Collagen supplements - I have been on Ibrance and Letrozole for 7 months now. They appear to be working as my tumor marker has consistently gone down and I feel good. I know that many of you on this site have experienced hair thinning or loss but I had not really noticed that until this past month. Now every time I wash my hair I see a bit more scalp showing and my hair definitely is thinner. I usually wear my hair short but it was always thick and grew quickly. Hair stylists loved cutting it. Now it has been almost 2 months since my last cut and there is not much growth. I did not think that thinning hair would bother me, but it does. I realize it is a small price to pay if the meds are working. My questions are these: Are any of you taking collagen supplements for hair, skin and nails? If you are, do they help? Also, have any of your oncologists told you not to use collagen supplements with Ibrance and given you a reason why you should not use them? I know that biotin can cause issues with bloodwork, but I am not aware if collagen can do that. Anyway, would love some feedback on this. Thanks so much!
Collagen for hair : Collagen... - SHARE Metastatic ...
Collagen for hair
Please be careful with respect to collagen, as there may be an association with breast cancer. " Cancer cells reversely reshape collagen to form a reinforcing cell-collagen loop, which gradually fosters cancer progression." translational-medicine.biom...
And always speak with your oncologist before taking any new supplement.
Wow - thank you for this advice. Hugs Marlene
girlspitz, Thank you for weighing in, and it's good to hear that your hair is getting back to its usual thickness!
Thank you so much Sandra and Anne. My oncologist told me not to use collagen or biotin but never explained why. Now I know! Also, Sandra I am so happy to hear that your hair has returned to its normal thickness. I am hopeful that will happen with me as well. Also, I am glad you have been able to stay on Ibrance/Letrozole for so many years. I would love that, especially since I don't have a lot of side effects other than the hair thinning issue and the meds seem to be working.
I’m taking biotin for a while now, my oncologist never said to not take it. What was the reason why I should not take it. Does it affect tumor markers? I’m on Ibrance and faslodex. Thanks
I guess 1000 mcg ma be too much. My hair is thinking out terribly . I was using rogaine then grow gorgeous but dontbthink much is helping
That is great that you had to purchase thinning shears. It does make me hopeful. My stylist has always texturized my hair because of thickness, now I wish I could have some of that back! I will pray that you have great scans so that you can continue on these meds. Sending you some hugs.
I was told by an American doctor in Ireland that specializes in helping MBC patients with repurposed drugs and diet. She said to avoid collagen especially if it had a particular ingredient which I forget which one that is so I avoid altogether. Organic bone broth might help
Hi!I too am on both Ibrance and Letrozole and scans have shown “ stable” for almost two years. I’m delighted it’s working.
I have always had very thick hair as well. When I had chemo for BC 10 years ago, I lost it all. It grew back but was never the same in texture or quantity. I am losing it now again and, like you, am frustrated by this.
I see a naturopath who recommended Dr John Axe’s Multi collagen for hair, skin and nails. I’ve been on these capsules for about 2 months and see a slight difference in nails (which have been splitting, braking below the quick etc. ) but hard to say with hair. I indulged myself and bought a fabulous wig, which I end up wearing a lot since it looks so much better than my own hair at the moment. I plan to wash my hair in a few days and see if I notice a difference.
My naturopath is very careful recommending treatments given MBC and I trust her completely. I don’t get to see my oncologist often as she’s head of the department and haven’t checked this with her. I believe collagen to be harmless but I’m sure you’ll want to check with your oncologist first. Good luck and all best regards, Kathleen
I just had my second meeting with a Naturopath in the Pacific North West that specializes in oncology . I thought her advice was terrific in our first meeting and I altered a few supplements. The second meeting she has suggested collagen as I’m on Arimidex which she feels cause much of my stiffness. I will do a bit more research before purchasing but I felt comfortable with her recommendations.
I was on Arimadex when first diagnosed with BC in 2009. I hated it as it caused joint pain and stiffness plus weight gain.
