Cold Caps Users Past and Present, to Save Hair

dexxy

ok ladies looks like I found somethign comfortable.  2 braids so i look like an indian princess and a scraf on top to keep the sun off plus manage the flyaways.

question, I have treatment on thursday can I was before or should I wait till after?  waiting a week scares me since that what i just did and the tangles were crazy. Advice or Opinions welcome

Sashette

So sorry to hear about your day yesterday Snoopy... Dexxy. When I had my first 'tangle episode' when washing, on the advise of ladies on the forum, I switched to Alterna Hemp Organics 'spray leave in conditioner' in the tall orange bottle, after shampooing. I had no problems with tangles after that. I do comb (wide tooth, starting from bottom) before shampoo to get out the loose hair and then again after. Re hair styles - I started out with a loose French twist style then switched to pigtails then when the pigtails showed signs of increased tangling I went to indian princess braids. I sleep w braids on top of my head. (trust me the braids look fine) I put the Deva Curl ' One Condition ' on before I apply shampoo (leaving conditioner on while I shampoo - no conditioner on roots). I also dilute the conditioner in spray bottle to hydrate hair in-between washes ( no roots). My hair is to my bra strap. I am 21 wks PFC. Almost home free. Hang in there.

one more thing... If seeing your hair in the baggie is upsetting you, put that baggie away - start a new baggie, date it and start anew... There is plenty of time to look at all the baggies in order later.

DebRox

Dexxy: pcc protocol for hair washes is no washing 3 days before or 3 days after cold cap therapy. You may want to wait until after chemo at this point. Washing tomorrow might be too soon and too stressful.



But with that said, with your protocol, you wet your hair down before digni caps. So maybe you will be ok to wash before.



Pcc users do not and should not wet their hair down prior to cold caps. I think we aren't supposed to wash so that natural oil can build up on our scalp and act as conduction for the cold.



Just my 2 cents. I believe you are the first dignicap user here.

sebm9

dexxy: No washing 3 days before/after according to the PCC protocol (which I believe to be the best).  Let us know if you do otherwise. You are the first Dignicap lady on the list that I know of.

Snoopy and others with tangling problems: I'm so sorry for the tangling! I'm not sure I can explain it. I tangle a little regularly, but had no extra tangling with PCCs and the weekly hairwash. I used to wash daily so always looked forward to the 1x/week wash. I'm so sorry for you ladies who are dreading it! It's important to keep your scalp and hair clean and in good condition, to be healthy. Just stroke the soapy water through your hair rather than agitate it. It's okay to comb it before/after your wash, daily, etc -- just no brushing or hard pulling. Be comfortable with the fact that you will shed some hairs through all this, but just be gentle, but don't let it get unmanageable. I can't explain what happend to you Snoopy! No doubt the shorter hair will actually make it easier to manage in future treatments. It could be that your hair (permed) reacted to the cold and to the Burt's Bees product and it was a "perfect storm" for tangles. Here's to a new start and -- trust me -- your hair will grow throughout chemo and beyond.

Btw, I used Trader Joe's Nourish Spa shampoo and conditioner before, during, after chemo (my regular stuff). When I washed, I stroked the shampoo/water through the hair shaft lengthwise but didn't agitate. I rinsed thoroughly, lifting the hair in small sections to rinse underneath, then applied conditioner. I basically used my fingertips and pressure but did not use the type of circular motion I used previously when washing my hair. While the conditioner worked through I cleansed the rest of my body, then returned to my hair to rinse the conditioner -- working the conditioner out with a pick-type comb, just combing straight out and lifting, but no circular motions. Always cold water. Never had any tangles this way (and I nearly always have a little tangle somewhere). 

I had a hair trim today -- my haircutter hadn't seen me in several months and this was the first time she'd seen my SuperCurl self.  She couldn't believe it! I have 6' corkskrews for bangs (above one ear and at the nape), lots of curly hairs (formerly wavey hairs) and some dried ends from chemo. So we played with it awhile and came up with something temporary and workable while the super-fast-growing new growth catches up to the old growth. If I'd lost all my hair I'd have a head full of corkscrew curls right now! Even with styling and product and my motorcycle helmet (cuz it was a great day for a motorcycle ride) my huge curls sprung from my head. It's temporary, so I enjoy it, and am glad I have hair all over! People keep telling me how beautiful the curls are, esp. people who know me well and have followed my cancer and PCC journey. My mom was just visiting -- first time since I'd started chemo -- and couldn't believe my "baby curls".

