Cold Caps Users Past and Present, to Save Hair
Comments
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Susan, great post. Wow, page 16- you were one of the cold cap originals! I agree with you completely on physicians who won't allow cold caps or say they don't work. If they can't bother to get current information on cold cap safety and effectiveness, what else aren't they up to date on?
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BlueFlowers- Your Oncologist may be great "medically", but refusing to let you use cold caps is awful!!! One of my doctors told me that he may feel strongly about something, but he has to keep in mind that he is not only treating the disease, he is also treating the patient as a human. We are not just walking cancer carriers, we are human beings and that needs to be taken into consideration as well.
As far as my cold capping, I finished chemotherapy 7 weeks ago and I am still shedding a lot. I'm ready for it to quit anytime now!
On a MUCH BETTER NOTE, I had a double mastectomy with lymph node dissection on 10/21. My pathology report came back last week and I was not expecting this news. THERE WAS ABSOLUTELY NO CANCER LEFT!!! I had a complete, 100% pathological response. Chemo killed everything. I am cancer free. It may have been the best day of my life.
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CONGRATS FL sunshine! What fantastic news! Sending you good wishes for a speedy recovery and reconstruction!!!
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Hi Susan - great to hear from you again! You were one of the ones who helped me so much as I started the CC process in 2012. Congrats on your 5 year mark - wahoo!!
And congrats to fl-sunshine on the complete response - wahoo again!!
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congrats FL sunshine. I totally got tears in my eyes reading this! Hair and no cancer! Fantastic.
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Great news, FL Sunshine!
I've heard onanother forum that Johns Hopkins doesn't allow cold capping. That's pretty scary, considering they're one of the top cancer centers. These caps have been around for years now, I'm not sure why they aren't getting the publicity they deserve.
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yay fl sunshine!! Awesome news!!
(I am also 7wks out and still shedding...pretty upsetting, but I figure it's got to stop soon, right?)
Thanks Susan for wonderful 5yrs out inspiration
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The shedding WILL stop ladies! I shed for 4 months post - that's 16 weeks - hang in there and your hair will, too! I know it is hard, but you have to have faith that if myself and others who shed a long time PFC kept their hair, that you will, too.
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Has anyone used Root Touch Up from Madison Reed? It says it's free of sulfates
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Thanks dance trance :-)
You keep saying so...and I believe you!
Just wish it would hurry up and finish. It's depressing, and I am trying VERY HARD not to be depressed in general right now.
I have had a great result with PCC so far btw, I have a lot of hair and it has (surprisingly) grown in length a fair bit during chemo. I am itching to cut it but don't date till the shedding stops...
But I am a huge fan, and excited to see both old and new cappers here sharing stories!
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I'm another who shed for 4 months PFC. It will stop- promise! Consider the alternative. You would be posting on the hair, hair , hair thread asking when you can expect your newly grown peach fuzz to resemble anything approaching your normal hair.
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Daniella - sì, stavo usando le mie mani troppo!
Makingway - there is nothing brave....when you are pushed back up against a wall you do what you have to do. When I was going through all this BC stuff I wanted to write a book about the horrible unsympathetic health care workers I encountered along the way.....I could tell a few more stories. I do have a cold cap story....I went to get genetic counseling by a MO at a NCI in Michigan. I was there about a month or so after chemo. She argued with me that cold caps don't work even though I had all my own hair....REALLY???? She kept saying "they don't work....then you must be the ONLY person they worked for". She kept asking if it was REALLY my hair. WTF???? Like I have a reason to come in there and make this up just for fun in my spare time. I wanted to smack her! Needless to say, I never went back to that oncology department again for anything!
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Hi All!
Love reading all the stories....some make me cry yet others make me laugh! Today is day 15 after my first chemo and I've had virtually NO shedding. Afraid to say that PCCs actually worked, afraid to jinx myself even though my doc said I would start to lose my hair on day 12. Anyone experience their hair falling out (major, not just shedding) after this time period? I've noticed that my eyebrows and lashes have thinned and the hair on my legs have not grown back since the last time I shaved but I still have a whole head of hair!
Semb9-I'm also from the Bay Area(San Ramon) and would love to pick your brain!!
