Cold Caps Users Past and Present, to Save Hair
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Hi everyone,
Well I graduated!!!!
I just completed my last TCH (6th chemo) on Friday and am verry happy to report I still have most of my hair and my sanity. I guess my hair even grew during the treatments because I have about 2 inches of grey black roots. It is great to be able to go out and not have to worry about wearing a wig, cap and just feel more normal. I am having some side effects right now (some neuropathy, heartburn, taxo tears, and definitely more tired but is a good feeling to finally be done.. My son who has autism never even knew I had chemo. I know he would have been even more worried if he saw me bald. The surgeries were scary enough for him.
I now have the 8 caps on my kitchen table getting ready to be shipped back. As I look at them I am reminded of the many positive and some negative experiences I have had because of them. I remember some of the nurses initial hostility and negativity at first, telling me it wouldn't work and telling me I could not bring an ice chest into the infusion center. The ice caps taught me to be more of an advocate for myself. I ended up speaking with my oncologist, nurse educator, social worker just to get them to understand. I am not certain they do even now, , because some of them seem very indifferent but I hope to make a presentation to their tumor board and others . For me it wasn't all about saving the hair,but having some control over my journey with cancer.
For those considering doing the caps or just starting out-here are some of my pros and cons with the caps: I had friends help me put on caps, but did all the other prep myself. It is doable! I learned to ask for help and people gave it.
Cons:
1) Caps are cold initially but not unbearable, atavan helped
2) Having to go to the dry store myself the day before and get 100 pounds of dry ice
3) Putting my caps in dry ice at 5:30AM every 3 weeks
4) Moving the small ice chest into the infusion unit and having my team have to go back and forth into the parking garage to exchange caps -this could be avoided if infusion center would allow a freezer.
5) Cost
Pros: 1) During infusion was more worried about the temp of caps and focusing on if they were in right position, etc which kept my mind off 5 hours of chemo
2) Had a wonderful team of my friends who helped me with the caps-felt very grateful that even people who did not know me helped
3)Got the chance to join this wonderful discussion group and meet some wonderful women, We are all warriors and the support offered to me and others on this discussion group is amazing
4)My children do not have to see me bald
5) I do not have to see myself bald. Bald may be beautiful for some but not for me. I have always liked my hair.
I still have some stuff to go thru, 6 more months of Herceptin, possible radiation and a reconstructive surgery but hey I have got my hair.
When I can figure it out I will post a picture. Thanks to all of you again for the support!
.
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Serenity...congrats! That's great that you are done but even better that you have you hair! I agree with your list of pros/cons.....Being a mom it made me feel good that my 4 year old did not have to learn the words "cancer" and "chemo". Because I had my hair I did not have to go there...I can save that conversation for when he is older. I am glad I spared him the childhood memory of me being bald and looking sick. No child should have to see that. Because of cold caps, I did everything I normally did before chemo. I know those losing hair can do that too, but I did it without anyone even knowing I had cancer, let alone chemo. There is something to be said for that. It just seemed more dignified to me personally. I know it allowed me to have a little control in a time where my life was spiraling out of control. We are moving out of state now and I can move with my hair and not tell everyone I meet I had cancer. I can choose who I want to tell. It may sound strange but I always felt like once bald from chemo it's like you may as well go around carrying a sign that says "I have cancer". No one should have to broadcast their medical situation like that....let's face it, if you have diabetes, you don't have a tattoo on your forehead that says "I am diabetic" right? It is personal....cold caps kept my BC personal. That was important to me.......I took some time off from teaching aerobics during surgery and chemo....I went back to teaching and my class never knew about BC. That made it so much easier for me to get back up in front of everyone knowing they did not know.......
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i agree with both of you. I have told very few people about my breast cancer and chemo. Once people know ... you wear it for life. "Oh, that's Pam, she had breast cancer". F that (sorry!) ... i don't want this to define me. My hair is crap - but it's here, and my kids don't have to look at me with pity. Although i can't wait to stop looking at my thinning scalp and get on with my life!
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CONGRATS Serenity. Such a good feeling isn't it. Many times, I question dropping down to 4 TXs but must rely on the doctors wisdom. Yeah for hair too!
Maria: We too are moving out of State...quite the challenge with everything else but the move takes your mind off things too. Good luck with your move and hope it is someplace you'll love.
Starting radiation today armed with Vitamin E, Aloe, Aquafore....what am I missing? Guess I'll just put Vitamin E on right after treatment unless some of the experts have a better suggestion.
Arlene
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LivCar Also lots of scalp ithcing, flaking, right in the front. Completed 3 of 4 rounds of T&C, last one scheduled for this coming Friday. Went to a derm who prescribed diprolene, a strong corticsteroid, but I am afraid to use it. The itchng stopped after a week or so, and the flaking slowing down. Don't know what to do for fourth chemo on the front where the problems are. Last chemo I used a piece of silk, but didn't help much. The caps are just much colder on the top/front. However, very little shedding, very happy with so far with results. Washing seems to help some, it gets out some of the flakes. but I only wash ir about every 6 days in cool water. Any suggestions appreciated!
