Cold Caps Users Past and Present, to Save Hair
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Istreett - I started cold caps and chemo on July 19 (AC x 4, taxol x 12) - I am not and expert, but these products so far have work for me. Tip: Try to keep in snack bags the hair you lose daily during the weeks before your first treatment, you will have a better perspective about how much are you losing during chemo
You are supposed to wash 3 days before chemo and 3 day after chemo. Yes, you can wet it but just with cold water and never directly from the head shower to your hair. I literally bring a bucket with cold water and scoop it. When you wash your hair it is heavy and pulls on the roots a lot, which are barely hanging on as it is. I just let my hair hang down and I wash it in sections. I always make sure gently comb any tangles out before I wash it too. I do use conditioner and rinse it out too before and after shampoo, never in your roots. Make should to dilute your shampoo and conditioner with cold water. I then put a light towel to absorb the water. I do comb (wide tooth, starting from bottom) with Alterna Hemp Organics 'spray leave in conditioner' in the tall orange bottle. Now these products have worked for me, but what I really thinks has worked for my to avoid tangles it's having my hair braided and be extremely gentle when I do it.
Shampoos: DermOrganics and Pure Results Moisture Shampoo by Regis Designline
Conditioner: Deva Curl ' One Condition ' (no roots)
Styling products: I use just the Alternam Hemps Organic leave conditioner. Nothing that contains alcohol, parable, sulfate or gluten. (Yes, I do not look like myself this summer, but I have hair and a new look!)
Latisse -Some people use Latisse to keep the brown and lashes (results vary) If . You google "Generic Latisse" and a few companies come up. You purchase it w/o a prescription for about $45 or$55 with mailing (it's from India). Regular Latisse is bought here with a prescription and costs$100.
Deodorant: I purchase my antiperspirant at whole foods; they have different brands and variety. The trick is to apply it several times a day. I have not found one that works 12 hrs.
Wings: I tried and I looked terrible, so I decided than in case I needed I will have a piece made specially for me.
Good Luck!
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WhoooHooo LivCar!! - you made me laugh and cry all good things to do during Chemo Only happy thoughts for you during your journey FS
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Livcar - I am soooo happy for you!!! I like your attitude:-) and like Dexxy said, you made me laugh & cry:-) All the best with the FS.
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i forgot one more good thing about chemo ... no periods! Gees ladies, this is such crap. If we can keep our sense of humour during this, imagine what we'll be able to endure! Thanks Deb and others for juicing and supplement tips. Keep'em coming!!
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livcar
what are you going to do with your hair now? are you going to cut your 20% short and see how the rest grows in?
I have only 20% on top and a big bald spot at the crown that is growing forward, but interestingly, I have most of my hair on the sides and the back. I think I will have to break down and get a wig (still one more AC to go) and cut what I have short, though I don't want to part with any little bit I have!
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Thank you so much Ralston - very helpful info!
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brcababe1 - I'm going to wait til the shedding slows down. For now, caps and my do-rag for errands and home. Wig for going out (which isn't often!). When the shedding slows, i'll colour it and maybe trim an inch or two. We'll see how that looks and go from there. One day at a time. i find that 10 hairs drop and my hair is totally different than it was 5 minutes before! What a drama this is!!
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Hi all just back from clinic and showed them them my bald top and thinned sides. They will be switching me from Dignicap to Paxman, apparently this has a better head fit than Dignicap. Hope I can save my sides still
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hi livcar,
yeah, I am rocking the sarahjessicaparker look you posted previously when I go out to the store etc.
in a couple of weeks I will need to be at work more and will probably have a wig.
I have been able to pass with wide headbands for a while too.
it really is a drama!
I did notice a little stubble on my bald spot (just happened to, while looking at it for the 10th time in the day!) which is encouraging.
