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

Jan 5, 2018 02:14PM Shay76 wrote:

hello Shlomit,

I believe both pax and digni are found in some infusion centers. I had none of those by me so I rent artic cold caps. Nurses at infusion sites typically will not change your caps, you need to bring someone with you. My husband does mine. We practiced the the night before, and it is easy now for him ( we are on taxol #4). They may look intimidating at first, but he got the hang of it quickly.

Jan 5, 2018 06:30PM PatinMN wrote:

Shlomit - here is a link to locations that have a Dignicap or Paxman machine available, or a medical freezer (to use with the Penguin caps or other caps that require manual application). Maybe there is one available near you and you could switch infusion sites. http://www.rapunzelproject.org/ColdCaps/Locations....

I am single too, but I was lucky enough to have two retired friends who came with me to most of my 12 infusions, plus a couple others who came once or twice, plus a very experienced person who actually is in charge of Penguin rentals for this area, who taught my helpers and filled in when one was not available (for a fee, of course - it's her business). I don't really have any great ideas for you, unless you could put the word out on social media that you need helpers. Or if anyone has cold capped at your facility before, could your facility put you in touch to see if the cold "cappees" or their helpers could work with you?

Erob, I have been keeping up with this thread since my treatment days in 2012, and I don't recall anyone dealing with post-partum hair loss in addition to capping. Are you still losing hair? If not, I would think whatever you have left would stick around at the "normal" rate for people getting taxotere and carboplatin.

Jan 5, 2018 11:24PM Shlomit wrote:

And, just like that, a very, very, very dear friend who is semi-retired has stepped up and volunteered (at least for the first 3 treatments, possibly the 4th if it's scheduled before she leaves for a planned trip to the Far East).  Now I just have to do some more homework to decide on which of the cold cap options to go with.  Thanks for your ideas and support.  I'm sure I'll have more questions on other threads as the journey progresses. 

Jan 6, 2018 08:20AM MamaFelice wrote:

Shlomit-- sorry to hear you are joining our sisterhood, but when it comes to capping assistance, you are on the right thread! The women here have guided me through this process and offered so much support and love....priceless!

On 12/19 i finished 4 TC (Taxotere & Cytoxan)-- same drug cocktail you will be receiving-- and had great success capping thus far, as I still have to receive 2 more infusions.... but since you are receiving 4 I will relate from here. I used PCC, and my husband has been my capping maestro. With PCC, you definitely need a point person. We have had an additional friend helper join too at the hospital just to take assistance load off of me-- mainly because I had my hands and feet on ice during Taxotere. My husband says he would pay this experience forward and volunteer to help anyone with their capping that needed it-- like PatinMN mentioned about asking your hospital if there are any previous "cappees" that may be willing to be of assistance. The challenge is the amount of time because it begins over an hour before infusion and continues for 4 hours past completion. A lot to ask of one friend-- but I have had several incredible long-time friends as well as family members that have flown in to assist with capping and care for my family while I recovered and rested. Anyone that would be willing to help in that capacity?

Again, I used PCC with great success.... if you across back last several pages you will see my pics I post right before each infusion. My friend used Arctic Cold Capd for 6 infusions of TCHP, and found them much easier to use than PCC, and had great results after 4 infusions. I think with 4 TC, you will have great results no matter which cap you choose-- you just have to follow instructions and protocol to a T!

Please continue to ask questions as you navigate through your decisions. I have #5 coming up on Tuesday so will be posting on Monday my hair stats and pics again. Good luck and we are here for you! ☺️

Jan 6, 2018 08:22PM Shlomit wrote:

MamaFelice, what an inspirational post! Thank you for taking the time to share your experience with me/us.

I watched the Penguin video the other day, and while the inventor (or whoever the speaker was) wasn't the most exciting of personalities, I have to say it appeared to be very complicated with a lot of opportunities to miss spots in terms of getting it snug enough.  I started looking at the other caps listed on the Rapunzel Project page, and will spend time today and tomorrow exploring any other demo videos that are posted. I will also forward the links to my friend who has so generously volunteered to help. Depending on when I actually schedule my first treatment, my friend should be available for at least 3 of the treatments, if not all 4, before she leaves the country on a previously scheduled sojourn. That will give me time to scout around for someone for the 4th treatment, if needed, and then hopefully bring in #4 to learn/assist on the 3rd treatment. What's so encouraging is to read your experience, and others like Pam's, which makes me believe that the effort will be worthwhile. 

