Cold Caps Users Past and Present, to Save Hair
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OOPS, the link didn't go through...
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Is there anyone that would talk to me about this?? I start the 23rd...I have SO many questions?!
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Alibeths--I'm currently in my in the middle of my fourth and final treatment. Yippee-i-ay!! I wouldn't say I'm an expert but I've gleaned a lot of great info from these boards and all the superwomen. Who post here. So I'm happy to share the knowledge. What would you like to know? --Bethany
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Lori, congrats! You look terrific! Go be out in the world, sister. You made it. I have four weeks to go and can't wait to join you.
And U4iachic, so happy the Toppik worked out so well for you. It's really quite something. I'd be so self-conscious without it and yet, we don't have to be.
Tripper, glad to hear you're giving it a whirl and hanging in there.
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Lori - so good to see your post! You look great! I wish you the best!
U4 - Man, the toppix really works wonders! I actually ordered some after seeing your pictures. You are looking great! Congrats on being done with chemo! I'm so glad you got your port out so quickly after chemo. My doc wants me to leave it in until my surgery - which would be 7 weeks after chemo. I'm hoping to get that changed...
Tripper - Glad you are hanging in there. How is the Taxol going? I just had my first one yesterday. No SE yet. I'm hoping it will be better than the AC. Is it easier for you??
Alibeths - I'd be happy to answer any questions you have. Either post them here or PM me. Looks like you are doing AC-T. That's what I'm doing as well. I'm done with the 4 AC (dose dense) and have done 1 Taxol. 11 more Taxols to go....
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I will be starting carbo/taxotere on 4/23. I had a recurrence in 1 lymph node in my armpit! I cannot believe I have to go through this AGAIN!
My Qustions are:
1-Did you have 1 or 2 helpers?
2-How often and with what did you wash your hair before, and after chemo...
3-My place has the freezers, so I guess I need to go 2 days before and drop off?
4-Can you swim?
5-Can you pull hair back at all?
6-What did do when you sweat from exercising?
7-ANY other tips????
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1-Did you have 1 or 2 helpers? You can get by with one helper. The helper also has to time and make sure to get the cap to the right temp a few minutes before you switch. Experiment with that before you actually need one, say at least ten/fifteen minutes before to see where the temps tend to be. (If the cap comes out at the right temp, just return it to the freezer till you need it. If not, time it to see how long it takes to warm up enough. If it's not cold enough, not sure what you do in a freezer situation.)
2-How often and with what did you wash your hair before, and after chemo… Two days before, three days after on chemo week. A lot of people use Dermorganics. I wash every other day. Some wash less. But don't wash too much less or you may get into trouble with scalp buildup and hair mats.
3-My place has the freezers, so I guess I need to go 2 days before and drop off? Don't know. We use coolers.
4-Can you swim? Way back when, one of the early cappers swam daily using a swimming cap that she very carefully placed on and off. You'd have to search the early threads for her. I'd use a silicone cap--easier to remove.
5-Can you pull hair back at all? Use only a scrunchy or other very light material and then only loosely. Don't knot it up tightly. Some people prefer a loose braid.
6-What did do when you sweat from exercising? I think people have used cool water to offset the overheating. I would maybe not get overheated within a couple of days after chemo, or until after your first postchemo wash. Others may want to chime in here, but that's when the chemicals are strongest and when you're at greater risk of reactivating them. Some people throw a cap from the freezer on after as well I think.
7-ANY other tips???? Use a capful of apple cider vinegar mixed with your shampoo to clarify your scalp when you wash. And try to relax. Shedding will occur. It's meant to. Only the young and middle-aged follicles are protected by cold capping--70% of your hair give or take. But for the most part it's diffuse shedding, and you'd be surprised at how much hair you can lose and still look good. Good luck!
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thanks for answering in such good detail pch - great answers! I second everything you said and here is my 2 cents to add....
2. I use the Unite and Oribe line of haircare products. I used Unite prior to starting chemo. Some days I also use the Sea Chi leave in conditioner. I wash my hair 2 times per week but rinse it 5 or 6 times a week and use conditioner on the ends those days.
