Cold Caps Users Past and Present, to Save Hair
Comments
-
Hi Howard
Congratulations on your first chemo being done. I believe the standard is to take claritin for 5 days. That is what I do. Regarding the frozen peas my understanding from my chemo nurse is they advise the use during the taxol / taxotere. I do pre cool and I also use them during the rest of the infusion. My reasoning is I use cold caps after infusion ends why not use peas and cold mittens longer too just for added insurance. Best of luck to you..0 -
Hi all - I had my oncology appt yesterday. I met with my nurse the longest, she was on the Good Morning America piece, as well. I asked about why more people are not doing this treatment. She shared that it is not for everyone. Specifically, those that have to do the AC followed by T, which is harsh and a very long process. They had one failure which she spoke of. Additionally, the money is a factor for many of the patients. She did explain that the information is given to all patients in chemo class. She also mentioned the time and effort. Many people are going through BC with minimal help and this process takes a commitment.
Side note: it was presented in chemo class to a group of patients, everyone laughed at the length of time that it would take and said "who would do this???" I am her2+, therefore doing TCH, which is only six cycles. Remember this "easier" chemo is for her2+ which is only 20% of the BC pop, so statistically, I was probably the only one in that room of 5-6 women with this and the shorter chemo cycle.
So, the onco clinic believes they are doing everything they can to offer this. My onco did come in, but we had so many things to discuss, we did not tackle the cold caps issue...
I have to go do some testing for a trial I am in...gotta go!
Annie
0 -
Hi all:
To mtri111: Finally got to see your video on Oprah. Really great-you sure are a trail blazer! keep it up. Imagine, a whole new career and very prolific and talented at that, and still doing your other careeer. Who says we have to slow down as we get older?? I think we just get better!!
Nancy
0 -
Ang7 - I seem to remember in this thread some women who had some variety of Blue Cross that evidently got some coverage money. What I had planned to write in my appeal letter was how the prevention of chemo induced baldness was a cost-effective treatment for two reasons: (1) avoiding demalogical issues related to hair loss and (2) decreasing need for counseling services because women who retain their hair have less distress and depression.
Although I didn't need to use the letter from my oncologist, he had a couple of sentences that could be useful. "Although chemotherapy induced hair loss is clearly not a dangerous or life threatening side effect it is well documented that it produces important effects on cancer patients' body image leading to distress and depression. Fortunately there are now techniques that can prevent hair loss, minimize changes in body image and therefore making treatment more tolerable. One of these techniques is known as the Penguin Cold Cap. This system is effective in preventing chemotherapy induced hair loss and therefore was recommended.
mdg - At least with Aenta you know up front it isn't covered.
motherofpatient (and others) If anyone said "We don't support/advocate scalp cooling caps because they don't work for everyone," I would retort (sarcastically), "Well chemo doesn't work for everyone either but you don't seem to have a problem doing that!"
Colleen
0 -
Financial costs of scalp cooling caps -- some considerations.
My family made a "game" out of helping me with the caps. If anyone asked "what can I do/what does she need", the person was told about the cold caps and that a monetary donation to "feed a penguin" was I needed more than flowers, candy, stuffed toys or other do-daminits. The cost of renting a cold cap for two months is about what sending even a small flower arrangement costs.
Also, if you have checked into the price of wigs -- they are not cheap! (And rarely do I read of anyone who really likes or wears them). Now that Frank is recommending 8 caps rather than the 14-16 that many of us used last year, the rental costs are much lower. If you need them for only 3 months (like many of of doing 4 TC @ 3), they aren't going to be much more than the cost of a couple of good wigs.
Colleen
0 -
Colleen: LOL at the chemo not working for everyone either part.....too true! Too funny!
Sally's is close by...will get a cap this weekend! Thanks!