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Serenity - Congrats on finishing chemo and Thank you for for your encouragement. I have just started chemo TC round one was last week on thursday and I am using the PCCs. I totally agree with all your cons, and like you the PCCs are new to the infusion center that i go to, so i get the "looks". The good thing is my Med Onco is onboard with me using them and my infusion nurse was great last week!! I was with my hubby and girlfriend and you should have seen us waltzing in with 2 coolers on wheels LOL.. they decided to give us a private room haahaha. I have a question about moisturizing my hair in between infusion, any suggestions? should i use my regualr moisturizer? my hair has been very very dry.
Nmoss - you mentioned wearing the caps at home 2-3 inbetween infusion, i am 5 days after my first chemo, can i wear them now?
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hadle - i had the same flakes. From reading the thread, listening to the other girls and talking to a dermatologist - it's the lack of washing. i can tell you that slowly my flakes went away. Just hang in there!!
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Hi Snoopy, you can wear them anytime. I usually did days 2-4 after TX.
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about the flakes
I actually got crusty yellow stuff and then stuck-on darker patches at the top that are dry, tight. I think the caps were too cold there. where I scratched, my hair thinned. only one AC treatment so far, I don't think it's that.
I think an oil for the scalp might help all that dryness and flake. there are these organic hair treatments made of argan and other oils that might help and make the follicles happier. john masters, living naturals, weleda etc. all very expensive.
someone posted about the digni caps and said that they recommend oil treatment weekly for dry hair as part of their protocol. might be worth a try.
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I want to share with everyone that if you want to be sure to save your hair the highest success has been with the Penguin Cold Caps. Everyone I know of personally, about 20 women, myself included (just finished my 6th and final chemo a week ago) have saved ALL of our hair, no thinning at all. That is because the Dignicaps are not cold enough. The Penguin Cold Caps require a temp of minus 33 degrees celcius below. That's a huge difference between Dignicap's 10 degrees above. Just wanted to let all you ladies know!
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Hi Aoll:
I will try to answer some of your questions.
No cutting hair for a month before chemo, as I recall.
I also had flaky scalp and toward the end a few scabby places, but went away after a good washing-still in cool water and organic shampoo.
As far as oils or treatments, I would ask Frank about that.
I personally had a real haircut, with a little style to it and everyone thinks I look great. Personally, I don't like the color, which is very grey in front and sides, but dark in back. A lot of people say its pretty, I am not used to it, but the haircut really made a difference. Before, it was wild and sloppy looking, now it is very cute. I am waiting to color with non chemical ammonia and peroxide free color by Clairol. I'm waiting for a full 3 months. Right now I am 11 1/2 weeks past last chemo. Next week will be full 3 mos. I will color a week from Sat.
Best to you all in this journey.
I personally don't care who knows I've had BC, but I prefer to tell those I want to tell and not have had a bald head do my talking! The theme for the poster I am working on is:
"The Face Of Cancer Does Not Have To Be Bald!!!" There is a choice!
I said to my hubby the other day,"First they poisoned me, now they are cooking me, as long as they don't bury me, all is okay!!"
Keep Positive!!
Nancy
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Nancy: Nice post. I laughed at the 'cooking me" comment. Had my first cooking today.
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Hi,
I am starting chemo on 19th (A/C 4 times every 2 weeks followed by 12 weekly Taxol).
I will use the Penguin Cold Caps to preserve my hair, so far struggling during practice to fit the caps on schedule (my husband is helping and he is deflinitly totally stress about doing it right). Any advise?
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Thanks to all you "old timers"...you were all my lifeline way back when. Now I am 11 weeks PFC. Things are going well. Looking at a 2nd color in a couple of weeks - with my normal color at my normal salon! Yeah!
Re cutting - I colored, foiled, and cut my hair five days before chemo with no ill effects. However, Frank had said not to cut hair since the follicle adjusts "its hold" to the hair length. So if you have long, heavy hair and get it cut, your follicle has to adjust to the new shorter length, which requires less hold. That it his theory - I hope I am getting it somewhat accurate.
Re the flaky scalp - I know I did this differently than others, but I put a handful of conditioner in my hair on my weekly wash. I also put moroccan oil (the brand) cream on my hair. I was flaky - with the yellow yucky scalp, but it seemed manageable.
Ralston - just read your post. I would recommend reading through these older posts, there are so many smart ideas, recommendations, etc. Also, look on the web, since there are quite a few websites that have the info as well.
Have a great day ladies!
