Cold Caps?

[T-Roper]

Has anyone used the Cold Cap systems yet? My

Mother has her first Abraxane infusion today and we are trying the Artic Cold Caps. Any tips or testimonies that it works well?

[Lucylooo]

Wishing all the best to your mom!

I tried using the cold caps, I must say I couldn’t tolerate it!

I heard from a friend who used them, that it had worked perfectly for her, didn’t lose her hair! So it seems to work, but wasn’t right for me!

[Lind58]

My mom used it and suffered through almost intolerable pain - She lost 95% of her hair, but honestly it still kept her sane. I know at a time like this vanity should be the furthest thing on our mind, but we are also human. I would say by 5th cycle of chemo is when she lost the majority of it - She had very very thick hair. I have heard it works best with thinner hair so the cold could penetrate the scalp.

BEST OF LUCK TO YOUR MOM!

[T-Roper in reply to Lind58]

Was her pain from the cap or from the cancer? She has lost her hair before so it’s much thinner than it would have been serval years ago. I agree about the vanity and I certainly hope this works especially for the cost of it

[T-Roper in reply to Lind58]

Thank you for the luck!!!!

[Lind58 in reply to T-Roper]

No, the pain from the cold. Initially the size was too small but she didn’t want to take it off mid treatment and suffered through it. The cold made her blood pressure drop and caused a migraine. Definitely make sure the sizing is correct.

[T-Roper in reply to Lind58]

Oh good grief! I’m starting to think being bald will be much better

[Lind58 in reply to T-Roper]

As long as you are healthy - MOST IMPORTANT

[Tesla_7US]

T-roper, consider that the cold cap stops chemo from getting to her brain, skull and scalp. For long term survivors with many lines of chemo there is a possibility of OC mets to the brain. My oncologist informed me that trying to protect ones' follicles, over the long term, could be at the expense of OC getting to my brain. I'm on my third line of chemo in 3.5 years and I intend to live a lot longer. For that reason I'm content to ice my hands and feet and allow chemo to get to my brain and skull. A deeply personal decision, but informed decision making is what every patient deserves.

[T-Roper in reply to Tesla_7US]

I had no idea about that!! Thank you for sharing!! I’m definitely going to research and try to convince her to drop the cold caps

[Betty123456]

I used Dignicap. Like Cold Caps but much easier to use as they are a fixture in the Cancer Center and applied by the nurses. Not a bad experience at all with an electric blanket to keep warm. Did not work for me I think because my hair was very thick. Did work for at least partially for other patients. Quite expensive but I would have always wondered if I hadn't tried it. No harm done and worth a try. If you are happy with short hair styles it will grow back quickly after chemo. Just wear wigs in the meantime. For longer hair wigs are a great long-term solution. There are so many beautiful ones.

[Jbftheodore in reply to Betty123456]

I’m using Dignicap as well and 2/3 through my 2nd cycle of carbo/taxol. I’m doing dense dose so get a weekly infusion. Yes it is expensive. $500 an infusion. But not a bad experience. Very cold in the beginning, maybe the first 15 minutes. What I like about Dignicap is that it’s easy on me and my husband as going through chemo is hard enough. The manual caps are hard work..you have to hustle through changing caps every 20 minutes and handle dry ice. Dry ice is about $100 an infusion and you need to wear the cap an hour before your infusion and up to about 4 hours after. Wasn’t for us!

Best of luck!

Xx

[Jbftheodore in reply to Jbftheodore]

Oh and I’ve only had minimal shedding so far!

[T-Roper in reply to Jbftheodore]

I’ll look into that. It is a hassle, I definitely agree with that. Unfortunately for us, our cancer center doesn’t offer anything like that- at all.

[Jbftheodore]

My first center didn’t either. So I switched my treatment to a center that did.

[Lizchips]

No, I haven't ever used, I was freezing a lot, I think it would have made me feel better when my head got warm, but as far as saving my hair. It is very empowering losing your hair. Plus, very fast to get ready. I wore baseball caps, my hair just wasn't important to me. Best of luck. ❤❤Liz

[Yellowsnow]

I used them to great success. Lost about 30-40 percent at most but kept my hair and no one could tell I used the pax system tho. It has to fit well, I took painkillers an hour is so before, after the first 40mins which is the worst the scalp the numbs almost and before I put it on I had a cotton headband all around the ears and forehead not at hair. I also had a spray to wet hair as works better and flattens hair and a wide comb to comb in down after the spray. I took a towel to towel dry after. Washed it in tipid water throughout, only use a Keratin shampoo which is expensive but you don’t wash it often and let it air dry. Don’t use normal shampoo or products that strip the hair. I used an oil at the end to keep it moist. Didn’t need a wig and now after treatment no one can tell have mid length hair. Good luck

[Jules_PPC]

I used them, and they do work. I would suggest having her hair cut as short as she can stand, all over. So that she doesn’t have long length on top. They are very cold when used correctly.

My husband did mine for me, he did everything from getting the dry ice the afternoon before, to packing the caps, and changing them every 20 minutes throughout my infusion and for at least 4 hours after it.

My oncology nurse was very sweet to give me Ativan during my infusions, so I really only had to deal with a few minutes of the first one. Trust me, it helped so much. I don’t remember much about my chemo treatments (thankfully) I consider that one of the greatest gifts from my husband during my treatment. He did that for 8 hours every 4 weeks for 9 months.

I did lose about 35 % of my hair after the first treatment, but I had only cut the length of my hair up to my shoulders, and I should have cut it all one length all over.

I rocked that pixie 😉 after I did that, I didn’t lose anymore hair. My hair did go all white, and as it grew back out it was very curly and thicker than before.

I wish your Mother all the best throughout her journey with this beast. Tell her to try and find the silver linings, it helps.

One of my favorites was not having to shave my legs for months!

🦋🙏

[T-Roper in reply to Jules_PPC]

Aww thank you so much! She’s lost her hair before so she’s really afraid of it happening again. And she just had a stroke so we think she’s afraid of losing anymore of herself.

[Jules_PPC in reply to T-Roper]

I can totally understand that. I had what I would call an identity crisis, it was all just so shocking to me. It’s been almost 3 years and I still have tough days (weeks sometimes). Especially before blood tests and CT scans. Even though technically I’ve been NED since February 2018.

Like I said, it changes you, in so many ways. And I believe it changes those closest to you as well.

I wish you all the best!

[Bahamas22]

Depends on what chemo your on. Most people that I knew that used said they couldn’t handle it. To much work, too cold and some still lost their hair. My doctor did not recommend it for the type of chemo I was going to be on. Not a great chance of it saving my hair. Glad I didn’t Lost all my hair... but came back 3 times thicker, pretty Curly and healthy looking.