3. My place has freezers as well. The CC rep did say it takes 48 hours for the caps to reach the proper temp using the freezers. Thus, cold capping is usually scheduled on Monday, Wednesday and Friday at my clinic. If someone wants to cap on a Tuesday or Thursday, and someone is already scheduled on a M,W or F, we are responsible for using dry ice instead. Be careful to not open the freezer any more than necessary or the temp will drop too much. Place your used caps (once cleaned) on a stack outside of the freezer and then replace them all back to the freezer once the day is done. This is recommended by my CC rep in order to keep the best temp in the freezer.
5. I pull my hair back using only an 80s style scrunchie when I exercise or I wear it braided. I don't use headbands or other hair ties.
6. After exercising....I run 5 days a week (20-30 miles) and have a very sweaty head when done. I rinse in cold water and apply conditioner to the lengths afterwards. If I am running at home on a treadmill, I have a spray bottle that I use to lightly spray my head with cold water when I get hot. I have also mixed in apple cider vinegar to the spray bottle when I was going through a period of my scalp getting crusty and flaky. It really helped. I do have a cap at home to use after exercising, too, but frankly the thought of putting it on when I'm not having chemo makes me sick.
7. Tips - use a silk or satin pillowcase. Don't use a bath towel on your hair. Use a special hair towel or old cotton t-shirt. The fibers are easier on your hair. Research Silica & Biotin supplements. I take them and think they have helped me. Along those lines, Fiji Water supposedly has 4 times the amount of Silica in it, as a trace mineral, than any other water, so that's the water I pound daily. I shoot for 90 ounces. And like pch said, shedding is normal and will happen. Don't let it consume you. Just comb your hair once or twice a day with a gentle wide-tooth comb and then leave your hair alone. Good luck!!
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Thanks a million! I just ordered shampoo!
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I finally uploaded photo's of some of the women I've helped with cold cap treatment, using both Penguin caps and Elastogel caps. There are many more to upload-it's so time consuming, please forgive my delay! http://penguincoldcap.wix.com/help#!photo-gallery/c1zh7
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I'm starting on this fun adventure and attempting to soak in as much information as possible. I'll def be back with a million questions, I'm sure. But this thread has been amazing, has also helped ease my insane anxiety slightly too. I'm a very introverted person when it comes to my health so when I heard that I will be needing chemo, just the thought that 'omg everyone will know I'm sick' has me bursting into tears on a regular basis. I feel like that sounds so vain but I'm not sure how else to explain it. I know after some of this initial shock wears off I'll be in a better mental state and will eventually be a stronger person after all of this is said and done.
Anyone else from FL in this thread? Would love to chat with someone in the area too!
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Im in Broward COunty Stef! Where r u?
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Hey Alibeths! I'm in Orlando.
I don't have my treatment plan just yet, tomorrow I have to make an appointment with the oncologist and will be using the docs at MD Anderson (hopefully). Anyone else have any experience with them? I feel like I'm doing this all backwards. Went to the gyno, told her I found a lump, she referred me for a mamo/ultra, saw the general surgeon who almost immediately biopsied it. A week later I was in surgery for the lumpectomy and sentinal node, and boom. Up until the lumpectomy and SN, I was told over and over that this doesn't seem serious and all I'll need is radiation. Now I need to go see an oncologist and chemo is now thrown into the mix since the cancer was found in 1 of 5 nodes.
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Hi Stef
My experience was similar. My diagnosis was DCIS until after lumpectomy. Then it was stage 2 with 1 lymph node positve and that's the first time chemo was mentioned. I've only finished 1 of 4 chemo rounds, but so far so good. Just had my first big "shed" this weekend. It's very weird but I still have lots of hair.
Hope this little bit of info helps. Happy to answer any questions.
Carol
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Hi Steph,
We go to Orlando all the time!! My 5 year old LOVES! Are you going to travel to Tampa for treatment??? MD Anderson is amazing (i have heard)...Let us know what the MO says.....
