Cold Caps Users Past and Present, to Save Hair
Comments
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sebm9,
I have been trying to get in touch with the founder of Penguin Cold Caps (Frank) via his internet connection for California Medical but to no avail. The only company that is coming up is the Penguin Cold Caps out of New Zealand. Could you help me out with this? I begin my Chemo on 10 August 2010 and I am try desperate to get these ordered, practice, and use during all my treatments. Thank you for any help,
Lacy
cell 979-575-9415 Texas
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Hi Lacy,
Here is the correct link: www.msc-worldwide.com/
It's great that you have 4 weeks until treatment. That should give you plenty of time but definitely get in touch with Frank ASAP to get the ball rolling. It can be hard at times but believe me he will call you. He's amazing.
You can now add me to the list of PAST USERS - woo hoo. I'm done. What a wonderful feeling. Even though I know I am still shedding slightly from my last treatment 3 weeks ago which means I have to wait about 4 weeks for shedding to end from this treatment, I have confidence that this process has worked for me. The only thinning I can notice is the sideburns (one side more than the other but still not bad). The rest of my hair is truly fine.
Thank goodness I'm going to LGFB class on Thursday. By then I will most likely need eyebrow help. They have been thinning but up until a couple of days ago they looked nice. Now the right one has a couple of small bald patches and I'm sure the left will follow soon. I am still on a steroid high - I must be since I slept about 2 hours last night and don't feel particulary tired at the moment after a long but very successful day of chemo/caps. I'm so happy for my 2 helpers that I am done!!!
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Hi cold caps users.
I went to see an oncologist today. Same one Drim uses so she was fully versed in the caps. She told me, based on the regimen she was prescribing the caps had only a 50% chance of working.
She wants me to do Adriamycin and Cytoxan every 2 weeks for a total of 4x the taxol every 2 weeks 4x. 16 weeks altogether.
Has anyone on here been on such a regimen and used the caps successfully? I'm so despondent right now....
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There are people on here who did your regimen and had success. I know they had some loss. The studies show AC people get about 25% loss. I did taxotere, which is similar to taxol but harsher, and had complete success. I am sure someone who did your regimen will post about it when they see your post.
Email the cold cap company. Frank Fronda will call you back and give you all the statistics. Don't lose hope!
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Frank just emailed me and said the following:
Dear Liz
I guess this is what Dr XXX believes. I have treated many patients with this protocol with great success
Please call one of the past users who was on the same protocol as you and hardly lost any hair I am sure it will repair the damage to your moral especially at this time. I will send you another tomorrow if required.
Please having said this I cannot guarantee success and your hair could thin.
Please let me know how you get on with XXX details below.
A suggestion ask XXX for her doctors telephone number and hospital and ask your doctor to give him/her a call the results may surprise your doctor.
I am not sure but your doctor was probably getting her info from a clinical trial done with our caps when the results were not 100% This was because the doctor doing the cold cap therapy did not do so in accordance with the manufactures instructions.
So please do not get worked up about this and keep calm and try not to worry a sleepless night only causes a lactic acid build up in your hair roots and cane cause damage before your chemo
XXXXXXXXX
All the Best
Frank
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Lacy,
I just tried the PCC website and there seems to be a problem at the moment. No wonder you couldn't get to the correct site. Hopefully this gets resolved.
Drim
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Congrats Drim on being done!!!
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yay Drim!! im so glad your done!!! i go for # 3 on friday, my emotions are shot and dont feel much like eating. that normal?
Zachsmom im on AC and going for my third tx on friday, 28 days and i stil have hair, it has thinned a lot but really only i can tell, i know it wiil thin more but im feeling good that it is working... dont worry!!!
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Drim,
I am elated that you have completed such a challenging path. With only having a diagnosis apprx 6 weeks ago this has knocked me out of my shoes to say the least. I have been an ER/ICU nurse for 20 years and never have I ever told a patient to lose faith in what he or she believes in. When that onco nurse just blantanly told me, along with a smirk, that these caps do not work but that I could use them I lost a bit of faith in the professionals that will be taking care of me. It became evident that they have never walked in any of our shoes. Frank has contacted me the last 2 days (very nice) and I will use these to the best of my ability and per his instructions. I will keep you guys posted and hope that I may be of assistance in the future to those that will join us all. Thank you ladies for responding and I have no doubt each of you will succeed in beating this.
Lacy.
