Cold Caps Users Past and Present, to Save Hair
Comments
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Hello lovely cappers. I am going to try to get remimbursement for my caps, and I was looking for an letter someone wrote that successfully resulted in reimbursement from BCBS. I've looked all over but cannot find it. I wish I had tried this earlier because apparently it does not work the same as flex spending, I should have done it within one year and it has been longer, but the later months are in the timeline.My hair looks great these days, although I wish it were longer. I decided to cut it shorter so I could enjoy the fullness of my new growth. In other news I just got nipple tattoos last week, so I feel very much like this whole cancer experience is behind me (again).
Best of luck to everyone in saving their hair. Totally worth it to me, I would do it again in a heart beat.
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Check page 328 (towards the bottom); the post is from tmb
Good luck with the insurance reimbursement!
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I have another question ladies. How Long after treatment did you guys begin to use hair products... Such as leave in conditioners, and serums..?
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hi dlove, I used Sea Chi leave in conditioner during treatment on the very ends only as my hair was getting so dry. I also used DermOrganic Volumizing spray and mousse on days I washed my hair if I was going out. I waited about 4-5 months before it went back to my regular Aveda products and hair spray.
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I used leave-in pantene on my ends pretty soon after finishing treatments, it helps me get the comb through. Good luck cappers!!!!
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thank you Sciencegal & Hope!
Do any of you cappers know if aromatase causes hair loss? My onc is telling me he might want to switch from tamoxifen to that & I just looked it up and saw hair loss was a side effect
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Am I not supposed to use conditioner after shampoo during the treatment? I was told not to use hair styling products. I'm only using conditioner on back side and bang, try not to touch scalp. My hair is curly and gets tangled so easily without conditioner.... My hard has been shedding lots since Day 18, and my 2nd infusion is tomorrow. I know stress won't help, but can't help it!
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hockeycat- I used some conditioner on my ends
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Just be sure that whatever brand hair products you use afterwards do not contain parabens or sulfates as those chemicals are suspected to cause cancer. My doctor also told me to avoid underarm products that contain aluminum for the same reason, which unfortunately is most of them.
Dlove - Take BioSil to counteract any potential hair loss. It is a form of liquid silica that has been clinically proven to help hair grow stronger and thicker. I have been on Arimidex for almost two years and do exactly that. My hair is thick and heathy as a result.
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Dlove - AI's reduce Estrogen....estrogen keeps bones/hair strong....that is why you may lose hair.
Hortense - I bought the liquid silica. Will wait till after chemo for the Biosil.
m1970 - good luck with BCBS. I have them and their policy for Prothestic Hair stuff for cancer with I think Cold Caps would fall under is 80/20 with a max of $500 reimbursement. I guess $500 is better than nothing.
DermOrganic has a no alcohol hairspray....I use it occasionally....it doesnt really work. And I'll you a drop argan oil on lower part of hair...to try to tame the frizz.
I think all of us respond a lil different to chemo....and are on diff chemo protocols....that I think each person needs to decidedwhat their hair can take or not. Obviously air on the cautious side... I remember one girl telling me she used heated hair straightners on her ends....I would be a lil nervous to do that....but she ended up just fine.
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Just saw the cover of People magazine...Joan Lunden bald due to chemo...I really wish people in the news would at least hear about Cold Caps. I wrote to Robin Roberts about it and she did not seem to believe in them.
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Ang7- Thats very interesting regarding Robin Roberts considering, I believe Amy Robach (also on GMA) used cold caps. Although she does not confirm or deny.
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That's what I mean - they could be such a platform for getting the word out. Cold caps totally changed my whole experience with cancer. Everyone should have that option.
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I agree- the caps changed my whole expereince too- and my outlook. and allowed me to keep my privacy. I feel like we should all be the "poster child" for them.
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My first thought when I saw the cover photo of Joan Lunden was "didn't she know about cold caps?". Using cold caps made my chemo experience that much more tolerable. I was able to look in the mirror and see my normal self at a time when not much else in my life was normal.
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I just wanted to share with everyone that on Tuesday I FINISHED MY LAST CHEMO!!!!!!!!! WITH A FULL HEAD OF HAIR!!!!! What a relief! I'm so thankful for this discussion board and all the things you ladies taught me. I feel like a huge success story and I am so happy to put this behind me!!!
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FL_sunshine - You look fabulous! Congratulations!
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FL sunshine -CONRATS! you look amazing
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Yay FL Sunshine!
