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Cold Caps Users Past and Present, to Save Hair

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Comments

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Ladies:  I haven't heard anyone mention using Aveda shampoo - what is everyone's thoughts about it during the cold caps.  It has none of the nasty stuff in it and what I typically use.  Don't want to mess up and use a shampoo that will wreck everything!

    Thanks, Arlene

  • bridetobe
    bridetobe Member Posts: 40
    edited March 2011

    I can't say anything about Aveda shampoo but I did use Aveda's Smooth Infusion as an anti-frizz and detangler (always stayed away from the roots). It worked great and I'm still using it today. Another great line is Morrocanoil, also free of parabens and sulfate. The conditionner really helped moisturize my dry hair.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Hi Arlene - I am using Intelligent Nutrients (from the Aveda inventor). It is a new product.  I suggested in earlier posts trying different products prior to using them. I had tried a highly touted product that left my pre-chemo hair feeling really stringy and yucky. I am glad that I tried it, because I may have blamed it on the cold caps!  

    Good luck...just seven days away, right?  You will do great!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Bridetobe:  Thanks, I've used that oil in the past and totally forgot about it.  I'll definitely try it again.

    Annie:  Will definitely try the Intelligent Nutrients.  Yes, my start time is getting close and getting nervous too!

     Thanks much, Arlene

  • mikeomg
    mikeomg Member Posts: 17
    edited March 2011

    Thanks, mom, maybe people will read all the history and accomplishments of CampCoastal , not just the false ACCUSATIONS made by an employee who was fired for driving a truck through a crowd of volunteers and crashing into the office because he was off his meds and mad at a co worker. Yes we built 150 houses that were given away free, hosted 10,000 volunteers for $15 per day 3 meals room and board and tools and supplies without ever accepting a donation from anyone. We earned the money, that made the camp possible in the most devastated area of hurricane Katrina. We were never a charity mother, it was a private business that donated over $150,000 to the community.Learn the truth before you lash out at people who have only tried to help you. You try to hurt us and everyone we are helping. Just as we experienced doubters when we built the camp out of the rubble of Katrina, we knew we should expect the same building Advance. If anyone wants to know the whole story not just unproven lies private message me. I feel sorry for you Joyce. 

    If anyone would like the full story of our Mississippi lynching please contact me by message.  

  • sebm9
    sebm9 Member Posts: 488
    edited March 2011

    Hi Mikeomg,

    I'm a little confused -- are you a breast cancer patient? I thought this forum was for breast cancer patients.

    I did read about your organization and  I'm sure the attorney general's investigation will get to the bottom of it; no need to flame the cancer patients here. 

    Susan 

  • mikeomg
    mikeomg Member Posts: 17
    edited March 2011

    no I am the relative of one

    and it's the sec of state administrative hearing

  • ---
    --- Member Posts: 7
    edited March 2011

    To Motherofpatient and ArleneA,

    Thank you for the information.  I will definitely look into those.

    Take care,

    Laureen Romero

  • cmksocal
    cmksocal Member Posts: 163
    edited March 2011

    Laureen - Some insurance companies cover cold caps.  Some will cover them in lieu of wigs.  I was reimbursed 50%.    In my case, the out-of-pocket costs were no greater than buying a couple of good quality wigs. 

     Colleen

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

    RE - Mikeomg - Funny how the Secretary of State and the Attorney Genreal do not report this so called bad employee. That "employee" did not use donations to go on crusies or pay bar tabs as the AG and SS have uncovered in their investigations. I will believe the AG , the SS and the IRS over you any day. You are only in this to make money on caps people can purchase online by putting "elasto gel" in and then following Penguin's hair care.

    The moderators need to stop this exploitation of cancer patients and their caregivers.

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

     Re: Advance and mikeomg - I post this in the interest of cancer patients' welfare.

    Although Camp Coastal billed itself as a charity, Secretary of State Delbert Hoseman says it was never registered with his office.

     

    "It received a significant amount of money. In the five million dollar range we believe, from various sources from the United States and from around the world to help citizens in Mississippi get back on their feet and rebuild their homes," Hoseman said.

     

    Hoseman says his office has spent months investigating complaints that Camp Coastal Director Mike Sweeney and his assistant Sandy Molenhouse were misusing funds.