I forget who asked (sorry): my leg and other hair sometimes tried to grow between chemos, but not much. I maybe shaved my legs once between chemos. Now (a year out) it comes in faster than ever before and I pretty much shave smooth every day. I didn't shave under the treatment-side of my underarm for almost a year, interestingly. There was a time when I'd have been annoyed by daily leg shaving, but I'm glad my body is healthy and productive. Keep your eyes on the prize!

xo to all

Susan 

p.s.: the baggies: that's something I started way back, but if it upsets you, put it away and stop collecting it! It's just something I did because it worked for me. Everybody is different, and everybody will have different things that do/don't work for you. You will find your own way! 

serenitywisdom

Hi Susan and everyone,

Very cool that you have curls AND  the older hair.  I am 2 weeks post final infusion and don't see any new hair growth but I know it must be there cause I have blackish grey roots.  This final  infusion impacted me more than the others with  more anemia and low white blood cell count.  I get out of breath when walking for awhile but but they tell me that will change.  Having lots of taxo tears which is annoying.  Not much shedding but who knows and I continue to be gentle with my very dry hair.  .  I wanted to share the information Geralyn sent me in case some of you have not seen it.  FAQ's  after you finish.  For those of you in the midst of the chemo treatments, there is light at the end of the tunnel!!   It ended up going faster than I thought it would and now I just have to deal with herceptin infusions for another 7 months.  But no caps needed for that.

  Here are the FAQ's. I got from Geralyn (PCC)  for those who have FINISHED USING THE CAPS

Q. How long do I continue with the limited hair washing?

A. Three days after chemotherapy it is recommended to wash your hair
and a total of twice per week. After chemotherapy treatment has
completed (4 - 6 sessions) please try to limit hair washing to two
times per week for a least one month.

Q. How long until I can use a hair dryer ?

A. You can blow dry your hair with cold air but not with heat mode.
Exception - if you have long hair you can use heat on the long
lengths, but NO direct heat to the scalp.

Q. How long until I can color?

A. At least 3 months depending on the condition of your hair. You then
can color your hair using vegetable coloring but no peroxide or
ammonia based coloring.

Q. How long until I can get it trimmed or cut after completing all my
chemotherapy sessions?

A. You can trim your hair a little at a time after one month.

Q. How long does the follicle continue to be fragile after all the
treatment is complete?

A. At least six months.

Q. When can I go back to using my normal deodorant/antiperspirant?

A. It is not recommended that you use deodorant with Aluminium as an
ingredient.

Q. Can I get my hair wet in the shower? Can I stand under a rain
shower faucet in my shower?

A. It is best to use a wall shower head, where the water is not
falling direct onto your scalp - only allow water no hotter than body
temperature to be gently applied to the scalp - no high pressure
showers to the scalp.

Q. Can I wear it in a ponytail?

A. Not advisable.

Q. What about clips to keep it out of my face or put it up?

A. Yes, avoid putting too much strain on an individual patch of hair.

A NOTE ON HAIR SHEDDING

Hair shedding is normal; Cold Cap Therapy works by protecting the
young to medium hair follicle bulbs against the chemotherapeutic drugs
. The chemotherapeutic drugs accelerate old hair follicles to shed
early, thus hair shedding (plus natural hair shedding occurs). Please
also remember everybody's metabolism is different, so hair shedding
can happen at different times.

Hugs to all,

Connie

brca1babe

As I posted before, I have lost most of my hair at the crown and near my part.  I will wear a wide headband/scarf to cover the top for now and then see what happens.  I have DD AC#3 on Wed and if I lose more, I will have to go to a wig.

 But interesting thing... my husband noticed a tiny bit of stubble at the bald area at the crown... That is enouraging.  So I will continue the caps because maybe they will protect those hairs and even where I have had complete loss it will grow back quicker.

Just a thought!

Ralsper

Thanks to all your tips, after practicing for a week, my first "Real Cold Cap" experience was successful (special thanks to Sashette and her husband who were so kind to meet with us and provide "The Cold Caps 101" at Starbucks. I am happy to report that Sashette's hair looks amazing, and she has the most beautiful eyebrows and lashes!) In the end, on my first AC, I took Advil 30 minutes before and with all the drugs I don't remember if I felt any pain. We were able to achieve the right temperature, avoided pulling my hair with the straps, made each exchange on time, and did not have any  frozen part (I wear bangs so I really did not have any part) I used the extra Cold Head bands to cover the hair on my neck and my sides. I brought a peace of thin silk to wear in case the Cold Caps were too cold, but I did not have to wear it. The week before chemo, every day I collected the hair I lost in snack bags, so I am happy to report that my hair lose has not increased since chemo. Let's continue hoping for the best and visualize me after 4 A/C and 12 Taxol treatments with hair. Thank you again!

dexxy

just had 2 more dreads so you an imagine the tangles.  anyone have an opinion on jojoba oil?  it suppose to promote growth along with moisture and detangler.  Any thoughts?  I know other women have had  problems with the Moroccan oil

taniak

I haven't posted much, but have been an active snooper here over the past couple of months.  I finished TCx4 last week and can report very good success with the caps.  Had the shed, and continue to have the shed, but I have hair and no one can really tell. I want to to thank everyone for the support on this forum!