I also am experimenting with hair styles before the chemo starts. I have long hair so today I tried using some Soft Curlers...they are simply fabric with a little stuffing in them and a wire so you can close them up. They are super light weight and would not tug on hair at all. It gave my hair some nice waves so it wasn't so flat. I got them at Meijer or Target (can't remember for sure) but they are white and in a little plastic reusable bag. I just thought I would share in case it helps some of you long hair gals.0 -
Reading Sashette's post: isn't it funny and ironic (or not!) that chemo nurses recommend and advise how to cool our fingers and toes to prevent the SE of neuropathy, but they won't recommend/advise that it's possible to use the same technique to prevent hair loss? I mean, I've yet to hear the medical community warn of finger or toe cancer due to the cold therapy.
Susan
0 -
mdg-I got my satin cap at Walgreen's...it was like 1.99 or 2.99....then I saw some at the Dollar store...for a dollar...
Tori
0 -
We were charged $429 per month and a $600 deposit plus some exchange fee for 8 caps. What did you pay for 16 caps, anyone?
0 -
motherofpatient,
Was is the hospital that charges that much or did you go directly through the manufacturer? Thank you, any info would be helpful. Trying to read this thread
Mignon
0 -
migallen, directly from Frank. No one in Atlanta does cold caps.
0 -
It was just pointed out to me that my roots are showing. I said I doubt that because I think the chemo would have slowed / stopped any hair growth. I just looked in the mirror. My hair is growing faster now than before chemo, maybe double... That is crazy. Good crazy. Happy crazy. Yay for roots!
0 -
Susan,
I agree with you about the peas on the fingers etc. All my chemo nurses spoke about those but none believed in the Cold Caps.
Hey, wanted to mention that like other ladies that are done with chemo, my hair is thicker than it was before Penguin Cold Caps. Wonder why? I like it like this...
0 -
Sashette and Ang7, My hair too is thicker and even curlier if not kinkier than before chemo. It sure does come roaring back and then some! The new hairs (especially near ears and at nape) grow astonishingly fast, I swear almost an inch a month if not more. They're so tightly curled, it's hard to tell how long they are until I brush them, but as they grow out they're fabulous. I can't force a part no matter what I do, and some days it just sticks straight out. I've taken to wearing it in an updo and have been receiving compliments from people. I kind of love it, and I can see the signs of my old wonderful look coming back, but this interim period is pretty...well, wild and wirey :-)
Susan
0 -
Hi everyone,
My hair is growing too, with chemo, not falling out, but growing. So there! You nay sayers out there!
I think part of the fast hair growth is due (for some of us) to the Her2+ factor. Her2 means Human Epithelial Growth Receptor. It is a protein everyone has-it makes our cells grow and divide. We just have too much of it, (the +) so our cells grow and divide faster--our hair our skin, our nails.etc. Mine have always grown quickly--my hair, my nails, etc. The reason it is not good, is when you get cancer, it makes those cells divide and grow very quickly too, making our cancer more aggressive. Thank God for Herceptin which hopefully fixes this. I have Stage 1 / 1 1/2 cm/ no nodes involved and if it weren't for the Her2+, I probably would not have needed chemo at all-6 sessions of TCH every 3 weeks plus an addtional year of Herceptin every 3 weeks--and I probably would have only had to do just 5 sessions of mammo site radiation, instead of 7 weeks 5x a week of regular full radiation. These are all to knock out the Her2+ and is profallactic/preventative. My surgeon told me this.
By the way, my sister in law had ovarian and cervical cancer at the same time.(Thank God she is 6 years past it and fine.) Both were caught early and were self contained and had not spread. She only did radiation, because she is highly allergic and they were afraid she wouldn't withstand chemo. Anyway, I'm telling you all this because during the time she had cancer, she told me her hair changed-it was straight and it became "kinky" and stayed that way until such time as she was cancer free. No chemo--maybe the texture of our hair is affected by the cancer and not the chemo? I remembered this, because I thought it was so strange when she told me about it.
Interesting-I wonder if we asked others who had cancer and didn't do chemo, if they had a similar experience?