     

    "As we looked into the books and records over the last two years, we find that approximately $270,914 dollars was used as personal salaries to two individuals in Camp Coastal. Their personal transactions involved in this account, approxmiately $131,016. And we had travel and marine of approxmmiately $83,000," Hoseman said. "These included trips to Belize and the Bahamas, on cruise lines everything from bar bills to individual nail shops. The total is approxmiately a half-a-million dollars spent of money that was donated." (See below for detailed spending)

     

    WLOX News reported on several of the building projects started by Camp Coastal, but Hoseman says his office hasn't been able to get an accurate count of how many houses Camp Coastal actually built.

     

    "Some of that was obviously used for that purpose, but a good bit was not," Hoseman said.

     

    The Camp Coastal Outpost on Highway 603 in the Kiln is empty now. Hoseman's office issued an order on August 29th, the three year anniversary of Katrina, shutting down Camp Coastal's operations and fundraising.

     

    As for the people who ran Camp Coastal, Mike Sweeney and Sandy Molenhouse, the Secretary of State wants to hear their explanation of how close to a million and a half dollars was spent.

     

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

    Why are we talking about this Mike?  We are here for breast cancer support and the use of cold caps.  Air your information somewhere else please. These information has nothing to do with our situations.  This board is meant for patients and care givers for the purpose of dealing with breast cancer....not anyone self promoting things especially things not even related to the topic.

  • motherofpatient
    motherofpatient Member Posts: 124
    edited March 2011

    Agree - Mike is here to get patients to use his cold caps which can be bought at Elasto gel without him - he ran a "charity" in MS after Katrina and set up a donation site on his Advance Cold Cap site to get family and friends of BC patients using caps to donate.

    I am exposing his past to keep more BC patients from getting involved with him and the company he is promoting on this board.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Back to hair!  Maria, how is it going??????

  • Nancy52
    Nancy52 Member Posts: 6
    edited March 2011

    I had the same treatment as you and am 5 weeks PFC.  My hair is coming out more than when I was having chemo.  I had a lot of hair so it is still ok but kind of discouraging.  When does it stop!!

  • mikeomg
    mikeomg Member Posts: 17
    edited March 2011

    Mother is mad because I questioned her "data" on this post, she was using our service free of charge, just as she had half the story on her data, she has only a tiny part of the truth now.

     I am sorry she has chose to take her anger at this disease out on us, we are as far as I have seen, the only people trying to actually make cold cap easily available to anyone who needs it.

    We are proud of the three years of our lives we spent helping Katrina survivors, again get the whole story not just the sensational accusations.  Find the joint house senate resolution HR 79-2008 thanking us for our humanitarian efforts, the first lady of Mississippi saying she wished state and federal government could be as efficient and productive as Camp Coastal.

     You are right this should have never been addressed on this forum. Again if anyone wants to hear what actually happened in Mississippi we will be glad to provide the whole truth, not just the accusations.

    Has no one reading mothers post wondered what she is trying to accomplish and why she would choose to disturb so many on this board? She hurts so many and believes she is doing good, she is clearly in need of professional help.

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    To mikeomg:

    You really do not belong on this site. It is for patients and their helpers only. Please refrain from writing here.

  • mecy
    mecy Member Posts: 2
    edited March 2011

    I am beginning treatment on March 28 and would like to try the elasto-gel cold caps.  Can anyone tell me how long each cap should be worn before changing?  And how long it should be worn before and after the infusion?  Thanks!

  • samdobbs
    samdobbs Member Posts: 32
    edited March 2011

    Hi Mecy, my wife Liddy has been using the elasto gels (2 TCH infusions so far), and we've been following the most extensive of various suggestions and (terrific) help from people on this board. We change every 20 minutes, starting 60 minutes before chemo and continuing for 4 hours after. We're using dry ice so temperatures are -30C or colder when we put the caps on, but vary a great deal when taken off after 20 mins, anywhere between -5C to +5C.  Liddy has also been doing 2 hours every day at home for the first couple of weeks after chemo. Also changing every 20-25 minutes but just using the freezer which gets the caps to about -20C or -25C. Good luck and let us know if you need any more details or info.

  • mecy
    mecy Member Posts: 2
    edited March 2011

    Thanks so much for replying!  How many caps do you use?

  • samdobbs
    samdobbs Member Posts: 32
    edited March 2011

    We actually bought 8 but when using dry ice, 4 is plenty, maybe 6 at most because they refreeze in 30-45 minutes. But the 8 are useful at home when cycling through from the freezer. Based on great advice from folks here, esp Torigirl and Motherofpatient, we also use wide elastic bands with velcro at the ends or Ace bandages to secure the caps as close to the head as possible. Liddy wets her hair and places the plastic shower cap on (just the first time) but I think that practice varies among elastogel users. Hope this helps.

