Topic: Cold Caps Users Past and Present, to Save Hair

Dec 4, 2017 12:30PM MamaFelice wrote:

Good morning ladies! One week post TC #3 here! Finally feeling better all around, and hair on head sure makes me feel like $1,000,000 every day! Amazes me all the strands that find their way out each day-- dread my morning comb, but don't want dreadlocks-- but still hanging on strong! Hair sure does feel soft from washing so much less... May be something I try more often in the future!

Lizabeth-- Love your positive attitude! Keep that up because it is so powerful on this journey! I will be having 6 TC total, and I had #3 last week. 1/2-Way--Yay! Holidays seem to make days/weeks just fly by! I think it is great that you and your husband have WF not too far from you-- it's like making a special road trip every 3 weeks. That's how I look at my frequent hops up to Duke. I really feel blessed by the surgeon I have worked with there. Besides, my daughter is in her sophomore year of HS and it gives us time to tour a diff NC college when we head to that area. 😃 Always find a bright side!

Hmmmmm.... Hair washing.... boy do I want to wash my hair more than they suggest! I follow the PCC must wash days around chemo for sure. After that, I usually go every 5 days....or stretch because I know I'm going to take on heavy workout and really sweat on day 7 and would want to wash after. We are lucky it is winter. For me the washing thing would be much more difficult in summer or if lived in Florida where my head sweats just walking outside (I'm a Floridian for 30years pre NC).

Willow-- Always so great to hear from you! Can't believe you are Still shedding! Is there a number of weeks PFC that it typically halts or slows down?! Luckily you have such thick hair to keep up with the shedding! Have you had any trims/cuts PFC to your hair? Did you ever during? Mine is in long layers, and I'm debating having my stylist give it gentle dry 1/2" trims here and there to keep it looking full. Would love your thoughts/feedback....or anyone's on this matter would be welcome. 😌

Cat lady-- pics are fantastic and I only hope to have results as successful as yours! I know it is probably not your ideal hairdo, but your hair looks healthy and full! Pictures are always so encouraging-- thank you!

Cabland-- Speaking of pictures! What a lovely "recap" (ba da bump!) of your experience! Your husband's love for you pours out in his words! You look terrific, and I really like the twist you did in the back of your hair inplace of a ponytail. I will use such as mine thins. Thank you again, and will share your link with others in the future on this thread and other places! I've been taking oodles of pics each week to have on hand to look back on in the end - thanks again

Dec 4, 2017 07:07PM NorfolkBikerChick wrote:

I had cold cap this summer in the UK.  The nurse would wet my hair and then put loads of hair conditioner on my hair before putting the cap on.  I sat with the cap working for 30 minutes before the treatment was given and then sat for a further hour and a half after the treatment had been administered with the cap on.  I had a small amount of hair thinning on my crown that I noticed but the man in the street wouldn't have known.  I saw my mother who I haven't told and she didn't notice anything wrong.  I would thoroughly recommend going for cold cap it meant so much to me not losing my hair.

Dec 4, 2017 09:24PM Willow22 wrote:

Amelia - if you like, I can email you the cold capping hair care guide from Penguin - just send me a private message with your email address. I think most of the info is the same for using their caps and for a dignicap type machine system. Penguin and YouTube also have great videos of coldcapping if you want to see what is like.

Willow

Dec 6, 2017 12:42PM Tonir24 wrote:

I just finished round 4 of TCHP using Arctic Cold Caps, after 6 rounds I will go to just Herceptin and Perjeta. I remember them saying I could stop capping after the first 6, but Perjeta says it causes Hairloss. Did anyone quit capping during Perjeta??

Dec 6, 2017 04:44PM Travel_Girl wrote:

Amelia - I would not cut my hair, I would leave it. I would not die your roots close to chemo -- however -- others have done it. You can find ways to to cover roots with colored powder spray.

I used Dignicap - it worked and glad that I did it. I do have very thin/thin spots on my crown. I can hide it with hair powder and 'the man on the street' can't tell, I just wish I could have prevented that -- I started with thin hair - so that might be the reason. If you clinic doesn't approve you -- you can do it on your own -- rent the caps directly - make it happen - you can do this. Also, I would change a clinic if they would not let me use them. It sounds like you are motivated - you can make it happen - just don't start chemo until you have to sorted -- has to be the first one.

In the end, cold capping is a process and a commitment. You have to want to deal with it more than losing your hair (anything to help keep my hair and/or accelerate growth post chemo - was very very important to me). It isn't perfect - your hair will thin -- it won't be the same to you -- others won't know as much.

You can do this! Lots and lots of on line resources - start with Repunzel project.