I eventually went off it. When diagnosed with metastatic breast cancer in 2019 I was prescribed Femara (Letrosole), which is also an aromatase inhibitor, and have no side effects. Many other breast cancer patients I know had issues with Arimadex so you may want to discuss using another brand with your oncologist instead of taking collagen supplements. Having read an article posted here, I’m disinclined to continue using it and have written to my oncologist asking her opinion.
Thank you for that. I too was given Arimidex in 2007 but I didn’t want to tolerate it while working so I discontinued. Cancer came back in 2017. I’ve wondered about switching to letrozole and I’ve been hesitant about the Collagen. My tumor markers have been slowly rising but the last test showed a slight dip so I’m hoping my next scan in July will be good. The Naturopath put me on glucosamine but I can’t say I’ve seen a lot of difference. My husband says it’s the Spirulina lol
You’re most welcome!Yes, I never took another aromataste inhibitor after the Arimadex as working too and wonder at times if that’s what caused the metastasis 10 years later. My oncologist says not to think about it as we’ll never know. Good point! 😍
She responded to my question in her usual cryptic manner: “Best to stop taking the collagen”. So, make of it what you will, but I’d check with your own doc before trying it. Now I need to see if I can stop my monthly subscription. 🤭
All best,
K
I took Arimidex for the recommended 5 years and was doing well. I wanted to continue taking it as there were studies suggesting that there might be a benefit to taking it for 10 years. My doctor told me that the long term side effects outweighed the benefits. 2 1/2 years after stopping Arimidex I ended up with MBC. I think I would have been better off staying on the Arimidex.
When my current Oncologist learned that I had not taken the Arimidex he said “well you rolled the dice”. Lol. Everything that I’ve read seems to say that many people have it reocurr despite taking Armidex. I don’t regret my choice. Thanks for the info and to Best bird that is always ahead of the game!
Pachira, despite what doctors believe we should do, we still have a right to decide what medications or treatments we are willing to take. After all it is our body not theirs. I have decided not to go on Xgeva or Zometa for now. My doctor is not happy with my decision. I may be rolling the dice, too, with my decision. I may change my mind in the future, but I feel good and don't want to add anything that may change that.
I too have considered going off Xgeva which I have every 3 months. I did read about research that seems to point to caution as there is something called rebound osteoclasts activity and which I interpret simply as a problem with brittle bones. I’m not sure how you stop taking Xgeva and that question has been circulating in my mind. I guess I’ll run it past my Onc and maybe he’ll say to push it to once every 4 months or else he’ll tell me I’m rolling the dice again. Lol. I believe our answers lie more in the nutritional aspect but I’m only prepared to do so much. In my Western books that I love, not so many women lived to 71 so I’m lucky for this time. Chris
My doctor wanted me to take Xgeva every month. I felt like that was a lot. When I questioned her about the side effects I read about, including things that might happen when you stop taking it, she said she had given "thousands of doses and that no-one had any of those". That is a pretty broad statement and made me not really trust her. I have read that Xgeva and Zometa do work, but am not ready to go on either one at the moment. I wish there were more natural treatments. I agree that nutrition is important and can make a difference in our lives. If I was brave enough, I would do alternative treatments. However, I feel that I have to trust the science of meds like Ibrance and Letrozole and see how I do on them. I have only been in this fight since November so I am just getting used to everything. Hope you are able to talk with your oncologist and ask questions about Xgeva and that he will take your concerns seriously. Hugs
Someone on this site posted a video about Xgeva and it was quite amazing. The thing about it is that it seems to help to contain the cancer in the bones. I had also asked for a dexa scan and it showed I had osteopenia in my left hip. My Onc said if you had osteoporosis then the remedy is Xgeva once a year. Arimidex causes osteoporosis so I’m glad to push it out to at. Least once every 3 months. My dentist told me it was out of the body after 45 days. I think Letrozole has the same effect as Arimidex so that’s why your Onc wants you on it. What a lot of questions we have. Hugs to you too
I will look for that video and watch it. I had read about the osteonecrosis and the femur or hip fractures that can occur from using Xgeva or when you stop taking it. I also read about many other side effects like rashes, etc. When I read the list of possible side effects and information about lawsuits filed against Amgen because of Prolia and Xgeva, I decided I don't want to use it just yet. I have never been diagnosed with osteoporosis. I know Letrozole can cause bone issues because it stops estrogen production. I have been increasing my calcium and Vitamin D which I know can help a bit. I'm glad the Xgeva is helping you. I'm sure I will have to go on it eventually. Right now I have only had 2 small lesions that were treated with radiation. I don't have any pain from them, so I am going to think positively that they are gone.
