tonight and watch the Golden Globes..ugh! Maybe all the perfect hair may not be to much of an escape....0 -
Hi all,
I have the bad chemo regimen for cold caps. And I'm blonde, and I'm using elastogel....
Words from anyone who has lost so much hair that they wish they would not have tried cold caps? I still look normal but it's coming out all the time! And I'm still only 2 rounds in.
Im hoping this capping is just worth it ...even if just to reduce follicle damages and have hair grow back faster? I'm thinking if I get rediculously thin maybe I should just keep going because it's better for the regrowth? So want it to be worth the effort.
I also read that even super thining of hair is more comfortable than shaving?
What is the regrowth with taxol all about? Is that real hair growth or just stubble that is not going to hang on? I'm confused about taxol and hair loss vs hair growth? My oncologist told me it would grow during taxol. I'm having a hard time believing this
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hi luvmyys,
Thanks for your reply! The 4 dose taxol is probably what my oncologist is offering. Wow ! that would be so much easier than 12!
I wonder about doing your caps longer afterward? We are doing it ourselves...we could go all night long if it got us out of doing 8 more rounds! I have to drive 1.5 hours each way to treatment. We are capping in the car on the way home
I purchased the hands and feet cold elastogel booties too. I find them to be excruciating...I can't wear them at -31. I can only tolerate around +31f..I've been using them and have no issues with my hands and feet on AC. I do hear taxol is hard on hands and feet. Maybe these will help me there..
Keep me posted if you would on your progress! Only two more for you! yay! I'm hoping you can tolerate it!
Hugs Cherisse aka elastogelgirl
PS I'm also doing Dr Longos fast mimicking diet 72 hrs before chemo and 24hrs afterward. It's supposed to put your normal cells into hibernation so the chemo will do less damage. I've done it for both rounds of AC chemo and I think is working great. Kind of the along same theory as the caps keep the cells quiet..
Here's a link..I don't know if you feel well enough to try this. If you are I am glad to give you my food plan and tips to get thru. I'm thinking it may help with my head of hair too
http://news.usc.edu/103972/fasting-like-diet-turns...
https://news.usc.edu/63669/fasting-triggers-stem-c...
I am trying to find a thread on this diet..maybe I should try and start one.
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Elastogelgirl - I have heard about the fasting diet, but haven't read anything about it. Thanks for the links.. I read through them. Ok, so you don't eat anything for 72 hours prior? Just water? Wow, you are strong.. I don't know if I could do that. Although I eat well, food has been a comfort to me and I find I am craving things good for my body and I've lost 10 pounds. I am at my limit for losing or I will look sicker but I do find the Taxol steroids make me really hungry first few days after and without the nausea like with AC I could do some damage. Do you have bad nausea? What medicine did the doctor give you for it?
I've only seen a few say that cold capping wasn't worth it, that they eventually had to wear a wig towards the end. I also have read some cut their hair short after chemo just to keep all the hair at the same length and quality.. it's amazing to me how many people haven't heard of it. Regardless of the final outcome I still have had hair for my 4 months of treatment. My kids, their school and some friends don't know what I am going through. I may have thin hair when it's all over but I think it will look more presentable faster... at least that's what I am hoping.0 -
Luvmyys-
I'm doing a fast mimicking diet. It is 500 calories per day, 56g carbs, 11g protein, 23g fat. So I'm not starving, but by the time I do chemo I'm in a true ketonic state. I'm testing this with keto stix.
My working strategy--say I have chemo on Tuesday. I eat to full till midday Saturday, then I quit eating anything for the rest of the day. Sunday I wake up not feeling super hungry but I have black coffee (I hate it black but I have to have coffee) this coffee is the devil that makes me hungry. So I start eating things that don't add up to much like cooked spinach with a few mushrooms etc metered out all day till I get to the 500 cals ..I use a gram scale and Google all foods that I'm thinking will be low cal and that I want to eat. I weigh out my options on everything I eat... By Sunday afternoon I'm not hungry at all. Monday is okay but I start to get tired, especially by the end of the day I start not to care if I get to 500 cals... Lucky I don't have any nagging responsibilities to worry about, my hubby is taking care of things.
By Tuesday its chemo day and I'm mentally checking out and don't care about food. The day after chemo I'm starving from steroids still counting calories and waiting to start really just eating! At the 24 hr mark from the end of my chemo. FEAST time! Usually a big dinner
I hope that makes sense....starting the diet midday on the first day sounds weird but it helps me to get thru the worst part of being hungry.
You can't do this if your not feeling well or have a hectic life.