I was very "naughty" a couple of weeks ago and had a real haircut.  Not a tiny trim, a cut.  Got rid of those fried, straggly ends plus another couple of inches.  I figured what was the point of having hair if it looked that crappy?  So far I have not noticed any adverse effects from the cut, and in fact, going back to the PCC and other cold cap websites they don't say not to.  Shorter hair looks and feels so much better and really diminishes the thinning. Just my two cents.

I was a bit hesitant and doubting about this technology, but I am so glad that I did it.  Thanks again and hoping success for those starting out and going through it!  I will continue to look in and see how everyone is doing.  If there is anyone in the SF Bay Area about to start and needs all the tools (coolers, thermometer, gloves, etc.) just let me know. 

sebm9

serenitywisdom: you are out of breath because your red cells are lower in oxygen; it's counterintuitive, but if you walk a little bit more, you will feel *better*. Really! It works. Even a little bit of movement will oxygenate all your cells and they will improve, and you'll feel better. The red cell drop is the one that is the most cumulative; following my last chemo, I had that breathlessness and had very sore/tired quads (upper thighs). I made myself walk it off; it lasted a few weeks then one day I noticed I was going uphill, so to speak, again.

taniak: congratulations! I may have several folks in the SF bay area about to start including a friend at work; I can take the coolers etc. from you and store them in my garage to hand them to the next woman, if you like (but Frank is pretty good about hooking folks up with each other and may be able to advise).

Btw, I had an appt. with my obgyn this morning, and now she too recommends PCCs to patients. So, officially, all of my doctors -- even my non-oncological doctors -- recommend PCCs.

dexxy: I swear by Trader Joe's  Nourish Spa conditioner. I have fairly tangly, curly hair always, including during chemo and PFC, but I just apply this, let it sit for a few minutes, then comb it out and rinse. Tangle-free. It's even more valuable now that I have even curlier, thicker hair than before chemo (and it makes my head hot, too!).

Cheers to all,

Susan 

serenitywisdom

Dear Susan and everyone,

I know  you are right about the pain in legs that will actually go away once you do a bit of exercise.  That has happened to me.    It is just hard to get going and being otu of breath is a challenge at first.  .  Tomorrow I will attempt the YMCA again.  In the SF bay area, there is a free program for those with cancer,  Feel better, feel stronger that is run by the YMCA at different locations.  Very good.  Any suggestions on very dry hair, post chemo and caps.  Should we just use creme rinse or would a condtioner be ok  in the first few weeks after finishing chemo?  

Unknown

I would avoid any kind of oil.  It can heat up with body temp.  The only bald spot I have is where I put vaseline to soothe frost bite.

Snoopy73

Hi ladies; any advise on what to put on bald spot to stimulate hair growth? I have one bald spot that starts a little bit at the far front near my right ear, its on the side in front so kinda annoying:-( is there anything i can put to stimulate growth? Thank you.

brca1babe

to stimulate growth, some try Biotin but most MOs say not supplements during chemo.  Frank also recommends Silica.  I am not sure if it stimulates growth or makes hair stronger though.

Other ladies (not PCC users) have tried Nioxin after chemo and they say it helps.

Snoopy73

Thanks brca1babe - I started using silica. Will do some research on Nioxin.

nmoss1000

Hi Snoopy Nioxin has Sodium Lauryl Sulfate and will dry and tangle your hair. Permed hair and SLS is a bad mix especially during chemo. I took Biotin and it helped but I worried more about keeping what I had instead of growing new hair,since I new during chemo that was a long shot. I had bald patches and was lucky enough that a ponytail would hide them. Good Luck! Look up the Hair Rules System.

Snoopy73

Thanks nmoss100; I still have a head full of hair (back short though and front long with a thick grwoth), the bald spot is on the side of my right ear (its like a U shaped) not completely bald but a hugs amout of hair is missing. I have started using Silica, maybe i should stick to that for now:-) Thanks all.

dexxy

Snoopy-glad you are doing better

Snoopy73

Thanks Dexxy; just trying to stay positive:-) Thurs is the D-Day for you too right?:-) All the Best.

dexxy

Snoopy-thursday yep, lets get it over with.  By the way I just went upstairs and cut off 6 inches.  I know I'm not suppose to but the weight and tangles just wouldn't stop.  It feels like a ton of brick was lifted from my scalp. Lets now just pray I can keep what is left

Ladies:Cheers to DebRox! today is her last treatment!! Raise your arms in the air like you just dont care!! WoooHooo!

