Cold Caps Users Past and Present, to Save Hair
Comments
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Luckyjnjmom, are you still eating protein, Frank told me vegetarians don't do as well as the rest.
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Just wondering what are the rules on combing your hair. I typically comb thru my hair twice a day with a large tooth comb. Once in the morning and once at night before I put my satin slumber cap on. When I comb it is when I experience most of the shedding. Wonder if I am combing too much? I don't want to force the hair to shed by combing it. But I also don't want loose hair getting tangled up in there if I don't comb thru it. Any thoughts?
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victorious2012, I have been careful to comb the hair by holding it away from the roots and not tug. I think that as long as there's no unnecessary tugging you're okay. Most of my shedding happens after washing, and I figure that it's hair that was destined to come out either way. I don't comb if it doesn't "need" it.
So, for those of you that know that your shedding has stopped: how did you know? How long did you wait until you knew that it was over? Two weeks, three weeks, more, without shedding?Does it shed for awhile, stop, and then pick up again?
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Victorious, I saw one poster that said she avoided touching her hair as much as possible. I comb my hair as little as possible, usually at night and very slowly and gently, and holding the roots as I go through the ends. I as so sleep on a satin pillow case, as I know the bonnet would get too hot and come off. I PM'ed you too.
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Thank you ladies! This is sooooooo helpful. I was going to buy some silica but my Naturopath said wait until after I am done with treatment. I will look into the iron although I hope it doesn't constipate me. Tomorrow is my big day!!!
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There are many protein sources other than meat. Here is a list of a few. Although, if you choose to eat soy, be sure it's organic otherwise it's likely been genetically modified-which is not good. http://www.care2.com/greenliving/vegetarian-protein-sources.html
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I am a vegetarian and have supplemented with vegetarian protein powder. I had moderate shedding after my second TC on 2/23 but the shedding has stopped. I rinse my hair every day in cold distilled water and wash it most days with paraben/sulfate free shampoo. My hairdresser trimmed my hair today and assured me that I did have new hair growth since she last saw me (before my first chemo). My MO will not let me take iron or any other supplements, so the only extra support I am getting is through the 80-100 ounces of zero calorie protein drinks (which contain all sorts of vitamins). I also detoxed by walking miles after each chemo (before the steroid crash when I take it easy for a few days). Here's hoping we all keep our hair!
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Congrats Mom2jj, once your chemo is done perhaps you can try the iron if you need it to stop the shedding. Here's hoping that you won't need it!
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I spoke with my doctor about ice and cold product to prevent hairloss and nail loss - he doesn't approveof them as he explained - what if there is one cancer cell in that area and the cold prevents the chemo from killing it. He also stated that 70% of his patients do not lose their eyelashes or eyebrows but in the event that that happens he has Lattise available and you can purchase natural hair eyebrows that are resuable from headwear.com. I trust my oncologist because he has customized my treatment from the standard of care. For my type of breast cancer the SOC is TCH (Taxotere, Carboplatin, Herceptin) however I also have Multiple Sclerosis and he changed the Carboplatin to Cytoxan as this is a chemo drug that is used for Multiple Sclerosis. I am praying for a two for one deal here. He also stated that if possible he always goes for a total cure not a remission and statistically my cure rate with this treatment and no interferring cold caps, etc is at 90%. I agree hairloss is devastating but it will grow back and there are so many wigs out there today, just think of it as trying a new style for a little while.0
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pinkpeonies, I'm glad that you feel comfortable with your MO...that's very important. I too spoke at length with two oncologists (one at Dana Farber), who told me that the possibility of scalp mets was nonexistent. There have been numerous studies done in Europe with this system that have shown no increased risk of scalp mets.
I think that every patient needs to make an individual decision given their situation.
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pinkpeonies~
My oncologist researched the Penguin Cold Caps extensively and I trust her completely.
You did state that "the hair will grow back." You might want to look at the Taxotear website as this is a group of ladies that used Taxotere and their hair never grew back. My oncologist told me there was a 6% chance that my hair would not grow back.
We all do what we are comfortable with and for me to be able to play with my kids, swim, volunteer at the school and not have to worry about a wig or looking like a cancer patient the Cold Caps were well worth it.
