Cold Caps Users Past and Present, to Save Hair
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Hi Current and former San Francisco Bay area cold cap users ,
I have been talking with a couple former cold cap users and we think it would be fun to have us all get together for coffee or lunch for sharing of cold cap experiences, etc Please send me a PM if you are interested in doing that. We are thinking of somewhere hopefully easy access to freeways and somewhat centrally located to Bay area, like for example San Mateo/Foster City near bridge. Connie
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I am also wondering about a pH balanced shampoo. I am still shedding a ton at 17 weeks PFC and they don't know why. PCC folks said it should have stopped by now. I have lost more hair post chemo than during chemo which is disappointing. They told me to start washing every 3 days with a pH balanced shampoo....have no idea what shampoo that would be. Everytime I wash, more hair comes out so I am not comfortable starting to wash twice a week instead of once a week. I am just sick of shedding at this point. I just want to move on with my life and this is a constant reminder....ugh
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To those who are experiencing heavy PFC shed and flakes/crusts/scales and itchiness etc:
I contacted a trichologist's office, who just so happens to work with Frank. I inquired about heavy PFC hair loss, build up and what to do. Here is an excerpt from the response:
"The best thing at this time is for you to clean your scalp and not let toxins build up because the crustation will block the pores up causing more hair loss, so whatever you do don't let the scalp stay dirty,hopes this helps you."
I hindsight, I wish I had known this at the first sign of the problem, shortly after tx#3. I may have been able to save more hair.
At this point, I plan on washing more frequently and suffering short term pain of more hair loss, but long term gain of helping new hair grow. My advice to everyone is make sure your scalp is clean and able to breathe during chemo and after treatments! If this means agitating the scalp a little to remove debris, then do so, in the long run the buildup is detrimental to your hair.
New and current users, please learn from this, it may save you a lot of grief and HAIR!
Wishing everyone success!!!
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Thank you Debby! I also called them and they are sending me some products to clean my scalp. I am having my 4th and last AC infusion next Tuesday follow by 12 weekly Taxol. I"ll keep you post it with the results. Thank you again.
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DebRox- thank you so much. I will try to shampoo twice a week, but I' m a little bit scare since I am shedding a lot when I shampoo my hair.
Ralston- please let me know about those products and if it works for you.
Tiki0 -
Tiki: I lose a lot when I wash as well. But it is better not to have an itchy/crusty scalp and lose more hair in the long run. If you would like the full text of the message I sent to the Trichologist and their response let me know. PM me.
Ralston: Please let us know what products they send you. It would have been nice to have received an endorsed or suggested product list before starting cold caps, including what to do if cradle cap or flakes develop. I merely followed the washing protocol, and did not realize my scalp was unhealthy and the build up should be removed as it is toxic. I believe I could have saved a lot more hair had I known this beforehand. It is discouraging to work so hard, only to lose so much hair at the end.
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DebRox: Thanks for that information. I bought a PH balanced shampoo today and will begin using it right away. Really need to get this cr*p off our scalps.
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Hi All:
So glad you all liked my party idea. Unfortunately it was cancelled because of threats from Hurricane Irene here in New York. I live on Long Island in the Zone"A" area. We are 3 miles from the Ocean, but less than 1/2 mile from the Bay. Have to re-scedule.
Getting back to cold caps/chemo and ensuing problems. I have to say "serenitywisdom" described my neuropothy to a tee. Pins and needles/numbness, etc. It stinks!!! I haven't gotten the powdered form of L-glutamine yet and capsules are just not strong enough and are not doing anything.
I will try to get the powder tomorrow or next week after the storm clears away.
I would love to know the names of the products suggested or used for the flaky,crusty, crudy scalp. I've used Pure Shampoo, but I have found two scabs and even though last 2 shampoos I gently massaged the scalp, they haven't gone away. It seems like a piece of skin is hanging loose, but doesn't shake off. Need name of shampoo and any thing else to use.
Is there any kind of organic hairspray that we can use. My hair just goes nuts in the breezes or for that matter at the slightest humidity, etc.
Best to everyone. Keep your attitudes up!
By the way, what does everyone think of my penquin charm(or maybe pin) idea? I thought I could have one made and everyone who has completed Penquin Cold Caps would buy one, and maybe one for their helper(s). I would get them wholesale and just tack on a little extra and put the extra into a fund to be used for those who want to do the caps, but can't afford them. I would be in touch with Frank and he could let me know when a person is interested, but can't afford to do it themselves. Let me know what you think.
Keep Positive!
Nancy
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Hi Keep positive/Nancy
I like the idea of a special gift for our helpers. I had about 12 different women helping me put on the caps over the 6 infusions I had. Pin should hopefully not be too costly. I actually have penguin earrings I bought from a Marine Mammal center cause I liked them ( pre cancer) . Penguin has taken on a new but positive meaning. Not sure people would wear penguin pins. Is there anything like penguin hair clips. I have seen little dog hair pins, why not penguin? What do people think? I think it would be a great idea to have a fund set up for those who can't afford it.
