Penguin Cold Caps

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liz2go
liz2go Member Posts: 2
edited June 2014 in Complementary and Holistic Medicine and Treatment

All cancer centers do not have the caps available. Are there any alternative ways to get the cold caps  and use them if your oncologist does not provide the service.

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  • Lmflynn
    Lmflynn Member Posts: 373
    edited February 2011

    Hi Liz ~. I used the Penguin Cold Caps...they were sent to my home directly...I rented them for my treatment...just google it ..the company will come up..MSC is the name. I am 6 weeks post final chemo and have all my hair. There is a thread here called Cold Cap Users Past and Present To Save Hair.....there is pages and pages of users. Use the search in the top right corner to find the thread.



    Also google the Rapunzel Project...more info.



    Private message me if you want more info.....good luck!!

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  • mdg
    mdg Member Posts: 3,571
    edited February 2011

    Liz2go:  It's worth checking out!  I am starting chemo on wed this week and trying the caps.  I am already shivering thinking about it!  If you have questions in the coming weeks, PM me.   I will let you know how it goes!  I am lucky, my doc's office has a freezer and caps available for me onsite.  Best of luck!

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  • yizbieta
    yizbieta Member Posts: 100
    edited February 2011

    Hi - Am going into treatment soon and have very long hair- would like more info on the caps0 I wrote to dignacap in sweden but they can't market it yet (it plugs in)- how does one go about getting the several changes done without a troop of people each time chemo is given? I don't have anyone who can do that for me. ANy ideas?

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  • liz2go
    liz2go Member Posts: 2
    edited February 2011

    lmflynn, thanks for website I will do some goole searching.

    mdg, I will send you a PM is few weeks to ses how it went.

    The post from yizbieta is a good question does anyone know how to complete the steps in changing the cap when your Dr's office does not have the caps?

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  • Lmflynn
    Lmflynn Member Posts: 373
    edited March 2011

    yizbieta~  There is a great resource on these boards... search for the Cold Cap Users Past and Present to Save Hair .. most of us have rented the Penguin Cold caps for the 12 weeks or more of chemo and purchsed dry ice for the day of the infusion to get them cold enough.  But I could not have changed them by myself -- you will need one helper...There is also Advanced Cold Caps that have options for you that seem to have a service agreement as well.  Both have websites with lots of information.... Good Luck .. going on 7 weeks PFC from TC*4 every three weeks and have all my hair.

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  • motherofpatient
    motherofpatient Member Posts: 240
    edited April 2011

    Advance Cold Caps/ Ga and MI: Bad Experiences: users found them to be in poor conditon and not to hold the cold temp needed. Buy your own at elasto gel and keep them in good condition. Follow Penguin cold caps system of hair care.

    If you buy your own, you can practice at home and see that one can do it. We developed a system and made straps to keep it colser to the head. Caps have to be changed at 20 min since they don't satay as cold. Caps in proper condition were -10C when removed after 20 min: Penguins were -17C when removed after 30 min.

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2011

    When i went through chemo cold caps were out of favor because of a fear that they would inhibit the reach of chemo in the head.  The thinking on that seems to have changed as they seem to be more commonly in use.  Have there been studies about this?

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  • motherofpatient
    motherofpatient Member Posts: 240
    edited April 2011

    Member, there are a  few, very few, real scientific studies on cold caps. Most only re-hash one or two poorly designed retrospective studies.  Some on the web promoting Advance caps claim and site what they call research. Some of it is merely a poster presentation and no where near research quality. However, the incidence of scalp mets is low for BC, but not zero. With so many younger women in the BC camp with longer life expectancy, the research just isn't there.  If you thinnk of it, a woman diagnosed at age 30 has 40 or more years ahead of her. A woman diagnosed at 60 or 70 has less time for complications to show up. So only time will tell about the mets - time and better, institutional, science-based research.

