Cold Caps Users Past and Present, to Save Hair
Comments
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Hello to all newbies, I'm on Taxotere, Carboplatin and Herceptin- 6cycles. I'm stage 1 and started chemo Nov 2nd. I'm 2 weeks post my 2nd treatment and still have all my hair. Very little sheddind, minimal. I don't wear caps in between treatments but I rinse with cold water every other day. I noticed that I shed more after I wash which makes me nervous but then I look in a mirror and I see all this hair on my head and think ok I just lost some of it but at this point I shouldn't have hair at all then I put my 5 yr old daughter hair in pony tails and she looses more than i do lol....
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mje123 - I also had one cap tear at the seam and then did a thorough inspection of the other 13 caps I had and found 1 other cap that had a seam that looked "stressed" (LOL). Frank sent me 3 extra caps -- of course this was last summer and caps were more plentiful then. I must admit I would have loved to have only dealt with 8 caps.
Although I didn't do it often, it is recommended to wear the caps straight from the freezer a couple of times during the week to simulate hair regrowth.
Colleen
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Tomorrow is my big day! I have been re-rereading the threads---Still confused--what is the ideal temp for the caps when it is to go on your head-----I have read 25-40degrees centigrade????
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Sashasz3
Did you get info from Frank on temp and timings? My email had a temp.
My temp is -32 C and so is my friend from work. We both considered ourselves thick hair people and hair is shoulder length.
We go with caps that are 29 to 33, as its never going to be perfect. Some areas of caps get colder than others. We check temp when first take out and make sure its colder than -32 because kneading takes temp down. Then check after kneading is almost complete. If it gets too warm like 27, we put it back in cooler flat wrapped in towel for a minute or two. Make sure helper takes new cap out about 4 or 5 min before timer goes off so there's time for kneading and to put back in if needed.
Hope that helps you!0 -
Sashasz3
Did you get info from Frank on temp and timings? My email had a temp.
My temp is -32 C and so is my friend from work. We both considered ourselves thick hair people and hair is shoulder length.
We go with caps that are 29 to 33, as its never going to be perfect. Some areas of caps get colder than others. We check temp when first take out and make sure its colder than -32 because kneading takes temp down. Then check after kneading is almost complete. If it gets too warm like 27, we put it back in cooler flat wrapped in towel for a minute or two. Make sure helper takes new cap out about 4 or 5 min before timer goes off so there's time for kneading and to put back in if needed.
Hope that helps you!0 -
Hi all,
I noticed there was a notice about the San Antonio Breast Cancer Symposium at the top of BC.org where you could post a question for the Symposium. I posted one about Penguin Cold Caps and the research they have done on them also letting them know that I used them with success on TCH. FYI...
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Frank did send some email--nne stae a temp--Just' Cindy Blacks info ' and when to start the caps--I have read read and re reread---Thanks for getting back to me!
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wow i have a lot of catching up to do!
Colleen, congrats on being done with rads!
Ang congrats on being done with herceptin!
Michon! one left so excited for you!!
Sash-- you can do it! after the first one it is truly smooth sailing! you will be great!
Cat- my mom and i do the coolers and caps just the two of us each week with no problem i recomend having your helper practice before chemo day and watching the video so your not wondering if your doing it right. my herceptin is last so i count that towards 'time served' as i like to call it! lol! you will get the hang of the timing after the first day. as soon as my nurse takes my blood we start the caps she takes about five minutes to get back and start the first pre-med and then my pre-meds are 45 minutes so if we need a few minutes before starting the chemo we just ask to wait a minute i had one week we were behind not sure why but i need 10 more minutes before she started the chemo so she gladly added a ten minute of saline to buy me more time in my pre-freeze!
i am 3/4 of the way done with taxol and herceptin weekly. i have officially worn 96 cold caps! AND HAVE NOT LOST ANY HAIR!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!! four weeks to go! and taking the day off tomorrow to rest, i havent missed a day of work yet minue infusion days and i feel im due for a day on the couch! sending the little guy to daycare , my husband to work, and having a day with my dogs and daytime tv! have a great week everyone and welcome to all the newbies!
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Enjoy your day tomorrow, jpmercy~
You deserve it!
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Folks on this forum,
I've developed a useful brochure that provides a codified shopping list for coldcaps and hair care, instructions, as well as a Tips Table for combating a host of chemo side effects. Am happy to share this material, and can send it as a pdf via email.
Anyone interested, go ahead and PM me; then we will exchange private emails.
Completed treatments last March; Caps worked to maintain hair against the 6 x taxotere/carboplatin regimen. Latisse(I use the Generic!) also achieves excellent results on lashes and brows. Returned to full-tilt salon coloring 2.5 months after ending treatment. All is peachy.
Amazing how we are still fighting the battle to convince scores of health practitioners that this system works, and is safe.
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mtri1111~
All is peachy? I hear that. Good for you!
Any luck with reimbursement from insurance?
I am having a heck of a time between BCBS and Frank.