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Hi all:
Haven't been on in a while...going back and for for radiation (120 miles r/t). Almost halfway finished with rads and so far, so good. Continuing to do well with Herceptin too. Even though, I lost nearly 70% of my hair, I have no bald spots just really thin and lots of new hair coming in. Monday will be 10 weeks PFC. I have days with shedding and then a day here or there with none so I'm hoping the shedding is winding down.
Good luck to all the newbies!
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Frances-Keep us posted on the Paxman- you are the only person I have heard of using this so I'd love to hear how it feels and works
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LivCar - as far as coloring goes look into Henna, it does come in a variety of colors and most are 100% natural
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Hi Ladies,A friend of mine e-mailed me a new study that was just published. The study focused on new ways to treat Her-2 postive Breast Cancers or breast cancers not fuelled by estrogen. I am going to cut and paste into this post. I hope everyone is doing well. I am 15 days post first infusion. Have not stareted shedding yet.Study finds new points of attack on breast cancers not fueled by estrogenJuly 11, 2011Tags: Featured, BasicResearch, BreastCancerMyles Brown, MD Although it sounds like a case of gender confusion on a molecular scale, the male hormone androgen spurs the growth of some breast tumors in women. In a new study, scientists at Dana-Farber Cancer Institute provide the first details of the cancer cell machinery that carries out the hormone’s relentless growth orders.The study, published in the journal Cancer Cell on July 12, provides scientists with several inviting targets – cell proteins that snap into action in response to androgen – for future therapies. Drugs that block those proteins could slow or stifle tumor growth in many breast cancer patients who are not helped by standard hormone-blocking agents such as tamoxifen.“We identified a novel subtype of breast tumor which grows in response to androgen but not estrogen, and have uncovered the signaling pathways involved in its growth,” says senior author Myles Brown, MD. “And we’ve demonstrated that drugs capable of blocking these pathways, including the receptor for androgen itself, can inhibit tumor growth. This opens new avenues to the treatment of some women with breast cancer that doesn’t respond to standard endocrine therapies.”About 70-75 percent of breast tumors are fueled by the female hormone estrogen. Their cells are loaded with estrogen receptors (ER), trap-like structures specially shaped to ensnare estrogen molecules. When estrogen becomes lodged in an estrogen receptor, it sets off a chain of events that prompts the cell to grow and proliferate. Drugs such as tamoxifen block estrogen from entering the receptor, thereby thwarting the growth process.The remaining 25-30 percent of breast cancers, dubbed ER-negative tumors, lack estrogen receptors, and thus do not respond to tamoxifen and similar agents. Scientists know that the majority of breast tumors – even those with estrogen receptors – have receptors for androgen, but the reasons for these receptors’ presence, and how they might influence tumor growth, have been unknown.It might seem odd that some women’s breast cancers carry receptors for a hormone associated with males, but androgen is also involved in the normal development of secondary sexual characteristics in females, Brown remarks. Scientists have theorized that androgen propels the growth of breast cancer cells that have receptors for androgen but not for estrogen. The current study set out to find if that is the case and, if so, why.Using published data on the genomic make-up of breast tumor cells, Brown and his colleagues found a distinctive group – accounting for five to 10 percent of all breast cancer patients – that had large numbers of androgen receptors, no ERs, and an oversupply of a protein called HER2. Cells of this type proliferated rapidly when exposed to androgen.To understand the mechanism behind this growth, investigators did a mass screening of these tumor cells’ genetic material to see which sections of DNA bind to the androgen receptor – an indication of which genes the receptor directly switches on and off. By combining these findings with a survey of all the genes active within these cells, the researchers found that the androgen receptor governs two “transmission lines” – or pathways – for growth signals. The pathways, named for important proteins within them (WNT and HER2), play central roles in cell division and proliferation.When researchers used drugs to handcuff the androgen receptor or the WNT or HER2 proteins in ER-negative breast cancer cells, tumor growth slowed – both in laboratory cell cultures and in mice grafted with the cells.