Cold Caps Users Past and Present, to Save Hair
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Hi ALL
I'm over a week post my last chemo ( 6 infusions of TCH) and still have eyebrows and lasher, they thinned a lot but nothing that little bit of mascara can't fix. I have been using Latisse since my 3rd infusion. I asked the plastic surgeon if its safe to use during chemo and he said yes. After reading some of the posts about loosing them post chemo, anyone has a theory on why we loose them weeks and weeks after chemo is done/
Also I wanted to ask ladies who are done when can I color and what to use? I'm sooo happy I still have hair but they look terrible half is dark, half blonde, I had highlights before that breast cancer journey.
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Newly diagnosed and my surgery is next week so I'm not officially 'staged' yet (but looks like Stage 1). My oncologist is concerned (no scientific data) that the cold caps might prevent the chemo from getting to those areas and the potential for a cancer to be missed. However, she says that those patients who have used the caps kept their hair.
Thanks, Arlene
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I just had my last consult with my radiation doctor. I finish next week. He said that with Stage 1 & 2, there are just increased breast exams and mammograms. Sounds good to not have any more invasive treatments and tests (he claims low incidence). If oncologists are concerned about scalp mets, how can they just let the rest of you go without checks?
If you're looking for clean cosmetics, I still love the Bare Escentuals stuff.
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Just back from my staging visit with my radiation Doctor--she says she has looked onto cold caps--is happy my hair is doing well after 4 TCH txs--but hated to tell me that it will still come out post my last chemo--usally in about two months---she says this is because we do not use the cold caps beyond that point---how many of us true blue penguinistas are in post cemo tx---more than 2-3 months or more after using the caps have hair??? How long should we use the caps after our last tx of chemo?? I am in a true funk after my visit--tell me it isn't true--and this doc is just one more in a long line of doubters.
Sharon
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Bummer news...was she having a bad day?
I have not heard of this...anyone else? Hate to do all this and then......0 -
I am hoping my oncologist is one of the doubters. I'm willing to become one of the penguins too. My hubby is more than willing to 'hook' me up.
Love to hear from those ladies who have used them and what happens months after finishing chemo.
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Ok...have not heard this....and Susan, Ditah, Michon, Colleen, Golfergirl, Bridetobe, Geri...many others are past the 2 month mark...and way beyond....I hear shedding can go on for a few months...but have not heard of anyone losing their hair PFC. SPEAK UP Girls ....think this may again be someone who has no idea about the science behind the caps....here's a question then...if chemo works and you lose your hair why would you worry about scalp mets??...can't have it both ways...
But now my anxiety will continue...since I'm only 6 weeks PFC....UGH! :-)0 -
sashasz3
I'm 10 weeks, almost 11, out of chemo and my hair is still with me. Shedding has actually slowed down the past couple of weeks. I know there are other women a lot further out from chemo than me on this board that have their hair and everything is fine. I think your doc is a doubter like many are. I'm still careful with it. Treat it as fragile, washing just twice a week in tepid water and have not colored it yet. Just came from my first hair cut since August and it felt so good! I think as long as you don't start coloring it and using a lot of heat right away, all should be fine.
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Thanks for that response. I'm assuming everyone gets their caps from Penquin? Our center doesn't have the special fridges so if I try it, hoping the dry ice will work. My hair is long - is it a good idea to cut it shorter?
So much good information here.
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Lmflynn -I shedded for over a month after my last tx. Not alot but strands. It slowed down every week but I was still worried. I know the fear when you see the strands but itwill stop. Remember all the hair that came out before chemo. I would have to clean my brush every few days. But after you have chemo every strand is counted. Relax. You'll be fine! I always tell people to baby there hair and continue doing the regiman till the shedding stops (everyone is different) and your hair starts to feel good again. It has just been through alot so give it some time to recovery. You can always take Silica compound tablets to help it along. It is great for the skin,hair and nails. Franks recommendation.
Talk Soon! Geralyn/gmp300
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Lmflynn: My final chemo was June 21, and I continued shedding through October. I didn't completely treat my hair as normal until it stopped; that's when I used warm water and could daily wash. I had begun regrowing even during chemo, but as long as it was shedding, I continued babying.
