Has anyone had hair loss from Ibrance 125 mg. I have lost alot and my hair on sides and top has become very thin. What to do I hate it!!
Has anyone had hair loss from Ibrance... - SHARE Metastatic ...
Has anyone had hair loss from Ibrance 125 mg. I have lost alot and my hair especially on sides and top has become very thin. What to do I?
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Thriver49
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Hi. My mom had hair loss which started 6-7 months after taking Ibrance and letrozole and after some period of time it stopped. Now her hair looks better.
Hi- I am at the end of my 5th round of Ibrance/Legrozole and this round has been the worst for thinning - I have lost more hair this round than any other so far. And I am not seeing any new growth yet. I wash once or twice a week which I don't like. I was a wash my hair everyday girl before this, especially since I walk 2-3 miles everyday in 85 degree weather. I was wondering if anyone here had ever tried nutrafol or asked their onc about trying it. It is an all natural hair growth supplement. ANYONE??? Good luck to you Thriver49 - I hope your loss isn't too bad! Blessings!
Thanx I heard taking Biotin or Collagen can help but afraid to take!
I did forget to mention that I just started taking a collagen gummy once a day. But it is too early to see any difference. I am weary of taking Biotin as I have read from multiple people on this site that it can/might alter tests results. My onc is almost bald and laughs when he says - don't you think if there was a miracle drug I would be taking it too
🤣
My oncologist told me not to take Biotin. I did lose a lot of hair for a number of months on Ibrance but then it stopped as suddenly as it started. Have not had a problem since then.
What about collagen? I use a shampoo that has Biotin in it
I don't take collagen because I have heard it is not a good idea when taking Ibrance and Letrozole. So I am not taking a chance on it. I think my diet supplies enough collagen so don't feel I really will suffer if I don't supplement with collagen. Hugs M.
hi. I have been taking 10,000mcg of biotin capsules for several years now. I am not on ibrance and never have been....letrozole only. I had chemo back in 2013 and my hair never grew back in with as much as I used to have but at least it is not falling out anymore. btw....hair is made of water and protein so make sure you are getting enough of both in your diet. my scalp hurts occasionally and I even get open sores at times. we have enough to deal with....can't we at least have nice hair😉
I agree totally. We at least should have nice hair.
I have a kind hair dresser now who is so supportive and cuts my hair in ways that makes it looks better than it has in a couple of years. She is quite old fashioned although she is young. So her cuts really work for me.
She is also a self - styled natural food guru. She is really into health food in a big way and makes up her own tinctures and things like that. She is the person who told me to take Grapefruit seed extract to kill the bacteria that is triggering my bladder infections. Since that time I am also taking Caprylic acid and oregano. All supposed to kill Candida. There is a doctor on line who believes all cancers begin with Candida (which is an imbalance of good bacteria to bad bacteria.) He believes that when the bad bacteria in the gut take over it allows the immune system to fail.
So I am on a strict Candida diet for over a week now and I am starting to feel much better. This diet is supposed to eliminate bacteria from the body. (from the blood stream). So - basically - no sugars and starches and fermented foods. Although I do use a teeny bit of very good quality miso (which has Lacto basilis ?? ) I make salad dressing using monk sugar, good olive oil and a tiny bit of lemon juice. I am no longer able to take antibiotics so this is my last ditch attempt to stay away from bladder infections. So really I shouldn't be worried about my hair but of course I do. Right now I cannot take my Nature's Bounty because it has sugar but in a few weeks I will add it back into my diet.
As far as goodies like cakes, bread, soft drinks, puddings etc. and all other goodies I am going to have to give them up completely. It is painful but I already feel better than I have in a long time so I will use that feeling to console myself.
I am sending out this information to you and anyone else who might have Candida and not know it. To test for Candida - spit into a fresh glass of water - wait about 15 minutes and if you see fine threads almost like spider webs hanging in the water - you have Candida. If you have a supportive doctor you can ask if the Candida diet is okay for you. There is a lot of literature out there to help you with such a diet.
