Cold Caps Users Past and Present, to Save Hair
Comments
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Hi girls, I just wanted to check back in. I am now six weeks after my final chemo and I think that having the cold caps and my wonderful "penguin team" of cappers to help save my hair has really helped my outlook through the whole process.
A month after my last chemo I had a skin-sparing mastectomy with expander placement and am recovering from that. I have gone to work through the whole process (except for a week after surgery) and no one knows anything is wrong, if I don't choose to tell them.
My long hair did thin out, and due to the way we have to be so gentle it looked thinner, but I have kept most of it and now have baby hairs growing in all over my scalp to "fluff it up" more. Thank you penguin caps!
Best yet, all of the lymph nodes they removed during my surgery were negative, so the chemo worked, while the cold caps were working. I sure wish the same level of success to everyone!
It is super scary while you are in the middle of it, there is so much uncertainty. But please do your best to relax and take care of yourself through the process, and keep the good thoughts going. Having hair sure helps with that, I have to say. GOOD LUCK!!!!!!0 -
Sciencegal, love to hear a happy ending! Thanks for writing; as someone just about to begin, it is so encouraging. Looks like I might be the second person ever to do cold caps here in Vancouver. The first one is on her third cycle, I understand, WITH her hair.
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Yay...love the successes! So glad surgery results were good! Time to move on and live life!
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Hi Everyone,
I have not been on here in a while. I had my last chemo in March of 2012. I was at the center today to check in with my radiologist and was talking with the receptionist. We had talked in the past about the cold caps and she told me no one else has been in using them. She doesn't think people are being told about them. Maybe it's because they are not yet FDA approved. Anyway, I went home wondering how to let more people know. Out of curiosity I searched on Facebook to see if there was a page. There is one, though not very active. I just wanted to mention this in case any of you have a Facebook page and want to "like" the Penguin Cold Cap page. It may help spread the word. Of course now people who did not even know I had cancer will wonder or ask but I'm over that point and felt ok about it.
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Hoping some of you experienced users can help. I'm trying to figure out the timing for my first cold cap. How do I know when it's 50 minutes before my chemo infusion. I have an appointment with my oncologist at 11:40 (they already took blood) and then my chemo appointment is at 12:40. I have no know idea if I will get premeds or how long they will take. Does it matter if the caps are on longer than 50 minutes before the chemo drugs begin? I start on 4/18 and my caps should arrive tomorrow. We're practicing this weekend.
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Hey everyone,
I am almost at my last of 6 TC's, and will them be all done and on "surveillance mode" as my Onc calls it. I am so excited to be just about done. My hair s hanging in there and I still have most f it. I took pictures the other day and I'll post pictures tomorrow. I'm thrilled with the cold caps..... Especially since I've already been completely bald before when I went through chemo 18years ago.
Anyway, I have a question for y'all. I've been following all of the protocols and the only problem I seem to be having is that if i look through my hair to my scalp it looks like I have massive amounts of flakes of skin. Kind of like dandruff but larger pieces of flakes/skin. It might be that my scalp id wicked dry, but it doesnt get any better even if i only wash my hair 1tine a week. i do use a spray in/leave in conditioner. I can't seem to get it to stop and its so grossing me out. If I could, I'd use some dandruff shampoo or something, but I know I can't. I've never had dandruff or flakes or skin pieces.... Ever.... and I have no idea what to do. It is really disgusting. Sigh. Any ideas?0 -
Jc254, it is fine if the caps are on longer than 50 minutes before chemo starts - 50 minutes is just the minimum time needed to "freeze" your follicles before chemo starts circulating in your body. I had a different chemo regimen than you, but I imagine there are premeds with yours. Ask your chemo nurse how long your premeds generally take, and explain that you need to have your cold caps on for 50 minutes before they start infusing the T or C. My nurses were very accommodating to my timing. I wish you the best as you begin on 4/18!
