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

Oct 27, 2017 12:05PM KCMC wrote:

I have question for you ladies. I just got back from my oncologist today. I have one session left of TCHP last one on 11\8. Was suppose to go onto Herceptin only til July 2018. Now he said he is thinking about Herceptin and Perjeta til July 2018. Is this even feasible to keep cold capping? Perjeta causes hair loss but Herceptin doesn’t. I am in tears. He is going to some big Conference and will have an answer on December 1st. I have been able to keep 75% of my hair Son far. I know in the grand scheme of things it shouldn’t matter. Has anyone else cold capped for a year? I am so upser

Oct 27, 2017 08:49PM - edited Oct 27, 2017 09:01PM by toughcookie_21

travel Girl, your hair looks fantastic! No one would ever know you just finished chemo. Does topix come off on your pillow or leave a residue in your hair? Do you keep adding it between washes?

KCMC, I am so sorry that your oncologist changed their mind on your treatment plan. Mine has thrown some curve balls to me and I've questioned some of his recommendations and asked for specific results from the clinical trials. I'd ask your oncologist what is the % risk of hair loss as reported by the manufacturer. I think perjeta doesn't have a high risk of hair loss by itself but I'm not sure. I would definitely ask that and for the % benefit of adding perjeta for your diagnosis. I'm triple positive too but was led to believe that the risk of side effects from perjeta was greater than the % benefit it would bring me.

Oct 28, 2017 12:46AM angiepie wrote:

I am using Chemo Cold Caps in Dallas. They provide EVERYTHING other than the dry ice and they have a deal with Emergency Ice for purchase of 80 lbs of dry ice for $25. PLUS they send a representative with you (if you are in Dallas area) for the first cold capping/chemo session! It GREATLY put my two capping helper friends at ease having an "expert" there with them the first time. This Tuesday marks 14 days since my first of 4 chemo(Taxotere/Carboplatin) so I am anxious to see how much I shed. I have pretty long hair and have washed it twice and mostly just keep it up in a big loose, messy bun with a soft scrunchie. I sleep on a satin pillow case. The first week I actually wore a satin sleeping cap with my hair just piled in it but switched to the messy bun at night. I use a wide tooth comb once a day and hold my roots and just comb out the ends. Using Brian and Joseph's gel for brows and lashes. Getting nervous for the upcoming shed! During the hour of Taxotere I also iced my hands and feet and munched on ice. I sat in a heated chair with an electric blanket, a heated pad, two warmed blankets and two regular blankets on me for that hour. It was torture but doable! Next chemo I am bringing popsicles and apple sauce to enjoy during it since it is hard to open my mouth much with all the straps holding the cap tight.

Oct 28, 2017 02:36PM Elberama wrote:

Trinity411 - I blow dried with a boar's hair round brush very gently on dry hair during capping, and I didn't lose any extra hair as compared to when I didn't blow dry it. I made sure there was almost no pulling or tension that I could feel. I found it was easier to have less tension on dry hair, and my hair got smooth even though I let it air dry first.

I had the regimen that was harshest on hair, Adriamycin and Cytoxan, followed by Taxol. I lost a lot on day 23. But afterwards I shed at a steady pace. I needed to use Toppik to cover my thinning crown after my 11th week of treatment. But by Week 15, even though my long strands were thinner than ever, my scalp was starting to fill in with new growth. By Week 20, my final Taxol, I didn't really need a lot of Toppik to cover my scalp. My baby hairs were doing the trick!

3 weeks PFC, I finally trimmed off the few remaining long strands and was left with a pixie cut. Not the best result, but I still managed to pass off my hair situation as a style change. In that sense, mission accomplished.

Hang in there!

Oct 30, 2017 12:22AM - edited Oct 30, 2017 01:13PM by Elberama

Corduroy - I had the worst results I've seen among the cappers here for AC chemo, and never once did I regret capping. I guess it depends on your motivation. If you have any desire to save your hair for privacy, then it's worth it. I couldn't keep my bob because the long strands were almost all shed, but the baby hairs gave me coverage at the end of treatment for a nice pixie. I would say the unless people knew my diagnosis, nothing about the thinning during treatment would have led the casual observer to think I was a cancer patient. When I started going thin, using Toppik, comb-over, and hairspray provided camouflage. Then the new growth started to fill in. Even family members, who I chose to not tell, simply complimented me on my new hairstyle. I saw them during my rat tail phase, when the strands of my bob were so thin that the ponytail was as large around as a toddler's pig tail. When I ran into them unexpectedly, I thought the jig was up, and I couldn't believe they didn't ask me what was going on!

Some cold cappers on AC were able to keep enough to get hair extensions after their final chemo to maintain their old length!

