Cold Caps Users Past and Present, to Save Hair

shipsgirl

Does anyone have any experience with Sentinel hair vitamins and minerals?  My friend uses them and is very happy with them.  Just wondered if they worked post chemo

AmyQ

jc254

I have to start Femara in a week and never heard that hair loss is a possible side effect. Yikes, something else to worry about. I'm going to do some research but I hope after all the time and expense of CC's I'm not defeated by my hormone blocker which I'll be on for 5+ years. 

hope49

Hi JC and Amy, I have been on Tamoxifen -which also has thinning hair as a SE- for about 2 months...haven't noticed any more shedding than before. I'm just 4 mos pfc now and so each day looking forward to that 4-6 month mark when most seem to see shedding stop.



Someone earlier had a question about the Claritin (Shipsgirl?)....I don't recall seeing a response. You want to take regular vs D, to help with bone pain from the Neulasta shot. I recommend a couple days before and 5days after.

kaydeesmiles

Thank u hope49. That was me asking about the Claritin. I picked up "d " but I'll get the regular one. The five days after tip is a big help.

fab1

Hi girls

Day 16 after 1st chemo and had major shedding clumps coming out as I brushed ny hair. It freaked me out I stopped brushing for fear of all hair coming out. I will perserver with capping. I will pray for myself and all you girls that shredding subsides!!! What a fxxxing journey.

:-D xxx

Laura5133388

fab1, I was instructed to use a very wide tooth comb, never a brush, during treatment.

schoolmom

I never brushed. In fact I used my fingers for months to detangle and fluff. I still just use a wide toothed pick.

fab1

Oh my god I wish I knew not to brush, I think I brush half my hair . I will nit brush fir tge remainder of Chemo . I have very very curly hair so nit sure how I will fair. Xxx:-D

shipsgirl

Hang in there fab1.  Just remember to treat your hair very gently in all things.  It is fragile right now. 

As I've said before, getting to the end with even a little hair is better than the alternative.  And believe it or not, you'll be at the end before you know it.

fab1

Thank you shipgirl!

With only just 1 chemo down, it feels like an age before I cross the finishing line on the 18 October. Then radiation for 3 weeks.

thank you fir your encourgement! Know others have walked before me and got to the other end really helps xx 

shipsgirl

This is what I wore to the store the other day.  I didn't notice a thing until I got home.  I'm blaming chemo brain!!

http://www.flickr.com/photos/98967371@N05/9314117863/

Sorry for the link; I don't know how to make a pic appear here.

Fab1 - I know it seems like a long journey, but just keep putting one foot in front of the other, and you'll be there before you know it. 

My advice is don't panic.  You will keep your hair, lose it, or something in between.  You're doing everything you can to keep it and the rest is out of your hands.  It takes strength just to do chemo and to add capping to that shows that you are a woman of courage and perserverance.  We all are.  This experience will definitely not leave you where it found you.

m1970

Shipsgirl, thanks for the laugh! I once wore a blue and black shoe to work, no chemo to blame either.

fab1

Hi shipgirl

Thank you for your kind words and the picture really made me giggle!!! I once went to work with my wirk suit inside workout!!! Did not notice till some pointed it out to me!!! :-S

dancetrancer

Shipsgirl, that pic is too funny!  Ha! 

I am very impressed at your attitude and am so happy you are here to share with newbies!  It is best to be prepared for any outcome, knowing you did your best and then dealing with whatever life hands you.  If anything, cancer has taught me how to roll with the punches better.  

fab1

Morning girls,

Its wonderfully sunny here in London, day 17 past 1st chemo, another major shedding two handfuls of hair. At this rate I do not think I will be one of the lucky ones to keep hair but I pray daily shedding will subside!!!

Chemo number 2 of 6 will be on 26 July. Did upi girls find subsequent sessions similar to chemo 1? Or do things get worse?

Xxx hugs to all you fellow warriors!  

Laura5133388

fab1, Are you using Penguin cold caps?

Hortense

fab1 - shedding generally starts about the 18th day after the first chemo infusion and usually is greatest just after the second infusion until the third. That is because the oldest weakest hairs are giving up and start to slide off. Try not to panic as they do grow back after their normal period of rest.

Just when I was almost certain mine would never grow back - that was about two months after my final chemo, I noticed an army of 1/2" new hairs coming in between the hair I had been able to save by using cold caps. The rest of my hair had continued to grow all throughout chemo and I had the long natural colored roots in stark contrast to my blonde lightened roots to prove it.

Hair is extremely fragile during chemo, meaning follicles take quite a hit from the chemicals and without cold caps would let go of all their hairs causing complete baldness. That is why we are told to treat our hair delicately: patting on organic shampoo and conditioner, using cool to cold water to gently rinse - no high power sprays or showers, and gingerly combing it starting at the bottom and working up gently as tangles are worked out. Any pulling or tension can dislodge hairs that might have stayed, so no brushing the normal way, no pony tail holders, head bands or clips  that pull at roots either. And, be careful with hats, some can pull hairs out.

Basically be very vigilant about anything that can tug at your hair roots and avoid it.