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Hi all,
I have #5 of 6 treatments on Monday. My hair is thinner, but here, and no one knows I am undergoing cancer treatment unless I tell them. I am a "sort of" pioneer at my treatment center in Berkeley, CA. My MO had three patients use the caps in the past with success, so she supported my choice. My BS did not. He said it would work, but he is concerned about the chance of scalp metastasis. I have had to be a bit assertive before each treatment in order to have a chair in my center that has room for my husband to do his thing. Other than that, there has been interest and questions and general support from nurses. My MO is now communicating with PCC in order to publicize this as an option. She also said that she thought that our center could easily find space for a medical freezer to make the process easier for future Cappers. I am thankful that I have been able to keep my hair so far, and glad that I have not encountered objections and difficulties that others have experienced. Thanks for sharing your story, sebm9! Someday our choice will be an AFFORDABLE option for all.
Jeni
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Thanks everyone for your advice! I spoke to the director of my hospital's cancer center earlier today. They said if they can get the freezer from the Rapunzel Project they may let me do it. But it may take some time, so I told them I would put off starting chemo until then. That seemed to get their attention but I really meant it. I've been through this once, and that was more than enough!
DaniellaD- I may actually need a lawyer. I had BC back in 2006. At my yearly visit with him this June I told him I was having burning in that same breast. He dismissed it because I had radiation back then. I came back in Sept. because the burning got worse. That day I had an ultrasound and the next day my surgeon was telling me I had Trip-Neg BC. I freakin' laid him out!! All he kept saying was "Lets just move forward from here". Needless to say I am now seeing another dr in the group.
And now I have to deal with this nonsense about some damn dry ice! Apparently, I'm the talk of the center and everyone is talking about me and my one woman crusade. That just makes me more determined than ever!!
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JeniferE-The incidence of scalp mets is extremely low 1.1% in scalp cooling patients(n=553), 1.2% in non-scalp cooling patients(n=87) http://www.ncbi.nlm.nih.gov/pubmed/19241158.
From another study: "The six studies, involving 1593 patients, who evaluated the incidence risk of scalp metastases, showed that 10 patients (0.6%) developed scalp metastases. None, however, was found to be an isolated site of first metastasis." http://ecancer.org/news/1632.php
I believe the possible permanent side effects(late effects) from chemo are higher than that yet, you don't find them suggesting you decline chemo.
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First, CONGRATS to flsunshine!!!
Great to see you mdj, makingway, and dancetrance!
JeniferE, Are you at Herrick? I was the first user there back in 2010. My amazing MO moved to Kaiser and I adore my current MO but she didn't witness my success first-hand. I know I was an ongoing topic at tumor board :-). I'd love to help get a freezer donated. A good friend is at their foundation, let's connect to see how we can make it happen.
jc254 - send me a message with your contact info, I'm happy to support you. It's been five pretty wonderful years but I will *never* forget what it felt like to learn I had cancer and, then, would need to go through chemo.
Shedding....oh, I shed from June 21 (first day of summer) until mid-November. Didn't have the courage to warm-wash my hair until a couple weeks after that. I was not prepared for that, but in retrospect it makes sense: the body takes a long time to heal in some ways. Even though some hair was shedding, other hair was wildly, and I mean *wildly* growing in. It would stick straight out of my head sideways. It was my Pippi Longstocking phase.
A year after the shedding stopped, amazingly enough I got to attend the grandest event in the world, the Nobel Prizes. I felt like it was my prize: getting to wear my hair in an up-do. Thanks to Frank Fronda and PCCs. I am forever grateful.
If there are any new users, I am happy to send my writeup of my experience. Just message me with your email and I'll send it (it's too long for a private message).
Susan0 -
I love getting an update in my email from you all...it makes my head spin all the nasty attitudes of some of the medical professionals out there. Good to hear from you Susan! Had my chemo in 2009 and I am so thankful for Frank and the Cold Caps. At this point I am trying to find natural ingredients for my hair products. Did not really like Henna as it was too dark for me. Not quite ready to be all gray yet...
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I'm on day 14 and experienced some shedding today after washing (very gently!) my hair .... no major amounts, but definitely more than any time since treatment. I've become more concerned about what happens between cold cap treatments .... how to wash, temperature, conditioner (?) ..... it all seems to make a big difference to PCC users over the course of treatment.
I went on the hair, hair, hair thread and got very depressed reading it .... very glad to be using/trying the PCCs!
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Hi, I don't come around here as much now that I finished my chemo about 5 months ago, but after reading posts by Daniella, Pinkflipflops, Blueflowers, and Mdg I just wanted to add one more voice of support to each of you. I think you're fantastic. You don't need the kind of stress you're getting right now but you're dealing with it with strength and persistence, so kudos. I wish you all the best in getting through these bits.
Susan, FL_Sunshine, and Makingway all have such wise words, and Barremom, your thoughtful report on PAXMAN will really help others. Blueflowers, I'd say try to get the caps if you can, even if it means checking out a different MO for a second opinion.