Sounds like you’re in a good place! I had upped my D to 6,000 but the Naturopath told me I should be eating it with some fat. She prescribed a D from NW Remedies so I’m currently on 5,000. I stopped taking calcium when I noticed my blood work was showing I was bordering high. Now back to middle. My friend told me they don’t prescribe calcium in Australia. Not sure if that’s still the case
I do feel really good right now. I take a multivitamin with D as well as Raw Calcium with Vitamin D that has Vitamin K and magnesium. The calcium comes from algae and plants, not limestone and was approved by my nutritionist. So far calcium levels have been good. I think that the 5,000 of Vitamin D sounds great. I don't get as much as that, but think I am getting a good amount. I have smoothies every day with Kefir and Almond Milk, fruits, whole grains and a chocolate flavored protein powder to get more good vitamins and nutrients in my body and try to eat healthy for the other meals, too.
I am having a Dexa scan (for osteoporosis) in two weeks time . I last had one 2 years ago , so it will be interesting to see the effect Letrozole has had in that time . I too am not currently on Xgeva/ zometa etc., but I haven’t ruled it out for the future either. My low volume bone Mets were stable and no pain and I am prescribed Adcal (vit d /calcium ) .
Yes keep us posted on your results! My naturopath wanted me to have another dexa scan as it’s been 3 years and also have my level of D tested. My Onc says it’s not necessary so I might have to go to my Primary. I am having a CT scan in July but that’s not the same. The test is cheap so I don’t really understand my Onc’s philosophy other than he says if osteoporosis is found then Xgeva is the answer. The only way you know for sure about vitamin D is to have a test. In 2007 when I was first diagnosed, the most wonderful nurse practitioner told me Vitamin D. Right for so many things including Covid. Chris
I had my Vitamin D tested 2 months ago. It was in the normal range but not as good as I wanted it to be despite taking extra Vitamin D for a few months and living in Florida where I am in the sun almost every day playing golf or walking for exercise. My doctor did not want to test for it, but I asked so she approved it. When I talked with her about doing Vitamin D and calcium supplements instead of Xgeva she said they would not make a difference. Yet, when they give you Xgeva they tell you to take extra Vitamin D and calcium. Seems like a mixed message to me. I have read so many wonderful articles about the importance of Vitamin D for cancer, Covid, etc. I have incorporated more of it in my food as well as the supplements.
Yes that confirms my resolve to ask for a test. The insurance companies in the US seem reluctant to pay for it. Vitamin D and Melantonin (often said to put breast cancer to sleep) are inexpensive so I’m sure The Big Pharmas are not interested. Just love the information that we can share on this site.
You echo my thoughts! If Big Pharma could patent those supplements and others and make a big profit, you can bet they would encourage doctors to prescribe those as well as medications. I recently started taking Turmeric Complex. My doctor said she would not recommend it but would not be mad at me if I used it. I have read so many positive articles about turmeric fighting inflammation and possibly helping fight cancer. Johns Hopkins, which is a well-respected institution, has done studies on giving turmeric to chemo patients and found it reduced their chances of having heart issues and other negative side effects from chemo. The end of the article even said that perhaps turmeric would be a new tool in fighting cancer. Again if the pharmacies could make money on it, they would promote its use in treating diseases!
