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

Sep 27, 2017 07:09PM toughcookie_21 wrote:

Vivian, you look fantastic! I'd like to know more about the 3 week lashes too. I have tried to use lashes before and I, not very good at it. What is the brand of lashes and where did you get them put on? Do you think a sephora could do this?

I had my second TCH treatment today. The caps were really cold at the beginning but got more manageable at the end.

Sep 27, 2017 09:00PM - edited Sep 27, 2017 09:01PM by Soxfan75

Elastogelgirl - Your hair looks fantastic! I thought the magic number for coloring was 12 weeks PFC. Did you wait six months because you wanted to lighten it? I colored mine last week at 11 weeks PFC with a natural product and so far, no issues, but I just darkened it slightly.

Vivianlu8 - Those lashes are amazing! I might have to look into getting something similar. I have a 1/4 inch gap between eyelashes on one side. Talk about weird. When my eyebrows started to thin, I used Gimmebrow by Benefit. It's like mascara for your eyebrows. It works really well for those days when I just don't feel like putting much effort into my eyebrows.

Sep 28, 2017 01:48PM - edited Sep 28, 2017 04:08PM by ykh

Hello! Yesterday I finished with chemo!!!!! 4 AC + 12 weekly taxol.. It's all done now!!! I lost maybe about 50%, no bald spots, just overall thinning. I followed Penguin protocols. My shedding stopped at about 7th taxol treatment and when the new hair started to grow. I lost the most around my ears but it's growing fast. I iced my fingers and toes while on Taxol, so I don't have neurapothy. Cold capping is definitely worth it! Don't give up!!! Good luck to all of you!!!!

Sep 28, 2017 03:17PM PatinMN wrote:

ykh - looking good! Congratulations on finishing, and with so much hair!

Sep 28, 2017 09:36PM Pambc010417 wrote:

vivianlu8 - you look great! Congrats on finishing chemo! I lost all of my eyelashes about 1.5 months post chemo. I agree, I looked very strange without eyelashes. How did your eyelash extensions attach if you have no lashes left to attach to. Did you have individual lashes glued on? I did have fake eyelashes glued on once for a wedding but they fell of late that evening. My lashes grew back very rapidly with Latisse type product called Careprost purchased on line. In addition, I put Careprost on my eyebrows along with castor oil. My eyebrows fell out about the same time as the eyelashes but they have grown back thicker than ever.

Elastogelgirl - your hair looks fabulous! I cannot wait to color my roots. Did u use regular color with peroxide and ammonia, or a vegetable dye? I'm 3 months pfc so I'm waiting until 6 months too. I'm tempted to try a vegetable dye to cover my roots now but not sure it's worth it. I'm so please with keeping my hair I don't want to jinx it!

Sep 28, 2017 09:46PM Pambc010417 wrote:

ykh- Congratulations and you look great! It's amazing how keeping the hair can make a big difference. Take care of yourself and your hair over the next few months

Sep 28, 2017 10:02PM ItsStillMe wrote:

Hello everyone,

This is my first post. The past few weeks have been really difficult and I am trying to gather the strength to deal with the next step in this journey, Chemo. I have meet with a MO, which was referred by my surgeon, who suggests a treatment of Taxotere and Cytoxin 6x. This facility doesn't offer any assistance with capping but does have Biomedical freezer. My family is incredibly supportive but they have concerns about doing this with no training. Does anyone know of someone in the South Florida area who may be able to help?

Thanks for your input!

Sep 28, 2017 10:49PM Travel_Girl wrote:

Its still me - try going to the dignicap and paxman websites and looking for facilities in your area that may have the machines. (basically go backwards -- find the facilities that have machines, if they work for you (ie distance, etc) -then find a MO that uses those facilities or see what you can do to have your chemo at those facilities. Chemo is chemo.

If you can't find a facility that works - you can also check out the Repunzel project - they might have a lead for you -- I see some people get helpers the first time or two -- to teach you how to do it w/ the manual caps.

Keep pushing and find a way - you will be happy that you did. Either way -- you and your family will find a way to make it work. Necessity is a great motivator.

Sep 29, 2017 04:14AM Brightness456 wrote:

Ykh, you look great! How wonderful to be able to put yet another step in this journey behind you.

I made it through treatment 3 yesterday. I'll wash my hair in a few days. I switched shampoos so I'm hoping it helps with the dry, flaky skin on my head. I never had that problem before. I wonder if it's from the extreme cold on my scalp? At any rate, I'll deal with it to hopefully keep my hair.

Sep 29, 2017 10:28AM Vivianlu8 wrote:

Brighteness i am glad you are done too. since the first time i was never convinced with dignicap or paxman, it sounds more easy than penguin or elastogels but since the temperature is not so cold and the time is only 2 o 4 hours in compare with 9 that i did everytime. I prefered to go with that. The results were ok and very glad i did it. Travelgirl my tip is after the 20 days of the first chemo the big shedding, detangle your hair before taking the shower that will prevent what happened to me. Half of my hair detangled in 2 pony tails that i had to cut. After that i dont comb my hair everyday just the day of the washing and everyday in a ponytail.

