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Cold Caps Users Past and Present, to Save Hair

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Comments

  • mtri111
    mtri111 Member Posts: 67
    edited February 2011

    Hi.. well, here you go:

     me on Oprah, Feb 2008:

    http://www.youtube.com/watch?v=lb9qPdm1_Y8

  • keeppositive
    keeppositive Member Posts: 181
    edited February 2011

    To mtri111: Tried the link, couldn't get it.

    To all:

    Thanks everyone for your responses. I think if we all write to Oprah, it will make an impact. let's bombard her with letters about cold cap treatments to save your hair. We don't need FDA approval to alert people to the choice, and we are all the proof anyone needs--all of us and our hair!!!!

    Keep Positive!

    Nancy

    Diagnosis: 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2+

  • mtri111
    mtri111 Member Posts: 67
    edited February 2011

    Hi Nancy



    Link works for me.. copy and paste into browser.



    http://www.youtube.com/watch?v=lb9qPdm1_Y8



    Or Google:

    Youtube,Oprah, Marjorie Thompson

  • keeppositive
    keeppositive Member Posts: 181
    edited February 2011

    Hi all,

    I just sent my e-mail to the Oprah Show via the link provided by Mtri111 on the previous page. Please Everyone do the same! I said there were many of us currently using the process and many who have sucessfully completed the process. I said we want to tell the world they have a choice!

    Nancy

  • Drim
    Drim Member Posts: 134
    edited February 2011

    Nancy - that's fantastic and a great idea. This is Oprah's last season but even if they can't fit this in to the Oprah show maybe she'll find a place for this story on OWN (Oprah Winfrey Network).

    Marjorie - that is so cool being featured on Oprah. I think I sorta remember the story. I watch Oprah every day. Were you in the studio the day your story aired? I've been to a bunch of shows but never Oprah.

  • Sashette
    Sashette Member Posts: 75
    edited February 2011

    mtri111

    Thank you for sharing your utube link.  You look beautiful and I love your music. 

  • Sashette
    Sashette Member Posts: 75
    edited February 2011

    I just emailed the Oprah show too.   btw  I have wavy/curly longish hair (wigmaker said it was 20 ish inches I did not measure it)   I am also a runner.  I (along with my head) sweat during my daily runs.  I used to pour a pitcher of cold water over my hair in the shower after my runs but it would take hours to dry, so now I leave it and it is fine.  I have not experienced the straw hair texture and my scalp is not oily.  So for me working out is a good thing and the temporary body heat does not seem to make my hair fall out.  When I started this process I used to wear my hair in a loose pony tail / bun.  I noticed the thinning on the sides and thought maybe the ponytail was causing too much tension on the sides so I switched to loose pigtails and I am not noticing any more shedding on the sides.  my hair also tends to tangle less in pigtails when I sleep.  I feel a bit silly in pigtails but oh well..... I very much like having hair.  

  • sebm9
    sebm9 Member Posts: 488
    edited February 2011

    I disagree, I think the clinical trials are important because of the reality of our "health care" system in the US. The trials are to quantify what we all here are sharing anecdotally: what works, what doesn't, what protocols we're on, our methods, etc. The trials measure the techniques and results, and unfortunately the quantification of all this is what will matter for the medical community (physicians and nurses), and the allmighty insurances to validate this.

    We are breaking the mold by stepping beyond what doctors will recommend or insurance will cover. We're all paying out of pocket, and many of us are doing this despite doctor's orders (at worst) or with their "whatever it takes" level of acceptance (at best). Few of us have done it upon a physician's recommendation. 

    I say this because I was struck by how almost every step of my treatment -- my surgery technique, the oncotype score, the TC protocol, the type of rads I had, the tamoxifen -- are all relatively new protocols from within the last few years. Brave women who refused to take "NO" for an answer, who always sought YES and who always stayed positive, made these things possible. And that's what we're doing with Penguin Cold Caps (and other cold cap therapies too).

