Thinning Hair -
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Cheryl Xi-Pi, and Serenity, Good luck ladies. Take pictures now and again in 6 months!. It's the absolute easiest solution I've found. I'm just glad I found it before I was bald.
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miranda - If you have the funds, go ahead and get it. Their return policy seems good if it doesn't work for you.
Pi-Xi - Don't look at the lights! Good luck!
Hygeia - I've never heard of that syndrome. I've never had much hair on my arms, legs, underarms, or trunk. Chemo took the last hairs in those spots. I hope you find a solution.
Update: Last Sunday, after 2 weeks of treatments, my daughter told me she thought my hair had more volume. She wondered if I had styled it differently. Nope. Air dried. No product. Seems too early to have an effect, but I think my hairline has more baby hairs that's growing at a nice clip. I did take pictures beforehand.Before chemo my hair grew fast. I started Tamoxifen 4 months after chemo ended, and ever since I noticed the hair on top of my head grew much more slowly than the rest of my hair and seemed to be thinning out.
CaliKelly and Lisey - How often are you using it? I know the recommendation is every other day. I read in a blog that recommends 24 hours between treatments (for all types of laser helmets), but doesn't recommend every day. I've been using the helmet 4 times a week. My schedule is Monday, Wednesday, and Friday evenings, and the 4th session is Sunday morning. My sessions are then about 36 or 48 hours apart. Seems ok so far.
Good luck everyone!
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PIxi awesome! Remember you can use it for 6 months, if it doesnt work send it back full refund! Did you see my before and afters? pm me to be amazed😉😃Lisey we should get $$ from iRestore co.! We're good saleswomen. Serenity i use it every other day. Took 6 weeks to see sprouts but my hair was really stubborn. It's growing faster now too😃
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Faster hair growth sounds great!
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Serenity I think I'll try your schedule, one extra treatment can't hurt!
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Hygeia,
I too was diagnosed with Frontal Fibrosing Alopecia, six months prior to my IDC BC diagnosis. Between the FFA, my daily Anastrozole and the Taxotere chemo, my hair is a mess -- receding hairline, patchy loss and overall thinning. To be honest, I didn't find any of the FFA treatments to be very helpful. But I imagine my BC treatments are contributing to the situation too, so maybe there is hope for some regrowth 1-6 years down the road when I can go off the Anastrozole.
No doctor has connected my two diagnoses, but to me it doesn't seem too much of a stretch to think that my immune system reacting to my growing cancer might have triggered the FFA. I'd be curious to see if there has been any research on that, but in general, it does not seem like there is much research being done on FFA...yet. But this once "rare" condition it is becoming more common, so maybe that will change.
Check out the FFA group on Alopeciaworld.com. I'd also be happy to answer questions you might have. Best of luck to you!
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I use the helmet every other day and am faithful about it. You don't want to use it everyday because the hair needs time to rest. I can back up the guarantee folks... they not only provide a full refund, they also pay for return shipping.
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Lisey and CaliKelly, I purchased the I-Restore but have been afraid to use it as it sounds like more hair might come out when you first start using it. Did you have that? My huge hair loss from when I first started Anastrozole has slowed down a bit so am fearful of it starting up again even if it is just for awhile. Can you let me know what you experienced when you first started using the helmet?
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Mysticalcity, Don't be afraid! I did not notice any increase of hair falling out. In fact I noticed a big DECREASE in my hair loss! My results are unmistakable, I know it is from the helmet, because I tried EVERYTHING and nothing worked at all! Give it a try!
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If you need a visual encouragement, send me a private message, I'll show you my before and after pictures, you'll get that helmet on your head so fast!!😄
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CaliKelly, I have not seen your photos. I'm not sure I want to set up any expectations. Rogaine was a bust. Unfortunately, in Canada it is about a $110 experiment because the customer is responsible for shipping costs both ways, but as a trained scientist, I'm up for it.
Serenity, thanks for the good wishes!
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I didn't notice increase hair fall either... I felt my hair stopped shedding quickly after I started using the helmet. For me, it's the only thing that makes sense because I tried rogaine and it was messy and miserable - and I sucked at being consistent. I didn't want to do hormone pills either, this is mess free and basically 25 minutes of sitting with a helmet on my head every other day. Totally doable.
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PiXi, yowch! On the postage! The company advertised they pay the postage for returning? Doesnt count in Canada? But you know the science behind it , and have some honest testimonials here. Can't wait to hear and see everyone's results! 🤞fingers crossed it works for all as well as it did for Me!
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Dear Cubbieblue,
Thanks so much for replying to my query. I think you are correct that this condition is less rare than it seemed at the outset. I've been haunting the Internet and see that there is information and support in New Zealand and the UK. Here in the US there are few clinical trials (I noticed one at the Mayo Clinic). Thank you for providing alopeciaworld.com.
I'm certain this manifested at least five years before my diagnosis, Nov. 6, 2015, exactly one month after your diagnosis. Following a drastic illness of my only child, my eyebrows fell out and I became hypothyroidic. I didn't notice the loss of hair in my trunk and extremities (my family and I are fuzzy) for some time later.
I've also read that most therapies don't work. When I was faced with treatment for my ILC cancer, I declined the recommended taxotere and docetaxel, backed up by the Oncotype DX score of 12. So I thought the most logical cause was Letrozole. I've had virtually no problems from it so thought that this was my one and only side effect.
My insurance company will not cover Tretinoin at all so I paid for it out of pocket. It seems that any prescription that can be construed to be for "beauty," is denied. Have you papules on your temples and forehead? If so, how have you handled it? What, if anything, has worked for you? As you mentioned, not much works with FFA but I'm ready to give it a go.