Dec 8, 2017 12:25AM tigger73 wrote:

Amelia- I had excellent success with Polar Cold Caps. Polar Cold Caps sends you everything you need including a laser thermometer, cooler, electric blanket, etc. The only thing they don't send you is the dry ice. You will need approximately 80 to 100 pounds of dry ice per cold capping session. They are more reasonable to rent than the other companies I found. Plus they include elastic straps to make the caps tight on your head. I lost almost no hair while cold capping. I did 6 cycles of TCHP. Be sure to follow all the instructions and guidelines. No heat on your head. Cold water for washing hair. Paraben free shampoo. Don't wash your hair more than twice a week. Etc. Be sure to continue cold capping for 3 hours after chemo infusion is complete. Watch as many "how to" videos on cold capping as well. Good luck!!!

Dec 8, 2017 01:54AM Pambc010417 wrote:

LisbethM - I used penguin cold caps but all of my shedding was post chemo and lasted 4 months post chemo. I did not shed during cold capping, April through June 29th, but it started afterwards. No bald spots but I lost probably 40% percent in the 4 months after. No one else can really tell, except my hairdresser, but it has really thinned out. My hair was very thick. I lost a lot around my hairline but it is growing back fast. I take both biotin and biosil, trying to boost regrowth.

I talked with Shirley at Rapunzel Project and she said she started shedding after chemo too. I am thankful it stopped or slowed down in the last month. I am 5 month Pfc now. I still wash only twice a week butI did color my roots with a gentle product, Madison Reed Radiant Hair Color kit at 3.5 month Pfc. I did not notice more shedding after coloring.

Good luck!

Dec 9, 2017 12:46AM LizabethM wrote:

Travel Girl, thanks for that! When I was shedding so much, I had the same thought, if I shed this much, I will not have any hair left by the end. I do think I have lost hair in areas where the Dignicap did not cover, my husband just read that a new Dignicap is coming out next year with a better design for more coverage and more comfort with the straps.

Dec 10, 2017 02:25AM - edited Dec 10, 2017 12:54PM by red332

Dec 10, 2017 06:14PM Magari wrote:

Hi, Sunshine 6 - I am doing the same chemo as you (TCHP) and using Arctic Cold Caps. Taxotere and Carboplatin are the chemo drugs that cause hair loss, so I asked that my infusions be ordered to give those drugs first, with the Perjeta next (since hair loss is a lesser. but possible side effect from that) and the Herceptin at the end. So mine is actually TCPH. They ran my first infusion slowly, so by the time I got to the end of it I had about 3 of the 4 hours of post-chemo capping in with the drugs administered this way.

I think it would be very difficult to cold cap on your own, but I have read a couple of posts here from women who managed to do so.

Dec 13, 2017 04:15PM Travel_Girl wrote:

MamaFelice - you made me smile this morning! I can't believe your MO said you would be bald -- mine is the opposite encouraging women to consider cold capping because she says it helps so much mentally. My MO specializes in young women with cancer, we have a long history - so I am sure this has some kind of impact.

Your hair is fantastic, mine isn't that thick ever :). Even better - your big smile. And I would take the pit crew any-day -- having others at chemo with you - especially to take your mind off that freeze is so nice. If not, movies people -- movies, anything to not think about the freezing cold.

For those thinking about driving lots of hours or renting your own - if you have the help, I would say rent your own. If you don't have the help, drive, drive, drive. The reason I say this is because I think that the rental caps give you better coverage on your head and switching out the caps gives you more even coverage. Dignicaps are good - I am glad I did them - they are just a bit weak on the crown area (I have a bald spot) ... and in my non-medical opinion, don't let you keep the caps on long enough post chemo. As Lizabeth states above, Dignicap is doing a updated design -- that will be fantastic and I hope for all my future bc warriors it improves for them.

Dec 13, 2017 04:55PM Elastogelgirl wrote:

hi all,

I have a friend HER2 positive erpr negative. She wants to cap. The cancer center told her even with cold caps or not She would loose 99 percent of her hair!

Any her2 positives out there? Can relate your success fail rates?

Hugs all elastogelgirl girl

My hair now;

With a keratin smooth down for chemo curls....My hair looking is almost normal now at 8 months

I did ACT chemo and lost about 80 percent. What I had left is a great disguise over my new growth which is about 3 1/2 inches of curly now. I got highlights at 8 months and my hair is very strong.

Dec 13, 2017 05:48PM lovesgreenthings wrote:

Hello Cold Cappers!!

I am jumping online today to bring hope to all of you as you go through this process, or to encourage those who are on the fence about cold capping. Today marks 5 months post chemo for me. Yea!! (Side note, find the chemo group on BCO that corresponds with your starting month of treatment, it is a life saver for tips and support. The February 2017 Chemo group was great and we are all still in touch!)