We have to get the word out. BTW- I tell everyone about the cold caps, and I tell them to pass it on. I told my regular GP and his whole staff and they were impressed and said they will pass the info on to any patients who have cancer. I told my pharmacist, because he knows who will be doing chemo, based on drugs they start ordering prior to chemo, and he says he will pass on the info or have them call me. Everyone who knows, can tell someone else and that is a good thing.
Keep Positive!!
Nancy
0 -
You said it Nancy!
I got copies of the Penguin Cold Cap brochure and gave a bunch to my OBGYN (who was my biggest Cold Cap fan...) and gave a bunch to my hairdresser (who has had to go to WAY TOO MANY homes to shave the heads of cancer patients...)
I always have a brochure in my purse, just in case.
0 -
I am a little confused. Several people have talked about the charges for the cold caps,a recent poster states she paid $429, plus exchange fee and deposit. I received a fee schedule which stated 328 British pounds sterling.....which is $530 USD, plus a 2% credit card fee fee ($23.47). If people are actually paying around $100 less /month, I would really like to know, I am thankful for the caps, but thats a big difference. Am looking for a little feedback from a few current cap users......
.0 -
Just got my bill--636.61-(-624.13--interest charge 12.48) I guess we all pay differently???
Question: Are you guys, to whoim are lucky enough to be on your journey post chemo--still using the caps 3 times a week, for two hours each session,if so how long PFC?? I have two more rounds to go --hope to be done with the taxotere and carboplatin the end of march--the herceptin of course continues for a year or so----just trying to figire out my finances for the caps rental---how many more months will I need the caps t be rented?
Hope today finds everyone well!!
Sharon
0 -
her2intn,
Check out Advance Cold Caps - little helmets that slide on easily. I use the velcro elastic straps like the PCCs - made them myself, one around the circumfrence and one under the chin and over the top. Advance is a new company using the elastogel helmets that look like you are putting a bowl on your head. It is so much better - no hair caught in the velcro flaps, no positioning and re-positioning, and no real need for a helper if you are alone. Need only one 48 qt cooler, can be directly on dry ice, no boxes either.
They ship it to you or if oyu are in metro Atlanta, they bring it to you and show you how to use it. I hope they will make a video so you can see how easy it is to use. There are women on this thread who used them successfully.
0 -
I actually am using the penguin colds caps, I have 3 more to go. I also have the elastogel caps, which I keep 2 in my freezer, and use several times a week. The problem I found when I tested both, was, the elastogel got rock hard on dry ice, difficult to open wide enough to place on head at -30, then, it heated up in 15 min, vs 25-30 for the penguins,time is of the essence, with only a 2 min window, that was enough of a deterrent for me, but I think they work well from the home freezer for 30 min between tx's, at this temp around -17, they are pliable and easy to use. If people are having success with them, I am very glad, they are much more affordable, I am all for that.
It still bothers me that we are all paying differently, why $600? is the price just steadily increasing monthly since Good Morning America, that is getting outrageous, no wonder so many cannot afford the caps, I am sure there is competition working steadily to find a betrter way here in the US, just a matter of time before someone will develop a better, cheaper cap. Let's hope so.
0 -
My last chemo was December 27. Mid- December my eyebrows started falling out and even now they continue to thin. Now my eyelashes are starting to go. I am still shedding, but since my hair has thinned a lot, there is less to shed. I can't believe my lashes are waiting until now to go. At almost 2 months out, I thought all of this would be starting to grow, not getting worse. I do have 1/2 inches of new growth at the roots of my hair. The long hairs that have stayed put are over 2 inches long (measured by color difference).
I paid $527.97 plus $15.97 international fee for fourteen caps per month. I had four chemos three weeks apart, so I used them for just over three months. That doesn't included shipping the caps to me, dry ice, coolers, temp gun........... Just glad I'm done with chemo and have 18 radiations done with 8 to go.