“These findings are strong evidence that therapies that shut down proteins in the WNT or HER2 pathways, or block the androgen receptor itself, can be effective anti-tumor agents for women with this variety of breast cancer,” Brown says. “Combination therapies that target proteins at different points in the pathways are likely to have the greatest success.”The study involved a close collaboration between Brown’s lab and the computation biology group at Dana-Farber headed by Shirley Liu, PhD. Brown and Liu recently founded the Dana-Farber Center for Functional Cancer Epigenetics in order to make the genomic and computational approaches used in this study more widely available to the scientific community.The co-first authors of the study are Min Ni, PhD, and Yiwen Chen, PhD, of Dana-Farber. Co-authors include Elgene Lim, MD, PhD, Shannon Bailey, PhD, and Yuuki Imai, MD, PhD, of Dana-Farber; and Hallie Wimberly and David Rimm, MD, PhD, of Yale University School of Medicine.The study was supported by grants from the National Cancer Institute, National Institutes of Health, and Department of Defense.0
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ArleneA: That is great to hear about the new hair growth. I am now 1 week out and keep inspecting my scalp for new growth. It is a little too early for that and I do expect one more big shed. I probably shouldnt inspect my scalp daily with a magnifying glass, it will just drive me crazy. But you know how it is
.brcababe: I too lost most hair on the top and crown - my part has ever widening and lengthening and the crown requires a comb over. My sides are thin, but not that bad and the back isnt too bad. I am glad to be finished chemo - TC x 4, but now I am waiting.
I do not plan on going to a salon for a cut or trim until the shedding slows down or until Octoberish. I will probably try to color with foils only in Dec if I can wait that long. Fortunately I do not have any gray - but who knows what color will grow in, but I wish to return to my blonde highlighted hair. My hair color right now looks very mousy, dirty blonde, certainly not what I am used to.
I had an appt with a new MO yesterday, long story, I do not connect with my current one. Anyways he was shocked that I had hair after 4 cycles of TC. He had heard about and seen the caps in San Antonio but saw me a proof that they work.
Keep capping ladies!! Hugs to you all!! Debby
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Hi everyone,
I have not posted in a very long time. I am 13 weeks pfc. I used the elasto gels and ended up with a huge bald spot on the top, hardly anything left on the sides, my back thinned a lot but hung in there. I did manage to keep my bangs (picture a thin, bald mullet with bangs). I am still shedding and hair washing day is still very scary.
With all the hair loss (about 80%) I am still happy I used the caps. I am here to offer encouragement to those of you who are now experiencing the same thing I went through. Bandanas are the IN thing so take advantage of this, I have been wearing one since April. Even though you have lost the top you can fill in the sides and back with Human hair clip in extensions, these have been a life savor for me. My bald spots are completely filled in now (about an inch) and with my extensions in and my hair freshly washed I actually feel normal right now.
In December I am hoping to hilite my hair and get more permanent extensions in until my hair grows out.
Ladies even with massive hair loss this is doable, I was celebrating my last rad day and end of all treatments on monday with a bon fire party and my neighbor came over to see what was going on and my daughter told her, she could not believe it ( I never told her), I see her everyday and she had no clue.
I am a hair dresser so if any one needs help or advice you can pm me and i will do my best to help. Lee
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leeann, that is encouraging.
I lost all the hair at the crown after AC #2, interestingly, after #3 just some shedding and thinning, but not nearly as much loss as I had around day 20. we'll see what treatment #4 brings.
I have been able to wear a very wide headband/scarf to cover the bald top, it is just getting to the point to where the bald is peaking through and I have to wear a bandana.
without a cover, I look like one of those monks with the bald on top of their head and then normal straight bob on the sides and the back!
