Hello Ladies,I'm new here. ER/PR+, Her2 Negative. Was initially stage II breast cancer. Had a lumpectomy and full lymph node extraction on my ride breast and armpit followed by 4 months chemo and 2 months radiation. This was last year. A year later it is back in the same place IDC (ductal carcinoma). Holy cow and it spread. Now I'm stage IV and they are putting me on Ibrance and Faslodex. Anyone else on this? I was reading Jane's book and my oncologist freaked saying Berbermine and Curcumin lessen the effects. They are good if you aren't on "chemo" which apparently iBrance is. Truly looking for help on what supplements (vitamins and herbs) work well with iBrance and Faslodex. Any input is welcomed ! Thank you in advance !
Vitamins, Herbal Supplements that wor... - SHARE Metastatic ...
SHARE Metastatic Breast Cancer
Welcome to the community but, as we always say, so sorry you need to be here...
There are many of us here on that combo (Faslo+Ibrance), myself included. I've been on it for 26 months and find it to be even easier than my last treatment, Letrozole + Ibrance, which I was on for almost four years. Fatigue (manageable) is my only real issue, and crazy hair (!), plus low blood counts of course (WBC's, etc.), but all in all, the "costs" pale in comparison to the benefits...
There are many people here who are much more knowledgeable about supplements than I am, so I hope they weigh in soon. I take only D3 (incredibly important for those with bone mets...well, for everyone actually...studies show significant increased longevity with good levels of D..), K2 (because someone here said that it's important, maybe esp. in conjunction with the D?), and B12, because I'm vegan, so need to take it regardless...
It's interesting what you write about the berbermine and curcumin, I hadn't heard about that. I don't take either as a supplement, but cook with *a lot* of curcumin, so I'll have to look into it. Actually, come to think of it, I do have a bottle of it as a supplement, just never took it....too many pills already...
I hope you do well with this treatment - as mentioned, I'm a fan! And that you get the questions with re: the supplements sorted out soon, please do share anything else that you learn...
Again, welcome...I think you'll find that this is a wonderful group of people who offer great, incredibly valuable info, and support when we need it!
p.s. Oh! Since you're new to this diagnosis, let me recommend a book written by one of our fellow-board members, "Bestbird", aka Anne Loeser. She offers it as a free pdf/download and I cannot express how valuable it is! I was aware of it from this site for a couple of years before I finally took the 30 seconds to download it and wish I had done it much earlier!
Here's a link to the site...if you'd like to order the actual book, there's a link to Amazon, but the complimentary download is the pdf link at the bottom of this page:
Blessings ! I was thrilled to see your response and also immediately downloaded and ordered the book from Anne the "Bestbird" ! Thank you so very much. I'm swimming through an overload of information and it is so helpful to have women who are going through this similar journey.
Again, so appreciative for your outreach ! Just started iBrance and Faslodex today.
Let's stay in touch,
Hello Adele_ Julia and welcome! Just want to wish you well as you start on your new treatment ...I am on Ibrance (125mg) /Letrozole , and I hope Ibrance works as well for you as it has for me ,so far , ( 3 years on this protocol next month )🤞 with tolerable side effects.
I can’t give you much advice on supplements , as the only ones I have taken so far are the Adcal ( calcium /vit D), prescribed by my onc , and a daily glucosamine tablet (vegan) ...for stiff joints , often caused by Letrozole. I am a long- time vegetarian but eat dairy...I try to eat a balanced diet and keep really well hydrated and do some exercise daily ... I have been ‘stable’ on it since my first scan ... I hope you do well on it too ! x
Thank you so much ! I have stiff joints from iBrance and Flaslodex. Wish I knew what to take!
I am in the U.K. and get my Vegan Glucosamine from Boots The Chemist ( It’s Boots own brand for joints , £10.50 for 3 months supply-90 tablets ). It’s formula is plant based , free from artificial colours, flavours and preservatives and lactose free. If you are in US/other countries there will be similar products at all reputable chemists . x
Hi again Julia,
Daily exercise (or just some kind of movement) can make a big difference to aching joints. Have you tried adding Epsom salts to the bath? That's very soothing too. Montmorency cherry capsules or tart cherry juice can also help relieve stiffness. It's really important to seek medical advice before you take anything new. I hope you feel better soon.
