Cold Caps Users Past and Present, to Save Hair
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Mtrii: I did have an electic blanket. I brought my own....and ironically got it at Walmart! It was my feet that were so darn cold....that was the worst part for me more so than the caps. Once I was done with the feet, I was toasty warm. I can't believe so many people say this is not worth it. Yes, it is a personal choice, but if you really do the research and talk to others that have walked this road before you, you can do this.
I too hope to get the word out as much as I can. I am giving it some thought as to how to do that. I hope to at least start by volunteering to be the "Poster Child" for my onc's office. They have the freezers and caps on site and there is only one other person using them besides me right now. Seems like a crime......you don't even have to bring dry ice or anything. So easy. I told them I would gladly talk to patients and allow them to call me if they want to hear about my experience. I hope that they will take me up on this offer. I am going to push for this. Once I get that going, I will have to come up with some other ways of helping get the word out to other area docs. I feel compelled to do this...
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Yes Anniemomofthree~
Actually had two ladies starting chemo and both said it would be too much of a bother! The one said it would be hard enough enduring all the chemo. I said I was glad to have something to take my mind off the chemo itself. I am grateful everyday that I was able to research and use them...
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What if, you speak to your surgeon, show them the results! Ask if they would consider in their aftercare instructions mentioning cold cap hair protection as a complementing comforting therapy. It would be like them telling you to diet and exercise not medical procedures but good medicine. That would carry weight with the Oncologist.
Just a thought,
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Well several breaks!! I have completed round 5 TCH!!! Only one more to go--then 34 radiation tx's,finishing still with the ppppyear of herceptin. My oncologists is now -recommending colds caps!! She is so impressed on my hair remaining!! I have to come up something for these people to go by--Of course I have the penguin cap cold web site--the Rapunzel project---are there any leaflets to put in the office? So far price is a problem for most people in these tough times. My hair stylist too is reccomending--she see's so many that want thier hair cut short to ready for chemo--she is letting thim know that there is an option--another great place for posters o rleaflets if allowed!
A question ,do most of you girls that need rads start right in or do you rest--I want to start 7 days post 6th chemo-- the appts are made=mistake on my part? Should I wait a bit?? Really want this behind my summer is calling!!
NOTE: my caps should be ready in april--south New Jersey--if anyone isstaged and ready---
Thanks!
Sharon
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Hi;
As to Radiation Therapy, I was told I would wait 1 month after finishing chemo before staring radiation treatments.
Ladies, why aren't I hearing a resounding yes from all of you willing to pass out posters to tell the world about cold caps and the choice they offer??
Nancy
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I'll definitely pass out posters and have already begun contacting places in Las Vegas providing them information on cold caps. Passed information to my daughter's co-worker in CA who just started chemo and knew nothing about the caps.
I'm also sending emails to some of the major news casters to see if they will do shows on the caps. If enough of us send them emails, perhaps they will respond.
I haven't started my chemo yet but should within the next few weeks - just finished surgery!
We're all in this together!
Arlene
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I will hand out anything! I want women to know about this!!! The FDA has strict guidelines as to what the actual company can promote without things being fda approved but I wonder what happens if none of us work for the company and we just put stuff out there???
Sharon: Good job! Congratulations on being almost through this!!!
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Yes, I will pass out posters. I would also like to have business cards with the info printed. I'm talking to several women every day about the PCC and would like to be able to hand them a card with the pertinent websites and the basic info.
Had TC #2 yesterday. They put me in such a small cubicle and said I could only have one person with me. Prayed. Then nurse said there was an alternative. Could wait for another room which had a big open space. Found nurses not too excited about bringing coolers and friends and family and frozen peas for my toes. I don't think they care if we lose our hair. It doesn't impact them or their job. They were quite nonchalant about it. I was hoping for cheers!