Most of us were told to use a wide toothed comb. I found that didn't work for me. Mine pulled out too much hair when I used any of them, so I began using what I call a "wet hair" brush which is plastic and has individual plastic bristles set about 1/4" apart, so widely apart. I would start at the ends of my long hair and slowly, cautiously start using the brush almost as a comb by just using the first row or rows on the narrow end. I would work my way up gently until each area was snarl free. It works on dry hair as well as wet hair. I still use it to brush through my hair after washing it as it does such a good job.

Kaydee - I am so sorry I didn't answer your question about taking Claritin right away. I meant to check my notes and get back to you, then didn't. 

I was told to take regular Claritin - not Claritin D - the day before my infusions, again the day of infusion and for about five days afterwards. I ended up cutting it by a few days if I had no aches just to stop taking any unneeded pills. In fact, I never had any aches, so perhaps Claratin worked.

Good luck Ladies!

fab1

Hi yes but not much luck with them so far, im dreading tge rest if chemo now!

PatinMN

fab1 - how long are you wearing the cold caps after the end of chemo infusion?  Here in the U.S. most of us were told to wear them for an additional 4 hours, but I know when I watched the video on the Penguin website it said 2 hours.  If you're doing a shorter period, maybe you could add some time to your post-chemo capping.  Good luck!

curly123

shipsgirl - thanks for the giggle! You are too cute!



hortense - thanks for sharing. Very helpful info.



Just wondering what you ladies did with shampoo. I thought I was told to water it down - put a little shampoo and mix with a lot of water before washing. Now that my head is so dirty and I can't stand it, i am wondering if i need to water down the shampoo so much. What are you all doing? I am afraid to do anything to make things worse.



thanks!

curly

curly123

fab 1 - hang in there. You are in the worst period for shedding, like everyone says. it will slow down. I, too, have curly hair. Like schoolmom, I comb it with my fingers to minimize the pull on it. If there are big tangles, I use a pic to get through them. I comb it through with a pic on wash days. You do have to make sure that tangles are kept to a minimum or they will stick to other good hairs and pull them out. I remember between tx 1 and 2 I had a couple of really big "dreadlocks" full of tangles, and that's when most of the really big shedding happened. You will get through it.



curly

fab1

Hi

Here in London they nurses have me on it for 1.30hrs only. I will try to get them to let me cap for longer next session. Do you think test its to late for me? Has tge damages been done as its only day 17 and I have shed heavily! I'm affraid to touch ny hair for fear of more lose. I can only pray now and leave it to god!

PatinMN

fab1, I would guess that the 1-1/2 hours vs. 4 hours is contributing to your bad shedding.  I would ask them for a minimum of 3 hours for your future treatments.  Unfortunately I don't think there is any definitive research on the optimal length of time for post-chemo capping.  But 1-1/2 hours is way less than we have been doing here in the States. 

shipsgirl

fab1 - only time will tell, but don't stop the caps now.  Just keep going.  Most people without caps lose nearly all their hair from day 14 to day 20.  While there is hair, there is hope. 

It sounds like you need longer cap time. Also, how early before infusion do you start the caps?  That is important too. 

curly123

Another question ladies - when did the pfc'ers start using naturtint/colormark or anything else to cover the roots? The white hairs are something else! But I am glad they are there!



thanks again,

curly

PatinMN

Curly, I used Clairol Beautiful Collection hair color (no ammonia, no peroxide, but not a "vegetable" dye as suggested by Penguin) at 7 weeks PFC.  But I had almost no shedding.  I would have waited longer if I had been shedding.  The first time I used it (I had my usual color person at the salon apply it for me) I didn't sit under the dryer because I was so afraid of heating up my follicles.  It didn't "take" very well, although it did help with my gray roots.  I used it again about 4 weeks later, and sat under the dryer that time - it worked much better.  After that I went back to my normal color product used at my salon. 

I used Colormark on my roots during chemo and until I started with overall color.  The Colormark is sort of like a mascara wand that you paint on your roots, or there's another Colormark that's more like a thick magic marker.  They helped tone down the gray at my part line a little.  But when your gray roots are over 2 inches long it's tough to cover them with something like that!

jc254

Curly, I'm using the Colormark "magic marker" at 4 weeks PFC.  It does a decent job of hiding the roots at my part line but it washes out so you have to reapply every time you wash.  I'm still shedding fairly heavily so looks like I'll have to wait a while longer to use something that does a better job.  What I really miss is my anti frizz products.  In this heat and humidity my hair goes crazy and combined with the gray, its not my best look.  Not complaining though, I'll take gray and frizzy over the alternative. 

SusieQ_inCA

curly, I used ColorMark (wand at first, then the magic marker toward the end)  At 4 weeks PFC I started using Clariol Beautiful.  It washes out after a couple of weeks but it lasts longer than ColorMark.  I was terrified to do it but saw no issues from using it.  I've done it twice and I'm now at 6 weeks PFC.  Good luck!

curly123

Thanks ladies for chiming in! I definitely don't have enough hair to risk a proper colour...I will try the colormark for a little grey relief.



thanks. have a nice weekend.



We are under a tornado watch..ugh! That never happens in Toronto!



curly

shipsgirl

Tornado watch??? Wow.  Be safe Torontonians.