Welcome! So glad you found us. I would suggest you find an integrative doctor at your cancer center or someone familiar with your meds. I finally have an appointment with a new Dr. at my cancer center in January to discuss safe and effective vitamins and supplements. I will report back!
I am also on Ibrance and Faslodex.
I am ER+ HER2- as well.
Based on several cancer books written by doctors that I’ve read & information from several on this site, I take the following:
I check the Sloan Kettering site for herbal & vitamin interactions with my cancer treatment before taking any supplements.
In addition to eating lots of healthy fruits & green vegetables & fermented sauerkraut daily, I take the following:
1. Biotin* 10,000 mcg 1/day (hair & skin)
2. B6 - 100mg
3. Magnesium 250mg (340mg daily goal) - helps with blood pressure & anxiety
4. Calcium - Start taking 1200mg 5/29/19 (to support Xgeva shots)
5. Garlic extract 1000mg 2x/day (to lower blood pressure) 1/18/20
6. Zinc 30mg (build immunity) 8/2020
7. Fish oil 1200 mg 1 capsule/day (heart)
8. CoQ10 100 mg 1 capsule/day (heart)
9. Vitamin D 5000 mg 1/day (immunity & health)
10. Aspirin 81mg 7-5-19 (heart)
11. Started taking Tart Cherry capsules 2400mg 1x/day 9-10-19 (immunity)
12. Started 800 mcg of Folic Acid 6/16/19.
13. Reishi Mushroom Herb 450 mg ea, 2 each 7/3/19 (immunity)
14. Turkey Tail (Mushroom Herb) 3each @500mg ea 7-18-19 (immunity)
Joe Tippen’s Protocol;
1. Started one packet (1 gram)/day of Panacur C (Fenbendazole) 8/6/19. 3 days on, 4 days off. Moved to 7 days/week 8/2020 - (update on JT Protocol)
2. Vitamin E 800 IU per day (JT Protocol)
3. Started taking 200mg Tumeric Curcumin with Black Pepper. 6/7/19. (JT Protocol)
4. Started 25mg of pure CBD oil (JT Protocol) 11/4/19.
1. Faslodex shots & IBrance 125mg started 5/24/19. Move to IBrance 100mg 12/9/19
2. Xgeva shots quarterly started 5/29/19
Ativan (Lorazapam) 1mg/day (sleep aid)
Valsartan 160mg/2x per day (blood pressure)
Levothyroxine 112mg ( Thyroid)
Ibuprofen 800mg as needed
Prilosec 1 tab in the morning (OTC)
*Note that Biotin can alter blood work results so I stop taking it a week prior to my monthly blood tests.
Results: 3 PET/CT scans have shown no evidence of disease (NED) since 11/2019.
I hope that helps!
Oh my goodness. Can I give you a virtual hug, prayer and kiss? This is extremely helpful !!!!! I'm not on Xgeva but just started the Faslodex shots and iBrance today. What is the JT Protocol? Blessings ! Julia Adele
Have you seen the Joe Tippens story? I think anyone with cancer should read it and decide for themselves.
The protocol is in here.
Hi hopenowandtomorrow -
I want to thank you for sharing the link, which I'm sure you've done before, i.e. I've read references here to Joe Tippen's story many times but never clicked thru...
But today I did and I think I'm going to take the plunge.
I'd conferenced with the the COC folks a couple of months ago and got the thumbs up from my doc, but have been dragging my heels, not sure why, probably because I sort of dislike taking pills/meds? Aside from the cancer, my body has done a good job (I'm patting her on the back) and I'm not crazy about the statins, metformin, etc. since I don't want to mess with my body's natural ability to keep cholesterol, blood sugar, etc under control? I always say "Aside from the pesky cancer, I'm in perfect health!"
Not sure that makes sense but anyway I've just ordered the...(can barely type it)...dog de-wormer and 99% chance I'll muster the courage to take it when it arrives.
I'll look into the other aspects (CBD, etc.) today/tomorrow, since at this moment I'm get past the weird feeling about the de-wormer (woof!!)..