My oncologist acknowledges Dr longos findings but for liability reasons will not speak to my program at all except that we have reduced the steroids to 10 mg since they interfere with the ketonic state. I'm believing wholeheartedly that I have fewer side effects and for a shorter duration. I take zofran for nausea and it works fine.
I'm really really dry after chemo. My worst side effect is constipation after both my chemos a true struggle for me! I like the dose dense taxol for the reason of my diet and the caps. I can't do this diet every week!
My hubby wanted me to extend the diet just a little like just thru the whole day Wednesday and start eating Thursday.. after my Tuesday chemo..since it's supposed to work so well on the cancer...I couldn't. I was just eagerly waiting for that 24 hour mark. I think the steroids took away all my dieting will.
note ...I've done the first 2 days of this diet 2 extra times. My 2nd chemo got delayed twice. So four times nowI've been able to get past the hunger on day two. I've never dieted in my whole life. I'm an eater!
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Elastigelgirl,
I have a new friend (cancer survivor) who had AC then Taxol. She is one of the people who encouraged me to do cold caps, anyway, she did not, but she said she started to grow hair back during Taxol! So it worked for her. I still have one more AC before Taxol.
Your diet sounds excruciating, but if you like it go for it. I'm finding it harder and harder to taste and find foods I like to eat.
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I fasted my first two chemos (complicated...am having 'sandwich' treatment, chemo x 3' radiation, chemo x 3 for uterine cancer, didn't know about cold caps first three chemos 😢). I was losing too much weight and having trouble eating and gaining through this so haven't fast since but i do believe the evidence for fasting making chemo more effective. i spend a lot of time reading about cancer, am taking supplements that are supposed to help with prevention and hopefully with recurrance eper ok from oncologist.
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Hanging in
Thanks for the encouragement on the caps, taxol, and my diet. I sure hope I feel good enough to keep it up. I will try to keep posting about my progress on both regimens! It is a way of having some control over how this all goes!
My diet is really hard at first on day two, then it's easy, then hard again with the steroids. It does kinda ruin a good day or two of feeling right again too! But I think it helps so much it's a trade off. I do try to gain weight in between too. I've lost almost 20 lbs since my diagnosis with stress and the diet but I can afford a few more lbs.
Janetsam- I'm routing for you! Thanks for the thumbs up on the diet!
Hugs everyone
Cherisse elastogelgirl
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Elastogel - So impressed with your will power. Please keep us posted on your progress. I wish I could have thought about the fasting. Maybe being so sick and not eating a lot before the AC rounds got me close.
Maybe some Taxol dose dense alumni can post about their hair shedding so to get an idea of what I'm in store for to finish this out and for you to make a frequency decision.
When is your next AC?
Hangin - I am always interested in supplements people are taking. I only do a multi-vitamin and eat well.. scared to do anything else and my MO is very strict. I get sick on Ativan but she won't let me switch to Xanax to make it through the rough times. Also would love something to help me sleep at night, nope won't give me anything. I guess I understand, it would be something else I'd have to wean off of.
Tunegrrl - ordered the shampoo and conditioner off Amazon.. also a magnifying mirror so I can see my new lashes and brows come through (when they do) ... Did you use Latisse? I have some but haven't started using. From what I've read it doesn't really make sense until they are all gone and its used to aid grow back. I have pretty thick brows but it seems the darker brow is gone and just the light hairs have remained. I have a full brow but it looks like I don't have any because they are so light. Maybe I should brush with a dark shade. I don't feel like going out much anymore, so hard to go shopping around especially a beauty store, I think they'd say "honey you need more than brow shade"😮.
Happy night ladies...0 -
Luvmyys-
Thanks I need willpower boost for certain.
I also have nightly sleep problems. Nothing really keeps me asleep all night. After my last chemo I got permission to use NyQuil. I was very comfortable and slept quite well on it. It causes me dry mouth but was worth it. I have ambien and Ativan but the NyQuil has been more comforting. I get bad morning headaches a lot ,,that's how I ended up trying NyQuil. It helps with other symptoms. I was worriedl they would not want me to use it. I would ask before you try it.
Taxol-...would love to hear about anything anyone has to offer about dose dense taxol vs weekly.
My next AC was supposed to be Tuesday! We are having quite an amazing weather event here in Tahoe. It's raining hard and the heavy snow pack is melting fast. we now have huge flooding and a mess of soggy snow. Now it's supposed to turn to back to snow and freeze the flood water and then bring three to four feet of new snow! between tomorrow and wedesday night! It's all hitting around my Tuesday appt.
So I was supposed to be doing my fast today. Traveling to and from the distant cancer center is going to be insane or impossible on Tuesday. 1.5 hours away. road closures and land slides have already begun.