Yes I’m taking quonol turmeric and spirulina. I also have a green smoothie 2 days then. Home made muesli the next day. I use a dash of soy milk but the main being water
Will do ! I am in the U.K. so get mine done on the NHS . My 85 year old mum ( who doesn’t have bc ) has dexa scans too as she was classed as at a higher risk of osteoporosis . I have my 6 month ct scan mid June too , and just had my mammogram on my non-mastectomy side , which thankfully came back ‘no evidence of any abnormalities’. x
Good luck with your scan in June. I know it can create anxiety. I have a PET scan the end of June. Recent bloodwork showed reduced tumor marker and fairly stable results in other labs. So happy your mammogram was good. Hugs
Thanks , and you too . I have my CA15-3 tumour marker done with my monthly blood test , but it so far has barely ever moved in 3 1/2 years (18-24 range), so my onc doesn’t rely on it ...I may have marker negative disease.
I have just started my 45th cycle of Ibrance /Letrozole and so far managing to stay on the 125mg dose . Glad your labs were stable too x
I have always had a CA27-29 tumor marker test, not CA15-3. Normal is up to 40, mine is 44 but was at 54-64 at one point. That's how they decided that something was going on as the marker had never been elevated before that. Wow 45 cycles is amazing! I have been taking Ibrance 125 and Letrozole for 7 months. So far so good!
Thank you and Anne for providing this information. I will stop taking the collagen supplements immediately. All best regards,
Kathleen
If you are concerned about thinning permanent or temporary you could consider Lucinda Ellery services. lucindaellery-hairloss.co.uk/I have a pal who used it through chemo and no one even noticed. I’ve had just in case virtual consultation but not used myself (yet)
Hi Sandra: Just chiming in on conversation here. Wanting to wish you well on your scans. I had mine last week and find out today, hopefully, about the cat scan results. Will post more on the bone scan later here.
Cheers, June S.
I am taking Letrozole and Ibrance and my latest scan show no progression. I am just so grateful. Hugs Marlene
So happy for you, Marlene. Hope you keep on having great scans!
Hoping for good scan resilts!
I had my scan on April 30th. Looks like things are stable. Thank you so much for asking!Love,
Marianne
Sandra,Hope you can continue also! This MBC journey is quite a trip isn't it?
Sorry Sandra, I did not mean to imply I would encourage others to use turmeric in supplemental form. No one ever told me that some compounds would use an estrogenic base. I know that would not be good. I will reach out to the company I buy it from and ask them about this. The company I buy from does third party independent testing, so hopefully that makes a difference.
No worries, Sandra. I always appreciate your input. I know you are very knowledgeable about health information based on the wonderful posts you write. I try to gather as much info as I can about things I want to try and hope I am doing things that will help and not hurt me.
Thank you so much for this advice. My hair has thinned too but since I have a new prescription for my thyroid drugs my hair seems to be a bit better and I see less falling out. My old dessicated thyroid drugs might have been stale. Although, I do think the mbc drugs do affect the hair. I am now doing a rice water rinse after I wash my hair and it makes my hair feel nicer. - softer. The rice water is supposed to stimulate hair growth but I don't know if that is just one of those old wives tales. Anyway, I am doing it and time will tell if it is helping. There are recipes on line for the rice water treatments. Hugs Marlene
I am on levothyroxine for thyroid and I know that can make hair thinner too. It has also affected my eyebrows and eyelashes. What new prescription are you on for thyroid disease? Also, thanks for the tip about rice water. I will have to look that up. I am also going to ask my hair stylist for advice on a shampoo. It is an Aveda salon so their products are botanicals and perhaps they have something good for thinning hair.
Thinning hair
Hair Loss while on IBrance?
Shaved hair?
Excessive hair loss the past few months, not just thinning
Change in hair texture/appearance while on Ibrance/Faslodex 