Anyway, thank you for sharing the link, you never know when it hits someone at just the right moment...
I'll of course share any result that I have since I'll start this protocol with mostly stable results and no change in other treatment...
Has anyone else heard of Curcumin interacting with iBrance? Not sure where this info came from, I have not heard this and I cannot find anything on it.
A wonderful website is Memorial Sloan Kettering Cancer Center where you can look up Herbs, Botanticals and supplements and see how they may interact with clinical drugs we're on. Here is the link on curcumin. It also has a mobile app. My oncologist suggested I stay away from Curcumin and Berberine for now as it may affect how iBrance interacts. Obviously low doses are fine but I was thinking about amping up my intake after a "How to Starve Cancer" book that is based solely on herbal remedies - not the combination of prescription drugs etcetra.
Of course, I don't know for certain, but have been buried in research and open to any and all ideas that can nix this puppy !
Ibrance and turmeric
However, some research suggests that turmeric may change the way that Ibrance is broken down in your body. This may lead to higher levels of Ibrance in your body and increase your risk of side effects. Talk with your doctor first if you want to take turmeric while taking Ibrance.
My oncologist said no turmeric with Ibrance. I am on Xeloda now. One week on and one week off. Working great!! Cancer numbers down and feel better. Reenie
Wow, this is so interesting!! I cook with *a lot* of turmeric.
But, I'm going to take a contrarian stance here....I'm fine re: any side effects of Ibrance, so if the turmeric increases the level of Ibrance in my body, maybe I'm okay with this? Lynn
Thank you for that link to MSK data. I see that Curcumin inhibits CYP3A4 enzyme (per MSK). Since iBrance is primarily metabolized by CYP3A enzyme (per Pfizer), this does show a pretty clear line of thought in my mind that Curcumin can slow/reduce the metabolism of iBrance.
My pleasure - came to the same conclusion and it's good to know others saw the same. My oncologist was pretty adamant about not taking curcumin or turmeric supplements while on iBrance for that reason
Okay, this is interesting, too....If it reduces the metabolism of Ibrance, maybe I should lay off it? Hmmm....Thank you for the valuable info...Lynn
She said cooking with Tumeric is ok just don't take supplements as they will interfere
Thanks, Adele_Julia, what a relief!
BTW, I've been thinking about your situation, newly diagnosed, sifting through all sorts of info, some of it unclear and maybe even conflicting...I think we've all been there!
But I wanted to share the advice that I would give to any friend who was diagnosed. Please keep in mind that, unlike some others in the group, I have no medical expertise, but I've done lots of research, and thinking (not that this comes easily anymore! ), and ask lots of questions...
Diet, supplements, etc., probably do make a difference. If nothing else, you'll feel better and I do think it's worth making changes. I view it as "seed in soil" (cancer = seed/our bodies = soil) and we want to make the environment (soil) as inhospitable as possible. So that's great! (Oh, but the D3 is a must!! And probably K2, too).
But...*but*...I think the single most important thing we can do is to exercise rigorously, as hard as we can.
It took me a while to stop resisting coming to this conclusion because I'm lazy and hate to exercise (!), but I am no longer able to ignore it so off I go.
Here is the article that tipped the scales for me..
..after reading other research; hearing comments from a nurse I know whose onc said "30 minutes a day of exercise is as effective as chemo" (not sure I'm 100% bought in, but you get the gist of it); seeing that my sis, who is the most successful MBC patient I know (triple negative, almost 6 years in, currently NED, sort of runs about an hour a day); and more recently my personal experience (reference my posts, e.g. "I Did It"). Both of my docs are bought in, but the key thing, I think, is that it has to be rigorous exercise, including resistance training.
The second most important thing, in my humble opinion, is to do intermittent fasting, e.g. 16/8. I had started this maybe two years ago based on a study out of UCSF, I think. My big deal onc (major research hospital) said "that's good, but if you can fast 24-48 hours, that's better..) and my local onc was initially skeptical. But then a study came out of USC more recently, and now even my local onc is on board.
Like most of us, I do various other things to try to tip the scales. FIR heating pad, vegan diet, lots of garlic/onions/cruciferous (sp?) veggies, etc. But I think the exercise and fasting matter more...