The diet is severe but in some ways it is very enjoyable. Lots of salads, lightly steamed veggies (low starch veggies), meat, fish, chicken and tofu. So with some preparation and ingenuity it is possible to eat this way and not be hungry. And yes I now drink lots of water. I was getting headaches for the past few months and discovered that I was dehydrated. It is a hard habit to cultivate but I am now starting to enjoy plain water. Although on this diet I think soda water is okay.
Sorry for being so wordy. I just hope we all find the magic key that make mbc go away.
Love and hugs Marlene
I'm feeling much better on a diet similar to yours too. For lots of fab recipes check out the Blue Zones diet! Another positive side effect is it keeps me to a healthy weight without counting calories. Xx
Thank you so much Garden-Lady. I do have that Blue Zones Cook Book and when I am sure I have rid myself of Candida I will try to eat a diet free from additives and sugars using Blue Zone recipes. I love the cashew recipe in that book. I cannot eat nuts for another couple of weeks but love that recipe. I am losing weight on the sugar free and starch free Candida diet. So I am pleased. I was over weight by at least 12 or more pounds. That isn't a lot but I am not tall so it is important to keep my weight under control. Hugs Marlene
Wonderful. I hope it goes well for you. I visited Ikaria in June and stayed with Thea at the Inn which is photographed in the book. It was SO inspiring and rejuvenating! She is a lovely person and very welcoming. Xc
Oh my god, I am dying with envy. I would so have loved to go to Ikaria. In my mid forties I went on a solo journey and spent 7 weeks in Greece. It was a heavenly time. I would love to go back and especially to Ikaria. You are so lucky. And you are inspiring me to go and read my Blue Zone book again. Thank you so much. Hugs Marlene
Hi Marlene, I so glad you're going to re-read the book. It is the cookbook that inspired me to risk taking the trip. Every time I felt depressed, I would have a cup of tea and look through the book because the photos always make me happy. Then my son said 'Why don't you go there mum?!' So with his encouragement, and the oncologist's help and approval, I went.
I strongly urge you and others to live your dreams and make that bucket list happen!
Hugs, Jennifer xx
Jennifer, I am just amazed at your courage and happy that you have a son that encouraged you to take the trip. What an amazing experience that must have been. Just to know such a place exists must make you want to heal and have many more wonderful life adventures. Many hugs to you. Marlene
forgot to mention that my oncologist is fine with me taking the high dose of biotin👍. she said it would not harm and might help??
Thriver49,
I am not sure if the hair liss was from Ibrance or Verzenio, but I had to have my shower snaked because of my hair loss. When I pull it back in a pony tail to swim, I have found that the hair on top and around the crown is very thin.
Has anyone heard anything about castor oil helping hair to grow?
Best,
Colleen
Yes, castor oil is supposed to help hair grow. I just found it so hard to handle. I guess if you dilute it with olive or coconut oil it would be easier to apply. But yes I have heard that it works. Once a week I rub olive oil into my scalp and saturate my hair from the tips to the crown and I sleep wrapped up in cotton turban. Then I wash my hair and it does make it seem fuller. But my best suggestion to you is try Nature's Bounty. You can buy it at Costco. Some of you probably think by now that I am getting a cut from this company. No, I am not but it I believe that there is something to their formula. It helped my hair from falling and now it seem to be thickening. All this within about 5 to 6 months. So I love this product. Hugs Marlene
I use the Nature’s BountyHair, Skin & Nails. I have seen new “baby” hair growing in around my forehead! YAY!
Yes, Yahoo! Keep me posted.
What milligrams do you take as I want to start and there are so many to start with but thinking of the one you are taking.
Thriver49,
Not sure if the mg on the Nature’s Bounty, but I take two as directed. I am about to use some castor oil too. Getting some from Target today. I will let you know, if I notice a difference!
Cheers!
Colleen
I have lost a lot of hair on my almost 2 years on 125 mg of Ibrance and Letrozole. It is very thin and the texture has changed too. I keep it cut very short and have bought 2 wigs for when I go out. It is definitely a side effect of the meds as they stop rapid cell growth so they affect your hair, eyebrows, eyelashes, etc. My hair has never come out in clumps, just gradually noticed the loss of volume. I am stable on the meds though, so that is good. Best wishes to you on this protocol.