He has given me receipts and they want more.
I just want SOME money back...
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For the wonderful Ang, and everyone:
I am doubtul that insurance will compensate any of the caps expenses. The only thing covered is a wig (one per year) and only up to $350. ( ie, a halloween wig, as far as quality!). This will also require the physician's prescription for a cranial prosthesis.
Ironically, I have still for sale the VERY expensive wig AND a fall that I purchased (and never used) before learning about the coldcaps. I'd love to sell them for a deep discount, but MUCH prefer folks to use coldcaps, and have no need for them!
If anyone has had succes convincing insurers that the coldcap is a cranial prosthesis, that is a start, but still $350. doesn't go that far.
I hope no one has been unable to use the caps due to financial hardship.
btw ,someone had written about using Elastogel.. they do NOT work.. a terrible experiment, bound for failure. Elastogel caps and eyemasks are good for relieving headache pain, period!
-MT
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MT - my oncologist (who is now a supporter of PCC) just wrote the words "cranial prosthesis" on his prescription pad. I have a PPO plan through Blue Cross. I called the insurance company before submitting the claim. The insurance rep looked at my coverage and interpreted the plan the same way I did -- I should get 50% of my costs back. After finishing using the caps, I got a receipt and sent it and the prescription (copies actually per advice of the insurance claim rep) in early Oct. In early November I followed up and was told the claim had been sent to the Benefits Review Division because the receipt was in foreign currency and that it could be in that dept up to 15 Business Days. Earlier this week I called to check the status of the claim and was told it had been moved from Benefits Review to Processing. The rep didn't know how much I was being reimbursed. As soon as I get the money, I'll report back.
BTW--I PM the person who had posted a few months ago about using the Elastogel caps. I didn't get a reply.
Colleen
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Hi everyone,
I have not posted to this section in the forum before as I could not find it, very glad I have. I started my tx's on 11/17. I have DD AC every 2 weeks x4 then Taxol DD every 2 weeks x4. I too was given only 8 caps. This seems to work with rotating caps. My husband and sister are my helpers. I don't know how it would be without them, they are both quick and efficient. I am the only one at the cancer center who has ever used them. I think they are all very skeptical, but non- judgemental. I am currently on day 23 and have a lot of shedding. It is all over all of my clothes all the time. I feel my hair looks so thin. Frank said with my tx I could expect to lose 25% of my hair. I am not sure if that has happened and am frightened as I shed everyday. Has this happened with any one else?. I don't think anyone who didn't know me would necessarily notice I think I look like someone with very thin ,dry curly hair. It's frustrating as I always use a flat iron so I look so different now.Does anyone experience this type of shedding everyday? It only started at about day 17 or so. Any input would help, thanks!
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Hi everyone ~ I'm freaking out a little bit - but haven't stepped back to the ledge YET!!! I'm on TCx4 and have been shedding a lot the last three days. I am a little over a week post Tx#2. (Day 29) And having some pain -- little twinges on my scalp - and scared it means its going to fall out. I really had no shedding between #1 and #2. Please help!
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Randi64 - your shedding sounds like my experience -- it really started coming out by Day 17. I did 4 TC @ 3 weeks (July - early Sept) and it seemed that shredding continued until after treatment #3. My hair is much thinner, and for the past six weeks there is new growth filling in. I certainly miss my thick shoulder length hair; but truly appreciate having a fully covered scalp with hair that reaches my collar. I had two hair cuts during this time. Each time taking at least 3" off the ends in order to improve the appearance of hair. In all honesty what probably bothers me the most is being white/grey. My hairdresser can't wait until she can start coloring my hair again.
Lmflynn- No need to go to the ledge, I have never read anything in these threads about pain associated with hair loss. Otherwise the shredding sounds pretty normal to me.
Colleen
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Thanks Colleen ~ I'm just so anxious....is freaking me out a little... its seems like a lot more than I've been experiencing....
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Lmflynn-one of things that helped me was noticing before I started chemo how much hair I shed. (FYI-I have cocker spaniels in show-length coats and my husband would claim I shed more than the cockers). Knowing that I normally shedded a lot of hair gave me a comparison point. Now once the chemo induced shedding started it was significant! My hair seemed to fill the bathroom sink and I thought I was going bald. While I had no area that went completely bald, there was a spot that under the top hairs was bald. It was obvious when my hair was wet because you could see the pink skin, but because the top layer of hair remained you couldn't tell once the hair was dried. And the bald spot filled in 6 weeks PFC.
Colleen
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Colleen Thank you so much for the feedback! I feel like everywhere I go I see my hair all over the place! It's very frightening every morning when I wake up I feel around my head to see if it's still there. I hope that it starts to slow down. I'mthinking of cutting it so it doesn't look so bad, but Frank apparently advises agianst it, so not sure what to do. I guess there is nothing I can do to prevent this I will just continue to hope it gets less. Good Luck to everyone!!!!!