There was another local news segment this week; this time on Dignicaps. The cooling of the scalp thing is definitely going main stream, putting the Genie out of the bottle and into the faces of our oncologists. I think to really go main stream, the whole process has to be easier and cost less. The Dignicap looks easier, but having to sit and take up room in an infusion clinic would nix that for many. Sounds like the gals who use the freezers at their hospital, also take up space for longer. I did like being able to do the caps in the car and then at home and not at the infusion clinic aftrer the chemo was in me.
0 -
On the caps and elastos - I am testing sides and tops for temps before using and after. We had the PCCs for 3 months, but only used them for one and part of the second chemos - delays due to suspicious spot on the lung and then the snow storm.
Now I am doing a detailed record of the temps with 2 different laser thermometers, also record room temp. Also testing dry ice left in cooler to see how many days it lasts so we can keep the caps at the lower temp for home use for at least 3 days after chemo. One 36 qt cooler of dry ice has lasted almost 4 days now and still going.
All caps seem to cool unevenly and both types need kneading when they get too cold. I think the elasto gels may have to be changed every 20 min through out and use 3 before taxo begins. I would rather do too much cooling - within limits - than too little. Since the elastos cool down so quickly, it is possible to change more often.
I hope other caregivers will keep records so we can compare notes and find a better, less expensive way to help more women.
0 -
Julia1969
Did u use Latisse during your treatments? Are you using Latisse now? Yay you that you are done with chemo!0 -
I have not used Latisse because so many others have lost the eyebrows, but not the lashes. I've been trying to get the prescription, but the derm department and my oncologist say it is not for cancer patients. I read the manufactuers sheets and some of the online stuff and it is supposed to speed up growth and increase fullness of lashes. It is not been okayed for cancer patients, although many have used it for years. Probably the concern about mets. Suprise! Where have we heard that before.
0 -
You can get generic latisse online with no precription and for way cheaper. it is the same stuff: bimatoprost.. Apply with thin eyeline brush at lashiline. also use on eyebrows!
I checked all this out with my dermatologist who said, absolutely, great idea, go for it. So i have been recommending to everyone.I used latisse well before chemo and it is a great product.
If lashes and brows are thinning,start it soon and the results will be faster regrowth and thicker, nicer than before . (after brows are back, youcan stop that are but may well wish to continue with lashes forever).
There is no reason to get "approval" fo latisse from drs; it is a cosmetic.. that would be tantamount to getting approval to use lipstick.
btw- i am one of those observing thicker hair now (11 months from ast treatment!) than ever before. As i was an early stage an ovca person, not bc, not sure about the herceptin influence. My hair is same texture and degree of waviness as before.. just more of it!
0 -
Reading on these pages the various experiences and insults borne by feisty, bright, fellow cold cap users, it occurred to me that it would be fun to assemble a "top ten" list of snappy responses to the affronts we have encountered. A few have appeared recently and had me cheering from my laptop.
Here are some to get us started. Feel free to add, as the spirit moves.
"Cold caps don't work for everybody:. "WELL, NEITHER DOES CHEMO!"
"Cold caps might cause scalp mets, but use ice packs on fingers and toes" ..'THEN WHY AREN'T YOU WORRIED ABOUT FINGER AND TOENAIL METS?"
"Why worry about hair loss from chemo? it will grow back". .."EXCEPT WHEN IT DOESN'T"
"It's so vain to worry about your hair when your life is at stake. Just wear a hat or a wig". "WOULD YOU SAY THAT IF YOUR GENITALS SHRIVELLED UP? AFTER ALL, YOU CAN ALWAYS WEAR PANTS TILL THEY GROW BACK".
:-)
0 -
Hi all,
Well another couple of nights with little or no sleep thanks to Decadron! Had Chemo #3 of 6 yesterday. Night before slept 2 hours, with the aid of sleeping pills. Last night or should I say this morning I went to sleep at 8 A.M. and slept until 11:15. Dr said to only take pill in a.m. today and tomorrow and no night time tonight or I will not sleep again. No other SE's except red face and neck, also from Decadron! Hair still intact. Streaked with gray and no style whatsoever.