    I'll make a prediction right now: the implementation of Penguin Cold Caps won't hinge on their success -- that already is (worldwide), and will be (US), proven very quickly especially for TC treatments. The implementation will hinge on whether or not cancer centers are patient-oriented enough to keep the centers open for the 2-4 hours post-infusion required for treatment. My protocol was 4 hours of caps post-infusion. I used dry ice and continued the treatment at home. If I'd used caps from the center, they'd have to be open 4 hours post-treatment for it to work. That's a big expense - having at least a receptionist or admin asst. available to keep a center open for 2 or more hours while the caps are swapped.

    I offer this perspective as a hospital employee, I know how the bottom line is watched. 

    And that's why it's such a beautiful thing, to see how patients can change the face of treatment protocols. Viva penguinistas! :-)

    Susan 

  • mtri111
    mtri111 Member Posts: 67
    edited February 2011

    For Drim,

     I was not in the studio.. they filmed the segment in LA where i was touring, and then pieced together the films. A week of interviews and sending them stuff. But they were very attentive.

     The OWN network does not make it as clear where to send ideas, but, sending stuff to the current producers couldn't hurt. They have a HUGE research staff and armies of producers.

     More magazine, also very reachable (I got in that one in Spring 07, full page article.. and that was just by writing in to them!)

     That would be a good one for a story on surviving chemo side effects.. featuring HAIR!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited February 2011

    Marjorie - I just saw the youtube.  You are awesome...inspiring...wow!  That was really great.  Thank you for sharing.  Love that you have seven children, too!  

    Annie 

  • mtri111
    mtri111 Member Posts: 67
    edited February 2011

    Susan speaks wisely about the key technicality..time/space..in getting centers onboard with cold cap use. This is why having the flexibilty of our own coolers/dry ice has merit, despite the inconvenience. It is a true conundrum.

    I am dreaming of a system that uses a portable freezer with generator that could be carried in and out of a facility as easily (more easily) than schlepping coolers.

     There's gotta be an enterprising engineer /HVAC person out there to invent the prototype!

     As for clinical trials, yes they make the world go round but it is just so frustrating to see and know this works yet have to prove the obvious before it is validated.  Hey, I understand.. hence, that Patient Education Survey I launched (hope everyone completed that survey! the numbers are growing, and tell an interesting story).

  • Ang7
    Ang7 Member Posts: 568
    edited February 2011

    Count me in - just sent my comments to Oprah...

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited February 2011

    OK, here is the scoop on the Rapunzel Project, who has been a primary driver of the freezer installations across the US.  They have a nice website, if you simply google the name. They were also featured on the Good Morning America piece.  I have talked to the contact before and just got an email tonight.  According to Nancy (Shirley's partner) they have sought out local coverage as well as national coverage.  She shared that they and many, many others have contacted Oprah, Dr. Oz and the Doctors regarding doing a segment.  No luck so far.  They are looking for any connections to make this happen.  

    Based on their experience they believe that both the oncologist and support staff are obstacles, despite the freezers. They are trying to reach out to hair care manufacturers as well as to wig providers (which seems a little too late to me).  

    I work with physicians at my job involving medical device implants for cardiovascular.  Anything that will possible/remotely affect clinical outcomes HAS to have data supporting the efficacy of the product.  Even though cold caps is not perceived by the patients to affect the clinical outcome, I think the jury is "still out" for physicians.  As I had written earlier, I will ask my oncologist at my appt tomorrow what he thinks. 

    Night everyone!

  • howard
    howard Member Posts: 102
    edited February 2011

    I am so thankful for this site. Had first of four TC treatments last Friday so tonight is day 5. No shedding yet, and feel ok, just kind of bloted. Eating ok so far, too. Really appreciate the advice on cutting fingers and toes from gloves/socks. My hands were really cold with the frozen pea bags laid over them. Good tip. Thanks! How long should we have fingers and toes in frozen peas? And only thru Taxatere? Not Cytoxin? Should they be cooled before and after the infusion or just during?



    Took Claritan to diminish effect of Neulasta shot. How many days do you keep taking Claritan? No one shared that tip at this big Medical facility. Again, thankful for you my new friends who know how to prevent side effects, not just take more meds when SE occur.