Wish I'd had the nail info from y'all! My friend and I celebrated my one-year-cancer-free last weekend with a spa day, and my nails are the pits since then. Don't know if it was a bad spa (seemed great at the time) or just the condition of my nails. I did use ice for fingers and toes all four TC, but brittle nonetheless.
Susan
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Mikeomg: Where are the results of the clinical trials available? Thanks!
Susan
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sashasz3, lmflynn: YOU'RE NOT GOING TO LOSE YOUR HAIR AT THIS POINT. Period. Shame on that doctor. Very big shame. Your physician is there to support you, not cause you fear or anxiety in any way. But mostly your doctor is there to be an enlightened player in your care team.
Susan
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Wow two wives tales from the medical community. Great bed side manner!
In all of the literature and testimonials and people I have spoke to that used cold cap I have never heard of hair loss after chemo and cold cap. What would hurt your hair? The drugs are metabolized and out of your body.
The chance of secondary mets is .002% in the cold cap test group this is supported by 2 studies one lasting over 10 years. If anyone needs the studies, I will find the study and publication to give to your Doctors and post it asap.
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After 10 hour with the caps today I am done. Done for the day and done with my chemo. Last one finished finito done..... I am quietly over the moon happy.
From what I can tell the woman who post on this board are intelligent, educated, thoughtful woman. No one has made the decision to use cold caps lightly. There was expense, commitment and discomfort involved. Not to mention the 'hair paranoia' that settles in after the process starts. Cold caps take courage and faith to use.
For a Dr to say something so casually and stupid as cold cap users lose their hair 2 months
after use would be enough of a reason for me to choose a different dr for my team.
We need to be supported by current factual information. We need to be cheered on when appropriate by our medical teams.
Both my oncologists said isn't it great u r doing chemo on your terms. I sent them pics of the cold caps when I was using them and they loved it. Both of them.
When I was diagnosed I made a choice to only surround myself with positive people. That includes Drs., Chemo nurses, surgeons, friends, weekly blood drawers...you name it. And I had to walk away from a few. they were always replaced with strong positive people. These positive people helped get me through.
Ok done ranting...seriously that dr at the very least needs to demonstrate the willingingness to be educated...0 -
After 10 hour with the caps today I am done. Done for the day and done with my chemo. Last one finished finito done..... I am quietly over the moon happy.
From what I can tell the woman who post on this board are intelligent, educated, thoughtful woman. No one has made the decision to use cold caps lightly. There was expense, commitment and discomfort involved. Not to mention the 'hair paranoia' that settles in after the process starts. Cold caps take courage and faith to use.
For a Dr to say something so casually and stupid as cold cap users lose their hair 2 months
after use would be enough of a reason for me to choose a different dr for my team.
We need to be supported by current factual information. We need to be cheered on when appropriate by our medical teams.
Both my oncologists said isn't it great u r doing chemo on your terms. I sent one pics of the cold caps when I was using them and he loved it. The other dr I saw in person. As far as I know I am their first patient to do it. They both have been practicing for decades. They were excited.
When I was diagnosed I made a choice to only surround myself with positive people. That includes Drs., Chemo nurses, surgeons, friends, weekly blood drawers...you name it. And I had to walk away from a few. they were always replaced with strong positive people. These positive people helped get me through.
Ok done ranting...seriously that dr at the very least needs to demonstrate the willingness to be educated...0 -
Congratulations Sashette. How wonderful you must feel. I haven't even begun yet and pretty darn scared so nice to hear from someone who is finished.
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ArleneA - I was more than frightened. I think being scared is an appropriate response. So. u r sane : ). I do know this board of cold cappers are strong positive women, for me the well being derived from keeping my hair and reading about others keep their hair was/is a tonic. You can do this and before you know it u will be posting. 'last chemo". ......
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Thanks again Sashette. Hoping the sleeplessness goes away soon too! As you know, the emotions go up, down, up down. Nice to have a little place to vent a bit too!