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Yay, FL Sunshine!!!!! You look wonderful. Happy dancing for you!
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Yay!! Congrats FL Sunshine! It is such a good feeling to be done.
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fl_sunshine - congrats! So beautiful !!
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congrats fl_sunshine!! Amazing! :-)
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FL_Sunshine you look beautiful. Congrats for your successful battle against hair loss.
Tomorrow is my 4th Taxol session. So past 7 days was my week pause. I noticed that my nails and body hair have grown during these 7 days (especially on my legs and armpits). Even on my head, I can see now the mark of my hair dye (I went to the hairdresser a week before the first IV). Did anyone noticed the same with the weekly Taxol treatment ?
I read a post where someone was anxious because she felt sick during her session and could handle the caps only 2 hours after the end of the weekly Taxol IV. I would like to reassure people in that case: in Europe, we wear the caps at the best only one hour after the end of the IV and it still works (less efficiently than the Penguin 4 hours protocol but still works). So guys, don't lose hope...
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FL - Sunshine....that should be the pic in People (not a bald Joan Lunden).....an article on how to save your hair, your dignity, your privacy and your self esteem while doing treatment for cancer! I hope to be a either ringing that bell in either 3 more weeks....or possibly 6 more if I do more treatments.
I havent been to vocal on this site about the hell I just went through because of my port....but I just spent 12 1/2 days in the hospital (was hospitalized for it 2 weeks prior for a wkknd too)...had 3 operations, IV antibiotics for 11 days, had a blood transfusion and left with two large wholes in my chest that are very painful (took myself off Dialaudid). Anyway, my Onc is changing my chemo from Taxotere/Carbo to weekly Taxol both with Herceptin. I completed 3 Taxotere/Carbo....and tmrw I start weekly Taxol. My Onc only prescribed 3 more weekly....but I think I am adding some Carbo in treatment #2...want to heal a lil more first. 3 taxol treatments is comparable to 1 of my former TC treatments... I was originally prescribed 6 TC treatments....so if I only do 3 more Taxol...that would bring me to 4 total treatments. I may do another 3 to bring me to 5 total treatments which I was leaning towards doing anyway since I only has .6cm IDC. I just dont know if we can handle it and take the time off work.... With Cold Capping it makes treatments that much more difficult especially weekly. But I do understand why I was switched to Taxol....its supposedly easier on your body....so that my wounds can heal.
I hate these decisions....my Onc just says there is no data for what we are doing. If I had 6 treatments of TC+ a yr of Herceptin, my chance of recurrence was about 2%. Now she says if I do just 3 more Taxol (with or without some carboplatin) + yr of Herceptin....she said it somewhere between 0-5%. She arbitrarily reduced the chance of recurrence rate down by a few percentage points.
The truth is no one knows....who will get recurrence and who wont. Theoretically, I shouldnt have any cancer left in my body....it was .6cm (6mm) removed with a bilateral mastectomy....no node involvement...and deep margins. So I am doing chemo on the chance that some suckers got loose in my blood stream. And yes, once you are HER2+ you need chemo to get Herceptin since no studies have been done with Herceptin alone for early stage BC.
The choice of 3 of 6 weeks is weighing on me... for now....I will do the 3...and see how we feel.
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Jennlizza,
That is a lot to go through. A hell of a lot.
@FL_sunshine: I am so happy for you!!!! You have made my day!
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FL sunshine, congratulations. Yeah for another cold cap success story! You look so happy to be finished and your hair looks amazing. I totally agree with Jennliza, you should be the person on the cover of People magazine instead of Joan Lunden. It would be a much more interesting and powerful story.
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FL_Sunshine, congratulations! You look so happy and gorgeous! With full of hair. You are my inspiration! I have at least two more sessions to go. Losing hair quite a bit every day, and noticed losing my eyebrow after my 2nd round yesterday...My husband was a great helper, changing my caps every a half hours for 6 hours! Last time we hired a helper to teach him how to do it. He was so prepared and did it alright! I was a bit discouraged by the large number of hair I'm losing since Sunday.... But I'm half way though. 2 more to go! I can do this.
Thank you all for the inspiration and encouragement.
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fl_sunshine you look gorgeous! I am so happy for you! Gives us all inspiration since you did some pretty touch treatment.
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how long did everyone continue to shed for after penguin cold caps? I'm 6 weeks PFC almost 7. Still have a ton of crazy thick hair but I still see some shedding.
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