FEMARA
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Lula73 - I’ve also felt the benefits of curcumin (Tumeric). I have to go off mine 10 days before surgery and now I’m REALLY not looking forward to it!!
Lanne
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Good luck on our surgery Lanne.
I will meet with my MO tmrw to start AI. Not sure what she will give me, yet.
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Nonominmi15 - every MO seems to have a favorite to start us on. Don't hesitate to ask for a different one if the first has too many SE's. Also, many have found that the manufacturer matters due to the fillers. I know I am happier on femara than I was on arimedex but who knows why one of us does better on one than the other.
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Interesting article, especially this part - they don’t know why it comes back.....
Length of Treatment With Aromatase Inhibitors
While it was recommended that people continue tamoxifen or an aromatase inhibitor for 5 years in the past, newer data suggest that taking these medications for 10 years further reduces the risk of recurrence. It's fairly well known that breast cancer may recur many years or even decades after the primary tumor is treated, and this risk is particularly high in women who have had estrogen receptor-positive tumors. We don't know why some breast cancer come back after years or decades, but we know this happens too often.
Both tamoxifen and aromatase inhibitors appear to continue working after they are discontinued, though some researchers believe that continuing hormone therapy may be extended to even longer than 10 years in the future. That said, the possible benefits need to be weighed against the risks.
Aromatase Inhibitors for Preventing Recurrence
https://www.verywellhealth.com/aromatase-inhibitor...0 -
my guess is that sometimes cancer cells "escape" into the bloodsteam at the time of surgery. This could lead to occult cells lodging somewhere and growing. They can be so slow growing that it takes them so long to grow big enough to cause symptoms. I personally believe that is why some are stage 1 then years later become stage 4. Just hoping that doesnt happen to me. Blessings everyone.
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Did you read it gkbuser? There’s also a link on Femara and Zometa. I’ll get it for you. It’s not a guess btw
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Bisphosphonates and early breast cancer
https://www.verywellhealth.com/bisphosphonates-for...
2017 Guidelines
Use of Adjuvant Bisphosphonates and Other Bone-Modifying Agents in Breast Cancer: A Cancer Care Ontario and American Society of Clinical Oncology Clinical Practice Guideline
http://ascopubs.org/doi/10.1200/JCO.2016.70.72570 -
yes I did I think it explained things very well
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Lulu 73 - you're saying the curcumin helped with your memory, focus issues and joint pain? Just want to be sure before I ask my MO about it.
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I started Tamo 3 days ago. So far no SE but taking Tumeric, lemon, Ginger shots 3-4 times a week when I go to a juice store or Wholefoods. I put black pepper in it at home and drink it with a straw to not stain my teeth. It is giving me extra energy and no wrist pain that i had before. Left index finger still stiff in the mornings. I asked my MO about it but they won't give you an answer b/c there is not scientific evidence/research according to her. She only said take Vitamin D, Calcium, multivitamins. No comment on Tumeric, etc.
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I don’t think we need a doctor to tell us if the Femara is causing pain in our fingers. My left index never stopped hurting from Femara. No problem before. My hands felt crippled and stiff in the morning. These doctors should try the drugs they are giving us.
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clynnejohn505- the Curcumin helps with the stiffness and joint pain. It was the newest supplement I had added to my pills that was for focus & memory but it caused bad GI issues so I stopped it. I’ll try a different one and let you all know when I find one that works
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Lula73, I read that curcumin thins the blood? Is that so?
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it is an anti-inflammatory and can thin the blood however relatively it’s less than aspirin does.
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Thanks Lula, well according to other medical conditions, care should be taken with herbal anti-inflammatories.
http://www.simplehouseholdtips.com/best-6-natural-...0 -
Lula, I’m having good luck with this curcumin:
https://www.amazon.com/Me-First-Living-Curcuminoid...
Lanne
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To follow up on marijen's post, I thought I'd copy and paste the part of the article pertaining to who shouldn't use Curcumin or turmeric for quick reference:
- Those breastfeeding and pregnant
- Those with gastroesophageal reflux disease
- Those with gallbladder problems
- Those expecting to have surgery
- Those taking blood thinning medications and herbs
*The second one is likely for those that have an ulcer associated with/in addition to GERD as the ulcer ups risk of GI bleed.
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WAY overdue post here. I'm so sorry. "Life" has prevented my checking into this site for a while. I see that Lanne2389, gkbuser, and moodyblues asked why I said there could be evidence that calcium supplements may not be helpful and possibly even harmful. Now it's been long enough that I forget which source I had read when I posted that. (Yikes! Cognitive effects of letrozole?) JAMA (the Journal of the American Medical Association) did publish an article in December 2017, finding there was not much evidence for supplementation, to help decrease bone loss; however, they did not study people with breast cancer! Tonight, I found this lengthy article from 2013, also from a good source, but I don't think there is any reason for anyone to stop their supplements of calcium or vitamin D based on it! It's tedious to read through too! Of interest to our group might be items #8, 9, and 10. Maybe not, either! I saw that calcium can raise risk of cardiovascular disease (CVD), which is the number 1 cause of death in women with breast cancer (breast cancer is #2); also high doses can cause kidney stones. It does not appear to lower bone loss much in women being treated with AI's. : ( Still, I think our MO's likely know best in advocating for both calcium and vitamin D, and I'm very sorry for any confusion or doubts that I caused! Mea culpa.