Amrdbit, congrats on being almost finished with treatments! I think a lot of us had that icky scalp buildup to some extent. Mine was pretty minor and I was able to sort of pick those big flakes off my scalp without pulling out any hair. I think some used white vinegar - Im sure someone who used it will come along and explain how to do that. I often rinsed my hair (just with water) in the shower between washes, which helped I think. Do wash your hair twice a week.0 -
Hey PatinMN, Yes, I wash twice a week. I jsut washed this morning and as soon as my hair dried all I can focus on is the flakes. My hair isn't even dry. It's a scalp thing I guess. Hmmm..... gross. Hopefully if there is something I can do with white vinegar someone will chime in. I'm all ears and will try anything.
! Thanks for the feedback and although I'm sad anyone else had this issue.....I'm SUPER glad to know it's not just me. I was feeling like a flaky mutant. Sigh. LOL! Ha ha ha!0 -
Yes, I used just a tiny amount of white vinegar mixed in with my shampoo (just a few tablespoons). I only had to do that once, and the flakes went away. Hope it helps!
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Just ordered my caps. Geralyn is a sweetheart.
My chemo is next Thursday and I went to talk to the nurses about the fact that I'll be cold capping. I told the head nurse and explained that there will be coolers etc and that I had to wear the caps before and after. I didn't want to show up with all this stuff and just say "surprise" and have it be confusing. I wanted to feel more comfortable about how things would go.
The response was not encouraging. lol She made it clear that I was on my own and they don't supply anything and I just would show up and do my thing and they'd do theirs. I was disappointed at first but now I'm chuckling about it. Clearly, she didn't want to say she didn't know anything about what's involved. But I also get that they are busy and wouldn't really welcome a disruption to what they know to do. And clearly she's skeptical.
That's okay. It's true that this is my choice and since only one person has done it in this building before, it's unknown. Actually, I welcome the opportunity to demonstrate this "new-fangled" option in the hopes it will help others down the road.
So where I was nervous about not knowing how it would be, I'm now fine with it.
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Shipsgirl, I am the only one to try the caps at my hospital in Toronto. They were also not encouraging, but eventually came around and ended up being very nice on the day of chemo. They even allowed me to have my own room, which was so helpful, given my entourage of stuff and people. Have only been through one round so far and still on "wait and see" watch. Today is day 16. Hair is falling in other places consistently, but not yet from my head. I am nervous and sooo hoping this works. Trying not to stress, but really hoping for the best.
I have read much of this board, and so many ladies here were the first in their hospitals, so just keep sticking to your guns.
Don't forget to take an electric blanket with you. It was so helpful. Also take some extra gauge, in case you feel pain on your head, you place a little piece on that part to avoid frostbite. I also took gloves for myself and that was very helpful as I kneeded the cap on my own head from time to time.
good luck!
curly
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Hooray for the pioneers!
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shipsgirl, I was also the first at my center. The nurse I had every time was less than enthusiastic, especially the first couple of times. I kept my cool with her though, because I needed her cooperation on the timing. She eventually came around. Just remember, they are working FOR YOU. You are spending a small fortune at their center and you should not settle for anything less than professional courtesy and full cooperation with timing.
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I had consultations with three different oncologists. All three were relatively young female doctors. The first never heard of cold caps, the second gave me the scalp mets lecture, and the third said, "If it's important to you, why not"? I picked the third.
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My onc never heard of them but said go ahead. He was surprised after treatment 2. questioning me about them after treatment 3. Giddy after treatment 4. He always comments when I see him. Another new patient in his other office is using them. I think little by little the positive word is spread.
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My onc agreed to let me try the cold caps, but patted me on the shoulder and said the following to me with big, sad, empathetic eyes: "You can try them, but you WILL lose your hair, my dear".
Well, my dear doctor, I most certainly did NOT lose my hair!
ha ha ha
Proved him wrong! He changes the subject when I bring up that I still have my hair. Other than this issue of not wanting to admit he was wrong, he is FABULOUS. So I stay with him, but can't resist digging at him about my hair every now and again. LOL
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Thank you for your stories. Isn't it rewarding to be able to contribute to others, even during such a challenging time? When I realized that I could be helping to educate others and possibly make it more accessible in the future, I felt so much better and a little less overwhelmed. Each of you - us - is making a difference.