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Lacy- My doctors told me they had no issues with the caps treatment wise, but, they said it would never work and I was wasting my money. They also gave me an rx for a wig and told me to go get one. Well, I decided to try the caps any way. I refused to go get the wig. I figured I could throw a hat on and go get the wig if the caps failed.
The caps worked. My doctors and nurses were very surprised. Don't let anyone who hasn't used them tell you they don't work. We lose so much from breast cancer, breasts, time, being sick from chemo, if we can save our hair, why not? For me it was so much more than the hair. It was one battle I actually got to win. I can not even begin to express how much that meant to me.
I am sorry your doctors aren't more optomistic. I hope you prove them wrong just like I did. That feeling of accomplishment will go a long way.
I wish you strength in your fight!
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Congrats Drim on being done!!! Yay you did it!!! Your such an inspiration...it's keeping me motivated! #4 was Tuesday, & we have had success w/the caps. Day 23, little shedding, but not too much; only I notice it. 8 more treatments to go; I just want to be on the downward count! So far, my eyebrows & eyelashes are hanging in there. I'm doing well with the weekly Taxol/Herceptin treatments. This chemo regimen seems to be a good match. They were able to lower my steroid use to 4, it has helped tremendously with the sleep issues. Still able to work my regular nursing shifts, and am still running everyday! Hope to keep it up, the running really helps with my energy levels. Those of you who have finished treatments, do you ever stop thinking your hair is going to fall out at any moment during treatment? I've had very little shedding, but I'm so paranoid! I'm doing everything Frank says by the book. Yep, I'm OCD...lol. Does this feeling stay with you the whole treatment period? There has to be some comfort in here :0)
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GAgirl01~
You know, I had my last chemo in March and there are STILL some mornings that I wake up and check my pillow to see if my hair has fallen out...
I hope this goes away.
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GAgirl, I'm 4 weeks out from my final chemo and have finally stopped worrying about my hair falling out. I still have some light shedding when I wash my hair, but it's growing back including my body hair. My eyebrows are coming in kind of blonde, though, so I'm using a little eyebrow pencil to darken them. But hey, I have no complaints!
To those whose doctors said it wouldn't work: I hear you! I've learned that about 15-20 years ago when "scalp cooling" became known, there was a system in the US of gel-filled caps which were tried which only worked about 30% of the time. Those are NOT the Penguin Cold Caps, whose innards are far more sophisticated, not to mention the regimen has been fine-tuned for each individual chemo regimen plus hair type. The low success rate of those old caps lingers with some of the longer-term staff, and when they hear "cold caps" that's what they think of unless they've had someone recently do PCCs. Forge ahead! every time your doctor warns you (as mine did up until treatment #3) "Your hair is going to fall out this week" just envision when you go in for your final chemo and your doctor comes in with a big smile, shaking her head, happy, hugging you because it really worked (as mine did). It is the second most gratifying thing, next to keeping your hair!
I just returned to work this week -- I direct a large volunteer program at a children's hospital in California and was public with staff and volunteers about my diagnosis, treatment, and PCC journey -- and I can't tell you how rewarding it has been to return to work, with hundreds of people as my witness that PCC's work! I was able to ease into my 'public' world either as a successful heroine (to those who knew my journey), and to those who didn't know my journey it was as if I'd been on a long vacation. I certainly wasn't a "cancer patient" or a "sick person". I'm just realizing how important that was spiritually and psychologically as I went through chemo and as I continue the next steps of adjuvant treatment and then the years of follow-up and monitoring.
I was able to call my wig lady this week and tell her "you know the wig you've been keeping in a drawer 'just in case'? Time to send it back!" I've never heard anybody so happy to NOT sell a wig!
Cheers to all, I'm headed to CT this weekend for a party and I have a hot dress and I have my breast sans tumor and I have my hair! I feel like a princess even if it's just ole me. What a gift is that!
Susan
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GAgirl - thanks for the compliment but I think you're the one who's going to be an inspiration to all that join this wonderful group. It sounds like you're doing great and I'm sure keeping up with the running and working is helping tremendously. Soon you will look back on this journey and wonder how the time flew by this quickly. I still can't believe this part of it is over.
I have to say for me, after I made it to about 30 days or so I was a true believer and never thought my hair was going to fall out so I don't really get scared. However, that doesn't mean I'm not very careful about what I do and believe me I will be very scared when it comes to the point of deciding to color my hair. I don't trust that process at all yet.
