Cold Caps in Canada or Ontario?

Options
curly123
curly123 Member Posts: 127
edited June 2014 in Canadians Affected by Breast Cancer

Hi there.  I am about to begin chemo in the next few weeks.  I have been reading a lot about cold caps, which seem to have a good success rate in the UK and in the U.S.  There doesn't seem to be as much info in Canada on this, although I have been in touch with Cold Comfort Canada and Penguin Cold Caps in the U.S.  Has anyone used these in Toronto or Canada?  My oncology team is very skeptical and doesn't want me to use them.

Any help would be very much appreciated!!!!

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2013

    Hello curly, and welcome to Breastcancer.org.

    You might want to post on the thread Cold Cap Users, Past and Present to connect with women who have used cold caps, and may be able to tell you about Canadian experiences with them.

    • The Mods

    · Share on FacebookShare on Twitter
  • curly123
    curly123 Member Posts: 127
    edited March 2013

    thank you.  I will try that.

    · Share on FacebookShare on Twitter
  • Albertan
    Albertan Member Posts: 38
    edited March 2013

    Wow - I'd go for it if I were in your shoes.  I found out about cold caps after my first chemo treatment and the woman in Winnipeg who has the cold caps said it was too late. 

    Attitude seems to be very sceptical here in Canada on the part of medical folks, but from what I can see, it's based on nothing.  Shoot, give it a try. 

    coldcapsystems.com

    Susan

    · Share on FacebookShare on Twitter
  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Hi Susan.  I am starting this Thurs with my cold caps.  Feeling very nervous and overwhelmed.  Not many on these cold cap thread with FEC D as their regimen, so I'm not sure about potential success, but I agree with you.  I may as well try. What do I have to lose?

    I went through hoops to convince my onc team.  I would feel very sad to lose my hair, but even more sad if this work I put into getting medical approval went down the toilet and they don't let anyone else use the caps if I dont have success.  I am convinced that the caps work for some women.

    How are you feeling these days?

    · Share on FacebookShare on Twitter
  • shipsgirl
    shipsgirl Member Posts: 264
    edited March 2013

    Hi Curly123, thank you for posting.  I have been trying to research cold cap options and without your post, I wouldn't have known about Cold Comfort Canada.  I've only found Penguin and the Gel Caps from Amazon.com.  Which system did you choose?

    · Share on FacebookShare on Twitter
  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Hi Shipsgirl.  I spoke with Linda Minuk, who is the president of Cold Comfort Canada.  She has machines from Paxman Coolers, which are used in the UK - one cap; no changes.  It works at a much lower temp that Penguin Cold Caps.  Logistically, it is way easier from what I can tell, but from all that I've read, it seems there is much more success with PCC.  Linda was willing to fly to my hospital to work out logistics and help with the first day of chemo, which was nice of her.  However, i decided in the end to go with PCC.  They actually only took 2 days to ship from Michigan, so I was pleased with timing on this.  Things with Linda were much slower.  As for gel caps, I haven't read many success stories with these, but some people have had success.  Their cap is already shaped, whereas PCC's have straps to tighten to your head size/shape.  I believe if they work, PCC's would be the best bet, but that's just my opinion and I haven't used them yet, other than to practice!

    As for my regimen, I'm not holding my breath that these will work, but figure I have nothing to lose. When do you start? 

    Contact Geralyn @ PCC; she is fantastic at responding promptly.  PM me any time if you need more info.  Good luck!  I start this Thursday - very scared.

    curly

    · Share on FacebookShare on Twitter
  • Snax
    Snax Member Posts: 24
    edited March 2013

    Hi Curly, I spoke with Linda Minuk on the phone extensively before I went the (for me unsuccessful) Elastogel caps route. I had no time to try to take advantage of her donated machine, and it's extremely unlikely that Sunnybrook would have said yes, considering how dead set against scalp cooling they are. When all this crap is over for me, I'm thinking of volunteering some time to try to get those Paxman machines into some Toronto hospitals. I find it embarrassing that we should be so advanced here in terms of treatment and yet so behind on something that's virtually standard in Europe and becoming more and more accepted in the U.S. 

    Best of luck with your treatment and caps! (And BTW, I only felt crummy for a few days with the first FEC treatment. You should have a couple of weeks of feeling quite normal before the second.)

    Snax

    · Share on FacebookShare on Twitter
  • fd1
    fd1 Member Posts: 239
    edited March 2013

    I have heard that the only system that really works is the Penguin Cold Caps.

    I am in Montreal and the MO told me while he had no objection to me using them, they wouldn't work.  However, I spoke to many nurses and the pharmacist who have seen them work for quite a few people, but it depended on the chemo that they received.  I also have two friends for whom they worked.  I can't remember what chemo they received but it was not AC/T. 

    The success rate for dd AC and weekly taxol is apparently limited and PCC will tell you that.  They did not work for me.  I didn't end up using them properly either though as I had extreme nausea for the first five hours after chemo and could not tolerate having the cold on my head.

    · Share on FacebookShare on Twitter
  • Albertan
    Albertan Member Posts: 38
    edited March 2013

    Good luck to you.

    According to Linda Minuk, there is a female oncologist in Quebec, I think Montreal who uses the system on all of her patients.  It would be interesting to see what her success rate is. 

    Yes, I am trying to drum up some media coverage for Linda here in Calgary.  Not had any success yet, but I'll keep trying.  Similar to your thoughts Snax, so maybe we could brainstorm some ways to raise the profile of these options?  Let me know. 

    I believe the resistance is based on bias, lack of up to date information and pretty well total lack of research.  That's what is so frustrating.  WE are just supposed to be so grateful to be getting treatment, we should just suck it up and live with the hair loss.  When there is a system that may, no guarantees yet, but MAY prevent hair loss, why is the male dominated oncology industry so closed-minded to even looking at it???

    I've finished chemo - lost all my hair on day 15, I think but kept my eyebrows and eyelashes - until 2 months after chemo (as in, now).  So here I am starting to get peach fuzz back on my head, and my eyebrows and eyelashes are all falling out!  I am pissed off to say the least.  I am on Herceptin now, for HER2, and there isn't supposed to be a connection to it and hair loss.  Called my onc yesterday and she said, well, yes, losing them 2 months after chemo stopped is unusual, but nothing to worry about.  Oh thanks a lot.  She suggested eyebrow pencilling in some brows.  for a person who doesn't wear any makeup, that might be a stretch for me. 

    Good thing I wear glasses. 

    Onward and upward, eh?

    Susan

    · Share on FacebookShare on Twitter
  • curly123
    curly123 Member Posts: 127
    edited March 2013

    Snax - thanks for the well wishes. The day of went fine.  The caps made it a very long day.  Not sure if this will work, but worth a try anyway.  Had some great support.

    Had a bad night last night but yesterday and today during the day were fine.

    Susan - I hear you...sorry about all the hair loss.  It's brutal and the medical field just doesn't seem to care. Guess they see it so much, it's a non issue for them. But for us, it is awful.  Hope you are feeling well at least.

    xo

    curly

    · Share on FacebookShare on Twitter

Categories