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Randi64 - I know that Frank advices not to cut your hair because the weight helps the hair lay flat under the PCC and I followed that advice for the most part.
Background: In early May I had my monthly trim/dye for my long, shoulder-length hair. The next week I got my BC diagnosis by the time I started chemo in early July I was two months past my last hair job. My ends were getting pretty ratty looking but since Frank said to not to cut/dye, I didn't (plus, I wasn't working so it didn't matter what I looked like). In late August I had an event that required me to tidy up my ratty looking mop of hair, so I had at least 3" trimmed off, but no dye job. This still left me with hair that touched my shoulder and could be pulled back into an attractive ponytail/bun.
Chemo ended in early Sept. It really had a drying effect on my hair. My hairdresser convinced me in mid-Nov to let her "clean up the ends" so that it would look thicker. She took at least 3 inches off, hair now reaches the top of my collar and barely makes a pony tail. But she was right -- it does look better because it appears to be the same thickness all over my head.
Colleen
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Folks concerned about hair coloring:
For hair color, try the Loving Care LEVEL 1 (no ammonia and no peroxide) stuff. it lasts through about 7 shampoos and with the fewer shampoos you do while on coldcaps, this is a good solution for those who find Colormark is insufficient.
I returned to full scale salon coloring and highlight 2.5 months after final treatment.. all is great. Hair is terrific.
Girls.. there WILL be shedding and thinning throughout, and yeah, it is disconcerting, but your hair will stay, and you will be coldcaps success stories as are essentiall all of gals on this site.
For dryness.. Sea Chi hair creme. It is pricey but LASTS.. and excellent product. Order on amazon. com
Use as a supplement for spray- in hair conditioner such as Alterna, used after each shampoo before combing out.
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MT~ Thanks for your suggestions. I'm not sure I'd be comfortable coloring my hair with anything during treatment. Frank Fronda has been pretty adamant that this isn't a good idea. He has mentioned what is OK for one could be toxic to another so very glad that you have had success doing this ~ but would hate to do it and then have it interact in some way. Also, believe he and others have also suggested to wait 12 weeks PFC to color / highlight your hair with anything harsher.
Hope that I have as positive an outcome as you did.
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I haven't started chemo yet but I will in a few weeks. I am having DD ACT so I will go every two weeks. I haven't had any chemo 'classes' so I don't know what to expect. If I use the cold caps, how many hours in total do I have to wear them that day? Do I start putting them on once I am there?
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Cat123
It's the entire day of chemo, about 8 hours. You wear the caps about an hour pre-chemo, during chemo and then 3 - 4 hours after depending on what Frank recommends for you. My appt is at 9am and we finish around 5:30 or 6. Definitely a full day, but worth it to have hair.
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Well gang I am still hanging--I am doing so much better than I ever thought--I did tx one TCH dec 9th--will my future ones be worse?? Did the neulasta friday no problems--go back thursday for the next herceptin---doing the caps daily--for 20 30 30--out of the freezer---just wondering if the bad stuff (Se's) are cummilative? I feel like maybe I should be feeling lousier?? Good meds I hope ???
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Sashasz3 - sorry to be the bearer of bad news, but yes, the SE are cumulative. At least for the chemo. I didn't have neulasta shots.
Colleen
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Does anyone know, if someone has already had their first of 4 TC infusions, is there a possibility the cold cap would still work? Someone I know started chemo this week, before I had a chance to mention the cold cap to her (which I've only read about since doing chemo in 2008), and I feel conflicted about mentioning it to her now. It would be great if it could save her hair, but if it's too late, it's probably better not to mention it.
As far as SEs being cumulative, I'd say it's more the fatigue that's cumulative. With TCx4, the SEs and their pattern were pretty consistent for me -- maybe with an odd new one thrown in each time (like teary eyes or runny nose) -- but the fatigue grew considerably. OTOH, there can be wide variations, and many women work throughout chemo and do just fine. The one thing you really want to be careful about, especially at this time of year and even if you're on Neulasta, is being exposed to viruses & other bugs. I was on Neulasta and still got sick (like bronchitis) right after my last infusion. I was so miserable, and it took weeks to get rid of it. So just be extra careful about hand washing, crowds, and all that. Deanna
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Hi Deanna-Unfortunately once the chemo has circulated to the hair follicles it cannot be reversed. I wish you had known sooner...I live near you and could have helped.0
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I wish I'd known sooner, too! But thanks for answering my question. Darn, I wish we could have helped her. Deanna
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sashaz3~ Yeah! You made it through your first treatment -- and sounds like with minimal side effects so far. On the side effects, my sister went thorugh TCx4 last year and she said the same thing -- fatigue got worse but no other SEs. I'm through #2 and this time was actually easier on me than #1 and I'm 11 days PC.
Hair is still shedding much more than it has....I try not to freak out -- b/c in the mirror it doesn't look any different. Yesterday just a little then today more... I'm trying to trust the technology and success of everyone! (still counting days -- Day 32...still have my hair!!)
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