https://www.croh-online.com/article/S1040-8428(13)00152-2/fulltext
Mielli
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Also . . . after 3 months plus on letrozole, I now have major pain and stiffness of my bones/joints. I see how common this is from reading the posts here. It's nice to have people who know what I'm feeling, but I don't wish it on any of you! I AM trying to tough it out and stay on it, coping as well as I can. I'm not going to stop the med. I'm swimming, walking, stretching, taking Omega 3 supplements as recommended by the NP at my med onc's office. I'm taking extended dose tylenol every day and night; I cannot take the NSAIDS (ibuprofen, etc.). I feel okay while walking my 3+ miles, but then I fell awful after I'm still for half an hour! I just started CBD oil this week, after a day with my grandkids (3 and 1). I was absolutely miserable and had difficulty moving at all. I keep them 2 days a week, and I want to continue! They are the reasons I moved to FL! Anyway, I feel embarrassed about trying the CBD oil, even though it's legal. I've been researching it, but mostly I see ads! HOW do any of you who have tried it know who has a safe and quality product, without it costing as much as a car payment?! (slight exaggeration) Does it help? When?! How do I know how many mg to take? I have so little contact with my MO, I hate to call and relay the message and have them get back to me to tell me I should not take it. But I know I should call. : ( Help? Thank you, and blessings on each one of you, wherever you are on this unchosen journey.
Mielli
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Mielli - I spent some time trying to research CBD dosages and what dosages to take. Most of what is published online that I saw were articles by CBD manufacturers but I did find a few from (what I think were) medical sources. I didn't save the sites but the consensus seems to be to start at 25 mg, see how that works, and slowly increase if needed. I tried gummy bear type chews (tasted bad) and think I'd go with under the tongue drops if I decide to try again after my upcoming surgery.
As far as brands - since CBD is legal where I live (Oregon), I had a long conversation about it with the manager who stocks it at (gasp!) my local market. He recommended some brands over others (I wasn't buying then so didn't pay attention). If you can get up the nerve, CBD products are also sold at marijuana dispensaries, and the folks there are very knowledgeable about the products they sell and can make recommendations specifically for joint pain, and different formulations - some with a small amount of THC, if that would be right for you.
My MO mentioned medical marijuana in passing once but I blew it off - all before I knew anything about CBD. I've just emailed him to ask what he thinks of it or what the hospital's stance is - will pass along what I find out. I've decided I'm not going to downplay my SEs anymore - we really should be getting more support for these problems. The thought of 5 years or more of this pain and discomfort is sobering!
Lanne
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Thank you so much, Lanne, and I will look forward to finding out what you learn. I may also get brave and call my MO's office. You are so right. I do not want to complain to the people around me all the time, but surely there is help for those of us who end up with joint pain that keeps us from living our lives!
Mielli
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Hi Mielli - got an email back from the nurse. She said “Dr is fine with you taking below but also comments that we don't know a lot about CBD in conjunction with oncology meds due to lack of research.“ I also asked if the hospital pharmacy had any opinions and she reported “Pharmacy finds no interactions with CBD oil, curcummin and cymbalta. As with all cannabis products, not enough research has been done to know all the effects. Please make sure you obtain all cannabis products from a reputable dispensary." I guess for now we're kind of on our own. I have read a few things that said CBD and tamoxifen don't mix well but CBD and Letrozole so far are ok.
Here are links to 2 sites that have interesting info - one is a CBD oil maker that has a great FAQ and the other is a publication that reviews CBD products and gave its top picks for 2018. I have no affiliation with either - and your guess is as good as mine about how truthful the info is.
https://www.marijuanabreak.com/best-cbd-oils-pain-...
https://purekana.com/blogs/news/cbd-faq-and-guide/
Lanne
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my friend is a massage therapist and just began selling cbd products. She has done tons of research on the producers. Some of the products hage more residual THC ( the chemical that gives you the high). THC levels are different if the product is made from marijuana or from hemp. The THC level also is what makes it legal/illegal in your geographic location.
She carries organic thc, as she did not want to expose her patients to more chemicals. I can find out the brand she carries if anyone would be interested
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Lanne! Thank you SO much for all the time you spent and for the excellent information. I have researched a fair amount, but mostly came up with ad sites. I appreciate both of these articles! Thank you again, and I will let you know if it helps! Best to you!
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2Fun, I would like to know what brand she carries. No hurry! Thank you!
Mielli
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2 fun I would be interested as well. Thanks to ball that have shared information. I don't want to be on pain pills my whole life. If I can try an alternate way that works as well i will give it a shot. Ca it is legal for me 🙊
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My MO has extended my five years of letrozole to another two years because research has indicated that seven years total is as effective as ten years. I have tolerated this drug with minimal discomfort. Suddenly this summer, i am waking up every nigh caused by pain, aching and extreme stiffness. Has anyone else had similar experiences and do you think this drug is the cause. I am considering going on a ketogenic diet because it is supposed to help with stiffness and pain. I stay on a low carbohydrate food plan anyway to control my pre-diabetes. I am desperate at this point.
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honeybair, is your most recent bottle of L from the same manufacturer as the ones you've had previously? I've read that pills from different manufacturers might have different binders etc. which could cause their own side effects. My new bottles just got here and they are from another drug maker than my first few bottles. I'm going to pay attention to any different SE's if they occur. I'm hoping for less stiffness etc.
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https://www.verywellhealth.com/aromatase-inhibitor...
This article was posted on the Breaking News thread - thought it would be good to share here.
Lanne
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Sadly, Arizona has just decided that the voters decision for medical marijuana doesn't include the oils. What a pain!
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