I have to laugh. Having grown up in rural Ohio, FFA stands for Future Farmers of America, a much more hopeful topic.
Thank you so much, Cubbieblue
H.
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I just ordered the IRestore!
I held off until today because just in case there is a Black Friday sale with a better price they said I will be able to get a price adjustment since it's within 14 days!
Can't wait to try it!! Will keep you updated!!
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Serenity interesting that you say your hair felt better after just two weeks because I felt the same! but thought there was no way .
For the Canadians here if you order the IRestore at Amazon.ca put it in your cart and wait a few days , the price will go down & they have a $100 discount coupon at checkout , mine wasn’t $650 no tax and the company selling it is honouring the 6 month return policy.
I want to say this is a great educational & support site, everyone is so helpful and it’s great to know you’re not alone in this !
I can relate to the dread of going out into a wind storm for fear my combover would be exposed lol
Hope I have some results sooner than later to report on
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Yay, NYCgirl, Don't forget to take pictures so you can see the progress, I'm so glad I did because I was actually stunned at the difference, I guess I had gotten so used to my poor old noggin being so sparse. Totally hated the wind! My carefully arranged few hairs askew! No!!!!😲. Now, let the winds blow😃 Good luck, girls, keep us updated, it's so exciting!
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Trying to decide between the helmet and the battery pack, or the Max Growth Kit. Either choice would enable me to use the $250 coupon. The battery pack would make the helmet much more convenient; not sure if the shampoo, etc., are crucial. Hmmm!
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Get the battery pack, the shampoo is nothing you can't get elsewhere, and the growth serum active ingredient = Rogaine. The battery pack will give you the freedom to parade around your neighborhood showing your stylish helmet off😉 Actually, I just think it could come in handy, and all the other items you can basically get elsewhere. Btw, I gave a review on the i-restore site, and got a free bottle of the shampoo!
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Hygeia, I do not have a big issue with papules. I don't find a lot of hairs on my pillow or lose a lot in the shower, but it comes out of my scalp very easily if I run my fingers through it. The hairs themselves seem odd -- kind of coarse and zig-zaggy -- and the bulb end where it attached to the scalp has a blackish-looking area. Using a hair product like mousse or leave-in conditioner leaves me with hairy hands, so I do very little styling unless it is a special occasion. I do have a very, very mild deep itchy sensation. When the itching becomes more than mild or I get the red swelling of the hair follicles, I use Fluocinonide topical solution, which I have found is cheaper than Betamethasone or Clobetesol. I've tried the antibiotic Doxycycline, but didn't notice any improvement. I filled the Hydroxychloroqine (Plaquenil) prescription, but the side effects scared me so much I could never seem to get one to my mouth. At first I thought this all was related to menopause (loved not having to shave my legs!) but now I know what is up and have pretty much just accepted my fate.
I hope your child has had a very good recovery from his or her illness. I definitely think stress plays a role. I experienced work and family issues and the passing of both of my in-laws and grandmother in the three years prior to my diagnosis.
I hope your Letrozole treatment continues to go well, and hope you keep me updated on your FFA (non-farming) journey. ;-)
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Dear Cubbieblue,
Thank you so much for your quick reply. My experience has been similar with the exception of a smattering of pesky papules which form an arc from temple to temple. I have had response to Tretinoin. This medicine was twice denied to me because it is for acne vulgaris, so I paid for it out-of-pocket.
I have not yet reconciled myself to this permanent loss. My long, wavy braid defined me for decades.
Thank you for asking about my child. He is actually an adult who has schizoaffective disorder and lately hears and sees things that the rest of us cannot see. It is a terrible disease and although he has good times, the not-so-good times are hideous.
I did look at alopeciaworld but the first screen looked like a freak show, with smiling bald people with tattooed heads. Not my cup of tea.
Thank you again for sharing your experience.
P.S. My son was called Cubby while still in my womb.
Best,
Hygeia
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Any ladies contemplating ordering the iRestore, there is going to be a Black Friday special. Don't know what it is yet, but I signed up to be notified.
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I emailed the president of the company about discounting iRestore for BC ladies. No reply yet, but he's going to get tired of hearing from me!😉
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CaliKelly, it's probably a good idea to be persistent -- he'll have to do something!
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Just got an email to call him directly to discuss🤔😊
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I just sent in a chat and apologized to them and confessed I returned the helmet, but then bought another one under my neighbor's name. I hope by adding my name to the list of BC patients it's been successful for, he will see there is a need.
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I just had a nice talk with the president of the company, he wants to help ladies here who can't afford the laser helmet, has to talk to his people, seemed very sincere. Private message me, if you'd be interested but can't afford it. I also gave him some ideas for breast cancer awareness month p.r. He wasn't that aware of the many women having hair loss from chemo, radiation and hormonal treatments! Hopefully he'll come through 😊
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So funny Lisey, I told him your story!
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Ladies! If you have tried the iRestore laser and it helped, or if you've ordered it and are just starting, email the company at -info@freedomlasertherapy.com. I've been in contact with the owner, he wasn't really aware of how many women have persistent hair loss from chemo and all the other treatments. If we all send emails , they can see the need and possibly discount or otherwise help ladies get the laser helmet. It worked for me and I know a few others of you have had good results, or are just starting to use it. I want them to know, it would be GREAT for their company to help out! Email them! freedomlasertherapy.com
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Email sent! With subject: Breast cancer and hair loss
3 1/2 week update: Got my helmet on. I find myself staring at the mirror watching the strands at my hairline grow! Just like post chemo. I can’t see the hair at my crown very well, but it feels different.
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