Posted on: Jun 14, 2009 06:04PM
Posted on: Jun 14, 2009 06:04PM
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
Nov 21, 2012 10:04PM sebm9 wrote:
dancetrancer: Thanks for the links. Is there a mention of the UCSF study led by Hope Rugo? that's going to be one of the biggies, she is one of the leading BC MOs.
301724: My MO had a similar response, after being supportive (but qualified) in her support early on. She now recommends PCCs, as do all of the MOs in her professional group. It was (and is, still) very gratifying to see that my own cancer experience could have a profoundly larger positive impact for other women, here and through my cancer center. Congratulations for leading the way!!
Tylm: I recommend shampooing no more than once/week. This was the protocol when I used caps 2.5 years ago, and they've recommended more frequent washings but the more you manipulate your hair, the more will fall out. The hair is desperately trying to hang on, so continue to follow the hair care protocol, and also monitor your liver function as best you can (iron level, etc. -- it is a big variable, as is the quality of your hair). There are some factors which we can control in this process - diet, following the protocol -- but other factors which we cannot. People should expect shedding during this process, but the degree varies. Most women with thick, coarse, andor curly hair tend to shed more heavily than those with blonde, light, fine hair. That said, most women come through the PCC experience not needing a wig, scarf, or hat. For myself, my hair was thinner (to me) but in photos it is very difficult to see a difference, other than less volume. My scalp was very itchy and hair was oily after first infusion, but by the time I'd had my second wash and my third infusion, the drying effects of chemo really caught up. Because I swim every day, I did rinse my hair every day -- and that is fine. It is less drying, but keeps scalp clean and fresh and involves less agitation of the follicles. I found that my shedding had cycles, some heavier days and some very light. Hairwash days (once/week) were definitely the heaviest, but easily a weeks' worth of hairwash shedding plus some compared to my regular, daily wash routine. Hang in there! I began keeping my shed hair in a baggie. Whenever I panicked, I just held the bag of hair next to my head as a very obvious reminder of how much hair I had. While I was going through the process, it felt like a truckload of hair was coming out. However, in 6 months, I had barely a scrunched handful of hair -- most of it a 1" layer from the base of my neck at the nape.
For anybody just starting out, I am very happy to send my comprehensive writeup of my PCC experience including pointers, tips, haircare protocol, etc.
Nov 21, 2012 11:25PM Tlym wrote:
Thanks, Susan. Still shedding ! Hair loss not detectable to anyone but me and DH who gets to hear me whine when showing him my little ziploc. I have dark brown, long, wavy hair and it still looks nice and full with no bald patches. Hoping the shedding at least continues to go evenly.
I'm at UCSF with Michelle Melisko, Hope Rugo's colleague. I couldn't get in for an appt with Dr. Rugo, but I just love Dr. Melisko and will probably stay with her rather than transferring back to Stanford when chemo is over. It's a bit of a hassle going into the city, but there's a lot to be said for having an MO who is completely in tune with your priorties. She even fast-tracked me to get in to see Dr. Donald Abrams, a renowned UCSF integrative oncologist. I'm already receiving treatment with an acupuncturist and taking herbs and supplements, but being triple negative and conventional medicine only offering me chemotherapy, I feel I have to be proactive about exploring all my complementary options.
Nov 22, 2012 01:17AM makingway wrote:
sebm-I realize when we first learned of the caps we were instructed only to wash once per week. It is now recommended to wash twice per week, and for good reason. Many women would develop a flakiness of their scalp, thought to be due to the accumulation of oils and excretion from the pores of the chemotherapy drugs. Don't want that sitting on your scalp any longer than neccessary. A gentle shampoo twice a week is best. H. Rugo is the author for the presentation that will be given at SABCS.
solantio-Isn't it mind boggling, the dumb things commented by those in the medical profession? You'd think they would be overjoyed to find that cold caps really, truly DO work!
Tylm-Integrative oncology is the way to go. Of the women I've helped, the ones receiving accupunture had little to NO side effects at all for the duration of their treatment.
Nov 22, 2012 02:33PM schoolmom wrote:
Happy Thanksgiving to everyone. Stay safe.
Nov 23, 2012 09:12PM SLB11 wrote:
Hey everyone! I will be starting my 1st T/C treatment on Dec. 3. I am scared to death. Being diagnosed with breast cancer at 30 has been such an emotional roller coaster. I am married and I have a 4,3, and 2 year old. I want to do everything possible to keep my hair and keep things as normal as possible for my kids. I do have a few questions...
What brand of thermometer and where did you get it?
Where did you get the coolers from?
Do you suggest getting dry ice the afternoon before or morning of treatment?
How long before treatment and after treatment do you wear the caps?
Thank you for all the info!! I appreciate it!
Nov 23, 2012 11:44PM Hortense wrote:
Welcome! Try not to be scared. Think of what you are going through medically as getting the cancer out of you and killing off any stray cells that might remain. Chemo's no fun, but it's do-able and over before you know it - I say that as one who finished T/C four months ago. Radiation, if you need it, is far easier. I just finished six weeks of it a month and a half ago.