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Pinkpeonies: It is not just hair! it is the way you see yourself and the way the world responds to you. I worked out everyday, did yoga and kept my disease private. I never looked sick, I never beccame sick. There is a mind body correlation when it comes to health and no doctor can define it with statistics. I can't begin to explain how wonderful it is to keep your hair, your dignity, your privacy and kill cancer all at once.0
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Pinkpeonies: We each have to make our own decisions. Those of us that have used cold caps have researched them and discussed it with our physicians before making the decision to use them. Your post kind of leaves me feeling uncomfortable as we have all used cold caps here and they do not "interfere" with our treatment. I am glad you have made the right decision for you. That is what is most important for each of us. Many of us have been faced with people telling us that cold caps don't work or inacurate information about them and that has been a source of frustration for us. We all come to this thread to support those using the caps and to encourage those going through the process. I am sorry your doctor was not more supportive of you using them. I am glad I used them. I have a young child and I did not want to teach my 4 year old what cancer and chemo were. He will find out about my breast cancer when he is older and I choose to tell him. I exercised daily through chemo and even spent time around co workers and taught aerobics without people knowing I had cancer. It was not about being vain, it was about having dignity and privacy for me personally - and most of all, sparing my young son from seeing "sick Mommy" and being scared. I am glad you have a treatment plan and hope you get through chemo with little side effects. Good luck!
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All, I thought I had make it through my second chemo with my hair intact, but for two days my head has been extremely itchy. Some of the other boards where people are not using cold caps suggest that the itchiness precedes hair loss. Have any of you using cold caps experienced itchiness?
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mom2jj, I have had scalp itching and tingling after all four of my treatments. I understand from others on this board that it's completely normal. Is your scalp flaky? That may be the cause of the itchiness. I find that the itchiness goes away after I wash my hair, or after I rinse in cold water between washes. I have had plenty of itchiness, and still have my hair after completing treatment.
mdg, I'm glad that you said what you did re: feeling uncomfortable about pinkpeonies' post; it made me uncomfortable too. For me, the decision to do the caps was driven by a desire to have one small victory over this disease that takes so much from us. I respect and support those who choose to do different, and hope that they will do the same for me.
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It is very normal to be itchy! The cold caps are very drying. You will keep your hair.
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pinkpeonies, mdg's post is right on, I did research before deciding on cold caps. My onc did research as well. Aside from a couple of days after each chemo, I felt good and always looked like a healthy person. No one knew what I was going through unless I chose to tell them. The doctors and nurses kept telling me how well I did throughout chemo and then radiation, and I know it was because I never looked like a cancer patient and so I didn't feel like one.
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Mom2JJ, My head itched and also sort of tingled at times, but I never lost any!
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FYI, take it to your onco if you want:
Acta Oncol. 2012 Feb 6. [Epub ahead of print]
Scalp cooling for hair preservation and associated characteristics in 1411 chemotherapy patients - Results of the Dutch Scalp Cooling Registry.
van den Hurk CJ, Peerbooms M, van de Poll-Franse LV, Nortier JW, Coebergh JW, Breed WP.
Source
Eindhoven Cancer Registry/Comprehensive Cancer Centre South (CCCS), Research Department , Eindhoven , The Netherlands.Abstract
Background. Chemotherapy-induced alopecia is a frequently occurring side effect of cancer treatment with a high psychological impact which can be prevented by scalp cooling. With this multi-centre patient series we estimated the results of scalp cooling for currently used chemotherapies to provide patient information and we identified characteristics associated with the results. Material and methods. The Dutch Scalp Cooling Registry collected data on scalp-cooled patients in 28 Dutch hospitals. Nurses and patients completed questionnaires on patients, chemotherapy and scalp cooling characteristics. Logistic regression analysis was used to examine associated characteristics of the scalp cooling result. Results. Overall, 50% of the 1411 scalp-cooled patients did not wear a head cover during their last chemotherapy session. Patients were satisfied with the results in 8% of cases after TAC chemotherapy and up to 95% after paclitaxel treatment. Besides type of chemotherapy, higher dose and shorter infusion time, older age, female gender and non-West-European type of hair significantly increased the proportion head cover use. Hair length, quantity, chemical manipulation (dyeing, waving, colouring), wetting hair before scalp cooling, and treatment with chemotherapy ever before did not influence the degree of head covering among patients. Conclusions. Scalp cooling results as recorded in this open patient registry were positive for most regimens, justifying it's use by all eligible patients, except for those needing TAC. Lengthening infusion time may improve the results.9/27/2011: MRI badness (BIRADS 5, more than a quadrant), 10/5: u/s bx = DCIS 2/2 sites, 11/2: BMX, 11/9: path results: IDC 0.8cm, lots of multifocal DCIS, oncotype 51, 12/22 started dense dose A/C, taxol to come
Diagnosis: 10/7/2011, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Another study abstract, and this one also looked at scalp mets 15 months later. The study found zero mets in the users as well as good sucess on several regimens:
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Thanks to all of your responses to my itchiness question. My scalp isn't flaking, and my hair isn't leaving my head (other than a teensy bit of shedding). My hair actually looks fabulous today. We cut it very short so that it would still have body on top; it is standing up nicely and looks very shiny. I took benadryl when the itching got too bad yesterday and today I have almost no itching. Yippee!!!!!