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Thank you Leeann - Day 19, I am shedding more than normal but not that much. Definitely, my hair has not thinned and I do not have any bald spots. In fact, I do not think I have shed at all from the hair crown (I am using the cold head bands as well). I wear braids and I barely touch my hair everyday. No tangles so far. I am waiting for Day 21 to see what happen. My third AC will be on one week and I still will have 14 more treatments, but I will not give up!!
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Hi everyone,
I am almost 4 weeks PFC and people tell me I look great when they find out I had chemo. My hair is shedding more than ever before this week , scary and my scalp tingles too, like you Frances. I am thinking I need to start drinking more water like I did when I was having chemo. It couldn't hurt and maybe would help clear out toxins and the herceptin which I will have to take till next March. I thank all of you for your suggestions. Am now trying L Carnitine and B^ for the neuropathy thanks to this discussion group.
istreet- Regarding wigs, I got one for free from the American Cancer Society at the beginning of my chemo, just in case. I plan to give it back to them unused. .
Livcar_We made it Big hug and contrats!!!
Dexxy- Glad your puppy is doing better. My 16 year old cat developed a bleeding paw in the past couple weeks and the vet could not stop the slightly bleeding paw. The vet sent me to a cat oncologist because they thought the cat had a tumor perhaps on his pad on the paw. The oncoloigst discovered some nasty bacteria in paw and put the cat on antibiotics which made him sick and he then stopped eating. I had to board the cat cause they said due to my immune compromised state it was unsafe for me to care for him. He is now back home and eating again and I care for him (since my white count is back up). However I do wear gloves, mask and cat is in isolation in bathroom. Our pets are important. They have done studies that show cats can lower people blood pressure with their purring.
Soccer girl- Some of the clinic nurses at my infusion clinic told future chemo patients that caps wouldn't work. They see me now and say nothing. I guess their main priority is physical health but they should know that mental health and well being plays a big part in healing. My onc says she now wants to take my picture. We are pioneers and advocates. I am happy to be part of this discussion group of wonderful powerful women.
Question to graduates- When do people generally start to see new hair growth? I am almost 4 weeks PFC and have seen no growth anywhere on my body?
Thought for the day- A bad hair day is better than a no hair day!
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Hi All-
Just checking in and reporting. I had my last chemo and cold cap, therefore, on June 24th. I am starting to get little hairs where I lost it on my head but no where else. These hairs are very tiny and not growing fast but it looks better than my white skin when I lift my thin, thin hair up! I miss my full head of hair but having hair at all has been a lifesaver for me. For anyone going on to radiation, it is not too bad- at least for me, now with 13 more treatments to go out of 36 total, I am using 99% aloe and a really clean lotion on top of that and though I am very red and very sore, no blisters yet. Hope everyone else does well ongoing!
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My bald spot happened after my first shed and continued spreading, It is now completely filled in 3 months after finishing chemo. Continue to use the caps and it will fill in quicker.
Hair every where else is back and I am shaving legs and underarms normally now and i have never been so happy about it
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Hi ladies~ about regrowth....mine was similar...11 or 12 weeks PFC all of a sudden everything was back, had to shave (one day nothing next time in the shower tons and 1/8 to 1/4 inch) noticed sideburns etc. Took a little longer to feel like hair was thickening.....a few trims later it's getting back to normal. I can't believe I'm about to hit my 7 months PFC, I have my exchange Tuesday .....FINALLY.
serenity- my scalp tingled, itched, scaled for a few months...was sure many times I'd wake up and be losing it all...never happened ...
Good vibes to all those using and just done ....I know for me I'm so thrilled with the results and getting to like my hair again. The Penguin Cold Caps worked great for me....as we all know, not perfect, but agree a bad hair day is better than a no hair day!0 -
Hi All: Just a quick note--I used thru Radiation (30 treatments) and am still using,"Aquafore". It can be purchased over the counter at CVS, etc. Works well, not greasy but a good moisturizer. No blistering, but I did peel a little, under armpit and on bottom of breast. But now after almost 4 weeks, starting to look much better. The "burn" is getting lighter and so is the breast. All that is left for me now is Herceptin, every 3 weeks until end of DEC. THIS TOO SHALL PASS!