My chemo was 4 DD AC with 12 weekly Taxol.  I used Penguin Cold caps as they had the highest success with "A" the dreaded Red Devil.  Note that I had one cooler and used 40 pounds of dry ice, not the 80 pounds they suggest. Never had an issue with the caps not being cold enough. This was less costly and much less heavy to lift in and out of the car.  Pellets are the best!! The bricks are ok but pellets work better. Picked it up the afternoon before and packed the cooler with lawn bags from Costco to keep the ice from dissipating. It worked!!

"Penguin does not promote great success with "A".  I lost about 50% of my hair, BUT, it started growing back during Taxol infusions. Day 23 is indeed the magic day for shedding to start. It is all the "old" hair that leaves, all at once.  This can continue for a week or so, at least for me it stopped pretty quickly and then I just started losing a few strands here and there.  My hair was thinner at 50% loss, but no one could tell I was in chemo and only my close friends could notice the difference, after I pointed it out to them.  It sounds like a lot, but it really is easier to cover this up than you think. This meant I could go anywhere and not get the "pity looks" and really helped keep me positive and focused on good health. I practiced yoga 3 times weekly throughout treatment without any of my classmates knowing a thing about what I was going through.  That sense of normalcy was invaluable to keeping a happy outlook for me. 

By the end of chemo, I had some thinner areas and no "volume." For that I used Topix which is so easy to sprinkle on the hair.  I did not use any volume enhancing products and followed the wash instructions to the letter. I did not cut my hair prior to cold capping. I think this is key, your hair follicles are used to the weight and a cut throws them off a bit. A trim is ok, but not a major cut.  I had trims throughout chemo as my hair continued to grow.

I used a demi-permanent dye about a month before chemo ended as it was 5.5 months of no dye by then. The cover up powders are great, but the real dye helped a lot to cover gray and also add some body. My hairdresser is a friend and she came to the house and did it, avoiding the scalp completely. NOTHING happened, no further hair loss. Since I stopped losing hair half way through chemo, I had a huge head start back to my normal hair. I have used gels to keep the curly hair tamed, pinned it up in a French twist and so on. But finally it was long enough for a cool cut and color. I ended up with a cute pageboy/bob that I can tuck behind my ears with a lot of volume on top. The hair that is still growing in there poofs everything up so it really is a MULLET look. Cool if it were the 80's. This new cut makes the poofy work. :) I had hair that was below my shoulders to start. The hair that remained was damaged from the cold capping, no way to get around that so that is why the shorter hair cut, but again, WAY ahead of starting from scratch. I have had a lot of compliments on the cut too.  

I remember when someone else came on here and shared their success AND the things they did that were not perfectly following the rules. It helped me a lot so thought I would share. Our results will all vary as our bodies are different but mostly people do very well cold capping.

For the person wondering if they can do this themselves.  It is the MediPort or IV that will be the issue, too hard and painful to be moving your body around during infusion with either of those hook ups. At least that is my opinion. Other than that, you could do it. I had a helper during infusion, we left when that was done to finish up at home and I could have easily done the rest by myself. So maybe a helper just for the actual infusion?

I am glad to discuss further if anyone has questions, feel free to PM me. Otherwise, I wish all you the best in cold capping and most importantly, in your journey of eradicating cancer. 

COLD CAPPING TIPS

An electric blanket for warmth, A heating pad to move around to parts that get cold.

Yoga pants and a stretchy top (easier to access the port) and a cardigan sweater over that.

Water bottle filled with cubes, drink constantly to get the chemo moving along. 

I ate a lot of frozen fruit bars during chemo, no mouth sores.

Kitchen timer and smart phone - I used one as a timer for a 5 minute warning, then we could check the cap for the temperature and adjust if needed. I was the timer person, my cold capper did everything else. If the caps are too cold you can sit on them to warm them up!! We took turns doing that. haha

Ibuprophen with a protein breakfast helped me stay focused and not get the "brain freeze." A sedative will make you drowsy and it is harder to manage the process that way.

The chin strap does NOT have to be tight under your chin for the whole session, just long enough to get the cap on tight. Loosen it up so you can drink and eat!

Goody makes a Wet Brush that is great for detangling hair, works better than a wide tooth comb. I washed my hair in the shower, but the water was tepid and the pressure was very gentle. 

Get a really good nights sleep before capping and it will go so much better, this is the time to take the sedative if you have them!!

Hugs to all of you, you CAN do this!! oxoxox

Anne

Dec 13, 2017 06:47PM - edited Dec 13, 2017 06:48PM by Elastogelgirl

hi all,

So my friend is considering cold capping she is her2 + er pr negative.

Advice on the best cap! She starts chemo very soon.

Also anyone who has her stats and had success or failure, please tell me so I can forward to her.

Hugs all

Elastogelgirl

Dec 13, 2017 09:04PM red332 wrote:

Elastogirl, what chemo protocol? That's the important thing. I am triple positive and doing weekly taxol + herceptin (12 weeks). I just finished treatment number 6 and have lost almost no hair so far.