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Hey there cold cappers, and especially my AC girls! I finished AC #4 yesterday and my tumor is barely palpable. We are hoping when I do my mastectomy May 22nd that nothing is left but dead cancer and scar tissue. If so, I won't need any Taxol post surgery. Hooray and fingers crossed. As everyone knows, AC is a very hard regimen for the caps. I had fine hair but tons of it at the beginning mid-way down my back. I've followed all protocols to the T. So, I technically still have even coverage but have definitely lost 70% of my hair. I lose about 300 hairs a day still. My chemo nurse said it should stop shedding in 3 weeks and I might start seeing hair growth in 4. I hope she's right. Luckily, my hair grows ridiculously fast. When it starts coming in, I will definitely need a shorter cut to blend the 70% of my hair with the 30% remaining so I don't look like Joe Dirt, but so far, I haven't needed a wig. I am wearing lots of loose newsboy caps in public. Would I say I'm happy with my results? It's a reluctant yes. Would I do it again? Yes. Even though the AC is harder in the body and the hair, I can confidently say I did everything I could to get well and keep my dignity. Thank you ladies for all of your tips and tricks. You are all amazing.
Now for the $64000 question: silicone or cohesive gel implants? Hmmmm. I'm thin-skinned, generally thin, tall and currently a 32 C/D. I know there's another board for this but I like YOUR answers so much better!!!0 -
txsockmonkey- congrats on your success! and getting through it. Feels great on the other end, huh?
To all the gals still going through chemo- you WILL get here- there is light at the end of the tunnel. I found it interesting that, for the first time in my life, I felt justified in putting myself first, and indulging myself. Everyone around me agreed and helped a lot. So if you look at it that way, yep chemo sucks but it is time to make life more about what YOU want and need, as much as feasible of course. As women and caregivers, most of us seldom put our own needs first.
Now as for the question of what type of implant, I cant say much because I dont even know what cohesive gel implants are. I have the tissue expander in and it is healing up nicely- it is just funny to have one breast high and firm like in my 20s, and the other one at a normal level. but later we will hitch the right one up a notch to match.
I was only offered the silicone implant, or the flap reconstruction. I did not choose the flap because I would be down so long afterward trying to heal. With a skin-sparing mastectomy and expander implant (with 500mls saline injected during the operation) I was able to go back to work after a week and a half, drains and all, and resume life (I LOVE my job and workmates). when i wear a bra to even up the sides to the same level, it looks normal under my clothing. Thank goodness for the advances in these surgeries! And I have my hair thanks to penguin caps, so no one needs to know what I have been through, unless I feel like telling them.
Hang in there everyone, it is a scary and uncertain journey but also an interesting and life-changing one. I am glad we have each other to chat with, and learn so much.0 -
Dancetrancer, that's awesome! I'll do that on Tuesday when I wash it next. Thanks!!!!!!!!!
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sockmonkey, I've been wondering how you were doing. The last I heard, you'd had some hair loss and were fearful. I'm THRILLED for you that you made it to the other side with hair. Score another one for cold caps. I start on AC on Thursday and will be treading in your footsteps. Thank you for being one of many who have paved the way for us.