Now, I need to go check the pricing on the caps.
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Sharon, and all..... You are not going to lose your hair after you finish chemo!!!!
I'll calm down now. Let's look at the global use of PCC in the Age of the Internet. Don't you think that if the doctor's assertion was valid that there would be stories from the thousands of women who have used PCC claiming that after spending all that money to rent the caps, their hair still fell out?
I am 5.5 months PFC. I have had 3 haircuts PFC (had one during chemo!). This past weekend I was at an academic conference. At least two people when hearing that I had been out on medical last fall because of BC treatments of chemo and radiation, exclaimed "but you have your hair?!"
Colleen
(Who needs to remember to call her beautician tomorrow for her next haircut!)
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The question of secondary mets was addressed more than a decade ago. Statistically you have a better chance of wrecking your car on the way to the clinic than of secondary mets.
Dean et al (1983) found only 2 patients with scalp metastases in 7800 women with breast cancer treated with mastectomy, with or without post operative adjuvant therapy, an incidence of 0.025%. Clearly, primary metastases are rare.
The most extensive literature report on scalp cooling was conducted by Tollenaar (1994) who reviewed 25 publications (1973 - 88) with a total of 1282 patients. No case of scalp metastases was reported in scalp cooled patients receiving adjuvant chemotherapy. In their own scalp cooling study of 35 adjuvant treated breast cancer patients no case of scalp metastases was found with a mean follow up of over 4 years. More recent published studies involving scalp cooled adjuvant breast cancer patients have not reported any scalp metastases (Ron 1997, Lemanger 1997).
I will try to locate the entire documents and set up a link for those who want the clinical versions.
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Sashette - Congratulations on being done. Oh what a feeling when that last cap is removed
!! Time for another penguin graduation walk!
Colleen
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Hey all~
It will be a YEAR since I used the Penguin Cold Caps on March 25th. (I put a penguin on the calendar so that the family will remember also...) My hair is still a bit on the dry side but I have cut and colored it 2-3 times since then.
Hugs to those who are starting and those who have finished...
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I'm 10 days post final chemo. I visited the infusion center at my last appointment so everyone could see my hair. They all knew I still had hair but no one had ever seen me without the caps. Everyone is excited and one nurse looked at me and said you are all done and it doesn't look like you have ever had a treatment. She's right, it doesn't.
In spite of my successs so far it was shocking to read the post about the nurse who said we would all lose our hair 2 months post chemo. Logically I figured that couldn't be true but it was scary to read. I am so thankful for all of you on this board who have written all the reassuring responses. As a number of you have mentioned, it's so important to stay positive and everyone on this board has really helped with that.
A note to mikeomg: I would really appreciate a link to the articles on scalp metatses. I have two additional references you might want to add to your list:
Incidence of scalp metastases in breast cancer: a retrospective cohort study in women who were offered scalp cooling. J Lemieux, C Amireault, L Provencher, E Maunsel. Breast Cancer Res Treat (2009) 118:547–552
Scalp hypothermia to prevent chemotherapy-induced alopecia is effective and safe: A pilot study of a new digitized scalp-cooling system used in 74 patients. M Ridderheim, M Bjurberg, A Gustavsson. Support Care Cancer (2003) 11:371–377
I hope we will be able to make our caregivers more aware of the research in this area so that they will be able to consider the published experience of others as well as their own experience as they offer advice to their patients.
I'm still counting every hair, but staying optimistic.
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Sashette~ Yahoo ...you are done! Congrats! Your post was wonderfully said!
This journey has obviously had its ups and downs...negative and positive energy all around..but the one place where I knew I would be encouraged 100% of the time was on this thread. I agree I find the women here to be strong, thoughtful, determined, giving and downright awesome.
ArleneA~ Welcome...and know you will find support and probably free therapy :-) (I was talked off the anxiety ledge more than once!) if needed as you go through your journey.0 -
Sashette; I am so happy for you and proud of you! You did it girl! You can now close the door on treatment and live your wonderful life!
Arlene - I am getting started on Wed. When are you starting...I need someone to walk through this with!!!