When do you start your first cold cap? We've started when we get to the chair and they are not happy that it will be 20+20+10 minutes before the taxatere can begin. Do any of you try to start in the waiting room? But who knows when we'll be called back. They have been about an hour or more late both times. Tips on working with the nurses? Thanks.
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Hi fellow cappers....
howard~ your post just got me! Why on earth do we have to accommodate the nurses or staff? We are paying for a service - period - they work for us. Of course, everyone should be treated kindly and respectfully -- but in the end we need to stand up for ourselves and remember (or remind) that they are providing a service. If I hired a chef and they told me where to sit, how many people I could have to dinner and what I was going to eat --you better believe I'd fire them... I do understand that nurses are highly skilled educated people but somewhere the system seems to be turned around. Sorry for the rant ~ but do not feel bad when you are getting bad behavior!
My doctor asked me in one of my appointments about why I was so demanding... not in a mean way.. and I said the same to her ... with surgery and radiation and tests and chemo ... I'd spent close to $200K at the hospital ... I deserved to be treated like a customer....I could always go somewhere else.
And the cap timing is key to success of the caps so howard DEMAND (and feel no guilt) that they just wait... its not a restaurant, noone is waiting for your chair... and I will cross my fingers that you get an encouraging, open, loving nurse next treatment.
Sharon, can't believe you are almost done!!!! Time passes so quickly. (Of course, not when you are waiting to be done)
Annie~ my first week back was pretty good.. busy and nice to start to feel "normal" again. I have to admit at first I tried to stay in contact .. esp after DMX .. but then I totally checked out on short-term disability and only stayed in contact with my friends at work... (I've been at the same company for 10 years but work from home so pretty easy to do) So this week was a lot of reconnecting and getting re-engaged.
mdg~ You go girl!! My only "bad" days with TC were the 4-6 days post infusion... and even then I could usually get out and walk. Seems like you are having similar experience ... can't believe how active you were... don't be surprised if you find you need a nap (or two)
TGIF everyone....
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Howard: That's terrible. I feel like the next person that says anything about it we should just say "if it's not such a big deal to lose hair then why don't you just shave your head"! Ugh! I would talk to the doctor. That's rediculous. Perhaps your doc has no idea how rude the nurses are. I guess they get desensitized to this because they are around it every day but that is no excuse. I would pitch a fit.
LMflynn: glad going back to work was good! It must feel kind of good to do something normal again! Keep it up girl! You rock!
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Just had a brainstorm while lying in the tub! Next TCH (#4 of 6) I had planned to bring a catered lunch to the onco office for the staff - nurses, doctors, etc. The nurses said the oncologists will eat because they typically are running late. So, i am thinking I will do a picture of me with an over the top thank you and thanks to Cold Caps for making this chemo experience so positive.
We have two women (me and another) doing TCH every week in a dedicated room with a freezer. There is capacity in that room for 15 women. Sad....
I think the food angle combined with the cold cap message will work! Thoughts?
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we bring in boxes of dunkin donut's--love to watch the nurses and my oncologist slip by the boxes --cut the donut's in half--then come back for the other half in about 5 minutes! Funny--they are grateful---We are going to do something a little extra of course for my last tch at the end of the month----
so far I think I am going to gather a page of web cites--along with my expense to give out to the docs--they will have something to gaze at and our thread is exceptional!!! Any other thoughts--I don't want to over welm any newbies--but must hit home on the commitment factor to gleam success!
Sharon
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I guess I am done with chemo, had 10 out of 12 taxol/herceptin, but neuropathy in feet got too bad to continue, I am praying it was enough. Will continue herceptin for a year. I feel guilty for having to quit, but toes are very numb, thumbs slightly, my onc refused to switch me to another drug. I pray 10 was enough, sure feels like it was, I am quite fatigued and ready to move on to radiation, 10 solid weeks of cold caps, plus doing 7 of them myself, has been very long.
My caps are available now, I will call Frank again to see if there are any new people who need them, and will pass them along, if you know of anyone, please message me.