Good luck Travel girl with your best decision.

Have a great weekend ladies!

Sep 29, 2017 05:21PM toughcookie_21 wrote:

I think I'm having a big big shed. Today is day 21 after my first TCH treatment, but I had my second infusionyesterday due to a schedule change. I really hope that doesn't screw things up for me. I probably lost about 150 hairs today mostly from the top. Trying not to freak out. 😬

Sep 29, 2017 05:56PM Travel_Girl wrote:

Its still me, I think it depends on what type of chemo you get, if you find my history -- you can see what advice Repunzel gave me when I asked. If you are doing AC (I believe) -- yes they believe (and admit its not scientific) that PCC has a better success rate. For me, they told me my chemo regime had good success with both, I went for the machine. Just to have one less thing to stress me. I still have/had surgery to sort out, which I am doing after chemo.

Vivianlu - thank you for the advice ... I will comb before washing -- just trying to minimize combing and washing. In the end, not sure it will help to shed less, just will help mentally.

SoniaL -- it must have been difficult to cut off your tail. Glad to hear your top is growing in, sounds like you have a leg up. I have appreciated all of your advice along the way.

I ordered a topper just in case I need it (and to maybe cover up some roots on special occasions) . I was able to find a topper that doesn't have an clips. I am still waiting for it to be delivered - it was from thinhairthick.com. Fingers crossed. I also plan a visit to the Lucinda Ellery salon in NYC in early Nov after I finish my last chemo -- I found the link on the repunzel site and it looks like they can do some interesting things. In short, I have a plan B.

Sep 29, 2017 07:02PM Soxfan75 wrote:

Carmstr835 - I was on TCHP and if you're like me, the shedding will start to taper around week 6. I'm 12 weeks PFC and I still lose at least 25 hairs when I comb it in the morning. At this point, I don't even remember what normal shedding looks like. The good news is that all of the thin areas have been filled in with growing hair so my scalp looks fuller than at my lowest point which was around 2 weeks PFC. It will stop, just keep treating it as gently as you can.

Sep 30, 2017 10:55AM - edited Oct 1, 2017 03:15PM by MJPow

Hi everyone! It has been a bit I am making my way through radiation. I have done 22 of 33. I want to let you know that on the radiation boards I found a green tea solution. You steep two green teabags and after treatment for put some on the radiated area with cotton balls and my skin is amazing. I saw so many pictures that freaked me out about how red I would get. My radiologist is amazed at my skin. Some Radiologist differ on opinion if people should do it but mine said it is totally fine. I also use aloe directly from the plant along with Miaderm lotion.

OK back to my hair. I probably lost 75% of my hair after doing AC T. But my hair started growing back about week six of Taxol. I go into radiation treatment now and sit next to beautiful bald women and they all are amazed at my hair. I am so thankful Icapped. I have a few inches of growth I finished July 27. I use hair regrowth shampoo and take a Costco hair and nails supplement. It's growing like crazy!

My hairdresser cut it to all be one length above my shoulders. Tomorrow I go in for tape extensions and I'll post the before and after!! I am so excited!! I've never had extensions so we shall see.

Hang in there everyone I know it can be frustrating and scary. There are some weeks that you ask yourself if it's worth it with so much hair gone but as I go to doctors and see people with a few millimeters of hair growth I feel so blessed!! We are so far ahead!

Oct 16 I'll be done with rads! I feel like I've educated so many people on capping here in Oregon doctors and patients!

I colored a month after and did not lose anymore hair! I lost eyelashes and eyebrows sporadically after but 2 months post chemo they are full. I use castor oil on my brows and latisse on the lashes every night.

Ykh-wow u look awesome!!

Keep up the fight! Stay strong 💪🏻

Oct 1, 2017 04:33PM Daisy613 wrote:

Hello! I've been using Arctic Cold Caps for 11 months now, 15 chemo treatments so far. I'm so grateful for cold caps. I had really thick long hair and it's much thinner now but most people can't even tell. I have no bald spots or super thin spots. I think it has been really beneficial psychologically for me and for my mom and daughter. I haven't had any freezer burn with mine, I change the part with every cap which may help. I was getting bad brain freeze but realized we were putting them on way too cold!

I'm wondering if anyone has figured out relatively safe ways/products to style their hair without breaking any of the cardinal cold cap rules. I did get a gentle trim to even out my length, the top dries kind of puffy and the long layers were looking scraggly. I sometimes curl the bottom about a week before chemo if I am doing something fun. But I have to go into the office occasionally right before chemo and am not supposed to wash it that close to chemo or use products etc. I realize it's my issue, my co-workers won't care but I do, to some degree. I don't want to look like Roseanne Roseannadanna!

Any tricks for flattening my puffy top part? It almost looks like a helmet sometimes with the new hair growth (which is grey and frizzy).

Thank you!