By the way has anyone tried to bill their insurance company for the caps.? My insurance does not state caps are excluded (probably they have never been asked) Any ideas on how to write it up appreciated.
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Hey serenitywisdom~
Ang here, who has been submitting her information to BCBS for almost a year.
They keep asking me for different things ie: need to have the exact dates, need exact number of caps used on each date, the amount at the bottom does not correspond with the amount at the top. They wanted to speak to Frank so I gave them his info. Frank is working with me on this but it is making me nuts!
I really would just like to get some money back same as the ladies that wear wigs...
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Penguin Stuff- From time to time people mention wanting penguin items. Look on CafePress.com. They have literally hundreds of penguin items. For example: Penguin power on top on a license plate holder with little penguins marching on the bottom, a little penguin looking at a pink cupcake with a candle magnet- $4, "I believe I can fly- always believe in the impossible", Penguins rock- t-shirt $24 Diamonds (crossed out and the word penguin over the top) are a girls' best friend- magnet- $5, Got penguin? t-shirt- $27, many designs and many products to put them on from t-shirts, undershorts, cards, mugs magnets water bottles....... Have fun checking it out. Julia
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i ordered BEAUTIFUL glass penguins from megaglass.com. They were called penguin paperweights.- the product is actually nicer than appears on the site. They were about $15 each. Since i was the first in my hospital, i ordered for my onc, the hospital president, my key nurses and my two helpers. 10 in total. They arrived quickly and the company was easy to deal with.
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Just got an e-mail from CafePress and some of their t-shirts with Penguins are on sale for $20 instead of $20-$27. J
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I did not read all the posts however I did speak with my onc about these cold caps and he said they saw a disturbing trend in the reoccurrance of cancer in women who used these. He said specifically the recur was always brain cancer, sighting the possiblity that the lack of blood flow from the cold, which prevents the hair loss also may have gave the cancer a place to hide. They chose to stop doing it because the trend, although not scientic was a little too disturbing. I just shave my head and got a wig and a scarf, is it really wrth it?? By the time I finish 8 rounds of chemo, dble mast., & 6 weeks of daily chemo I am thinking there are worse things. Allthough that ruely was a concern for me as well but once ya get over it it's all good!
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@AnnetteHampton-You're oncologist is sorely lacking in information. There is NO evidence of any increase of brain cancer. You need to ask your doctor, Who is 'They', which he/she is referring to? I would especially take note in the comment 'although not scientific'...
Consider this: The Blood Brain Barrier-Therapeutic molecules and genes that might otherwise be effective in diagnosis and therapy do not cross the BBB in adequate amounts. In other words chemotherapy is ineffective for brain cancer. http://en.wikipedia.org/wiki/Blood-brain_barrier
http://www.ncbi.nlm.nih.gov/pubmed/21827403
Although you are comfortable with shaving your head, getting a wig and wearing a scarf, many other women are not. For reasons of privacy, vitality and happiness they choose not to lose their hair. Please share this information with your oncologist. It's up to us to see that this misinformation is quashed once and for ALL!
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Hi everyone:
I'm sitting having Herceptin and catching up. Week 13 PFC. Hair still shedding but definitely slowing down. No regrets having used the caps....no wig, scarf, etc. My hair is coming back so quickly now and filling in the voids which btw I never got any bald spots just thinning. In a few weeks, I plan on a nice short hair cut the trim off all the long scraggley pieces of hair. I went to SunFlower Market here in Vegas and picked up some neutral PH shampoo and it seems to be working as the crusting is going away. Hooray!
My granddaughter was born on Satruday evening and I'm heading to So Cal to see her Thursday!!!! So excited!
Arlene
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Hello ladies and all good wishes with cold cap use.
I finished chemo December 2009. I used cold caps throughout and it worked pretty well for me. I thought you might like to know that over about the last four or five months, my hair has completely returned to how it used to be - glossy, long and thick. When it was still thin and dry, I used to wash it, let it dry and then rub olive oil on it (lightly)) which seemed to help. It feels really wonderful to have great hair again; time seems to do the trick. biggest hugs to you all - I hope yours recovers ASAP .
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AnnetteHampton: Where are you getting treated and what study are you referring to about brain cancer? The women on this site seem are the experts on the CAPS! My oncologist from the Dana Farber in Boston didn't know much about the caps nor did he think they would work. I am more than half way through and have all my hair. What makes this device so wonderful is that I don't look sick and in return, I don't feel sick. I excerise for two hours a day and could not imagine doing that with a WIG on my head. Exercise is a huge variable when it comes to reducing the risk of a reoccurence. If the caps were recognized more and studied, the findings would show that the women using the caps have less side affects from chemo and a greater quality of life.
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Ladies- I saw my dr. Friday and he is amazed on how well I am. I am happy, positive, feeling good, with a lot of energy. My labs were all normal. I am going to the gym 5 days a week. I gain 14 pounds during treatment, and I already lost 9.
I am 9 weeks PFC still shedding but it slow down. I have thin hair but it is better than no hair!!!
I still can have a normal life, no one had to know that I went tru treatment. People can be prejudice sometimes and once you have cancer, think you are going to have that for the rest of your life or think that you are sick all the time.
