Saturday, April 13, 2013

Penguin Cold Caps.... Do They Really Work?

I am going back to the Penguin Cold Caps for a bit. I get a lot of calls asking me about the caps. Someone will know someone who is about to do chemo and they tell them about me using the caps and then ask if I would speak to their friend. This happens all the time. I am happy to speak to anyone about the Penguin Cold Caps. If you have any questions you can always contact me through the comment section here.

I also had a doctor tell me recently that the cold caps don't work. I told him that I personally used the caps through my chemo and I kept all my hair. Despite me telling him about my experience he still insisted that they don't work. Another person told me that her doctor told her that the cold caps would stop the blood flow to her brain. This is ridiculous. If the blood flow to your brain stopped you would immediately die. People have also told me that doctors have told them that they would be more likely to have a cancer recurrence if they used the cold caps. There is no study to even suggest this and if you ask that same doctor why that would happen they would have no answer.

A friend of mine is a breast cancer navigator. Her job is to help people with the task of setting up all the different doctors they will need through their breast cancer treatment. She has brought up the cold caps at her meetings and the doctors say they don't need to do it. It is not necessary.

Why are doctors against this? My feeling on it  is that they don't like change and that they only want to deal with things in their particular area of expertise. The breast surgeon will rarely discuss the chemo, the plastic surgeon is more concerned with the reconstruction than the disease itself, oncologists are resistant to discussions about preserving fertility and onward. They don't think keeping hair is important and they don't want to deal with it.

There are other things they won't discuss. A certain percentage of people who use taxotere suffer from permanent baldness. I don't know if this would be the case with me and since I did not lose my hair I do not have to find out. I can say that my eyebrows are much thinner than they were and my eye lashes hardly came back at all. I also lost all my body hair and it has come back much thinner. I do not mind this part but it does make me think that it would have been the case on my head as well. Here is a link about taxotere and permanent baldness. There are tons of articles about it on the web and you can always google it.

http://www.theglobeandmail.com/life/health-and-fitness/women-who-took-chemo-drug-say-they-werent-warned-of-permanent-hair-loss/article572591/

If you are considering using the caps do your own research. There are no studies to show that there are any negative effects. Scalp cooling during chemotherapy has been used in Europe for many, many years. I can say that there are many positives. For me it was great to keep my hair for a lot of reasons. I think my then toddler daughter would have been scared to see me with no hair. I was scared to see me with no hair. I didn't look like a cancer patient. But, the biggest thing of all was that I had some control over what was going on. I could beat a big part of it by keeping my hair. That was huge to me.

I have a lot of posts on here about using the cold caps. There are pictures as well. The first chemo was December 7, 2009 and I posted about it and put pictures on there.

Good luck to anyone about to start on this journey. I have to say it went faster than I thought it would. While I still get check ups cancer is hardly the focus of my life. I am much to busy to think about it all that much!!

3 comments:

  1. Hi Mary Ellen,

    Thanks for this great article - you are so right! We are a non-profit that is trying to promote cold cap therapy - for more info go to www.rapunzelproject.org. Among other things we donate biomedical freezers to chemo clinics so patients/helpers don't have to buy or handle 80 lbs.of dry ice for each chemo session.

    ReplyDelete
  2. Hello! You started your charity right after I finished chemo. At one time there was a pivture of me in a cap on your Facebook page. Keep up the good work and keep spreading the word!!!!

    ReplyDelete
  3. I blog often and I seriously appreciate your content.
    The article has truly peaked my interest.

    I am going to take a note of your website and keep checking for new information about once per week.
    I subscribed to your Feed as well.

    Look at my page :: click for source

    ReplyDelete