If you don't mind my asking, why did you have your hands and feet on ice during your Taxotere treatment? Was the Taxotere infused separately from the Cytoxan? 

Again, many thanks!! :)

Jan 6, 2018 10:09PM - edited Jan 6, 2018 10:16PM by Pamela23

Shlomit, I was on your regimen last year and it is necessary to have someone go with you to use the Penguin System. It's a long day, the cap goes on 50 min before infusion, then the hours of infusion itself, then another couple hours afterwards. I'm so happy you found someone to help. It's more clockwork than anything like getting it prepped and at a certain temperature every 20-25 min and helping with the positioning and straps, is their job all day.

Pambc--you look amazing! I'm almost 1 year PFC--is that possible??!! I should probably update my pic since I lost most of my hair throughout the year. My once bra strap length hair is now above my shoulders and 80% of it is 4 inches long. I never went bald and the shed was absolutely unnoticeable after 5 months (I posted on the the before/after sight in May) yet each month I look in the mirror, I have less of my long hair. I also lost my lashes 3 times, yes 3!! At 3 months PFC, 6 months, and again at 9 months. I never went completely bald lidded like the first time, there were tiny lashes underneath coming through. I hope I'm done with that! They do grow in fast-about 4 weeks afterwards and I use Latisse which makes them amazing when I do have them. Also, my new hair is amazingly thick! I forgot how thick it before. Just wish it grew faster!

Jan 7, 2018 04:45PM Erob321 wrote:

patinmn, my postpartum hair loss seems to be getting less and less, but I still find stray hairs everywhere! I’m also having another worry... my 4 month old pulling my hair! She only started doing that a few days ago, but I’m so worried each time she will pull it my hair will fall out. It would be ok if I could pull back my hair, but I’ve been told not to pull back hair while cold capping. Maybe I’ll just do a loose, low pony tail.

Jan 7, 2018 06:58PM MamaFelice wrote:

Forgot to mention-- my brows and lashes are totally thinning. Becoming a pro at drawing in the brows! 😎

Jan 7, 2018 08:07PM LizabethM wrote:

Good evening cold cappers,

MamaFelice-your hair looks amazing!! I am praying that you have a good #5 on Tuesday. I will also be glad to see January come to an end! My 4th, and final TC is January 17th.

Magari~hang in there! I thinned A LOT on top. It all happened around infusion #2 but it stopped. Last week, I took a mixture of olive oil and coconut oil and spread it all over my scalp and my hair doesn't feel as dry. I slept that way and then washed it out the next day. My scalp stopped itching! And, I have read that olive oil is great for follicles and hair growth. Don't be discouraged with how much hair you have, I have noticed tiny hairs re-growing around my face. So, I do think hair starts to re-grow during chemo. It seems like everyone has some sort of shed around 18-25 days from the first chemo. Hang in there!

Pam~you look fantastic! I love it when someone who has cold caps comes back to share your experience! It means a lot!

I've got one more infusion to go on January 17th and then I'm ringing that bell! I have been taking B12 (liquid), B6 and glutamine. I have not had any neuropathy and hopefully I can escape this last time as well. Also, for those of you starting out with cold capping, that "ice cream" headache can be pretty horrible, but this last time, I took 4 advil about 30 mins prior and then held a warm towel up to my face and it was not bad! The first two times, I cried. But, take something 30 mins before-it seriously helps!

Jan 8, 2018 05:11PM LizabethM wrote:

I use Brian Joseph's and it is working so far. A friend of mine who had bc last year told me about it and she did not lose her lashes or brows.

Jan 8, 2018 05:44PM Willow22 wrote:

hi ladies, love the photos - you guys are proof cold capping works!

