Help in getting a Penguin Cold Cap
I am going to be potentially starting chemo (TC x 4) in 1-2 weeks. I am interested in getting the penguin cold cap for the treatment. Does anyone know the best way to obtain this? I have been on their website recently and see that these are rented. I live in MA. Is anyone finishing treatment with the cold cap who would be relinquising theirs or anyone wanting to split the cost of rental? Please let me know.
Thanks
Comments
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I'm using the cold caps - also doing TC x 4. II'm day 15 past first treatment -- live in TX and renting them. There are phone numbers on the Penguin Cold Cap website -- they can help you and search on here for Cold Caps for the Cold Caps Past and Present -- tons and tons of support. Also Rapunzel Project supports the cold cap usage. Hoep it helps!
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Thanks for the reply. I just received my caps and am starting TC x 4 next Mon. I have 8 caps. How are they working for you so far? How long are you wearing them for after the chemo infusion. Thanks
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mje123 ~ How did the caps work for you? I just had my second TC last Thursday -- starting to feel better today. Still have my hair! You should join the Cold Cap Users to Save Hair, Past and Present thread -- it is GREAT support!! Let us know how they are working for you!!
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Lmflynn,
That is so great to hear!!! I had my first TC 2 days ago and it went very well. No side effects yet or issues. Did the cold caps - 8 caps in all rotating them twice. My husband was great doing all the cap changing and preparing them. Used 2 coolers with dry ice etc. Very hopeful that it will work for me. Following all of the cold cap instructions exactly. Keep me updated on how it is going for you.
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Hi, looking for cold caps, starting treatment in a week in a half. Where can I purchase them? If anyone knows please let me know. Thank you so much.
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Does anyone know... if someone has already had their first of 4 TC infusions, is there a possibility the cold cap could still work? Someone I know started chemo this week, before I had a chance to mention the cold cap to her, and I'm wondering if it's too late. Deanna
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dlb823,
I believe that the cold caps have to be used with each treatment starting with the first for them to work.
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KarenRenee,
You can find all of the information on the penguin cold cap website. There are phone numbers to call to rent the caps and informational sheets to fill out based on your chemo regimen. If you need any further information don't hesitate to contact me -
mje
what did you finally decide on for chemo??? How is it going for you?
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momand2kids,
I finally decided on TC x4. I had a onc consultation at UCLA that was great and gave me some closure that I needed on getting to a decision. Had my first treatment 8 days ago and doing very well. Doing the cold caps
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I also live in MA and am very interested in using the cold caps. Were you able to find a hospital in the area that uses them, or did you rent them directly from the manufacturer? Do you happen to know if they are covered by health insurance? I would love to know if they worked out for you in keeping your hair. I will be starting chemo in January.
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Patwriter123,
Unfortunatey there are no hospitals in the area that use them and no hospitals that have the freezer for them. In fact most hospitals are not even aware that they exist. I am doing the chemo at DF. You have to rent the cold caps from the penguin cold cap site online (http://www.msc-worldwide.com/indexusa.html). After filling out the appropriate forms, Frank then can guide you on how many caps you need for your personal chemo regimen which is different for everyone. I have a total of 8 caps which is rotated through 2 times on the day that I use them so I am using 16 caps. I am fairly certain that they are not covered by health insurance although some on these boards have received some coverage for them when their physician has written for what is termed a "cranial prosthesis" for chemotherapy.
So you basically have to get all the caps and ancillary items yourself and then have 1 or 2 people taking them off and putting them on you during the chemo session which is typically an hour before, 2 hours during infusion and 4 hours after infusion. You have to purchase coolers, dry ice and get the caps to -32 degrees. It is labor intensive for sure but actually makes the chemo time go by very fast. My husband is with me during my sessions and coordinates all of the caps both on and off and does a great job
I am 2 weeks out from my first infusion of TC and doing well. No hair loss thus far. I am doing TC x 4. I am hopeful that it will work for me.
Don't hesitate to contact me if you have any other questions or there is any way that I can help
Best,
J
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Mje123,
Thanks so much for providing all the detailed information on the Penguin Cold Caps. It was very informative! I hope that your diligence in applying the Caps during your treatments are continuing to work for you. Please let me know!
I have a pre-test meeting tomorrow with the surgical team and would like to approach them about using them, but don't think they will be receptive to the idea. I have already talked to the NP about using the Caps, but unfortunately she tells me that there has been no proven evidence that they work, and has discouraged me against giving them a try.
I would like to prove them wrong by telling them that they are currently being used with successful results by at least one other person. Your feedback is very important to me and I greatly appreciate anything more you could tell me about your current progress, both good and/or bad.
Sincerely,
Patwriter123
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Patwriter,
Do not be discouraged or dissuaded about using the cold caps. They do work and have been proven to do so. There is much literature in Europe that demonstrates their effectiveness. I am a physician and my husband who is helping me with the caps is a surgeon. We have done extensive research on the penguin cold cap system. Depending on your specific chemo regimen there is a 95% chance that it will work. Right now I am 25 days out and have done 2 treatments of TC and have not lost any hair. I have 2 treatments left.