Keep Posiive!! Laugh every day! Smile alot!!
Nancy
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Hi all
Long day in the chair today as nurse had problems accessing my deeply embedded port. Anyhow made it and today they used Paxman on me. The cap is lighter and the fit is much better than Dignicap. It was very cold too and I was shivering throughout, oerhaps it's also that I am bald at the top so the contact is much better. When nurse took cap off, my sides actually iced up! Very low grade headache when it was on too but this went away as soon as it is off. Let's see if my sides can be saved and my bald top will see growth.0 -
Good to hear from you ArleneA - I was wondering about you! Good to know youa re doing well. It sounds as if we are about the same as far as hair loss- I say that I still have one third of my hair with spots of total loss around my hairline, above ears, at top of forehead, and at temples, mostly. I may have one small bald spot on my crown too (isn't that the back of the head at top?). I am six weeks past last chemo and I am shedding at various rates still- last week hardly any with each day's combing but now, today, it suddenly started again and I got a handfull of loose hair with my combing. Shampooing is not as bad as combing for some reason- that shed is getting less but maybe with this week's shampoo, it will be bad too. Just gotta hang int here and hope the hair does too. I still get nervous about it but not as bad. I am very grateful to have done this. Everyone is amazed and they think I am healthy!
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Good to hear the fit is better FRANCES. I'll hope that you sides stay. So you feel that the shedding slowed down between treatment #2 and #3?
off to shampoo wish me luck
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All the Best Dexxy:-) I have noticed that my shedding has decreased and the little hair i have is still hanging. My back hair is very short but still hanging, middle part is thinned abit and the top part which is long has massive growth (that i have to be very very gentle when combing). The bald spot i have is on the upper side of my right ear, very annoying:-( but aaahhh i try and cover it with head bands on weekends and when i come to work i have this head band that i put with a piece of short hair (bob type) at the back that i put on, very cool noone has noticed that is not really my hair (my hair is kinda underneath) LOL..... I am glad and Thankful that i still have a head full of hair, however thin and unproprtional it is. I am feeling more like myself today, looks like this is going to be a good week and next week thurs back to the cahir uuurrgghhh.... anyway, this too shall pass:-)
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Dexxy just had no 3 yesterday, will monitor and report. At least this morning I woke up to see less hair on my pillow.
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To FrancesC: Glad to hear Paxman has a better fit and is colder--use an electric blanket, it helps--wrap yourself up in it.
I seem to have missed something--What is Paxman??? I've heard of Digna Cap, but not Paxman. Please tell us all about it or where to look it up.
Keep Positive!!
Nancy
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Paxman cold cap is from Uk. You can checkout it's website: http://www.paxman-coolers.co.uk/
Dignacap is from Sweden. I find Paxman cap lighter and the contact with my head tighter because it's outer cap comes with straps which can tighten all round my head. Will share the electric blanket tip with my onco so that they can provide.0 -
OK, I have a question for those of you that lost a lot of hair and/or have bald spots.
I have had 3 DD AC treatments so far and have a growing bald spot that now covers the whole top of my head and some thinning on the sides and back at the top. I now need a wig bc I am returning to work soon and can pass better with that. The caps have allowed me to get to week 6 of treatment without a wig with hair framing my face, so no regrets about using them. I have only a rim of hair about one inch from my forehead going back now, so I may loose all the hair in front during my next treatment.
The question is... what to do now. If I wear a wig, I need to cut my hair short or else it won't fit and will be too hot.
Why keep using the caps if I am going to wear a wig?
What do you guys do with 20, 30 or 40% hair left?
Do you notice growth at the bald areas while using the caps?
Also if you keep using the caps on a bald head, do you protect your scalp with something?
thanks!
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