So I am very happy that I used PCC, and finish treatment with hair and can look like a normal person.
I am very positive today!! Yeah!
Tiki0 -
I am on board with that Soccergirl and Tiki! I too hit the gym and was back to teaching aerobics a few week PFC and my class never knew I had cancer. The caps have kept my cancer private giving me the choice to tell people if I want to or not. We just moved to a new state and no one here knows I had cancer....I feel and look normal. For those of you that have lost hair volume, I am using a clip in hair extension and it looks SO good. It makes me feel so much better about my thin hair. I love them...clip them in and unclip them when I don't want to wear them.
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I am so disappointed. Went to see the specialist and she basically said "we don't use cold caps in CO. They don't work" Talk about taking a 30 year old hopes and flushing them down the toilet. Are there any ladies here in CO that have used them. I don't care if we have to buy them ourselves and carry an ice chest. Winter will be here soon enough.
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It doesn't matter if anyone in Colorado has ever used the cold caps ever- you can be the ground breaker! Most of us have been ground breakers in our particular hospitals. You can do this and don't let anyone talk you out of it. We're here for you! Don't take no for an answer if this is what you want. Contact the Penguin Cold Cap site immediately. You can also check on the Rapunzel Project site for articles and background. All the best.
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I agree with Julia....not only that my helper that came 3 times lives in Colorado Springs....she's a wonderful friend!....and her mom used the old caps 30 years ago with success ( in Colorado!!) so she was my strongest supporter... I know she would help train your helper for you....and if not I'll come visit her and help!....I was the first in my center as many of the ladies on this site were at theirs ...trust yourself and your choices whether it's the caps or not.....
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AnnetteHampton: You need a different doctor. A simple PubMed search (medical literature search) will show many dozens of studies done from 1973-present, and not only is there no increase in scalp/brain metastasis, studies actually show LESS recurrence with cap use.
If your physician can't be quickly informed on something so basic, I'd be afraid as to whether they can reliably be up to speed on any of the other many essentials in keeping you alive and healthy.
A strong statement, I know, and I don't mean to be upsetting, but I am alarmed at how uninformed "physicians" somehow manage to keep practicing. I work at a hospital with some of the best, and they watched me go through my treatment and now recommend the caps to patients and, more importantly, to friends and family.
Thepeddlerswife (and any other new users): Please please PM me your email address and I'll send you my write-up and before/after photos. The Penguin Cold Caps work with many chemo cocktails, and are safe, and can make a ***HUGE*** difference in your chemo experience and post-chemo transition to your normal life. I've no stake in PCCs, I'm just blown away that women in the US have been denied this option for years and years, suffering needlessly. I'm one of the first 100 users in the US -- they've been used around the world for decades -- and they're now in clinical study in the US and are heading towards FDA approval within a couple of years. Here in the Bay Area there have been many, many successful users -- some of whom I've coached -- and physicians recommend them, including all my personal physicians (medonc, radonc, primary care, obgyn, surgeon) and my friends who are physicians, and staff at the hospital where I work. I had my treatment a year ago, btw.
Tiki, your experience sounds a lot like mine (except I lost 20 pounds, due to having so much energy and taking up additional activities while I was on medial leave during chemo). My bloodwork stayed completely normal throughout, too! I'm convinced that cap users remain more active and therefore detox the chemo faster, with fewer side effects. I hope some of the future studies can quantify this observation. Congratulations on completing it so successfully!ArleneA: You look way too young to have grandchildren. Congratulations! There is nothing more life-affirming than a new baby! xo
Best,
Susan
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If there are any PCC users in Knoxville TN or area, please PM me. There is a potential PCC user there who needs a helper or helpers to assist her.
Muchas gracias!
Susan
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Tiki, your experience sounds a lot like mine (except I lost 20 pounds, due to having so much energy and taking up additional activities while I was on medial leave during chemo). My bloodwork stayed completely normal throughout, too! I'm convinced that cap users remain more active and therefore detox the chemo faster, with fewer side effects. I hope some of the future studies can quantify this observation. Congratulations on completing it so successfully!
Susan
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To ArleneA. What is the name of the Ph shampoo. Desperately need to be rid of these scabs/crust/whatever they are!!!
By the way, I am so upset by the post from Annette Hampton. How can a person call himself a doctor and emanate such uninformed wrong information to patients!! It's unbelievable. If you don't know, just say so, but don't give out false info!!!!
Keep Positive!
Nancy
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KeepPositive: It is called Mill Creek Botanicals. Hope it works for you and hope it continues to work for me.
Arlene
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Arlene: thanks
Nancy
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Hi Arlene again:
I went on line to MillCreek Botanicals and they have many shampoos, for instance Jojaba/jojaba treatments/Sleepy Hollow Oil Free/Sleepy Hollow Oil Free Extra Body/Biotin/Keratin/AloeVera/ Henna/ Tea Tree/Amazon Organics Volumizing. Is it any of these? If not, what is name or type?
Sorry to be a pest, but need the shampoo, the spots are hurting if I touch them.
Thanks again.
Nancy
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