Oct 30, 2017 11:16AM Trinity411 wrote:

Thanks Elberama! Yes, I too am getting AC + Taxol so I'm very nervous, but I have 3 young boys at home and I if I can keep some hair I think this whole thing will be much easier on me and them. I just onbioscan't wear a wig 24-7 and really don't want them to see me without hair. It's good to know you used toppix, I will have to get some. Right now, I guess I'm just in the wait and see phase......which really stinks!!

Oct 30, 2017 12:27PM - edited Oct 30, 2017 12:31PM by Travel_Girl

Toughcookie - I think that some of the toppik comes off on my silk pillow cases, however, not much and I would do it anyway -- I bought several of them and wash them very fews days anyway just to get rid of the chemo from sheets and room. The topic does leave things in your hair, as it is designed to be 'hair fibers' -- so it leaves things to fill in bald or thin/spots-- I can't say I have perfected the application - I have utubed several times. My biggest issues has been w/ my multi-color hair and trying to find a match. I can see myself using it post chemo just to create volume -- we will see

In between washing -- I add it when I need it - mostly to roots around the face -- those stubborn ones in the front hair line, probably washes off when I am washing my face or through the shower cap.

Sherry - Fantastic news about the scans and thanks for sharing your motivational pictures. And agree cold capping does suck, and I would still do it again facing the same decision.

I hope it helps.

Oct 30, 2017 02:01PM PatinMN wrote:

Sherry - you look great, and your hair is amazing. Here's to clear scans again in 3 months!

Oct 31, 2017 02:47PM SJane wrote:

For those icing for possible neuropathy, I made Ziploc bags of coldness by mixing alcohol and water (got the recipe off the internet).  I bring two bags for each area and rotate them in and out of the cooler to keep the hands & feet & nails cold during the taxotere.

KCMC - I will be doing the Herceptin for a year once my rounds of TCHP are done.  My oncologist said she considered Perjeta as well for the year, but said said there was less than 1% benefit to adding it, so I am going Herceptin alone, thank goodness.  I will be interested to hear what your doctor concludes is best for you.

Corduroy - tough decision, to cold-cap or not to cold-cap.  Have you decided yet?

Nov 1, 2017 11:43AM Willow22 wrote:

corduroy - loved the way penguin cold caps are custom fitted around the head ---- i have a small head, and was very concerned that the elastogel caps would not fit tightly to chill all of my scalp.

Penguin rents used caps at a discounted rate of $300 per month. The caps are easily cleaned between users, and I would have loved to have ordered those if I had known prior to starting treatment. They don't mention this anywhere on the website or over the phone -- you need to ask for it. Makes them the same price as elastogel rentals I believe.

Willow

Nov 2, 2017 11:52AM Travel_Girl wrote:

Brightness -- Congrats on the milestone -- done with chemo. Woohoo!

I wear mascara on occasion -- have throughout chemo -- on the rare occasion I was going somewhere - I am an eyelash person, always have been. I don't know the official 'stance' on when to do this -- I would think try it and if you can't tolerate it, don't -- and don't wear it everyday? If you don't need too?

Also check out GrandeLASH-MD - as an alternative to latisse -- they sell it on amazon, however, heard some rumors that it might not be legit from that site, so recommend direct from the website. You can utube before and and after videos of make up bloggers -- i have never used latisse -- i just found better reviews for this doing my research.

I am 9 days post my last TC and I still have brows and lashes -- just keep wondering if they are going to fall off myself -- I had read they fall after TC finishes -- so we will see.

Nov 2, 2017 12:58PM red332 wrote:

My first post. I start chemo next week, and will be using the Dignicap. My hope is that I retain enough of my hair to look "normal" to the outside world, espcially my clients, and especially to my 7 year old daughter. I am having 12 weeks of taxol (weekly) + Herceptin, then Herceptin only. I have read everything on the Dignicap website, and spoken to the technicians at the hospital, but I still have tons of questions.

1. First, can anyone recommend a shampoo? I don't want to make a mistake and the hospital was not able to give me guidance.

2. Also, someone posted here that Dignicap says it's ok to use a flat iron on the ends of your hair? Is this correct?

3. My oncologist says that the success rate for my type of chemo are better than the 66% quoted by dignicap. Have you found this to be true? How far in do you think I will be able to tell whether it's working or not? (if it's not working, or not working well enough, I am just going to stop, because the cost is per treatment).

4. I am mostly gray, but I color my hair red (close to its original shade). I'm going one last time and my colorist is going to lighten it up so the roots don't show as much. For those of you whose color grows out noticeably, how did you handle? Is it OK to use any of the root touch up products? Or did you just go au natural (or wear a hat).