I did want to pass this along since so many are discussing nurses responses during tx. Two weeks ago, while I was sitting in a small observation area where I am moved to to complete my caps 4 hours post chemo, I had the charge nurse come in and ask me if she could speak with me a minute privately, since there were several other people in there. I said sure that I had about 10 min before I needed to get back to cap change ritual. We stepped into a small office and she said "I know how much you support the cold caps", and how you would love to tell others about them, but, not everyone will have the same treatment, so we don't know how they will respond, so we ask that you simply tell them to talk to their Doctor about them".....and nurse to nurse, we know we shouldn't talk about this to others......Did I mention that I am an RN at that Hospital...in my non chemo patient life?
Well, here I was tired, a little weak by this 9th chemo tx, and in the middle of my caps i am doing alone, I looked her in in the eye and probable with daggers shooting out of my eyes quietly said " first of all, I am NOT a nurse here, I am a chemo PATIENT, so talk to me as a patient, secondly, I will talk to whomever I choose to talk to wherever I choose to talk to them, especially if they want to see what I am doing, thirdly, we are done, cause I need to change my cap" I didn't know whether to cry or scream, I remained calm, but asked for the manager.
She came down and sat with me while I changed my cap, my hands were shaking I was so mad, she said she worked in oncology for years where they did cold caps and they "caused scalp mets" and they were not FDA approived, so we shouldn't advocate them, again, I said, I am NOT a nurse here, I am a PATIENT, but more important, I would continue to talk where and to whom I chose, there was freedom of speech and I was just a regular person, not an employee breaking HIPPA codes. I did say I would always tell someone who was inquiring to talk with their Dr, and tell them they would like to use cold caps if they could save their hair, and that they needed to be assertive about the caps with their DR, because most lack info.
I work at a large teaching hospital, and the cancer center onc's I talked to had NEVER heard of cold caps. Lastly, I told my onc that I would personally take charge of the caps with people, teaching, help in getting the caps, supplies...etc... I told her she had permission to give out my phone number to interested people etc..and to please give people the choice after seeing I have my hair, she said ok...I have not heard from anyone!!!!!!! Do you know how many people start chemo every week at a large teaching facility....I am disqusted with them...I will find a way to help others if I have to carry a picket sign outside the facility saying "hair or no hair, you have a choice".......OK, there I have said it!!!
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Hi Ladies
I am starting chemo on the 22 nd of this month and I am going to use cold caps from Advance Cold Cap Services. So far they seem really great. I will keep posting to report the progress, I am keeping my fingers crossed. The idea of keeping all or most of my hair makes any of this bearable at this point. Anyone have any experience with them? I would be the first in my area for them. BTW I am going to be on Taxotere- Carbo- Herceptin
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Hi NMoss: I'm starting in a few weeks too and will also be going with Advanced Cold Caps. I love that they come out for your first treatment too. I too am hoping for the best for us.
Good luck and keep us posted.
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Hi Everyone,
I am appauled and shocked at the behavior and responses of the medical communitity regarding cold caps and their use. The oncology departments should be our biggest advocates, not our biggest thorns! This scalp mets nonesense has got to stop. We have to get the word out ourselves! They are doing and saying what you have all experienced to "COVER THEIR ASSES!!" They don't want to be sued for promoting a non FDA approved product, etc. They are following the "legal" protocol of their institution. Also they don't get paid for it, so why promote it, or help it in any way.Thank goodness, my hospital is doing a trial for cold caps, so they are positive about it. My Oncologist is the person who told me about cold caps in the first place.