The good news is that you are stable on the drugs. Hugs Marlene
Yes, I am happy about having stability on the drugs. One of the wigs I bought is very cute and people always ask me if I just got a haircut when I wear it and tell me my hair and I look great! It is very uplifting.
When I was doing chemotherapy treatments at the cancer clinic some of the women arrived in wigs so pretty that I couldn't believe that they were wigs. So I think wigs are great if you find one that suits you. I look like someone in costume when I wear a wig and my head gets hot so I just was never able to wear a wig. So trying to make my hair grow has been my main focus. But bless you for feeling happy with wigs. Half the movie stars are wearing wigs so if you can wear one you are just part of the jet set! Hugs Marlene
I found one on Wigs.com that is called Winner by Racquel Welch and is synthetic. it is almost the exact color of my hair. I brought it to my hairstylist the day she was cutting my hair and she trimmed and shaped the wig for me as it was a bit too thick on the sides. I get more compliments on it. My hair just does not grow and the texture is so different than it used to be that I cannot do anything with it. I play a lot of golf and wear a hat when I play so my hair is not noticeable. But when I go out and put make up on, it makes me feel pretty to have a great hairdo, too!
I’ve list hair on the right side and it’s thinning everywhere else. Yes I hate it, too. I’ve never heard of biotin and I may check into it. My hairdresser who’s been cutting my hair for ten years, says I’ve lost about a third of my hair. Never have I ever had a hairdresser who said‘I’ve never seen such thick hair!’ . For the last five years my hair turned from auburn to grey. A beautiful shade of grey and I’ve never minded it. I’ve never hated my hair and now I do! I’ve been on I grande 125 for 8 months now. Just happy though it’s working so well on my cancer. It could be worse.
Been on Ibrance 100 for 3+ years. My hair, which was super thick, thinned at the part. It is growing in now, but has a way to go! I shake XFusion Keratin Hair Fibers onto my part and you cannot see the loss. It is a powder. I am seeing less loss recently.
That’s one of the main side effects of ibrance! It happened to me. I rub essential oil’s on my scalp, used better shampoo, used a product my daughter found online called Diti, and after almost 3 years, my hair is filling out! It looks almost pre cancer diagnosis! Of course I take my vitamins and supplements ( from DōTERRA). Hang in there! There are worse things!😊
Sorry to hear about your hair loss. I too lost a lot of hair on Ibrance 100 and Letrozole after being on it a little over two years. I eventually found a product that stopped the hair loss and it has now regrown some of it. It is called Nature's Bounty - hair, skin and nails with Biotin. You can buy it at Costco. I took this product for about five months and was astonished at the benefit. I don't have all my hair back but I have a lot of it back.
However, I have stopped taking The Nature's Bounty product recently because I am on a candida diet and cannot have any starches or sugars. The product has sugar. So until I clear up my Candida I cannot take anymore. But it sure worked. And I will start taking it again in the future. So to continue getting the benefits of this product I just purchased Biotin at my Health Food Store and I will make my own product. Hopefully, I can mimic the The Nature's Bounty Product. It has Vitamin E, Vitamin C and Biotin - so now I will just take those in separate pills. Until I can clear up the candida which might take a couple of months I will stay off my Nature's Bounty product.
I love that stuff and I am so grateful to my friend who told me all about it. Give it a try. And let me know if it works. It takes about 4 month to start seeing your hair growing back. Her hair got really thick. By the way, there is a doctor on line who believes that most cancers are caused by an overgrowth of yeast in the body making the immune system work over time and fail. He believes it is very important to get rid of the imbalance of yeast organisms in the body. He thinks it begins in the mouth and then upsets the balance of micro organisms in the gut. He believes it is our huge intake of starches and sugars and not enough probiotics in the diet. It makes sense to me. So that is why I am on a Candida diet. It is not easy to begin with but there are books and guides to help a person do the diet properly. I am never hungry on the diet and I already feel much better. Good Luck Thriver! Marlene
Does your doctor know you take biotin? I am not sure about it cause I hear it might mess up your test results but I never asked my dr about it yet. I am afraid too!!