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

     Re: scalp mets issues and cold caps or helmets; toes and peas

    Since I worked in research and Emory U School of Med, I automatically research everything. still obsessive in retirement. The scalp mets issue- different types of caner, breast and prostate being two, rarely met to scalp. Some research journal abstracts say 0.02%, some say 0.08% BUT - these were not people using cold caps. Those cases where the patient used caps and got scalp mets are no higher than those not using them. So the results suggest that using or not using cold caps does not allow or prevent scalp mets.Yes, some few  users get scalp mets, but so do some few non users.

    Lugging the coolers back and forth is a hassle, but if you keep them closed and fill the empty spaces with towels, the ice will last 2-3 days and you can continue at home.

    The great thing about the elsato v the Penguin (we used each  - PCC 1st chemo, Elasto 2nd one) is that helmets take only one 48qt cooler supplied by Advance Cold Caps (1 800 322.1547, ex 12) that has special pockets to hold the ice and the helmets don't need boxes so take up less space. For a quick freeze you can set a zip lock bag of dry ice pellets right into the helmet. Helmets were just as cold the second day as the first.

    Another advantage we found was that it was very easy for a person in the back seat to reach over and change the helmet on the person in the front seat. I have a Matrix and there isn't a lot of room to move around. We didn't want to stop on the expressway in Atlanta traffic, nor did we have to stay at the center until 7:30 to get the last cap on before leaving as we did with the Penguins.

    I am not knocking Frank, but someone always invents a better mouse trap and there is room in the market for both. Now let's get the cost down so everyone can benefit.

    Fingers and toes - my understanding is during taxo only. Get the HotHands hand warmers (sporting godd or Walmart) to slip inside socks and gloves - toes and finger tips cut of of these so nails hit the ice directly, but the warmers in teh socks and palms of gloveshelp with the freeze.

  • mdg
    mdg Member Posts: 1,468
    edited February 2011

    I also emailed Oprah.  I hope soon enough someone will take notice of our efforts and have a show.  It can't hurt for all of us to try to contact them. 

  • keeppositive
    keeppositive Member Posts: 181
    edited February 2011

    Hi Everyone:

    Thank you all for your responses and for writing to Oprah show--please everyone do it, because the more letters she gets, the more viability the story has.

    We will not affect the clinical trials by doing this, they will have merit on their own. We just want to get the word out that this process exists and it works! Most people, including doctors and nurses, have never even heard of the concept of saving your hair by freezing. We are just giving information to the public at large. Knowledge is power. The more people who know about this, the more pressure will be put on the medical community to acknowledge the process and it's viability. I am a former research analyst, so I know the power of numbers!

    Keep Positive.

    Nancy

  • keeppositive
    keeppositive Member Posts: 181
    edited February 2011

    Hello again,

    I just submitted an e-mail to the DR. Oz show. I googled Dr. Oz and found the link to :What you want to see on the Dr. Oz Show. I clicked on it and told our story. Hope I hear from them.

    Nancy

  • mtri111
    mtri111 Member Posts: 67
    edited February 2011

    Another idea that I believe has legs, is contacting writers for the New York TImes Science TImes:

    eg,

    Natalie Angier, Jane Brody, Cornelia Dean,  others who write  about health and wellness issues.

     Betcha that would yield success faster than the Oprah machine...

     -- and then there's our  Physician commentator Sanjay Gupta, too..

  • cmksocal
    cmksocal Member Posts: 163
    edited February 2011

    Hi All,

    A strategy for insurance coverage, especially if you are with an organization that is "self-insured."  I am a faculty member at U of So. Cal. and have the USC Network as my health insurance.  The policy seems to be "administered" through Delta Health Systems with Anthem Blue Cross as "provider."

    Last summer I did 4 TC@3 weeks.  I contacted Delta Health Systems to discuss coverage of the caps.  I purposely contacted them on two separate occasions to ask about coverage.  Both times I was told the caps would fall into the 50% rate because they came from a Non-network provider. When I applied for reimbursement I needed a prescription for a cranial prothesis and the receipt from PCC. 

    Short version of the story is I submitted all the materials in early Oct and got the denial letter on 12/23. Two of my faculty colleagues both said "USC is self-insured, email Administration."  So  I contacted the Health Insurance Benefit department and got IMMEDIATE assistance.  She had access to the Delta Health System computer and could see the denial claim.  She said she would take care of this and that I didn't need to submit a formal appeal letter.  This was a Friday; the next Friday I had the check!  