Snoopy73

YAAAYYY DebRox!!! Sending you hugs and wishing you a smooth, shed-free:-) PFC.

Dexxy - I hear you about the weight & tangles:-) I am hoping the caps will still work on my so short back hair:-) Looking forward to seeing my sister who is arriving tonight from Toronto to be with me on my #2. Lets go and kick this"bugger" off LOL......

Ang7

You go DebRox!!!

I am doing a penguin march for you...

arlenea

Hi all:

Well, I passed the 2 month PFC yesterday and I can't believe how much shedding is taking place.  More than during chemo, except for after the first treatment.  Did my weekly shampoo last night and still using the cold water but tons of shedding.  Sure hope it slows down soon.  I think I too need a haircut of at least 2-3 inches.  My hair has grown so much that it is below my bra line.  Wondering if the Herceptin has more of an impact than I thought.  I've had to cut my bangs a few times or I wouldn't be able to see.

HOORAY DebRox.  Congrats on finishing...good feeling isn't it.

Arlene

DebRox

Thank you so much fellow Cold Cappers!! I'm done and doing the PFC happy dance. Just removed that last cap 15 minutes ago! Yep I'm officially 4 hours and 15 minutes PFC!



Girls it's doable! Takes faith, perseverance, determination, great helpers and vicodin!

Lmflynn

DebRox~ yippee!! CONGRATS. Sure you've read it's a process... But 6 months PFC you'll be amazed at how well and back to "normal" you feel! I do think that having to go thru a year of growing your hair just prolongs the experience... I feel and understand the " badge" and "honor" of chemo.... But I am so BLESSED that I found the PCCs....I am 100% back at work and cannot wait to get my exchange..... My normal has so very much helped me....

Julia1969

Yeah DebRox!   You did it and you're going to be fine.  Today is a new day.

Fellow Cold Cappers-  We lost a friend who had leukemia last week.  She was doing well with chemo, but made the mistake of going to the symphony at the wrong time.  She got pneumonia and died.  Take care of yourselves while your white count is down after chemo.  If you must venture out, use the hand gel and wipe surfaces and even use a mask if you're in a crowded situation.  Take care friends.  

keeppositive

Congratulation to DebRox!! See, it really is doable and it has an end date!!! When we start, it seems like an ordeal that will never end, but it does!! The caps make chemo so much more bearable. Thank you Frank!!!

To everyone with tangles and shedding, don't use anything on your hair or scalp without checking with Frank or his associates. Don't ingest anything without checking with your Dr. Our hair is really just hanging on by a "thread" so keep up the protocol for 6 mos past chemo, another thing that is doable. After 1 month you can get a small trim and after 2 mos. a cut and  I think you can color with non chemical and non ammonia coloring. Someone posted the protocol for after the cap hair treatment on the page before this or maybe 2 pages ago. I also posted it about a month or two ago. Its a small list and worth the effort, after all we've done to keep our hair.

Keep Positive!

Nancy

sebm9

serenitywisdom: I used moisturizing conditioner on my hair throughout chemo, every time I shampooed plus occasionally on the ends and dry part of shaft in the late chemo, even without shampoo. It worked very well for me (not perfect, I still have some dry hair, but it was always soft right after I moisturized). I used Trader Joe's Nourish Spa conditioner -- lots of botanicals, none of the icky stuff. It's a great conditioner and a wonderful detangler. And inexpensive, to boot! And smells great, just great.

Congratulations DebRox!!! Time for the Penguinista walk!

Susan 

LivCar

Congrats Deb!  Glad that you're done!

mdg

Hi ladies...so much going kn here to catch up on.



Debrox- CONGRATS!! That is awesome. You habe come so far since we chatted before chemo. You are now such an inspiration to so many other ladies!



Snoopy- so glad to hear such a positive tone in your posts despite everything. I had lost hair at my temple on the right

once it started growing again it was not noticeable in about two weeks. Now you can not really notice it.unless I point it.out. Hang in there.....you will.be done before you know it.



I am 11 weeks pfc. I will post a photo soon...I will wash on Sat for my son's 5th birthday party and have DH take a photo. I am still shedding so I can't wear it down often. I ponytail loose or clip it up. I am air drying still. Much easier in summer and the humidity helps my wavy hair look fuller. I told someone yesterday that I had chemo and she sais "you kept your hair!". I also had a follow appt with my PS for my exchange surgery a few weeks ago. I had just as many people coming in to.see my hair as my foobs! I delivered PCC brochures and they were excited about it!