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Okay, I am day 1 after first chemo with new cold cap machine. I'm a little nervous about having been a trailblazer with this. It was cold but it wasnt really COLD. I kept bringing this up to Geralyn who set me up and she kept saying that that was how it was supposed to be. I just don't know. I pray this works. Overall, I was very comfortable with the cap. Not having cap changes allowed me to truly rest. The only headache was pushing the machine and the pole to the bathroom over and over again. I suggested that the next cold cap machine have an integrated pole and that it rest on 4 revolving wheels (like new luggage). Overall, things were great! Time will tell if it works. I wanted to share a picture of machine but I don't know how to set it up
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tc9876, Geralyn is a good one, so I'm sure she knows. Hope all goes well with this, very exciting!
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tc9876: Thanks for the report. I'm so excited for you! I assume the rest of the hair care protocol is the same, but keep us posted. I really hope the new machine is as successful as the caps.
Susan
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tc9876 - how cold did the cap get? Any idea? It would be nice if you could briefly unhook the cap from the machine to use the bathroom. As an early user, are you being asked to give feedback?
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I don't think the caps go below 0deg F. I would be too afraid to remove the cap for my numerous bathroom breaks. I'm already nervous leaving them on. There were numerous succesful trials with the machine before it went live but I am still giving feedback.
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All, I was just reminded what a special group of trailblazers we are. I was just on the hair, hair board reading some of the posts from women just now losing their hair due to chemo. Some of them manage it well, but others are completely devastated. It breaks my heart that cold caps are not commonly offered in the U.S. as an option to chemo patients to avoid hair loss. I am day 29 after first TC treatment (2/2 and 2/23) and I still have 95% of my hair, which looks great even though its very short. I am amazed that the medical community doesn't handle this side effect better. Of course, my MO, who is very good, didn't mention icing fingers, toes, or mouth either, but like cold caps, I learned about those options from this website.
One thing we might all consider is adding a tag to our signature line that indicates we are cold cap users. I did with the hope that other women facing chemo might notice and inquire. I don't want to offend or upset women who have already started chemo without cold caps, but women not yet starting chemo might have a better chance of learning about this option.0 -
Good idea Mom2JJ...
I really thought more people at my oncologist office would inquire. She did take the brochures and put them in the waiting room but I do not think she mentions them to each patient. It's a shame.
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Hi everyone. I had my first treatment Friday and used the caps. Hoping we did everything right. It was a long day with blood work at 8:30 and chemo ending at 5:20 and still four hours to go with the caps. When we went back we asked about the times-length of premeds and start of chemo and explained that we just needed their help to ensure that the chemo started ten minutes into third cap. We got started and when the second cap was on one of the nurses tells the other that they are not starting with the chemo but they are starting with 90 minutes of herceptin followed by a one hour waiting period and then the chemo can begin. We explained that that was different than what we had been told all along and said they would call doctor or dr's nurse and that no, they were to proceed as they always had which was herceptin first. (But prior to this moment it was chemo first) VERY frustrating as we heard this several times that chemo would be first not only at this hospital but at another as well! My actual chemo time was only an hour and a half.
The other thing that really surprised me is that a nurse asked why I had frozen bags of vegetables which could be seen under my hands and feet and on top of hands and feet. I told her it was to help with neuropathy and help to preserve nails and she said she had never seen that done before. She also was not happy that I was chewing ice because it was affecting the temperature readings. Much later she said she had been at the hospital thirty years.
What bothers me is that this is just not a cancer ward in a hospital but a facility dedicated to cancer treatment and I find it difficult to believe that no one else has done these things --and I'm not talking about the caps. That I could believe.
For those who exercised, as soon as you get hot is it advisable to stop and cool the head or should exercise be avoided a couple of days after chemo? I did exercise yesterday and poured a water bottle over my head. I thought I read that somewhere.
That's the problem you read and read and read and then you go blank -- at least in my case!
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Brax, sounds like you are too much effort for them, it was a bit like that for me the first time. I have had three chemo's now and have lost a lot of my hair but it has slowed down now. I miss my long hair but if I can keep some of it then it will be easier to grow back.
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