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Sashasz3: I don't know where your radiation doc got that idea about losing hair 2 mo AFTER treatment, but I think she's wrong, wrong wrong. I am just over 2 months post chemo and the shedding is back to normal and my new hair is growing in thicker and thicker every day. If I were going to lose it soon, now wouldn't the shedding be getting worse? And like others have said, there's lots of people on this forum who are much farther out than 2 mo and are fine. I think we're fine too.
(Short break--cat threw up!)
Zlota: The eyebrows and eyelashes have different resting and growth cycling times than head hair, so I'm guessing that has something to do with why they take longer to fall out. I didn't want to use Latisse because of possible prostaglandin side effects and ordered Rapid Lash--but upon further reading that contains a prostaglandin analog as well. Maybe I will just wait and see how long they take to grow back on their own. The eyebrows already have lots of new hairs visible, and my eyelashes are only missing on the bottom and outer edges. For those of you who didn't use the eyelash growth products--how long did it take for your lashes to grow back? (My husband says I've moved from obsessing about my head hair to obsessing about my eyelashes and brows--I guess that's progress anyway!)
Lucky
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When you look only at one thing you get tunnel vision, lets take a look at a few other considerations to develop a new perspective on the possible side effects. As intelligent and dedicated as the medical community is unless they actually research for themselves they will never know anything about Hypathermic Hair Loss Prevention. The subject is not addressed in any form, not in class or clinics, so people on this board are the the most current and educated source of info and personal experiance for cold cap treatments.
We believe in our medical professionals and we should, they are for the most part dedicated and caring professionals, for the most part. However the differences in training are abundant, my niece graduated from LSU nursing school with a 3.9 gpa summer 2009. She is educated and dedicated, she should know the most current techniques, and treatments. She works as a surgical nurse. At our family Christmas party we were telling her about the cast that our 3 year old grand daughter from Michigan was using, it is fiberglass and has a gore-tex liner, it can be submersed, washed, scrubbed, and dried with no ill effect, it is kid perfect! The surgical RN had never heard of a fiberglass cast! I had used this type of cast in 1998 after a fall that broke my wrist , and put a lateral crack just below my elbow. In 1998 I had to poll the clinics to find the one that was using fiberglass cast, it was a new tool and not all Doctors were using it. Whenever someone tells you something that seems misaligned with what you know, remember the one medical procedure that has been used from the start of formal medicine.....A Second Opinion.
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Hello everyone,
To you new poeple, stay focused and don't listen to naysayers! We find them in all walks of life, they are always there to discourage, mailgn and doubt--Stay clear of them!!! I am appauled at the nurses and Drs. with such closed minds and total lack of education and facts about cold caps therapy. It is mind bogling that a "tried" and "true" form of therapy is still doubted. There are thousands of success cases of hair kept with this method. It is done all over the world and we have hundreds of sucess stories here in the U.S. and plenty right here on this site!!!! As Mike pointed out, there have been many studies done and no findings of scalp mets, so why keep beating a dead horse? Again, Mike you are so right--get a SECOND OPINION!!
I, too, have decided to only have positive thoughts and positive people around me. My Oncologist is the one who first told me about the cold caps and part of the reason I chose her, was the fact that she was "up" on all new therapies even those not technically to do with oncology.
Let's not dwell on all this bullshit about caps not working, scalp mets, and any other negative crap, we have all this positive info flowing thru this site, coming from SMART, CAPABLE, STRONG women who are out there doing what is best for themselves and offering great advise and encouragment to each other. Hurray for us, the pioneers in the U.S. for cold caps. Shame on the rest of the community who do not know about, do not seek correct info about and do not promote this wonderful choice that is available to anyone for whom it will be a viable alternative to being bald.!!!
KEEP POSITIVE!!!
Nancy
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My mother-in-law used to stiffen up when she was walking outside when there was a breeze. She was from the era of helmet head hair where you went for a wash and set once a week. I was out today and realized I do the same thing. When a breeze went through my hair (yeah, I have hair) it kind of pulls it a little and I stiffen. (Must be a protective instinct.)
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