5. Is it safe to wear wool caps or do they pull on the hair too much?

6. I am dreading the actual treatments. I am cold all the time to start. Any helpful tips other than to wear warm clothing and blankets? They told me at my fitting that I will also be icing hands and feet. Ugh.

Thanks so much for any advice you can give!!!!!

Nov 2, 2017 06:47PM SoniaL wrote:

Hi there red332...so sorry you have to be here, but this board was so helpful to me during my treatments. A lot of the ladies here have used manual capping systems, but I used Dignicap like you will be doing so thought I could help with some of your questions.

I used Acure hydrating shampoo, I had read somewhere that was a recommended one to use. You can find it on Amazon and most Targets sell it too.

I did use a flat iron/curling iron on the lower half of my hair. I lost more hair than I wanted to, but I never felt like the heat treatment is what caused it. I would also sometimes use my hair dryer, just for a short period with the cool air and the lowest speed, just to give a slight lift at my roots.

My chemo regimen was different from yours so can't speak to the success rate. I was told upfront that the success rate for AC+Taxol was only like 25% and I guess they were right. I lost a lot of hair, but most of the loss occurred about halfway through my treatments (I had 4 AC plus 12 Taxol). My hair began to get so thin in those last 8 weeks that I looked sick so I started wearing a wig. However, some new hair was already growing back in before I finished the treatments and when I was done, at least my scalp was fully covered. I had long hair prior to treatment and not much of the length was left, so I cut that off...but now I'm starting regrowth with 5 or 6 inches of hair on my head rather than stubble...so I'm still glad I did the capping.

I am blonde (with the help of my hairdresser) and I was also worried about roots, so before I started chemo, I had a balayage treatment to darken my hair. It was a fun way to try something new, but looking back wasn't really necessary. I don't think I would have ever had much root color showing because my hair did not grow during treatments.

Not sure about the wool caps...I probably wouldn't wear them for a long period of time. I did wear a baseball cap some during the thin times.

If you are cold-natured (and I am too)...treatments are not going to be fun. The treatments themselves are not bad, but the cold is hard to endure and the cap itself is uncomfortable (heavy and tight under your chin). But - I can honestly tell you, if you get through the first 10 minutes, you will be ok. I almost had an anxiety attack at my first treatment when they got the cap on but I talked myself through it and was fine after that. Hopefully your chemo clinic has heated blankets, they are a lifesaver!

I hope this is helpful. Best of luck to you and prayers for complete healing.

Nov 2, 2017 09:38PM red332 wrote:

Thanks so much for your advice, Pam and Sonia. Am supposed to get it colored tomorrow (6 days out). I should have had it colored sooner but was not able to find the time with all my medical appts and working at the same time. Argh. The colorist was going to add some highlights as well so the gray wouldn't be as noticeable as it grew in. Wondering if I should go ahead and do that but leave the roots alone or just have her color the roots around my part (can always part on the other side if the hair thins there because of it). I love the idea of the root touch up powder when needed but it's very difficult with red hair as there aren't many options for red and it's unlikely to match my hair. I also work at home but have a young daughter I walk to and from school every day so I am out in the world. At least winter is coming so I can cover up.

It's kind of surreal to be obsessing about this with everything else going on. But it's the only thing i have even a smidgeon of control over, so obsess I will. :-)

Nov 3, 2017 04:58AM TiffanyAching wrote:

Hi all,

I keep coming to this thread to get motivation and finally decided to post.

I've just had my second treatment on 11/2. I started cold capping using arctic cold caps on 10/12 at my first treatment and am happy to report I haven't seen any excessive hair loss so far (not more than before starting thr treatments). I'm on TCH regimen 6 doses 21 days apart. I keep the caps for 4 hours after the carboplatin is finished as recommended. I have a short thick black hair, still natural color. I use tresamme nourish shampoo (no parabens or dyes). Since I don't use any products (I ditched even the conditioner) my hair stays annoyingly flat in between washes. I just bought a fleece hat for the cold days ahead I hope I won't have to wear it constantly.

I can report that the first 4 caps I put make me wanna cry. For the first 5 minutes or so I clench my teeth and have to talk myself not to pull the cap and be done with all this vanity. But then as red332 and many others pointed out it's the one thing we have control over, so I'll keep going. My husband is very supportive - he does the hard work of getting everything ready, shopping for dry ice and meticulously following the instructions. I'm so lucky!!!

I have Aetna insurance and I am planning to submit a claim after my third session and see what happens. When I spoke to cust service they told me to submit pretreatment to see how much they would pay. Since the cancer center I go to is not very familiar with the process (they had only one other person before me use CC) they did not know what to do with insurance so I have to figure it all out by myself. So far my MO says she'll support and sign anything I need. I'll be back to share my experience:)