So the fasting does add a large degree of difficulty in more than a few areas. I've started and stopped three times now. I'll start fasting again Monday afternoon and hope for a Thursday chemo. I hate the delays.
Wish me luck for making chemo Thursday!
Cheers c
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Shampoo - I asked my cold cap advisor which shampoo, they don't make specific recommendations. But then I asked here which is more important (no parabens and no sulfates) or ph balanced
She said no parabens and no sulfates was more important. So (she is implying) some of those organic shampoos posted earlier are a better choice than Johnson's Baby Shampoo, which has sulfates. I ordered Acure off of Amazon. I know folks have suggested looking in Target and reading labels, but I get nauseas bending over, so that is not going to work for me. Sadly I get nauseas even on good weeks.
I guess I should have asked this question before I started, but I was doing what I could at the time.
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I'm think I'm going to try the Penguin Cold Caps. How hard is it to get the dry ice? I've seen some talk about cubed or shaved and I'm just looking for some input on how this whole process works. My Penguin rep isn't real responsive. She pretty much just emails the info. and leaves it at that. I'm just amazed that even my nurse friends and even cancer survivors haven't heard of the cold caps. It almost makes my angry and I want to do something about it after my ordeal is over!
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I'm think I'm going to try the Penguin Cold Caps. How hard is it to get the dry ice? I've seen some talk about cubed or shaved and I'm just looking for some input on how this whole process works. My Penguin rep isn't real responsive. She pretty much just emails the info. and leaves it at that. I'm just amazed that even my nurse friends and even cancer survivors haven't heard of the cold caps. It almost makes my angry and I want to do something about it after my ordeal is over!
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I posted this to the forum on chemotherapy and getting through it, and someone replied that I should post it to the Cold Cap site as well. So here it is. I learned about cold capping from "stephanie's terrific tips for getting through TC" on the Chemotherapy site.
Stephanie, thank you so much for posting these tips. I just completed 4 rounds of TC in October, and had a bilateral at the end of November. This was a recurrence or most likely a new tumor in the same breast. In 2009 I had a lumpectomy, radiation, and Tamoxifen. This time in 2016 I had 4 rounds of TC, a bilateral, and will start hormonal therapy soon. I was 58 at the time of the diagnosis. The bilateral was my choice vs removing just the breast with the tumor. I never would have known about cold capping if I had not read this. Your post also reminded me to drink lots of fluids, rinse with salt/baking soda to avoid mouth sores, and exercise even when feeling really crappy. My oncologist also emphasized fluids, exercise and rinsing.
I kept maybe 40-50% of my hair, and had a few bald spots. Both the surgeon and oncologist were impressed with how much hair I had left, and said I would have been completely bald without cold capping. It is really important that you talk to your oncologist about cold capping. The first clinic would not let me do this and did not seem to know much about it, so I switched clinics. The second clinic knew about it and were very interested in how well it would work, but could not provide any support. There is an FDA approved cold cap, DIGNICAP https://www.dignicap.com/ that the clinic manages, which may or may not be available in your area. It was not available in Idaho. I used chemo cold caps http://chemocoldcaps.com/ . It takes lots of support to do cold capping, you cannot do it by yourself. I wore a cold cap for 1 hour before infusion, throughout infusion, and for about 4-5 hours after infusion. This was a lot of time for any one person to commit to, so friends signed up up for 2 hour shifts. Chemo Cold caps uses dry ice to keep the caps cold and has an agreement with AIRGAS (makes dry ice) for a discount, if there is a distributor in your area. None in Idaho, so I bought retail, check around for prices, it varied by about 60 cents/pound, which adds up at 80 pounds per session. Retail is also unlikely to have pellets, so you have to break up the blocks, easy to do, but another task when you are already stressed out. ( talk to AirGAS, some reps know all about what you are trying to do, some might not), and may be able to provided more tips about Dry Ice).
Several companies offer cold caps for chemo therapy, I have no idea if one is better than another. I did redesign the forehead-ear protector. The directions called for using the ever versatile pantiliner for protecting the ears - changing soggy pantiliners sounded uncomfortable so a friend ran out and got some long foam craft. We used the original template, then extended the ends to have flaps for the ears - it worked great. Many (most?) will experience the "big shed". This happened to me on the morning I was going in for the second infusion, so 21 days after the fist infusion. That week I had been losing hair at about twice the rate as normal. The "big shed" was most of the hair I lost, a huge clump. I almost cried, because I thought the cold capping was not working. But again, both the surgeon and oncologist were impressed with how much hair I still had at the end of the chemo. Hair loss and effectiveness of cold caps does vary. Check and make sure they fit, maybe even send the company measurements of your head. They are probably "one size fits all" which seldom do. The first set I got were too small, so the company sent the largest they could find,
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