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HI Ralston - i did 4 AC, and now doing four Taxol. You'll be ok ... the chemo is totally manageable. Frank's basic advice on washing, as well as do/don'ts are the important things. The advice i learned from this site is use Latisse on your eyebrows, as well as make sure you wash your hair in the shower. i was tipping over in the tub and, i think, losing extra hair from the tangles. Take a few pitchers of cold water in the shower with you. Keep the hot water on your body, and wash your hair with the water in the pitchers. I wash washing my hair once a week, but have switched to every two weeks (sorry, disgusting, i know), but i lose so much in the wash that this is helping maintain what i have. AC is a little harder, so we need all the help we can get. Your hair will slowly adjust. It won't feel dirty. Start with once a week and gradually increase. Stay on this site, the women here are a tremendous help. Comb your hair as little as possible. You'll need every strand! Start being careful now. You will have a big shed in the 21-25 day mark. Don't panic, it'll slow down. Good luck. Using the caps is a great decision!
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Tricia_strong - I hope to prove you wrong on the DigniCap. I'm curious if you have actually seen the results from this Cap personally or are you speculating?
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dexxy - My only worry about the dignicaps is the time after infusion. We've been told 4 hours and you're doing only 1. Maybe you can ask them why they think one hour is enough?
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I think its cause the temp stays at 5 degrees the whole time, plus your hair is wet to seal the deal. I am in a group of 20 using the DigniCap, and as far I know its the first group in the US, I was #18, so it will be interesting. But I can tell you the woman that was sitting next to me was on her 6th TC and I couldn't even tell. Since its a trial they don't offer up that much info, don't want to sway results. I'mquoting from an email "About the post infusion cooling time, we are still learning as the combinations of chemo vary over time and the result 1+1=2 is not the truth when it comes to chemo. But so far it seems to be enough with one hour for TC."
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I think its cause the temp stays at 5 degrees the whole time, plus your hair is wet to seal the deal. I am in a group of 20 using the DigniCap, and as far I know its the first group in the US, I was #18, so it will be interesting. But I can tell you the woman that was sitting next to me was on her 6th TC and I couldn't even tell. Since its a trial they don't offer up that much info, don't want to sway results. I'mquoting from an email "About the post infusion cooling time, we are still learning as the combinations of chemo vary over time and the result 1+1=2 is not the truth when it comes to chemo. But so far it seems to be enough with one hour for TC."
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I'm sure it's fine. There's so much success with TC. Good luck, and please keep us posted.
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Ralston, what area are you in? Maybe there is a former PCC user that could do a run through with you guys. If not did you talk with Frank or Geralyn at PCC's? Geralyn called us and walked my DH through things on the phone the weekend before. It went OK.....I know it's scary. Just make sure you get everything super tight on your head. Hugs! If you have other questions - post them...these gals helped me when I did it. Feel free to PM me if you want.
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Hi All: I'm 6+ months post final chemo and had my first permanent color in the salon yesterday. No more grey! I used Loving Care (temporary) for months 2-5, then semi-permanent color the last months (which actually didn't do much more than Loving Care). Then finally, the permanent color with low volume peroxide. I used Penguin Cold Caps during chemo and did lose a lot of hair because it was thick, but it's completely stabilized now (growing back curly underneath where I lost it). I lose about 5 strands per wash and comb now, which I think is less than before chemo.
I had a lot of lingering joint pain, neuropathy and fatigue after chemo was over, which sucked, but it seemed to magically melt away at the 6 month mark and I'm feeling good again. So hang in there, everyone! Lucky
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Hi Everyone:
I too have neuropothy in my feet and it is 11 1/2 weeks past chemo and just did my last rad yerterday!(Hooray!!) Both my medical and radiation Onc's did not want me to take anything during treatment. Now that it is over, except for Herceptin, what do you all think has worked for you for neuropothy? I have heard that Wheat Grass works. Anything else?
Keep Positive!
Nancy
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I used B-vitamins, esp B-6, as well as L-glutamine and they did seem to help.
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I am on L-glutamine - though I heard that this ONLY helps while doing chemo, not after!
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Keeppositive - L-glutamine for sure, but look for the powder form I take 2tbs a day mixed in almond milk, once in the morning and once at night. I know people still taking it after chemo but not sure if it works after chemo
have you looked into Glucosamine/condroitin? I was taking this for joint pain before chemo
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Keep positive. I experienced nueropathy as well. I drink wheatgrass daily and take other supplements targeted for the nueropathy. I will pm u the details.
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keeppositive: For neuropathy, I iced during treatments, and also took L-Glutamine and (best of all) acupuncture. The acupuncture is *amazing*.
Hope it abates soon!
Susan
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Thank you ladies for the L-Glutamine tip, i did not know that and will def get it. I get this tingly feeling on my back goes round my abs then to my legs, i've been taking aleve.
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Mdg: Thank you! I am in Seattle. We have kept practicing and we are doing better, but I think I will need help because my husband is the best support system in the world, but he "doesn't work well under pressure and can't multitask". If I do not lose my hair during treatment, definitely my husband will take care of that with all the hair he pulls with the straps! (I do not know how he manages to attached them to my hair instead to the cap). Besides I can't stand the cold on my head! The first 5 minutes I feel a horrible sharp pain. Any advice?
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