On Wed. when I went in for my neulasta shot, the nurse asked me if I would talk to someone who was just starting my treatment. Of course she asked about the hair and then she was upset/frustrated that no one told her about the caps and all the books she read said that caps don't work and there is nothing you can do to save your hair. This is very frustrating to me. I understand that the doctors can't really say much because it's not FDA approved but do the books have to be all doom and gloom - just awful.
Cheyenna - I hope you're doing okay. I think about you often. I know you have a tough journey but you can do it!!!!
Oh yeah - I went to LGFB class yesterday. It was very good. They gave us lots of make-up including an eyebrow pencil which I will be using. Hopefully a lot of the brow hair will stay intact so I just need to fill in but if not I will be fine with that as it will be so temporary. Lot's more stuff to do (herceptin, radiation, tamox) but this chemo part of over so I'm thankful for that.
Have a great day everyone. I promise I'll keep checking in.
Drim
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zachsmom: Sorry I haven't visited the site in the last couple days so I missed your post. I used the PCC's with the same regimen you are having (AC x 4 and Taxol x 4, every 2 weeks) and had success. My last treatment was 3/31 and my hair is still here. My oncologist was skeptical at first but now she is a believer, along with many other of my other doctors. I did lose about 20-30% of my hair but I strongly feel that was because of my own error. Feel free to PM me or call me at 248-236-9350 and I would love to answer any questions you may have. Take Care, Kelli
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Hi All,
7 days out from my last treatment and I still have hair! I have had some shedding, but it's not noticeable. Believe it or not, my biggest issue is my hair has kept growing through out treatment and now I am overgrown and in desperate need of a cut! But, I plan to wait out the full 21 days from the last treatment before doing that. The other thing is that my hair is really dry. Can't wait til I can really hydrate with a good conditioner again, but I'm waiting on that, too. I feel totally confident that my hair is here to stay, but I still feel like I should baby it for a while longer so as not to cause any patchiness. Silly worry, since I haven't had any kind of patchiness, but better safe than sorry.
Yesterday I had my port removed and the nurse commented that she had never seen anyone post BC-chemo who still had their hair. I told her all about the caps and she said she had heard they didn't work. I told her they do! they do! I think she is a believer now. I gave her the website info and told her to spread the word.
I am trying to come up with something clever to give my helpers (my sisters). They were troopers through all this and I could not have done this without them. Anyone have some cute, clever ideas for thank you gifts? I'd really prefer something that is NOT pink. Trying to think of a hair theme....
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GolferGirl: How about a ChiaPet? Just kidding....
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Kelli1970: A chia pet! That's HILARIOUS! I'm gonna steal your great idea! I've decided I'm going to throw myself a congratulations celebration, and that'd be a great party favor
Susan
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Hi all,
How does the cold cap work? Where do you get them? Does insurance cover them?
I will be starting 4 rounds of CT in August and would love to keep my hair. Does a doc need to prescribe this?
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Hi Shawn,
The caps work by cooling your scalp thus constricting the blood vessels which limits the amount of chemo that goes to the hair follicles. They seem to work really great with TC x 4. I just finished this regimen on Tuesday and have all my hair. You get them from Medical Specialties of California (located in the UK). There is lots of information if you read this discussion thread. You don't buy them, you rent them. Not sure if insurance covers them or not but I will try. You would need a doctor's prescription to have a chance for insurance to cover them but not to use them. You would need your doctor's permission but most seem to be pretty willing (although some are doubtful until the see the results).
Good luck and definitely come back here and we will help you get through it all.
Drim
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Hi Susan,
I'm in Portland, Oregon at St. Vincent Hospital for chemo. What hospital in the Bay Area did you go to with the Cold Cap. We used to live in San Jose. Had my babies there. How long does it take to get the cold caps delivered from England.
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Hi,
There are two shipping sites in the US. One in FL and one in So. Cal. I drove to the So. Cal. site and picked up my caps. Go to the Medical Specialties California (google Penguin Cold Caps) and you will get the information. Because the number of caps needed is based on the type of chemo and the infusion rate you need to fill out a questionnaire.
Colleen
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Drim,
What are the protocols after your last treatment in regards to the treatment of your hair? I know I can email Frank but would like to hear from the ladies that have actually gone thru this. I will be on 4 cycles of taxotere and carbo, first tx 10 Aug and last mid Octob. The Herceptin ongoing for the one year along with whole breast rad for some number of weeks beginning 2 weeks after last chemo tx. Thanks in advance for any advice.