The NP that you are speaking to I am sure has no specific knowledge of the effectiveness of the caps. It speaks to many people's ignorance and unfortunately their indifference. You should definitely research the caps if you are interested. As you can tell on the threads there are many women using them with success. There is great information on the penguin cold cap website. If you feel strongly about trying to keep your hair then it is definitely worth it. It is time consuming and labor intensive but worth it. I am getting my treatment at Dana Farber - they did not discourage me from using them althgough I can't say that they went out of their way to help me either. The bottom line is that most are ignorant to their effectiveness.
I use 16 caps per session. So far I have done 32 caps and am past the point when I should have lost my hair. So far I have lost no hair so am hopeful that it is working. Besided myself there is one other person at DF who is using the cold caps with success.
If I can be of any help to you or if you have any questions please let me know
Julie
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Patwriter,
What hospital will you be treating at in MA? Have you decided yet? -
Julie,
Your reply was the best thing I've heard since I was diagnosed. Thanks so much - I am so excited now, and definitely want to give the cold caps a shot. I can't wait to tell my husband! I am having my surgery at U. Mass Memorial - University Campus next Wednesday. Are you familiar with the surgeons there?
I am going to bring up the Cold Caps at my
pre-test appointment today and see what the team's reaction is, and base my decision on that, as far as the chemo goes. If they are negative about the whole thing like the NP was, I will probably have the chemo done at Dana Farber instead of at U. Mass. I'll let you know what happens.Pat
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Patwriter,
Good luck with your upcoming appt. If I can be of any help with any further info please let me know. You will find that they will probably not be fully educated on the cold caps but they should definitely not discourage you from doing it if it is something that you feel strongly about. For me attempting to keep my hair was very important. I spent a great deal of time going through the medical research and getting the caps and ancillary items that are needed before starting. It does take a while to get everything including the caps (which you rent then return when done with all of your treatment). So far I am very glad that I am using the caps.
Frank is very thorough and will go through everything with you. You will need to fill out the specific information on the website as the effectiveness of the caps depends in large part on your specific chemo regimen. That will also determine the amount of caps that you will need.
Keep me posted on how your appt goes
J
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patwriter~
mje123 has been on the Cold Cap Forum -- so glad that the caps are working for you too! YAY! We are about one treatment apart in timing. I've had 3 treatments and I am a week out from there... 49 days and still have all my hair (there is shedding but in the mirror you can't tell) If you decide to use the caps the forum is a great place for support and information --
Hope all goes well at your appointment! Lisa
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Lmflynn,
Great to hear that things are going well for you - 49 days - awesome news!! Keep up the great work.
patwriter,
Hope your appt went well today. Join us over on the Cold Cap Forum
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Hello Julie and Lisa,
Congrats, Lisa, on the excellent progress you have made! 49 days and only minor shedding. That is awsome! My husband and I are going to team up and definitely try the cold caps when I find out what my chemo treatment plan is. My operation is on Wednesday, so I'll probably know the specifics by then.
Julie, my pre-test appointment was pretty much them testing me to see if I would undergo the anesthesia without any major problems, such as EKG, physical, tons of questions, etc. However, I did ask another NP if she had heard of the cold caps, and she said she hadn't, but encourged me to give them a try, as long as they caused no harm. So finally I have found a health care professional that is encouraging me in this endeavor!
I am a writer by trade, so maybe I'll even write a book about this whole experience some day...
I'd like to join the both of you over on the Cold Cap Forum. Can you let me know how to get over to it? I tried listing topics, but there are hundreds that don't seem to be listed in alphabetical order. I'm not familiar with this web site, so maybe there's a search mechanism I'm not aware of? Please let me know.
Thanks for your help!
Pat
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Pat,
Great news about your appt yesterday. The cold cap forum is Cold Cap Users Past and Present to Save Hair. If you search those keywords you will find it. Use the search feature at the top right. Good luck this week
Best,
J
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Julie,
Thanks for sending the instructions on accessing the cold cap forum. I am anxious to find out any more information I can on others who have used them and their results.
Also, I appreciate your good luck wishes for this coming week. I am growing nervous about the ordeal as the time gets closer, and it helps to know that others are thinking of me.
Best wishes to you for a happy and healthy 2011!
Pat
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Pat,
As you will find out this site has a wealth of information and is very supportive. We are all here to help each other and it is a truly wonderful resource. All the best to you
Looking forward to a healthy and happy 2011
J
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Pat~ You'll find the Cold Cap forum to be very encouraging .. and supportive. There are 55 pages of almost complete success stories with all different types of chemo..... I have actually made it sort of my home base -- but there are also forums for radiation (i.e. Radiation Dec2010 would be all women starting radiation in Dec 2010), chemotherapy and mastectomies. These are very helpful because who else to ask questions or talk with than others going through similar situations at the same time. Good Luck on your surgery. (now you have 2 people thinking of you)
Happy New Year!