    Not only did my claim get reimbursed, she wanted to know more about the caps. I sent her the links to the NeonTommy article about me, the Good Morning America segment and the Wall Street Journal story.  

    I know I am extremely lucky to have this type of assistance.  But this experience reminds us that we need to educate our internal health insurance people as well as the general public.

    Colleen

  • Sashette
    Sashette Member Posts: 75
    edited February 2011

    Hi

    Just got back from Dr appointment. My Dr was surprised and I would say definitely pleased that I have all my hair. She said she had read about cold caps but never knew anyone that used them. My freshly washed hair did cold caps proud. I answered all her questions about the cold caps and showed her the pictures of me using them. At the end she said she was impressed that I was doing chemo on my terms. I have one more chemo next Friday. Thank you to all the women who post here. You all have given me comfort and courage. I am so grateful for all of you.

  • mdg
    mdg Member Posts: 1,468
    edited February 2011

    So how are you all styling your long hair.  My hair is normally kind of frizzy and has a slight wave to it but I always blow it out and style it so it is straight.  I rarely ever try to let it go natural as it just looks kind of icky. My hair is long...down to my bra in the middle of my back.  If we have to air dry, it would take hours and look bad.....just trying to practice styling my hair now before chemo so I have a plan.  Suggestions?  I tried drying part of it on the cool setting on my hair dryer, but it just never seemed to really dry....that would take forever given my hair is long.  Just curious how you long haired gals are styling.  I did buy some soft fabric curlers - I may be better curling it and letting it air dry that way but that would take all day or night for sure and I can't imagine sleeping in the curlers would be good for it.....just thinking through this.  Open to suggestions.  Also, if you have long hair, did you sleep with it loose at night or with a hat or something????

  • sebm9
    sebm9 Member Posts: 488
    edited February 2011

    Sashette: Congratulations! Doesn't it feel great to watch your physician learn new things about treatment from YOU!?! Your cancer battle takes on a greater significance; you are not only helping yourself by going through chemo, you are going to help other women (and men) by being the first at your center to demonstrate that the caps work. By the time the scientific research catches up with us (grin), our physicians will be in the know.

    Congratulations again!

    Susan 

  • Sashette
    Sashette Member Posts: 75
    edited February 2011

    Thanks Susan

    When I started I honestly did not know how I was going to get through this. So yes it does feel great.

     MDG

     I have hair maybe as long as yours. Wavy / curly.  Takes hours to dry. I got into the rhythm of weekly shampoos and not manipulating my hair except for the wide tooth comb out... I let it air dry. I gave up touching my hair during the day.  I do not want to be pushing the bangs behind my ears all the time, I wear the front top section back in a clippy.  I sleep in pigtails. Sleeping in a ponytail/bun seemed to pull at the sides too much.  a lot of days I wear loose pigtails. sometimes loose ponytail  People tell me my hair looks great when I go out which surprises me.  I know it sounds primitive but it works. 

  • torigirl
    torigirl Member Posts: 748
    edited February 2011

    mdg--

    I used "no pull/no tug" headbands and then used "no pull/no tug" ponytail holders ( you can get these at Target, Walmart, etc) and did pig tails a lot.  When it took the ponytail holders out,  I just made sure to hold on to my hair above the holder so I wouldn't pull anything out while taking the holder off. I have layers in my hair so I would let the shorter layers air dry and they looked tousled about...it really didn't look bad at all...

    Because yours is longer, you may be able to do some "loose" braids...those you can do while it is still damp.

    I did sleep with a satin bonnet at night, just so I didn't pull on my hair...

    Good luck!

    Tori 

  • mtri111
    mtri111 Member Posts: 67
    edited February 2011

    So, pursuant to Sashette's post this evening... Many have mentioned how their physicians reacted to the reality that the caps were working, and the words "surprised" and "pleased" are used.  I experienced this too.. with indirect comments like "you look great".. but still, not the reactions of absolutely  stunned enthusiasm and "HOLY COW!!! "  that  seem to me to be warranted. Perhaps these are saved for the elusive Cure.. but c'mon.