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Just finished practicing with my cold cap helpers. It went pretty well. I'll definitely need the gel bands because we could tell I wasn't getting good coverage in the back with just the cap. I must have a big head! I have a great team and I am so thankful for their support. My first treatment is on Thursday and the possibility of keeping my hair has allowed me to approach this with a positive attitude. I was first diagnosed in September so it's been a long road. It's time to finish this and get on with my life. I've been following the progress on this forum of those recently using the caps. Thank you for sharing your experience and tips.
shipsgirl, we're in this together. Good luck
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Good luck this week, JC! Sounds like you are all set with your practice session and team in place...the caps will really make the day fly by. I wanted to comment on the timing of the first cap...I think for best results there is something to the 10 mins into a cap that matter...I was told that if we did the first 2 for 20 mins and then wouldn't be ready by 10 mins into the 3rd one, to keep the 3rd on for 20 mins and then start a4th cap, start infusion 10 mins into that cap...only happened one time when I had an IV problem...all the other times, things were fine and the nurses were ok with waiting until the exact time to start the drugs...my premeds were 40 mins, so my husband would let them know when we were about 2 mins from 'start time' and they'd come back into the room. I'd say to check on the 'what if' with Geralyn or makingway to see if they can clarify because I think there are a few opinions and maybe more than one approach is possible. Hope it all goes smoothly for you!
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Today is day 18 post chemo #1 with PCCs. No shedding from my head, but major shedding in other areas. Am glad it hasn't started yet on my head but I am starting to get nervous! Anyone have any positive thoughts for me? I just read on the March chemo board (non PCC'ers) of someone who's hair on her head fell out majorly on day 20 and 21...ugh.
curly
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(((Curly))) I have wondered how that will feel when I get close to day 21, which seems to be the magic day. But you will sail right through those days, AVEC hair!!! It's just your mind playing tricks on you. Don't listen to that "voice"; it's not your friend. Your friend is "hope". Keep that friend very close for the next few days.
And remind me I said this in about 25 days!!!!!!!
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lol...thanks shipsgirl....I will remind you indeed! Thanks for the pep talk. Every hour with hair is a blessing! My son's friend's mom was trying to set up a play date this week....and I'm thinking in my head (she doesn't know what i am going through)...."will i have hair/be able to have her child over without excitement happening on my head?" I hope so! I will hang on to the hope shipsgirl, it's all we can do, right?!
Do you start on the 18th? My round 2 is on the 18th. I go in on the 16th to have a pic line put in. Not looking forward to that. They say they will send a nurse to my house weekly to check in on it.
big hug,
curly
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curly and shipsgirl - making it past the first treatment into the 2nd is the worst regarding the worry monster. You worry with each tx, but it gets less and less. Hang in there...your hair will, too!
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Yes Curly, I start on the 18th. We can send mental encouragement to each other. I haven't fully gotten my head around the cap process yet, but I will, of course. Fortunately I live fairly near the Cancer Center so I can get home between cap changes and finish the after-infusion time in my own home.
Thanks dancetrancer! It's always good to hear those encouraging words from someone who's done it. Yay for keeping our hair!
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Dancetrancer - thank you! So glad you kept your hair!
shipgirl - I did the same. Went home after infusion. It was a bit of a hairy ride home. We had to stop off for more dry ice as we wanted to be sure we had enough AND there were a couple of cap changes in the car due to rush hour traffic...but eventually we made it home and we finished up there. I found the chin straps troublesome and hard to eat with. I took a bunch of snacks. The yogurt was easy as was the broth from my chicken noodle soup (to keep me warm), but I couldn't handle chewing the noodles with the chin strap! Broth this week; not noodle soup!
Have you practised yet? Have your helpers all set? Another tip - ask your dry ice supplier if you can return any left over dry ice. Mine never actually did this before, but made an exception for me, given the circumstances, which was a bonus. So the next day, I took back the left over ice and put some cash back in my wallet!
xo
curly
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Curly and Shipsgirl,
I go for my 5th treatment on the 18th and I still have the majority of my hair. Nobody, and I mean nobody, knows that I am on chemo by looking at me. My DH forgets because I look so normal to everyone. It is a blessing to be able to use these wonderful caps to keep our hair. I do shed, but a little more than what I used to see before using the caps so needless to say I am very pleased. I also have about 2-1/2 inches of growth since this process began and I can see it because I'm gray on top now. There has been much success by several women so I'm sure it will work for you two as well. Keep us informed on your progress. Sending luck your way!
Rhonda0