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Next time you come by let me know! Ha, that sounded kinda creepy, I swear it's not! So I just found out MD Anderson and Orlando Health ended their relationship but all of the original docs are still at Orlando Health. I'll probably be going for treatment here in Orlando, depending on what they say. I've been debating heading to Tampa for yet another consult but I'm not sure I want to travel to Tampa for treatment, esp since Orlando Health is right here too.
I have my first appointment with the oncologist Monday morning bright and early so wish me luck! I'm still hoping this is all a bad dream and they're going to be like 'oh! we mixed up your results with someone else, no need to worry!' hahaha *sigh*Don't mean to hijack this thread everyone, I promise I'll have a million cold cap questions soon.
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Sweetmom, I'm in Miami and will be starting chemo soon. Where did you have treatment and used the cold caps? I need to find a new oncologist that is not against me trying the cold caps.
Anyone else in the Miami/Ft Lauderdale area that used cold caps and can recommend where they had their treatments done that did not oppose using the cold caps?
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I'm in ft lauderdale !!!!
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Alibeth, did you use the cold caps? If so, where did you have your treatments done?
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Dancetrancer I reported to client relations and told the lady not to escalate matters ... I still get treatment there. But have to say the way the nurses treat me I'd say they all know what happened. ( it appears I am the only one who has used penguin caps in this CTCA). Can you believe that? If things don't improve I will have to get another cancer center. Too bad. Cuz my onc is super
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U4iachic I am node positive like 20!
Tripper4yav I had a bald spot up front. Grew right back in when I was done with chemo. I agree with MDG COMMENTS.
So glad I did the caps
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VM-
I haven't started yet, but will be going to Memorial. How about you????
Also, Can any experts tell me freezer VS dry ice? WHich is better
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Alibeth, I confirmed that Memorial has the freeze and called today to get an appointment. I went to a Baptist Hospital oncologist yesterday who told me he had never heard about the caps and doubted such a thing would work. I did my own research and will be giving Memorial a try. How about you?
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It looks like I probably will be getting 4 rounds of TC. I was already really upset about losing my hair but now am totally freaking out about the fact that 6% of people have permanent hair loss with Taxotere.
It seems like there are a few different companies and options for cold caps. How did you decide which to go with? Also I am probably starting chemo late next week. Can I even get cold caps in time? I called my nurse navigator to find out cold caps options at my facilty but haven't heard anything back.
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melb, I haven't started yet either but I have read on here that PCC can overnight you caps if needed. I would call ASAP to see what they can do? As for which caps, I'm not sure. It seems like most women in this thread have been using PCC but I've read success with the Elastocaps too, or whatever they're called. Those also seem to be cheaper?
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Melb44--I am getting 4 rounds of TC AND USING Penguin Cold Caps. I go for treatment #2 tomorrow. Although I had about 4 days of "shedding", I have lots of hair left. No one can tell I've lost any hair. I will continue to have shedding days after each treatment but feel confident I will have plenty of hair in the end.
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I used PCC's. Photos on my blog. Most gals here have used PCC's, but
there are a few girls that have used others with success. You can get them quickly - they will Fed Ex them to you.0 -
I had my PCCs fed exd overnight after a last minute chemo decision. Did TCx4, finished with a full head of hair. Shed for nearly 6 months after, but lightly and all over evenly. Am now 7months pfc, and still with a full head of hair. I didn't even have noticeable thinning anywhere - a really terrific result. Caps work, at least for most on TC from what I can see.
My facility had a freezer. Made it a million times easier - no messing about with dry ice and coolers, and the temp was always correct so no need to mess about with thermometers either. Also facility kept the caps between treatments and loaded them into the freezer before each one. White glove service :-)
Chemo was a tough time for me, but a lot less tough since I never 'looked' like a cancer patient - I am convinced this made me feel less like a cancer patient. And very few people at work knew I was in treatment (mixed blessing - no one cut me any slack either)
I am a huge CC proponent. You new ladies have totally got this!
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Another quick note about freezer vs dry ice. My dry ice (80 lbs) is about $50 per round. Luckily the dry ice warehouse is close. At Kroger it would have been twice as much. My center didn't offer freezer.
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https://www.youtube.com/watch?v=o7l3T1SkkD4