Cold Caps Users Past and Present, to Save Hair

morrigan2575

Looks really good. Congratulations!

AMG2

Swimgal!!!! Congratulations on finishing the 12 AND keeping your hair!

I'm so happy for you. 6 weeks behind you, and using the Penguin system - thank you, beloved daughter! My infusion center does not support the automatic systems, unfortunately.

Mine has started shedding a bit more vigorously, but we shall see how the next 6 weeks go.

swimgal

Morrigan_25: Thank you!

AMG2: Thank you and good luck with your last six. I'm not familiar with the differences between Penguin and Dignicap. What do you mean by automatic system? I'm sure you know, but be VERY gentle with brushing or combing. I only used a very wide tooth comb and the brush I got from Dignicap. I hope your shedding slows down for you.

morrigan2575

"I'm not familiar with the differences between Penguin and Dignicap. What do you mean by automatic system? "

Dignicap is cooled via a machine that pumps freezing cold water through the cap. With the other system the caps are frozen and, you have to change them out as they thaw in order to keep the head cold.

With Penguin and others you generally need a helper for the caps.

swimgal

Thanks, Morrigan_25.

kellywilk

Hello team — I start chemo next Tuesday. I will be getting Taxol (12) and AC (4). I am seeing success with Taxol here but what about AC? I know that's particularly brutal across the board, including hair loss. Thanks so much, Kelly

AMG2

Hi Kelly, I'm sorry for what you have to go through. I think I've seen toward the beginning of this thread some ACT successes as well as failures. I am not going to be able to tell you too much about success with taxol plus AC, as I am taxol herceptin, so no personal experience.

That said, what options do you have available to you? I am using Penguin, and my rep, who has had bc, had, I think more than taxol and her2 monoclonals for chemo, and also used penguin, was very upfront with me on success rates with various protocols. You might try giving them a call, if that is something you would be able to do. You have to have someone help you, and I think they offer this service for a fee, assuming you can have a visitor with you.

I didn't ever look into systems that don't rely on dry ice and a capper (my daughter is mine) because my center doesn't have that available.

I hope some ACT people can chime in here and help you directly.

ninaca

Hi, I was Just got told I will be starting Taxol, weekly, for MBC, with a lobular focus. My MO discussed using a Paxman Cold Cap that is available at two Kaiser facilities. The question is whether I should go that route or just take my chances? What are the pros and cons? I will have to travel further if I want the cold cap. Is it done before or during or both when I have the infusion? My MO has said I don't need a port at the moment. I had a port for my initial BC, no cap, and lost all my hair but also was taking AC, in 1998. Thanks, Nina

claire1973

Hi Nina,

I'm in San Francisco, so we are neighbors. I did 12 weekly taxol and used the cold cap. I kept most of my hair....on my head. I last ALL of my other hair. My MO said I would have lost all of my head hair as well. I used the Dignicap which is plugged in, so you do all of the cold capping onsight for that one. Other people I've heard from on this site did Penquin Cap which is manual, so you can go home wearing it. For Dignicap, I was at the hospital for infusions from about 4-5 hours all in. Does Paxman plug in?

I think if you take your chances, you will probably lose your hair. I'm glad I did the cold capping. I'm also glad I had the port for the weekly taxol. My veins don't like to heal, so I would have had bruises all over myself from the IV.

Best of luck for getting through it without incident. Call me if you need any help, I can happily come there and help you.

Claire (415)515-8063

calinana4

Hi Nina. I did the Paxman at a Kaiser location which was a bit further than the facility I normally went to. It is all done on site while you are having the infusion. Does add some extra time to procedure but I felt worth it. At the time I started itwas fairly new at Kaiser so I think the first session wasn’t fitted as tightly as it should have been, resulting in hair loss at crown of head. I ended up keeping about 40%. Watch the Paxman videos and make sure no bubbles are left. Good luck!

Shirley

ninaca

Thanks Shirley. I've chosen my closest Kaiser (not the ones with Paxman) and know I can get a portable Penguin cold cap (they were the originators before Paxman went in to facilities) delivered to me along with " white glove"service where someone is assigned to stay with you and change your cap every 30 min. for several hours. It's done with dry ice. I don't know if I want to "bother" since I may be on Taxol longer than the usual 12 weeks, I'm "as needed" depending on scan results. I have to decide if I want to "fuss" with all the added stuff or have more unstructured time to myself to do whatever. At 75, my hair is not as important as it once was and now I can go wig shopping!. Still not totally decided.

booklover12

I am starting chemo soon. Four sessions, three weeks apart of Cytoxan and Taxotere. I’m thinking of trying a cold cap but concerned about how my dark brownhair would look with all gray roots coming in. I know during the pandemic I had a couple of inches of gray. I almost think I would look better with a wig than two toned hair.