Nancy
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I made it through the first chemo no wash time frame. Boy did I feel icky this morning (my hair!). The last time I washed it was Sunday....6 whole days. Ick! So, I washed in the sink with cool water using a cup and small amount of organic, sulfate free, paraben free shampoo. I tried to wash but it just didn't seem to lather at all...I have long hair. I was being gentle....didn't feel like it was really washing my hair. How much shampoo do you use? I used about the size of a dime...maybe a tiny bit more and my hair got a little cleaner than it was, but not clean at all. I did use a little conditioner on the ends - no where near the scalp and rinsed it out to avoid tangles. Any advice on the easiest way to wash it? Sink? Bowl? Tub?? I can't stomach the thought of doing it in the shower with cold water running on my body...no way! Any suggestions would be helpful.
Also - when did you start using Lattisse? I got the Rx but thought I would wait until things started to shed on lashes/brows....does it make sense to use it the whole time? It seems like most gals lost lashes/brows post chemo....let me know your thoughts/experiences.
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Hair using cold caps. This is 37 days after 1st chemo and 17 days after 2nd chemo.
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Maria -
I wash in the shower with luke warm/warm water. I use handfuls of organic shampoo. I pat it in my hair, kind of scrub the top/front where I have had little hair loss. I then rinse and put handfuls of conditioner from the root to the ends. I figure that this lessens the tangling and loss of hair. So far, so good!
Also, was running around the house trying to get everyone ready to go. I rushed into the bathroom, grabbed my big paddle brush and brushed my hair really hard. I had forgotten! I had little hair in the brush. More importantly, it symbolized that I am obsessing less and less about the hair thing!
Happy Saturday...
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Have Latisse...have not used yet. So, when did people start Latisse?
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Steph - your hair looks FANTASTIC!!!! Congrats. Love the pics!
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her2intn~ I'm just going to send you cyber <<hugs>> and applause for your passion. I think it is this way in every profession... wouldn't it change how we all do our jobs if we actually sat on the other side for awhile. You will be a better nurse for your experience and will most likely change someone elses day/life without even knowing it.
nmoss and ArleneA ~ I'm so excited to see how the Advanced Cold Caps work for you! Make sure you keep us all updated as you go through your journey!
Steph! Yea!! your hair looks no different than when you started. Congrats!
mdg~ If you are using Regis Pure -- it doesn't suds well and I use handful of it in the shower.. I get in with warm H2O and then turn it cold lean way back get my hair wet, warm the water again shampoo and rinse in the the cold... I CANNOT wait to wash my hair in warm water.. but I thought my shedding was over .. but this morning -- some shedding again.. so I will still wait. But I am washing every 3- 4 days.
I am celebrating getting back into my life tonight with a vodka on the rocks .. extra dirty.. my favorite! I really have not drank very much alcohol in the last year.. but this drink tastes great!
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nmosss1000 and Arlene---
I am over 8 weeks PFC from 6 treatments of T/C and still have a full head of hair. I used the exact caps you two are going to use, however, I did the research, (along with getting tips from this thread from these amazing women) bought the caps, figured out the logistics of the procedure, and had my husband be my helper for each treatment.
Ask questions...as many as you need to, in order to be as prepared as possible. You will do great! Please check in when you can and let us know how you are doing, okay?
Good luck and God bless,
Tori
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her2intn: Your charge nurse's attitude and instructions to you were completely inappropriate, unprofessional, and not supportive of your decision. You should report this bizarre encounter to the Patient Advocate at your hospital so that they can follow up (I also work in a hospital). At minimum, she has violated your right to make your own medical choices and this needs to be reported and followed up with.
Please make sure they understand you are representing yourself as a patient in this matter, not as a staffperson. They have a duty to treat you with the same respect that any patient would be afforded. I'm even more appalled that she did this in the middle of a treatment!! Outrageous, absolutely outrageous.