Lizabeth and Shlomit, whatever you decide to do about lashes and brows, remember to continue for at least 2 or 3 months PFC. I had 4 rounds of TC and didn't use anything on brows/lashes. I did not lose lashes till after I was completely done with all my treatments (October), which I think is very common for TC. If I remember right, there was an awkward 4-6 weeks of no lashes, but they are already filling in nicely now. My brows thinned a bit starting around my last treatment, but did so fairly evenly so they could be easily touched up with a pencil.

Good luck!

Willow

Jan 9, 2018 08:29AM Vivianlu8 wrote:

Hi girls it's been quite time I haven't written in this thread. I finished chemo 3 months ago. I am trying to move forward. For the newbies, keep going it is worth it. I lost 50 % of my long hair because i washed it in a sink the day 20 and it got so tangled like a nest that i couldn't do anything to save it. But i didn't lose the rest so it was good, i style it with a pony tail all the time and when i go out i wear halo extensions. That makes me feel like i used to be. The people that doesn't know they don't notice that.

The hair is growing fast. I am taking Biotin 10 000 mg. And I still wash it 2 times per week. I dyed for the first time last week with revlon without amonia. It was ok. I used eyelashes extensions all the time since last week. Now i have eyelashes but short. Every night i put castor oil on my eyebrows and eyelashes. My best tips for the newbies are:

Don't cut your hair. Don't comb it everyday only before washing it. Don't wash it on a sink.

Good luck! It is hard but it is worth it.

Jan 9, 2018 09:29PM Fastgirl wrote:

NLH--I had the same treatment as you--12 weekly taxols and herceptin every three weeks for a year. Used Penguin. Great success. Very little hair loss during treatment (I saved the hair in baggies each week--lost a little more after about 3 weeks, then was consistent, with about 20% increase for 6 weeks or so after taxol stopped). All in all, I probably lost 10%? I am about 8 months after taxol ended, and my hair is thicker than it was before I started the chemo. Good luck

Jan 9, 2018 11:47PM Cali58 wrote:

Magari - I, like you, had oily scalp before chemo and developed seborrehic dermatitis during chemo. I also started using a topical lotion, as well as Nizoral 2% PFC. I recently found a very good shampoo and my scalp feels great a soothed after I wash my hair. I bought it at Costco online. The name is “purad’or Advanced Therapy Shampoo”. There is also a “purad’or Advanced Therapy Conditioner.” It’s supposed to reduce hair thinning. It really helped my seborrehic dermatitis and it’s 80% organic..

Jan 11, 2018 03:18AM Amelia01 wrote:

hi all, I'm 8 days post chemo and waiting to see what happens to my hair. So far so good. When can I expect the first shedding to happen? When I was given my tx plan, the cold-hearted evil doctor just matter of fact stated, and on day x all your hair will fall out. I was in such a state of shock I don't recall which is day x, 15? 20?

What I do see on my head, is the most godawful wiry grey hairs sprouting around my part. I had a light ammonia-free color rinse done before xmas and it didn't make it past the first wash. My MO under her breath spoke of some vegetable natural coloring that "could" be ok, but she didn't want to promote the painting of anything on my scalp. Has anyone tried any of the otc powders? I have dark blond hair but boy those grey/white ones stick out and don't look blond at all.

From what I've read Taxol / Taxotere can or can not have the same effect as AC/EC on hair (confusing). In fact Taxol has caused permanent hair loss in some people! Is anyone doing cold capping once a week for 12 weeks? I figure the 4 txs can be dealt with as whole day affairs, but weekly?... ok, add that to the long list of utter inconveniences this journey has dealt.

Vivianlu8 - why not brush hair? I thought we were supposed to brush everyday (lightly) in order to avoid tangles that would then have to be ripped away with hard brushing?

My husband keeps lightly pulling on my hair in these past days. His excuse is that he wants me to be prepared for total hair loss (wig is picked out, would just have to order it, if need be). I'm about ready to punch him.

Off topic, but does chemo cause zits? I am appalled to find that I'm breaking out! Is this for real? Isn't the rest of the garbage enough without adding insult to injury? SIGH...