Lacy
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GaGirl,
Hey there!! I read that you are running as well thru all this. As an avid runner myself I was concerned how the heat has affected, if any, your hair/scalp during all this. I did not know if you are wetting your hair prior and not running in any headgear, ect... Please let me know. I run at 0430 before work but Texas heat is constant and unforgiving for 6 months out of the year. Any advice?? How have the tx affected you energy, pace, feelings while keeping this up.
Muchas Gracias,
Lacy
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Lacy,
That's a good question about what I'm going to do to/with my hair now that it's over. I've emailed Shirley of the Rapunzel project to see if she has any advice particularly with respect to coloring which is my biggest problem. For sure I will do nothing for the next couple of weeks (until I'm at least 3 weeks out). After that I'm still not sure how long I will wait to get back into more of a regular routine. My hair is pretty dry at the ends. My last hair cut was mid-March and my hair would look terrible at the ends by now even without having gone through this so I suppose at some point I will need to break down and get a trim. I'm just not ready for anyone else to touch it yet. I think soon I can wash it in warmer water but that part never bothered me at all since my treatments were in the late spring/summer. Also, the shampoo/conditioners I was using previously were sulfate free so I can probably switch back to those. I'd just be a little concerned still about putting conditioner on my scalp.
Hopefully one day we will have a post chemo routine as put together as our cap routine has become!
By the way, I'm also doing Herceptin so I'll be curious to see how my hair will grow on that. I've only been on Herceptin a little over a month so far but it does not seem to be affecting my nails so hopefully it won't affect my hair either.
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Hi Shawnlo,
I was treated at Alta Bates/Herrick Comprehensive Cancer Center in Berkeley; the caps are something I brought to my treatments, they are not yet available at the center (this is very common as there are but a handful of hospitals that have caught on and have the freezers/caps available in-house). It was a little work organizing the coolers and dry ice, but not that big a deal compared to the results received. The caps work!
I hope this changes soon. I was at a friend's party last night and was able to spend quite a while speaking with the recently retired head of oncological surgery at Memorial Sloan Kettering in NY; he was extremely impressed with the concept and actual results of PCCs and I'm sending him (and many other people at the party, many involved in cancer work) info. I can't tell you all how much it meant to be able to go to this party with a full head of hair on my head.
Hope this helps!
Susan
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Hi PCC sisters! It's great to see so many here and all seem to be having great success!!! I was one of the early users. I started TCx6 in July and ended in November. Because I have a very large skull, my most substantial hair loss was at the nape of my neck and most of it came out after my first treatment, because that area was insufficiently cooled (i.e. what was going to fall out, did so in the 1st cycle so shedding was much less later on). Now that it's several months out, that hair is growing in very curly whereas the hair I kept is straight. I also lost side burn hair and some of my bangs, all of which are growing back.
My biggest problem is the condition of the saved hair. It is extremely dry and brittle, making it very difficult to style. I've already cut it to the shortest cut I've ever had as an adult, but am considering cutting it even shorter. My hair was pretty fine and I think the combination of using baby shampoo and the sub zero freezing dried it terribly. Does anyone have any product or process suggestions to get it back into condition?
I'm on Femara, which is supposedly hard or hair and will also be getting Zometa, which I just read here today also has the possible SE of hair loss. Now that I'm through with all of the major tx (just finished rads 3 weeks ago), I am really looking forward to life returning to normal.
Best wishes to everyone here for successful cancer treatment and saving your hair.
Lori
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Now if this wasn't just the nicest thing
I was talking to my sister last night. My sister is a "sponsor" of some of my "Penguins". Recently, she visited a long time friend who knew someone else who had used the caps successfully. The friend (who I only meet a couple of times) wanted to help and is sending me $30.00 to sponsor a Penguin for a month.
What a nice surprise!
Colleen
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Hey ladies~
So, I did color my hair but I really want to do highlights...
It's just that my hair seems to be in bad shape and it would probably be a bad idea.
Can someone talk some sense into me?
Also - side note -
Everything makes me cry.
Dropped daughter at camp yesterday and I was about to cry, not her.
I never used to be this way. (Except when pregnant)
Right now I am not taking anything but Vit. D
Is this the new me? Hope not.
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Lori -- My standard "deep treating" hair condition is called "it's a 10" Miracle Hair Mask. I get it from my beautician. I know we have been referred to some organic products, but I just haven't gotten that far.
Colleen
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