Experiences using Penguin and Dignicap Cooling Caps

WMH_27

Hi,

I just received my diagnosis of Stage IIA IDC and am scheduled to begin a very aggressive Chemo treatment beginning with 4 treatments every other week with Adriamycin and Cytoxan, followed by 12 weekly treatments using Taxol. I have been told that these medications will definitely result in total hair loss unless I use cooling caps throughout my treatments. If I use cooling caps I have been advised to use the Penguin cap during the A/C treatments and the Digicap during the Taxol treatments. Even with these caps there is still a chance I will lose all or most of my hair. My first treatment is August 24th, so I have very little time to decide if I want to add this discomfort (misery) and expense to what I will be having to endure.

Has anyone used one or both of these cooling cap systems and what has your experience been like? I hope to hear from others about their experiences and decisions within the next two days.

Thank you so very much.

KMom57

I'm using DigniCap. But my chemo regimen is TC so I'm not sure if my experience is relevant to yours. I'm 21 days out from my first infusion. Have had a lot of thinning which is a little freaky, but other than a spot near my forehead at my part, which is really noticeably thin, almost bald, nobody would notice. I'd estimate I've so far lost less than 2-3%. I'm told that will NOT hold throughout my next four, I will lose more but the jury is out on how much. The experience itself — it's a very cold, long day but I didn't find it painful or uncomfortable to the point of needing meds or anything. The nurse did give me Tylenol to ward off the headache from the tight cap but I'm not sure I needed it. The worst part in my experience is that it lengthens the infusion day considerably, and worse, having to be so careful with my hair day to day, having to think constantly about that. When to wash, how to wash, not go out in the sun etc. Would I make the decision to do it again, yes. So far. I’ll update you tomorrow after my next infusion and let you know if I still agree with myself.

shaaz

Hello ,

I had 3rd grade but 2nd stage breast cancer , lumpectomy right breast and removal of lymph nodes: 17 ( only one was positive )

Medications for chemo are really strong i lost all my hair with in 10 days after my first chemo.Chemo shrinked all the cells and roots got shrink too and i had hair fall. I used real hair wig just only when i visit my family because they did not know about my situation, but at one point i was so fedup of that wig too that i started wearing sun protection headwear Sun Protection Headwear , or sometimes i just used a scarf and tied it up on my head like a turbin . Trust me it is a good style . I myself trimmed my hair because when you will wake up in the morning you will see bunch of hair, it is better to trim short .
And do use sunblock when you are in sunlight. Drink lot of water , it will help .

All the very best with your treatment

take good care of your health

WMH_27

Thank you Shaz. Hel[pful information I will remember.

From your message it looks like you did not bother to try the cooling caps - is that accurate?

How was it using a human hair wig? I was told that the upkeep is the same as your own hair and that most people use synthetic hair. 2 recommended wig designers told me this.

hapa

I used Dignicap for TCHP and it didn't really work. I kept a ring of hair around my head but was bald on top. The dignicaps come in three sizes and none of them fit my head very well. The nurses tried to compensate by putting wet washcloths on top where there was a bubble, but apparently that didn't quite cut it. Whatever cap you use, you need to make sure it has a good fit and is very cold. Also, it is recommended to not wash or comb your hair very much during chemo if you are cold capping. I worked out five times a week and had a very active job so those recommendations didn't really work for me. I will say that my hair came back THICK after chemo (not fast though), which was a relief because hair loss can be permanent from taxotere. The dignicap was free at my cancer center, otherwise I probably would have been pretty pissed that it didn't work. YMMV.

buttonsmachine

WMH_27, the effectiveness of cooling caps is highly variable depending on your chemo regimen, how well you apply the cold caps, and your individual hair. Some ladies here lose almost no hair with cold caps, and some still lose most their hair. My oncologist told me that hair loss is harder to avoid on ACT than TC, but if avoiding hair loss is important to you, it's definitely worth a try.

I tried cold caps, but did not follow through because I got extreme "brain freeze" from it. I did lose all my hair, and I sometimes wish I had tried harder with the cold caps. It's grown back now, fortunately, but it's still not as long as before chemo. If I had to do it again, I'd try to keep my hair. Best wishes to you.

WMH_27

Thanks for your reply. I did decide to try the cold cap systems even tho my hair is already thin. I am starting with 4 treatments ACT and was told if it doesn't work for me most to all of my hair loss will occur within the first two treatments and I will not continue with them. So, I decided it was worth the initial expense rather than live with regret that I did not give the caps a chance. I had my first chemo treatment on Mon, the 24th and was pleased with how ell it went including the caps. Just as I had been told by a number of women, the first 10 minutes with the first 3 caps was unpleasant, but not intolerable. I did not have brain freeze, but I am not someone who gets the "ice cream headache" that some people do. Due to Covid, no one other than the Penguin capper is allowed to be with me during treatment, so it was an added benefit to have another person in the room during the infusion.

Best wishes to you.

WC3

Hi WMH_27:

I had taxotere and used Dignicaps. You can see my results about 9 replies down in the post I have linked to below.

https://community.breastcancer.org/forum/6/topics/...

I started with long hair down to my mid back and ended up bald on top with stringy, short hair so I just cut the few longer strands that were left. I think my results were below average though. Taxotere is a potent hair killer and my cap did not fit quite right for my first and fourth session.

The normalcy the cold capping gave me was nice as I had long hair since childhood but it was definately a test of endurance and once I lost the hair I didn't miss it much. There were some enjoyable aspects of having very short hair.