I thought twice...or more...about giving you more info/advice when I imagine that your head is spinning and you might need time to settle. But then I realized that I would feel remiss if I didn't share my thoughts on this. The thing with the exercise is that, sadly, some of us can't do it because the disease has caused problems, e.g. bone fractures, that make it too difficult. So I think the key is to start early?
My apologies if the last thing you needed was more info/another opinion...
My very best to you! Please know (I think you've figured this out?) that with current treatment options it's possible to have years of good living with this disease. I'll celebrate six years before the end of this year and am still "asymptomatic", i.e. my only issues are minor side effects from the meds. I have widespread bone mets, so it's not as good as NED, but, believe me, when I was dx'd, I never imagined that things would turn out this well! Oh, and I often note: I'm as happy as I've ever been! (JerseyJazz has a great recent post re: happiness! ).
Take care, be well, again - wishing you the very best and many great years ahead!
Adele_Julia - If you happen to look at my posts, probably the more relevant one is "Let's all exercise hard"...Sending my best wishes, Lynn
Lynn (heart hugs), we simply must talk. I'm an ex Olympic caliber swimmer (age 56) and this diagnosis blew my mind. Last year February I had Stage 2. Went through a lumpectomy and removal of a few lymph nodes under my right armpit. Then 4 months of chemo, followed by another full lymphnodal dissection and then 2 months of radiation which ended precisely Nov 23 last year 2019. No one did a petscan after that until I noticed a lump in June showing up in PRECISELY the same location as the lumpectomy (IDC ductal) My breast surgeon thought it was just residual liquid and did a biopsy in October. It's bbbaaaack. The petscan revealed it went to some nodes under my chest near my sternum and are hovering around the outside of my lung lining. Thank GOD nothing in my lungs, brain, liver etcetra. I'm almost lost it. So just started iBrance and Flaxlodex. I must admit I've been "pissed" that my oncologist said they aren't required to order a Petscan after treatment for Stage I/II otherwise we may have caught this 9 months ago. Grrrr. On the other hand I'm pitty partying and feeling pretty down. I lost my first husband to Leukemia in 2009 when my children were 12 and 10 so this is freaking them out to boot. That said, I love your post. Which there were a way to connect privately with you. I'm new and probably don't know how. Love your recommendations. I need to get off my LAZY ARSE and get back in the swing of things. I defintely have K2 and D3. To display my ignorance of all the acronyms here, what does NED mean - lol. By the way, my name is Julia Adele but when I signed up it said don't use your first name so I used Adele_Julia. No, I can't sing. Heart hugs. How do we private chat.? I live in Arizona. Hugs xoxo
My heart goes out to you, my gosh especially about your husband and children, but I feel very hopeful for how well you'll do given that you're young, fit, etc.
I'll note, more broadly, that your experience with your surgeon is pissing me off! If I'm understanding correctly, s/he dismissed the subsequent lump likely because they felt that must have done a good job?
But here you are, I suppose that's all water under the bridge...I'm so glad you found and joined this community! We'll do our best to help you through it all...
NED = "no evidence of disease", i.e. scans are "clean" but as stage IV, cancer is still circulating...
Hi Adele Julia,
Welcome to this site. I'm sorry you have to join us though. I'm not on the same treatment as you, but I am also taking supplements and off-label drugs. I sought advice from my hospital pharmacist, local pharmacist and my integrative doctor to make sure none of my alternative therapies were going to interact with my conventional treatment.
It's so important to get the balance right, as you want to improve the efficacy of your treatment rather than lessen the effectiveness of your drugs.
I wish you well with your choice. The Joe Tippen’s protocol has no side effects & it serves many people very well. The majority of the ones who don’t do as well are those who wait until it’s too late. There are no statins in this protocol & I don’t like taking them either. 🙏❤️🙏
Do your homework. There are studies out there that say Berberine interferes with CDK 4/6 uptake.
I'm hoping to find more people in the DC area! My husband and I spent the September 2019 in Sedona. My favorite place now! Tremendous healing properties and oh those juniper trees!!
Sedona is fabulous ! We live in Scottsdale and were just there in Sedona over Thanksgiving !
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