Hi Thriver,
No, my doctor doesn't know about the biotin but my last three scans have come back NED. So whatever supplements that I am taking they don't seem to negatively affect my health. I hope that I am healing. I do so many things I don't tell my oncologist. It might even be why I am doing so well.....heh....heh..... Most doctors don't study nutrition and are not even very knowledgeable about drug interactions so I don't rely on them very much. I once asked one of my oncologists if CBD or marijuana would be helpful to me. He just flipped out and said that those were not good drugs to take. I cannot remember his exact words as that is over two years ago but I know from his response that he didn't understand anything about anything other than what he has been told about Ibrance and Letrozole. He was just following a script. So when it comes to supplements and things like that I am trusting myself. I also did spend time with a Naturopath a year ago and she recommended things that I have a strong hunch my oncologist wouldn't have approved. But so far I am really doing well. However on the negative side I do get UTIs and that could be because the Ibrance lowers my immune system. Online I read that women taking Ibrance could expect to get bladder infections at the rate of one every three months. So that fits my pattern.
So now I have to figure out how to combat that problem. I did have another bladder infection very recently that also morphed into a vaginal infection plus a cold. And I took the last antibiotic that they had in their arsenal. It didn't work but along with help from my daughter I am beginning to heal. I am clearing up all three of those infections by going on the Candida diet. Because they have no antibiotics that work for me anymore it is find a solution or die from this.
So I am doing research on what might help me clear up these kinds of infections and prevent them in the future. Right now I am beginning to feel good again - so I would say my own treatments are working well. So I would say to you to trust yourself and then see what your test and scans are telling you. If your cancer is progressing then you might not be so daring. But I recommend doing a lot of research on your own. I also think it is a very good idea to go to a reputable Naturopath. It costs money but it is money well spent. It is probably the safest thing to do and they can answer so many of the questions that you have that the doctors cannot discuss - because doctors didn't train or study those types of situations.
There are now so many doctors on You Tube that present their ideas about health and I listen to them all and decide what makes sense and what doesn't - then follow those guidelines. Also there are some interesting Indian Gurus to watch.
Right now I am on a Candida diet. It is very strict but I am never hungry. If you are interested you can go to YouTube and search for Candida. My daughter sent me some info from her naturopath and those are the guidelines I use. In its basic form it is no starches of any kind, no sugars of any kind. No soy sauces, fermented foods and no starchy veggies. Only eat fruit that has a low level of sugar (berries and local fruits). You can eat meat, fish or fowl but with nothing added only spices. And only veggies low on the sugar and starch scale. And no dairy except cottage cheese and yogurt. There is also some juice fasting involved in this diet. It is good to buy a quality juicer. I feel so good on this diet and I will make it my basic diet in the future. I just really want to be well. And I also feel so good in just over 10 days. Oh and drink lots of water it is supposed to help with leg cramps. I haven't had leg cramps since it got hot here so I also haven't had leg cramps. And water is free at least here it is lovely water.
I wish you the best health and good luck with your hair. I know how stressful it is to lose hair. So my heart goes out to you. Hugs Marlene
Thanx for enlightening me it is very interesting! Where do you live???
On Vancouver Island British Columbia. And where do you live? It is interesting to know where we are all tuning in from. I know women the western world over are linked to this site and it is just such a wonderful experience to share stories with others going through the same experiences. Hugs M.
I live in Florida!!
that is the same brand of Biotin that I am taking.....Nature's Bounty. and my onc does know I am taking and she is okay with it👍.carole xo
Thank you Carole for sharing this. I am pleased to hear that you can share things with your Oncologist. I have some very rigid doctors who don't seem to be able to accept anything going on except to tell me to eat a normal diet - lol - what ever that means. So it is really good to know your onc is okay with it. But has it helped your hair? Hugs M.
hi Marlene. good question. and yet I honestly don't have a good answer....lol. I had a ton of hair....not thick strands but lots of strands....before chemo in 2013. well my hair never came in as before.....the texture was similar but not a whole lot compared to before chemo....I would say maybe 60%? so I started using biotin immediately and have been for 9 years! so did I regain the volume....no. but I am on letrozole and would I have lost more hair if I didn't take the biotin? I don't know but I am too afraid to stop taking in case it is working....sort of? hope that made sense.
my oncologist just retired at beginning of July. she wasn't exactly warm and fuzzy but she was helpful enough. won't meet my new onc until September. not sure what she will say about the biotin😉
hugs....
carole XO
It sounds like you really took action early on and have saved a lot of your hair. Of course hair textures change as we age so how much is due to aging and how is caused by drugs - it is hard to tell. Hugs M.