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Mecy:  I'm due to begin chemo about the same time as you and will also be using the ElastoGels.  Sam's information is great for me too.  ToriGirl used these too and had great success.  You could PM her as she too has great suggestions.  Seems everyone has taken a lot of the protocols from PCC because Elasto's protocols are basically 15 minutes before chemo and just 15 minutes after.  I'll be more aggressive than that and close to what Sam is suggesting.

     My chemo center is 65 miles from home so I'll be putting the caps on regular ice to town and then pick up the dry ice and move the caps to the dry ice since they are supposed to cool down to the temps for use within 20 minutes or so

     Good luck and since we are close to the same time, we can compare notes.

    Arlene

  • cmksocal
    cmksocal Member Posts: 163
    edited March 2011

    To all my BC sisters,

    I have thought about this post for several days and now need to comment so I can get this off my chest (no pun intended). This has been my "happy" thread on this site because we have shared our successes, challenges, and missteps about caps, coolers, dry ice form (blocks v. pellets), infra-red thermeters & how to use them, shampoos/conditioners, hair colors, insurance coverage, etc.  Thus, I echo the sentiment that this is a thread for "users" of scalp cooling caps.  For someone with a financial stake in a product to be posting on the breast cancer.org site  (not just this thread) violates the site's rules.  I willingly share my stories of cold cap usage with my BC sisters; but if a commercial entity wishes to profit from my experience, let it compensate me.

    Colleen

  • howard
    howard Member Posts: 102
    edited March 2011

    Smksocal: that's great you were able to get partially reimbursed. I have BCBS. Any tips on what insurance needs to get them to agree to reimburse? What did you provide them? Thanks!

  • Julia1969
    Julia1969 Member Posts: 85
    edited March 2011

    Just wanted to make a note about eyelashes.  Mine fell out very late (about 1 3/4 months post chemo).  It took several weeks for what it appeared to be all of my lashes to out. I had tried to put on mascara, but with missing parts of the lash line, it looked reallly dumb.  Finally they were gone, but I discovered that I had a whole row of short lashes and the good news is that they are growing very quickly.  The company that makes Latisse has a buy one get one free offer until the end of April if you want some, but I think I'd pass because they come back pretty fast all on their own.  Another note is that the 2 for 1 place was one of the medical spa treatment places.  I got it without having to get an outside prescription or pay the onsite doctor there. 

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

    Anniemomof3:  I am good.  15 days post first chemo and no shedding on my head...only down under.  I keep wondering when it will start up top....still waiting nervously!  Agh!  I hate the waiting.  When you get dx with BC they should say  "you have BC and you also have waiting anxiety disease too which requires treatment with xanax or some other miracle drug".  :)

  • kriskat
    kriskat Member Posts: 116
    edited March 2011

    Ladies, 3 days post 1rst treatment and my hair is nasty. I know the recommendation is 4 days but not sure I can make it. My hair is oily and before this I washed daily. Any advice????

  • cmksocal
    cmksocal Member Posts: 163
    edited March 2011

    Howard - my employer (U of So. Cal) is self-insured and Anthem is the provider. I talked to BCA twice and was told caps would be covered and to submit a prescription for a cranial prostheses and the receipt. I did this after I finished using the caps. As I have posted earlier, there was an initial denial, but since USC is self-insured (and I was treated at USC/Norris), the head of our health insurance benefits department took care of this problem immediately.
    I do think others on this thread have talked about BCBS. And there are so many plans it is hard to know if you are covered. I would be talking to both BCBS and my employer's health insurance person (if that is relevant for you.)

    Julia 1969 - Ditto, my lashes and eye brows came out very late, PFC by a few weeks.  I didn't use any regrowth product.  My lashes came back within 2-3 months.  My eyebrows have always be very thin and very light, and they seem to be taking a lot of time to come back.

    Colleen

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    KrisKat:

    I haven't begun chemo yet but from what I understand your hair will dry out so I'd say enjoy the fact that it is oily as that could change.  I say hang in there girl!

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Hey Kriskat - You are doing great, hang in there.  Really, let that greasy hair hang in there! :)   Somewhere along the line another penguinista before me said to just get used to the "new normal".  I am on  day #7 with really greeeeaaasssy hair and I just try to embrace the fact that I have hair up there.  It is weird, but each week gets easier. That being said, I am going to a volleyball game and am hoping to get the back row, so no one can see the oil slick!

    Annie 

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