As far as cold caps, I pay $536 a month rent for 14 caps. That number includes the price in pounds plus a 2% fee from Penquin for credit card use, plus 1.555 exchange rate from pounds to dollars and a 3% fee from my credit card for doing a foreign transaction. I pay that for 3 months, plus an additonal $600 refundable deposit, then they reduce the amount to 50 pounds, which becomes $81.71 for all months past 3. I agree with who ever said that competition will bring the prices down and the more people that will know about scalp cooling the more chances an inventor will make a better and easier way to do it.
I was only planning to use them for the last week after my last chemo to fill out the month and then return them or pass them forward to another patient. I'd like some input from others on how long after chemo they willl continue doing at home. At lesser rate for month 4 or more and the fact that I would only need 4 caps, it might pay to do for longer after chemo is over. If I had known about the other caps when I started it might have paid to buy four caps to use at home instead of taking 4 home after chemo and then having to return them before chemo to hospital freezer to get them colder for chemo. Trip to hospital is an hour by car in heavy traffic or 1-1/2 to 2 hours by Long Island Railroad and Buses or Subway from RR to hospital. If I had known about the other caps from beginning, I could have saved alot of time and energy. It doesn't pay at this point. See how no info is no good--and I knew about Penquin Caps, but only found out about others thru this site. My Oncologist told me about the Penquin Caps because they are doing a trial there. We keep the caps at the hospital, each user has a separate shelf. The freezer room is locked when staff is not there and the freezer itself is locked when person in charge leaves and they only have one cold caps user a day at the hospital. Frank thinks you should take the caps home so noone will steal them, but we just don't mention to him that we leave them there. It's perfectly safe and so much easier.
We must get the word out. Let's keep hounding Oprah and Dr. Oz!!! Keep writing to them!!!
Keep Positive !
Nancy
0 -
I've learned so much through this forum and appreciate everyone's advice so much. I am only on day 9 of TC #1/4. No shedding yet and wanting to do everything best to save my hair. Question: I have very fine but moderately thick hair just below my shoulders. Very straight and flat to my head without curling it. Can I pull it back in a ponytail? When I do, i wouldn't say it's pulled back "tight," but has to be firm enough to stay pulled back since my hair is so fine and slick. Any of you with this kind of hair have idea of how to style it for the next few months? Thanks for the help!!
0 -
mtri111 - lol, very nice....
Howard - because over the ear area is vulnerable to heavier shedding because of design of cold cap, I found ponytails no matter how loose - I seemed to shed heavier on the sides. When I switched to pigtails, I quit shedding on temples and over ears. Try it - there is no pull w loose pigtails. but since every one is different that is just what works for me.
one of the dumbest thing I have done so far - when asked if I was losing my eyebrows said, no don't think so, reached up and pulled on them and a lil chunk came out......mmmhmmm that one eyebrow now has a bald spot. Of course I am still undergoing chemo and am confident it will grow back once I am done (I am using latisse) ..but sheesh...
0 -
Oh, Sashette, I know how you feel! Are you using the eyebrow bands? I had to pluck some renegade eyebrows today and realized how easily they pull out. This made me pause - again - about all this hair crap. So, do you all think the hair follicles are protected and just not that strong? Will these hair that have weaker follicles just eventually fall out over the next months when chemo is all done? Does our entire head of hair turn over quicker than the average person? I thought by protecting the follicle we were keeping that particular follicle for the entire duration of the hair's life cycle. That the follicles would be strong...but it does not appear that way!
The reason I have been thinking about this is that I still try to comb my hair with a wide tooth comb. I have so much hair coming out that if I did the math, over the next 65 days of chemo I estimate that I will have little hair in back (where most of my shedding is) and will only have the hair on top. I am still so thankful of any hair.
My husband says I really need to go back to my job...I am thinking too much about all this BC, hair, etc. He may be right!
Annie
0