Any opinions? The place I’m going to for chemo doesn’t offer anything. I can travel to another center about 40 minutes away, but with the extra time it will take to get there and the extra time for treatment I’m not sure it’s worth it.

kaylie57410

Hi Booklover-I was in your shoes over 4 years ago facing same chemo protocol of cytoxan and taxotere--I used Penguin Cold Caps and my daugher was my partner- you do need a partner --I saved 80 percent of my hair and lost another 5 percent thru ongoing shedding for a few months- I looked normal thru it all and for me was totally worth the work ,time and cost to keep my privacy that I was going thru treatment, I have strawberry blond hair that have lightly touched up for years so the roots didnt show much-I did paint on my usual color product--Loreal to just the new growth after about 6 weeks and it was fine- I have read some gals with darker hair used Topik powder in the same shade as their own with good coverage.

I suggest you read thru this thread going back a ways- lots of good info ,advice. It seems the TC protocol can do well with capping--it is the Adriamycin--Red Devil part of the ACT protocol that can be tougher on hair retention

It comes down to personal choice and what your goals are. If you decide to go ahead with Penguin- ask to rent previously used caps-they are sanitized and consideraably cheaper to rent- the company does not tell you this upfront-they are a business afterall

whatever you decide-know you will get thru it day by day--I m 4.5 years out and life is 98 percent back to normal--stick with this forum - is invaluble to correspond with others who can relate and be supportive of all aspects of your treatment--Thanksgiving hugs to you,,Kaylie{Candace} in Vermont

kaylie57410

Addendum--I see you are HER+--will you have to go thru addtional treatment for that ? that may help you make the best choice for yourself as prolongs the infusion process timeline---I have read that the drugs used for that are kinder on your hair as to retention---C

claire1973

Hi Booklover,

I am glad I did the cold cap. I started out wanting to cold cap because i didn't want to look as sick to my kids (15 and 16 at the time). In the end I was grateful I made the choice because it maintained my privacy. I ran into about 4 or 5 acquaintances during chemo...just around town...I wasn't prepared to go into a whole story of the cancer/treatment. Thankfully, I didn't have to. Yes--my roots were GREY GREY GREY during that time....wasn't ideal, but totally a personal choice.

You can't make a wrong decision...just what works best for you.

camama2

Hi Booklover,

I've been through chemo twice, the 1st time was 15 years ago with TAC and yes I lost my hair. The 2nd time was last year with Carboplatin and Taxotere. I used the Penguin Cold Cap and did not lose my hair. After the 1st chemo I suffered partial permanent hair loss. I know it is very rare and my hair dresser of 40 years has worked with dozens and dozens of chemo clients and I'm the only one whose hair didn't come back fully. I could handle being bald for a few months but didn't want to take the chance that I might react the same again and then have total permanent hair loss (it's the taxotere that tends to do this). Going through chemo isn't easy but it was better the 2nd time to not have to deal with the depression of being bald when you already feel like $hit. My oncologist told me if I hadn't used the cold cap I would have been bald. Good luck with what ever decision you make. You will get through it!

Laurie

green804

I’ve done 2 of my 4 TC infusions with the penguin cold cap. My MO said all my hair would be gone by now without the cold cap. I don’t love the grey roots but it would take almost 2 years to get my hair back to where it is today. I couldn’t deal with that. I use a root touch up spray on the most visible roots. It seems to be working. The not being able to use heat is the hardest part for me.

morrigan2575

i cold capped during 6 TCHP. I held on to most of my hair, like 75%

janiehs

I realize this is totally anecdotal but I used dignicap (TC x 4), lost most of the hair on top of my head (the cap never felt like it fitted correctly and the nurse assigned to do the cold cap was less than interested), but ironically when my hair on top grew back, there was/is virtually no gray. I definitely had a fair amount prior to chemo, have been coloring my hair for years (I am 67) and now I haven’t done so in almost a year. Really weird but I’ll take it.

swimgal

Is there an equipment/supplies giveaway room on this site? I would like to donate my Dignicap if it would help anyone, but not sure where to post it. Thanks for any help. Or if anyone is interested in the cap feel free to private message me. I used the cap 12 times.

renbird

Hi everyone-

I cold capped using the Paxson system. I lost about 2/3rds of my hair, but still glad I did it. I was on Taxotere and cytoxan.

My last treatment was Feb 2021, so eight months ago. I’m almost 50.

Where I lost hair it came in dark, no grey, wavy but very soft and thin. I used to have lots and lots of hair, but it seems like a it’s just not growing in that way…

Has anyone heard of a situation where hair grows in differently for as long as mine has (8 months) but then comes back in stronger later? Or should I just accept that I now have very fine thin hair?

Thank you! -Renbird

camama2

Hi Renbird,

Taxotere can cause permanent hair loss, it's rare but it happens. I had taxotere 15 years ago (along with A & C) and suffered partial permanent hair loss (no cold cap back then). My hair went from a 10 (on a scale of 1 to 10) to a 2. My hairdresser of 40 years told me of dozens and dozens of women she worked with over the years I was the only one whose hair didn't come back the same. I was happy to have hair! Last year I went through a 2nd round of BC and had taxotere again (and carboplatin). This time I did Penguin cold caps. I retained most of my hair. Honestly, if I was only going to be bald for 6 to 8 months I would be okay but didn't want to take the chance to be permanently bald since I reacted to taxotere the first time. My hair is now a 1 out of 10 but I'm happy to be alive and not bald! Take care and hang in there! Sending hugs.