While I am much older than you, I met a young woman at my center who had just finished T/C using cold caps and I swear she looked absolutely normal. She had long, full softly wavy hair and not a soul would know she had finished chemo only three weeks before. She told me she decided to use cold caps so that her young kids would not see her as "sick Mommy" because she didn't want to scare them. The caps worked beautifully for her. She said she had shed some hair and that her hair thinned out a bit, but it was impossible for me to tell that she had lost a strand. She looked great.
Are you going to be using Penguin caps? If so, you will be sent instructions that you need to follow as closely as possible. Definitely do not do anything chemical to your hair between now and when you begin chemo - no treatments of any kind, no lightening roots or getting streaks - or the chemo will damage the newly treated hair and you will end up with breakage. I learned that the hard way.
I am sure others will chime in with answers to some of your questions. I was lucky, I had an experienced helper who took care of everything for me, but I do know that people use large Coleman coolers which can be found at Target, Walmart, camping stores, etc. Some people get their dry ice the afternoon before, some get it the day of treatment. My helper arranged to have it delivered to her the morning of each of my treatments. I think it depends on your source of dry ice and how you get it.
Sears carries infared thermometers, be sure what you buy can measure down to -55C, Lowes and Home Depot probably do also. Be sure to have extra batteries. Bring a kitchen timer also as timing each cap between changes is crucial.
These are the instructions I was given:
"Ask the nurse what time will your chemo start. Fifty minutes before that time, regardless of any premeds given,
start your cold cap therapy using the caps as directed in the “Cold Cap changing times and temperature for use schedule” below
The first two caps used are used for twenty minutes each.
the third cap onwards is changed every 30 minutes
1st Cap Use for 20 minutes only
2nd Cap: Use for 20 minutes only
3rd Cap: Use for 30 minutes only – After wearing the 3rd cap for 10 minutes chemo infusion must be started (See note below)
Change all subsequent caps after 30 minutes of use for the duration of the chemo infusion and for 4 hours after chemo has finished.
The pre medication time does not count as the start of chemo for cold cap therapy requirements. Check that your doctor has not included the pre medication time as part of your chemotherapy infusion time."~~~~~~~~~~~~~~~~~ I strongly suggest that you ice your fingernails, feet and toenails during your Taxotere infusion to ward off possible neuropathy (nerve damage) and damage to the nail beds which can discolor, deform or cause the nails to come off entirely - I've met women who didn't ice and lost them. You do not need to ice during premeds or Cytoxane, just during Taxotere. Use ziploc bags of crushed ice or frozen peas to put your fingers into up above first joint. I used frozen peas once. They were kind of fun to fiddle with. You can let your fingers warm up a bit if they get too cold, then put them back in the ice to keep chilling.
Be sure to dress very warmly in many layers - think turtle necks and long underwear - and get or borrow an electric blanket to wrap up in as the caps are very cold.
Take two Tylenol about twenty minutes before putting on the first cap as it will help. They are incredibly cold when they first go on, but after about four minutes your scalp goes numb and they become bearable. Keeping the thought fresh in your mind that you are doing everything you can to save your hair so you do not go bald in two weeks is very motivating. It makes the cold worth it.
Nov 24, 2012 08:21AM 301724 wrote:
Hi SLB11 - This is a wonderfully supportive and helpful group! I am currently through 3 of 4 taxotere/cytoxan treatments. Except for hair loss on the top front of my head due to frostbite from the first cap session (more about that in a minute), I have had little shedding. Today was my weekly hair wash. I lost ~ 100 hairs max. And that in light of a daily comb that yields 0-15 hairs only. So be assured that cold caps work.
Regarding the frostbite - I think more info could be provided about how to avoid this as almost everyone who gets frostbite - not that many of us - have it happen on the first round. Combing hair back from your forehead - as opposed to normal side part with bangs (for me) - would have helped. Even though I switched my part, it wasn't sufficient. Also being told what to look for in terms of tenderness would have helped. At the end of my first session, the top of my head was numb and tender. It stayed that way for more than 3 weeks, then started flaking off and bringing clumps of hair with it. For sessions 2 and 3, I used gauze strips over the thin and flaking spots. It seems to have worked fine. While I have a pretty big bald area in the front, combing over it works. And - the area that flaked off first seems to have some new growth starting!
So in addition to the above advice, I'd add this:
* make sure caps are wiped dry before each use
* comb your hair straight back from your forehead
* bring some rolled gauze and scissors (or get some at your center) so that you can cover any tender/thin areas
* expect the caps to be cold but if they hurt consistently, cover that area with gauze strips
* have your helper check periodically during cap changes to make sure there are no red areas
Best of luck!
Nov 24, 2012 10:31AM Loafer wrote:
I have excessive hair loss and thinning while using the cold cap. Currently on Day 22 and its getting much worse, rather than better. Coming out in fistfuls. All over clothes, comb, floor, sink, shower. Going to get it cut today to try to manage through this. Is there anything else I can do to prevent this loss? At what point do you consider yourself in the unsuccessful 20%.