I don't know if you've tried this, but I found accupuncture to be incredibly helpful with preventing/cessation of neuropathy (and any other SE or mood swing I had). I'd never tried it before going through chemo, but I'm converted -- and luckily, still have access to the service through my cancer center (and it's covered by my insurance, though I didn't realize it and happily paid out of pocket). My accupuncturist was one of the most enthusiastic of my docs in regards to PCCs, btw -- it took her over 10 years to have accupuncture accepted by the cancer center, and now it is integral and one of the first things the nurses recommend in the orientation. She knows exactly what it's like being a pioneer and battling the cemented attitudes of the medical establishment. She also knows it is worth it for the patients, and that's the thing to keep in mind always: the patient.
Hang in there!
nmoss1000 and Arlene -- Please keep us posted on your success! We are cheering for you!
mdg: I showered with cold water, head only, then warm on my body. I rinsed my hair every day even if I didn't wash, just to keep the curl in it. I used Trader Joe's Nourish Spa shampoo, about half the amount I usually used. I gently worked it through my hair, tried not to agitate the scalp, and rinsed thoroughly. I used conditioner also, with no ill effects. (If I hadn't, I'd have had very tangled hair and would have tugged too much with a comb.) The other day at the gym the hot water was out and I had to have a cold shower after my workout and swim and I swear I about had flashbacks!!! It was awful!! I can't believe I did that for many months. Amazing how the mind and spirit will adapt to any hardship.
lmflynn: Enjoy that drink!! A friend took me out this week to celebrate my 1-year cancer free mark. He and I had a couple of very strong cocktails and man they tasted gooood! Celebrate!
Susan
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Our experience with elastogel caps that Advance uses is that they do not stay as cold for as long as the Penguins. I did a detailed temperature recording at my daughter's last chemo and several trials with the caps out of our freezer set at -23C.
We changed caps every 15 min for 50 min prechemo and every 20 min though chemo and for 4 hours after chemo. I hope each of you will get a laser thermometer Northern Tool or Sears and record the temps from the inside top and sides after you take the cap off. It is important that we get some data on this. Have a family member with you to do it so it is not biased by business interests.
Each woman deserves the absolutely best information to make her own decision as to which system to use. Each system has advantages and disadvantages, but the actual experiences of uses must be reported factually. Thanks.
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Our experience with elastogel caps that Advance uses is that they do not stay as cold for as long as the Penguins. I did a detailed temperature recording at my daughter's last chemo and several trials with the caps out of our freezer set at -23C.
We changed caps every 15 min for 50 min prechemo and every 20 min though chemo and for 4 hours after chemo. I hope each of you will get a laser thermometer Northern Tool or Sears and record the temps from the inside top and sides after you take the cap off. It is important that we get some data on this. Have a family member with you to do it so it is not biased. We need factual reports not influenced by the promoters or makers of any cap or any system. Thanks.
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Elasto-gel caps have no problem staying cold enough to produce excellent results in thousands of cases, I am helping 4 people use elastogel caps and have never seen a temp over 0 degrees F at cap change. Steph's hair looks great she is using the elasto gel caps!.
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Mike I have done detailed recordings - I sent the info to Sandy. I urge everyone to keep close track of temps otherwise we will not have good data. You said you wanted all reports, good and bad. This is about the women, not about business promotions.
Using two laser thermometers temps ranged from +19F to +38F on removal. Under the Dignicap reported tempos but higher than the Penguins.
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This is about reporting data that is unusual and should be verified, the Elasto gel caps are not penguin caps and will heat at a different but effective rate. Well within the temps needed to produce excellent results. The real question is why are you the only person to ever report these temps? Why did we not see these temps when we were with you overseeing the use of the caps? I take offence at your business comment,. that was a cheap shot.
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For all interested in cold caps and how effective they are - collecting data, good and bad, is part of research. I worked in research, am trained in data collection, study design, and analysis, and want to get data on the temps even if it is anecdotal. A scientist or researcher does not supress any data, but uniformly collects as mcuh information as possible before drawing conclusions. Don't atack the messenger because you don't like the message.
For all using either caps - this is not to say one is better than the other, but to provide information for you to make your decisions.
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