Laurie

AMG2

Hi Booklover and Nina, I did Penguin cold caps for 12 weeks of taxol with my daughter as capper, and now, at 1 week and 2 days past my last taxol, I have at least 90% of my hair. I am now 57 and have plenty of grey hair. I found it rather hilarious that my son told me about 11 weeks in that I was going grey (been going grey for 20 years or so - started dyeing my hair so people wouldn't think I was my now 21 year old's grandma when he was in elementary school).

Anyway, yes, my roots and temples are showing, but I really, really love that I still have my head hair. I washed it today, and it felt so damn good to still have this one thing.

To any others considering capping or going through it, my scalp hurt basically the whole time which made me think my hair was going to fall out. It didn't. It did shed what seemed like big sheds at 3, 6, 7 and 10 weeks. I think that it just seemed really big because of washing only 2x per week and barely brushing it. (You really do get used to doing this). It is a bit thinner on the crown, but not noticeably so to anyone but me.

Scalp still hurts a little, but I barely shed any hair in the shower this morning.

AMG2

Hi Claire, it's good to see you, and Swimgal, too!

I really do feel like my youngest was pretty freaked out by the visible effects of the neuropathy I was having from chemo (couldn't walk properly some days actually until today). I could almost feel his stress from watching me stumble around the kitchen. It wasn't a response I really anticipated. I think it would have been much harder on him to have to watch me go bald, too.

hippmark

Thank you for the information on cold caps. I will be having surgery soon and will also need chemo. I am looking at Dignicaps because I don't have anyone to help with the Penguin caps. I could go with the white glove service, but I see that is an additional $450 a week for service. I already have some permanent bald spots (hidden) under my hair due to Lupus. It was very hard to lose that. So I would like to try to preserve what I can from chemo. I know it will be hard to adjust to them, but none of this is easy is it? I will need to go to a different center for the chemo portion as my group does not offer dignicap. That complicates things, but it is only a few miles away.

I would be grateful for anyone who has updates from those choosing the same or similar treatment.

claire1973

AMG2,

How is the neuropathy now? I felt very lucky (in my unluckiness) that I didn't have too much neuropathy--mostly just numb finger tips.

Hippmark,

I used Dignicap and was very happy with it and very thankful there was a trained nurse who did the heavy lifting. The cold was well very cold--but it only bothered me on my head for the first 10-20 minutes. It was very painful for my ears for the whole time. It was just hard to protect the ears for me. I had 12 weekly taxol infusions. I had the normal shedding every few weeks and lost about 20% or less of my hair. Interestingly, once it stopped shedding--it has totally stopped falling out. I don't even have the usual small amount of hair in the drain after I shower. My last infusion was March 25th. The hair I lost is growing in and is maybe about 3 inches long, so I am glad I have all of my other hair training that new crop. My oncologist is an active advocate for trying to get Dignicap covered by insurance because of the mental health issues that come for patients with cancer who then have to manage total hair loss and the feeling of empowerment enabling women to preserve their hair.

For me--I was fully prepared for it to NOT work but wanted to try anyway. I'm glad I did.

hippmark

Thanks. That helps! There is a subsidy of $1000 (if you qualify) on Hair To Stay towards treatment with Dignicap. For anyone interested in that. I'm going to apply. I agree though, that it should be covered as hair loss for many (not all) is another factor in the equation of coping.

AMG2

Hi Claire, my foot issues come and go, which makes me think that is just going to be temporary. I can walk almost normally today. My fingertips are still numb, and my right outer forearm is numb to the elbow. Left hand and foot are slow to respond, but getting faster, so I think most everything should return to normal. Fingertips have been numb and stayed that way since week 6, so I'm not as hopeful about getting sensation back in them, but they function just fine.

teeha2

Hi everyone,

I have 4 rounds of TC, I have my 3rd chemo session on Dec. 28th and last one on Jan. 18th. I'm using DigniCap and have lost probably 70% of my hair. My hair was very thick and during my first chemo, the cold cap didn't bother me at all (even though the temp was turned up to almost max level), I think I lost a significant amount of hair because my thick hair prevented the cap from keeping my scalp cold.

My hair is thin now, especially on the crown (though I'm not completely bald, I just have a funky comb-over situation up there I will continue the cool cap for my 3rd chemo session on Dec. 28th. At this rate of hair loss, I'm afraid my hair will be way too thin for me to do the cold cap on my last round on Jan 18th.

Did anyone continue to do the cold capping even when your hair was extremely thin? And if so, did you do anything to protect the spots that have almost no hair?

I'm really hoping to be able to do the cold capping on my last session. I feel like if I stop, that would undo any benefits gained from the cold capping I've done so far.

hippmark

Hi TeeHa2. I'm so sorry the Dignicap did not work for you as well as you hoped. I plan on using it for my chemo when I start in January. I have medium but fine hair. The only thing I have seen but not studied, is that some people wet their roots with a spray bottle and lightly comb it down before the Dignicap is placed to get your hair as close to the scalp as possible. Perhaps you are already doing this, but I wanted to mention it in case it might help.