    One would think that the Penguin system would produce a basis for at least comments on scalp mets since they have been in use for 15 years under the direction of a scientist; however, there is no comparison between Penguin and Advance  which do not maintain cold very long. Elasto gel can be used but you MUST change them every 15 min for 50 min before chemo and every 20 min after. Do not let them touch the ice. BUY your own on line and keep themin plastic bags and in good condition, not like the ones Advance sent us and the woman in MI.

    And DO NOT SIGN any agreement or contract that does not allow you to opt out if you decide not to use them. I know Frank lets you just send them back, no questions asked and no fees.

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  • MarieKelly
    MarieKelly Member Posts: 591
    edited April 2011

    Breast Cancer Res Treat. 2011 Mar 24. [Epub ahead of print]

    Breast cancer scalp metastasis as first metastatic site after scalp cooling: Two cases of occurrence after 7- and 9-year follow-up.

    Lemieux J, Desbiens C, Hogue JC.

    Centre des Maladies du Sein Deschênes-Fabia, Hôpital du Saint-Sacrement, 1050 chemin Ste-Foy, Quebec City, QC, G1S 4L8, Canada, julie.lemieux@uresp.ulaval.ca.

    Abstract

    Chemotherapy-induced alopecia is a commonly feared chemotherapy side effect and can be prevented using scalp cooling. Scalp metastasis is a rare site of recurrence. There is a question about whether or not the risk might be increased with the use of scalp cooling. Two cases of breast cancer with scalp metastases as first metastatic site are presented. The first patient presented with a scalp metastasis as first metastatic site 9 years following breast cancer chemotherapy treatments; she used scalp cooling for the adjuvant treatment. Second case presented a scalp metastasis as first metastatic site 7 years following treatments for her first cancer; overall, she used scalp cooling in only one of her six adjuvant chemotherapy cycles. Scalp metastases as the first site of recurrence are very rare entities. Scalp cooling is unlikely to have contributed in the cases presented here.

    PMID: 21431870 [PubMed - as supplied by publisher]

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  • motherofpatient
    motherofpatient Member Posts: 240
    edited April 2011

    I also cited this study but do be aware that this is a TWO person case report, not a scientific study. i wish we could get Frank Fronda to follow up with all his Penguin users over the 15+ yrs he has been doing this.

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  • motherofpatient
    motherofpatient Member Posts: 240
    edited April 2011

    Ladies, beware of Advance cold Caps- the promoters were involved in a charity in MS during Katrina where donations were used for vacations and booze. THe MS attorney general and secty of state closed down Camp Coastal and is investigating.

     Also two of us (one in Ga and one in MI) who used their caps found them in poor conditon and they did not hold the temps - warmed to +38 after only 20 mins. Buy your own elasto gels caps on line (HPMS or others) and PM me if you want instructions on proper care and use. If does work if done right.

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  • Chanj13
    Chanj13 Member Posts: 1
    edited October 2011

    Motherofpat,

    I was thinking about using the Penguin system but just happened upon the elasto caps and now am curious.... I have not started treatment yet, probably happening the week of Nov 7th sometime.  How did you use them and what success did you have?  Did you use the dry ice? How did you know how many to get?  What kind of thermometer did you use to get temp?  I'm so confused, I just don't want to lose my hair.....

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  • Melizzard
    Melizzard Member Posts: 121
    edited October 2011

    When I asked my onc about these caps, several months ago, he said they used to use them, but stopped because people were cropping up with scalp mets right and left.  Cuz the chemo could no longer get to the scalp, so the cancer was spreading there ... don't know how many people, or anything like that, but it was enough of a trend to get the cancer center to stop carrying them.

    Just FYI

    xoo

    Melissa

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  • Ang7
    Ang7 Member Posts: 1,261
    edited October 2011
    Check out the thread "Cold Cap Users past and present to save hair."  There are pages and pages of successful users.  My oncologist researched them extensively before having me use them.  She and I believe that they are the wave of the future.  Perhaps one day losing ones hair will not be a side effect.  They made it possible for me to enjoy sports with my kids and keep my cancer treatment a private matter...
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