      I guess my point is,  they are politely pleased, but it doesn't  seem to translate much into spreading the word to  other patients,  adding this to the "Patient education" packets, and so forth. No doubt they observe people melting down daily upon receiving a diagnosis and treatment plan, but how great to be able to say, but, ya know what?.. "you can do this thing and keep your hair".. instead of "you will lose it in 2 weeks".

     And then the nurse educators and chemo nurses.. they SEE it in action, see it working.. yet have some kind of gag order as far as letting others know. The nurse  educator "Ms, You'll lose it in 10 days".. would  see me, and seem to look right through me and my hair; my chemo nurse was very supportive but admitted she was not at liberty to speak up.

     There is a such a  long way to go.   Maybe it IS all about the clinical trials but the latter are SO faulty in so many ways that it is frustrating they  are the gospel. Here we have incontrovertible evidence that this is  working, and nary a speck that it causes harm ( we know the scalp mets myth is just a scare tactic).. yet we await "proof."   I told the Medical Director to grab my  bangs and pull; there's the proof, sir.

    And the clock just keeps ticking.

  • Ang7
    Ang7 Member Posts: 568
    edited February 2011

    Colleen~

    I have BCBS and I just got a letter that said they need more information on the Penguin Cold Cap statement before it could be considered for reimbursement.  The only thing that I think Frank could add on would be the exact dates that I had the chemo? 

    I have emailed Frank and am waiting a reply...

    Yes, in my chemo office they were "happy for me" but did not seem happy when I was speaking with other women in the office that were wearing headscarves etc...

  • motherofpatient
    motherofpatient Member Posts: 124
    edited February 2011

    During my daughter's last chemo, a nurse came in the separate room where we were to see what all the talking and laughter was about saying we were having "way too much fun." Her reasons for not promoting cold cpas -elasto or PCC- was that not everyone can use them. Daaahhh - not every cancer patient is the same and we all know it from the outset, so does that mean that, say, we should hide the use of Herceptin because it doesn't help everyone? What logic from trained person trained using the scientic method of reasoning!

    Ang7, I think BCBS is lookin g for a way to deny payment, but their offices are full of women and some of them have had BC, so the curious will investigate and get on the bandwagon for saving the hairs.

  • mdg
    mdg Member Posts: 1,468
    edited February 2011

    I have not tried to get approval for my cold caps with AETNA as they are listed on their website as "not covered" already.  I guess it may be a lost cause...I will have to see though. 

    I completely understand what you mean about the cold caps being pushed to the back burner.  My hospital has a freezer and has the caps there right on site for you to rent from them and they still don't really even talk about it.  Right now they have ONLY 1 patient using them!  Sounds like a crime!  I told them that I wanted to be their poster child after I complete treatment with my hair.  I said it to the head nurse who told me "well, you know this doesn't really work for everyone" and "many patients just give up because their hair falls out anyway and it's just to hard to do"...blah, blah, blah!  I plan on doing something to get the word out.  I know I will feel bad going for chemo if I have hair and other ladies were not so lucky.  I hope they have me in a separate room so I don't have to face those other bald gals....

    Where can I get a satin cap to sleep in?  Anyone know?

  • Lmflynn
    Lmflynn Member Posts: 273
    edited February 2011

    Re: satin caps...you can find them at Sally's if there is one close.



    Wanted everyone to know...tonight I have been asked to be part of a focus group outpatient services for oncology at my hospital. I was lucky enough to be scheduled for chemo in their brand new outpatient services building...and have to say felt spoiled for the private room, two seat area for visitors (for my Helpers!)only, TV with DVD....so I think that is why they are doing a focus group...but I have put together a 6 page PowerPoint on the PCCs to bring with me..mostly pictures of my progress...but hoping to catch some attention.



    Going to write Oprah today.....



    Day 98 for me....can hardly believe it now that I'm 5 weeks PFC...there were times I never thought it would end or wanted to quit..but now amazed and proud I managed it relatively well. I'm feeling so much better each day. Saying this really for those of you still in it....there is an end and you can do it!

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