Hair loss is normal in the beginning but tends to taper off after a while. Mine is back to normal now in thickness, but the texture has definitely changed. I’m on 100 mg of Ibrance.
Wow. Most of us taking Ibrance lose hair and it doesnt' grow back. I have regrown some of mine use a biotin rich product called Nature's Bounty. So I think you are lucky to have your hair back. Are you on a special diet? Hugs Marlene
No special diet at all. I’m going to have whatever I want in the (hopefully) years that remain.
If you diet makes you happy and works to keep you stable then you are probably on the right path. You have lots of spirit and that is half the battle! Hugs Marlene
I just made some chocolate chip cookies 🍪! Hugs to you as well.
Well, chocolate cookies are the best thing in the world but since I cannot have anything quite that yummy on my diet I made some Almond Flour cookies that I can eat on my Candida diet. The are basically three ingredients. Almond Flour, pinch of salt, olive oil vanilla and maple syrup and a few drops of vanilla. Since I cannot have any sugars I couldn't have the maple syrup so I substituted monk sugar and added on egg (also allowable on my diet) which gave it the moisture it needed to hold together. I had my friend over for tea and she said my cookies were wonderful. I haven't given you the recipe because you are enjoying chocolate cookies and are obviously not suffering with UTIs and vaginal infections. But if you ever experience such awful health problems just remember there are alternatives that are actually quite wonderful. Of course, I don't think these cookies measure up to anything with chocolate which one of my favourite foods. However, it does make me feel a bit like I am still part of the human race if I can enjoy a cookie with my tea. When a person is dealing with life threatening health conditions any bit of happiness is very welcome. If you ever wish to try my recipe - let me know I will happily share with you. Marlene
Thanks! I’m glad you got to enjoy them with your tea. It’s the small things we come to truly appreciate.
Hi. I know just how you feel. I am on Ibrance and Letrezole and I Italy I didn’t notice any hair loss then it seemed to happen very quickly. I thought it was the Ibrance but my breast nurse said it could be be the Letrozole and suggested I ask my pharmacy to try Letrozole from a different manufacturer as some of her patients have had good results. I haven’t done this yet as I’m on a break from Ibrance but I do wear wigs that resemble my own hair style. Hope this helps
I have been having terrible hair loss from Ibrance and the texture has also changed! So thin. I want my thick shiny hair back!
I know how it feels to have less hair and have the texture change. It is a real bummer but I have had some success with Nature's Bounty skin and nails that you can buy at Costco. Hugs M.
Thank you! Sending hugs to you.
I also lost a lot of hair. I buzzed it and I wear a wig that looks a lot like my own hair.
Don't give up. You might want to try Nature's Bounty and it is easy to get. Take two gummies per day. It is sold at Costco. But I notice women with no hair and I don't think it is unattractive. But I have always had rather thin hair so losing it was quite traumatic for me. I always envied women with beautiful thick hair. When I did undergo chemotherapy and lost all my hair I was very relieved when it grew back. But even without any hair I noticed that I was still happy to be alive. If you asked me that before I had cancer I would have said that I wouldn't have been happy. My perspective has changed and now I see beauty in so many more ways than I did before. And I love all you ladies who are sharing their journey with me. Love and Hugs Marlene
Hi- Just curious - do you take the Nature's Bounty with a meal? It says to on the label (I have some, but haven't tried them yet) Thanks!!!
Thanks Marlene. I love this group. So informative and caring💕. I always had thin hair too so when it started thinning it made me very sickly looking. It makes me feel better to wear a wig. Wishing you all the best as we continue on our journey which can be really tough at times💕. Theresa
Some wigs are really beautiful and so I am sure you look lovely. It sounds like you have made peace with your hair. Hugs Marlene
Thanks, I kind of have.
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