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I just this moment joined this board after reading about the cold caps! I'm also at DF, though so far have only had a first surgery (lumpectomy). Heading into the whole ball of wax. I've been planning to cut off all my hair to do an underhair, but these are completely intriguing!
My one question is about long-term results and the risk of occurrences of brain cancer from the chemo not getting around in the head so effectively. Is there info on that? mje, any chance that you are in the care of ann partridge? (i.e. will she let me do it?
Emily
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Emily,
I too thought that I would have to cut off all of my hair but decided not to and am doing the cold caps at DF. I have had 2 sessions of TC and only 2 sessions left. So far I am day 37 and have all of my hair so the caps definitely work. You will find great information on this board with many success stories. Check out the forum on Cold Cap Users Past and Present to Save Hair. In regards to your question there is no long term risk of brain ca from using the cold therapy. The chemo still crosses the blood brain barrier and reaches but does not affect the hair follicles at the scalp due to the low temperatures that they are exposed to. I am a physician and work in Boston and did extensive research on it before beginning it. For me it is definitely worth it. My husband is also a surgeon and he helps with with the caps during each session as it is definitely labor intensive but doable.
My onc is Ann Partridge and she is fine with me doing the cold caps. I think they are actually surprised that it works as I am approaching the 3rd treatment session next Mon and have all of my hair and should not at this point. So for me it has been successful to this point. You can find all of the information about the caps, the process in getting them and using them on the Cold Cap Forum and also on the penguin cold cap website. At DF they do not have a freezer for the caps so we are doing it ourselves on dry ice and it is working fine.
If you have any other questions don't hesitate to ask or PM me
Julie
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Hello Julie and Lisa,
I had my surgery last Wednesday, and seem to be doing better than expected. Thanks again for your throughts and encouragement through this!
How are your Penguin Cold Cap treatments going? I often encounter discouragement on using them whenever I tell someone about them (especially people in the medical field), but am determined to prove them wrong. (They say I'll be too tired to care about anything else other than getting through treatments, and then sleeping all day long.)
My question is whether there is an advantage to having chemo done at DF over any Worc. hospitals, since no hospital seems to have the freezers needed to keep the cold caps at the optimun temperature. Worcester is more convenient for my husband and me, but if DF if the way to go, please let me know and I'll do whatever. Next Tuesday I have my post-op appt with the surgeon to find out the results of the biopsy, etc.
I wish there was a way to really talk to someone when (not if) I start the Cold Caps to find out exactly how to use them, any tips, etc., as I think my husband wants to give it a shot with me as a team to save my hair, and know exactly to do and not to do. For example, is it really as tricky as it seems to be in getting them to exactly the right temp for when you need to use them? How does one prevent from getting frostbite when handling them?
Thanks again for any info on this! You've provided so much insight into this already - your correspondence has been a godsend.
Pat (Patwriter123@aol.om)
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My oncologist doesn't want me using cold caps because he says the chemo won't get to the scalp as effectively, and I wouldn't want to risk scalp mets...
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Pat~ I am done with my chemo treatments!! Still have my hair... I have gained the support of my oncologists and nurses... noone really believes it will work. But it does. You have to make your own decision -- I think MDs don't want to deal with the caps.. there is a lot of literature and studies done in Europe on scalp mets etc... they have been using the caps over there for 15 years with no difference in scalp mets than without the caps... per one larger study. The chance of luekemia caused by chemo was a higher %chance and fear for me than scalp mets which is uncommon with breast cancer mets.
It is a commitment -- and can be overwhemlming -- but it sounds like your husband could handle it ... many many women on the Cold Cap Users Past and Present to Save Hair thread will attest - one went through 12 treatments of Taxol with only her mom as a helper. The first time is an "ordeal" -- mostly because you need to get all the stuff -- coolers, thermometers, dry ice place, contact MSC to get the caps, etc. but after the first time -- its not that big of a deal. I'm single -- so I had two friends with me each time (3 the last time) and it actually made the chemo go faster and didn't even think about it while there.. (of course I also requested ativan and benedryl in my IV)
I am only 3 days PFC -- but I will tell you right now it was so worth it. My sister went through chemo a year and half before me and it took her a year to have her hair back to where she really likes it ( I thought she looked great with short pixie hair but for her it was a long time) And in the end I guess it is hair -- not your life .. but my chemo was preventative... and in the grey area on whether to do it or not so for me this was an easy choice.
Also, for me -- I did TC every 3 weeks x 4. I wasn't tired all the time -- I walked 3-5 miles almost everyday. I slept more -- I wasn't myself, I couldn't go out a lot until the few days before the next chemo -- but the caps have nothing to do with this -- you only use them the day of chemo... and if you want out of your home freezer a few hours a week.
PM me and I'll give you my cell if you want to talk and discuss ... or I'll give you my personnal e-mail and we can discuss more..
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