I can say even 5 months later I'm still so so so glad I did the caps. They really work, in spite of what the shedding might seem to suggest. I got to keep not only my hair, but also privacy regarding my health. And now in the recovery phase I won't have to wait eons to get my shoulder-length hairstyle back.
Best to all-
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I'm about to wash my hair for the first time since chemo. It's been since Friday, my hair is so nasty!!! How do you all go about washing your hair? Do you shower at the same time or wash your hair in the sink/bath? I have a squirt bottle, was planning on putting soap and cold water in there and spraying my head with it. Would really like to do it all at once in the shower if possible....,but showering in cold water??? Please give me your tips!
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I couldn't handle a cold shower - definitely a baby about getting cold! So I put my hair in a shower cap for that. I washed my hair in the kitchen sink using the sprayer. Mixed shampoo with water in a cup. Good luck!!!!
It was heaven the first time I was able to wash my hair with warm water in the shower!!!
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Jennjdance - I took warm showers, but didn't put my head under the shower. I took two squirt bottles in with me - one with shampoo/tepid water, and the other with just water for rinsing. If you have longer hair (mine is pretty short), you might want a pitcher or something for rinsing instead. But you can have a warm shower and still wash/rinse your hair with cool water!
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Ang, I know we go to the same oncologist, but I seem to be the only chemo patient dragging in two coolers of dry ice and using the cold caps. I'm surprised more women aren't aware of cold capping. I had to mention it to Dr. W.--no one there suggested it to me, but she and the nurse remembered that you had done it.
Leslie
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I have a hand held shower head in the shower, so turn the temperature and flow down to very low and use that for my hair after I've showered. Do you all use conditioner? I'm using the DermOrganics brand recommended by Trish of PCC, but the conditioner left my hair in greasy strings (a good look after all that psychological trauma of washing hair!) ... so I've just used the shampoo since then. Do you all use conditioner? Any recommendations? I'm assuming Nioxin is for after treatment is over?
Also weird questions come to mind .... does anyone do anything special to protect hair when sleeping? I noticed someone write about wearing a cap to bed? And what about hats, with loose brims? I'm dealing with the sun and don't know which to worry about more when I'm walking.
Good luck everyone .... hope asking for these mini details aren't a drag! Chemo #2 coming up a week from today. Best!
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I'm using the DermOrganics, too, followed by a little of the conditioner on my ends. I rinse that out and spray on some Kenra Daily Provision leave in conditioner to help with the tangles. My hair is pretty long so I'm worried that these tangles are going to cause problems because they're hard to remove
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Leslie~
It makes me sad that Dr. W.'s practice did not embrace the idea of the Cold Caps. 5 years ago she had a conversation with Frank Fronda before I used them. After I was successful with them I was sure they would mention them to patients. Very disheartening...during my chemo there were many ladies asking me what I was doing. Some were angry that they were not told about them as a choice.
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I take a very hot bath and my husband uses a pitcher filled with lukewarm water to rinse my hair after shampooing and conditioning. I've been using a sulfate free loreal shampoo and conditioner that smells nice., diluted in a dispenser bottle. So far I have had four AC tx over three months with no shedding at all. I am also pregnant, so that may have something to do with it. I start weekly taxol tomorrow, and will continue to cap. I leave the caps on for 4.5 hrs after chemo. My brows and lashes are thinning, so I'll start using Latisse again religiously, I stopped for a while since I didn't think i was losing much, but my eyelashes are more sparse and what's left is shorter. I stopped using mascara, for even when I used an eye make-up remover, I lost a few lashes each time.
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FL_sunshine@ I am doing a happy dance for you! Great news!!!
DaniellaD@ holy crap. How dare they treat a patient this way?? Bless you for sticking to your guns in the face of intimidation.
Leslienva I think it's on a Penguin list somewhere but the 'Wet Brush' works wonders for getting tangles/knots out of my used-to-be very thick curly hair.
Susan I am so thankful to you and the other experienced coldcappers that help us all, and for myself, keep me a little saner during my freakouts. I think you all rock!
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Leslie - should you get knots, use plain old corn starch from the supermarket baking aisle on them when your hair is completely dry. Sprinkle or pat it liberally onto the knots or mats, then gently rub them to be sure to get it in-between all the hair strands. Corn starch is super silky and slippery and makes it easy to detangle hair, especially using a wet hair brush's wide set bristles.
Always start from the bottom of a tangle while trying to hold the top of it with your other hand to prevent pulling on your hair roots, and work your way upwards until the mat or tangle is gone. Cornstarch works miracles, and it brushes out afterwards.
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