I need estrogen!!
Hello all!
It’s been a while since I’ve been on! I hope everyone is doing well. I want to complain for a minute because y’all know more than complaining to my friends. Lol
I’m almost 3 years out. I’ve had my ovaries removed 2 years ago and quiet honestly, if I had it to do over, I would have never done it. I NEVER sleep, my joints feel like I’m 100, I’ve gained weight I can’t lose no matter what I do (I’ve been the same weight before this for years), my skin is pale, I have no energy, and the list goes on. I just want my ovaries back. Or I want something that will give me my life back. I’m almost to the point of getting some kind of HRT. I mean at some point, we think quality of life too. Can anyone give me any insight of anything to take this joint pain away, help me lose weight, think straight, and sleep. Those are my biggest complaints right now. And yes, I know this beats having cancer return, but again, quality of life! I also should add I get testosterone pellets. They help with libido, hot flashes, and other things but not fully. I need estrogen in my life!! Can anyone also tell me about bio identical hormones? I’ve been researching for weeks trying to figure something out. Anyone that gets them? If the help? What they help with? Also, curcumin? Does it help?
Thank you all!
Aj
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Aj, you might want to check out this thread
"Has anyone quit or reduced dosage of the hormonal therapy?" https://community.breastcancer.org/forum/78/topics...
I hope you can access one of the calculators that assess risk & what beneift you're receiving from your hormonal therapy before you make a decision. A lot of these symptoms are ageing, some are hormone related, some can be alleviated but it's definitely an issue for many women.
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I’m sorry that you are having such a tough time and I wish I had some advice. Since your se’s are severe, what has your mo had to say about it? Hopefully someone with personal experience will come along soon. Take car
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About weight loss - I was already post menopausal when I was diagnosed and had just worked hard to shed 50+ pounds...and even with the same diet, I gained back some weight when I started endocrine therapy...all around my midsection.
Here is what might be helpful- as I aged and lost estrogen, I found that I must go low carb and low sugar if I really want to lose anything. Carbs from veggies and to a lesser degree fruit, and occasionally whole grains or a few beans in soup or salad. Protein and healthy fats, too, of course.
Also, try intermittent fasting. You can start by just not eating too close to bedtime.
Exercise...I don’t know how active you are now, I was very sedentary for years and started with just 30 minute walks in the evening and that made a huge difference.
I use melatonin for sleep, regular exercise helps with sleep issues too. Exercise can even help with joint pain, though it seems counter intuitive.
Good luck and hoping you find relief soo
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Thanks for the replies! My MO basically says suck it up.
I got put into instant menopause, so it was brutal. I didn’t get to gradually work my way there.
I have researched until my eyes bulge. I have definitely outweighed the pros and cons. When it comes right down to it, I can’t see myself ever taking any HRT unless I could find something others have used that their MO was okay with. That’s why I’m here asking. I’m just miserable, and want relief, especially from my joint pain. I can’t even reach my arm around my back to scratch it. My hubby bought me a hot tub and I sit in it nightly, but it doesn’t give any relief except relaxation. And yes, I do exercise daily.
I am thankful I’m alive and getting through this like everyone else. I’m just whining today. Actually, I wanna cry.
A
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I was not ER/PR+ but I've read enough on these boards to suspect that your Als may be causing as much of a problem as the lack of estrogen. Talk to your doc about your risks of taking a drug holiday to see if you get some relief. Or maybe switching to a different drug. In the mean time - by all means feel free to rant & rave.
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Sending love and hugs....
Im on Lupron and Arimidex and this week Ive had soo many stressful triggers. Work, and life
Its seemed to increase my side effects, sharp drop in my mood, fatigue, easily irritated and insomnia. Ranting and raving is quite alright.
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The AI you are taking lowers your estrogen and it is the low estrogen that causes the kind of symptoms you've described. I have a lot of the same problems - especially the joints that make you feel like your 100. For the joints, I have found that taking Frankincense (Boswellia) capsules, turmeric, and SAM-E help a lot. The SAM-E can help uplift your mood a little too.
Many on these boards taking AI's complain of terrible insomnia, and I must say that is one side effect that I haven't had. I do take daily 30-40 minute walks (with some exception) and I think that helps me sleep better, but I think the biggest sleep benefit that I get is from using a "happy light" (bright light therapy, a "light box") that is basically marketed for the "winter blues". I use it year round (many do) and while they were originally researched and promoted for SAD (winter depression, blues, etc.) they offer much more benefit than just that. The light will lift your mood, but it also provides some good energy and helps with fatigue. If used properly (first thing in the morning for about half an hour every day) it will re-set your circadian rhythms and I sleep like a baby, except for having to get up to use the bathroom in the middle of the night, and even then, I go right back to sleep in 2 seconds. I get tired at night at almost the same time every night, and I wake up virtually like clockwork every morning at the same time, and am able to get out of bed easily and start moving. I do wake up very stiff from the AI, but that is typical and it begins to improve after I'm up and around for a couple of hours.
I did try melatonin briefly, but I found that it made me feel weird, so I dropped it.
Hope this is all of some help. If you do decide to try a "happy light" I strongly recommend that you research it and learn about how close it should be to you, how long you should leave it on, etc. Some people seem to think they can just use it any old time like a lamp or something, but there is a procedure that should be followed. Again, I sleep so well compared to what I've heard others say, and I think exercise and the light box are the reason.
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ThreeTree, Im going to have to get a happy light. I purchased a treadmill but have been too down to exercise, its time for some inspiration. Thank you!!
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Jinx - I think you slipped in your post while I was in the middle of responding to AJ. Glad to hear the happy light idea might be of interest to you. If you get one, I hope it works well for you. I used it before cancer too, and I have to say, even with the light, the AI still really drags me down and I don't have the same energy at all that I had before cancer, but I think that without the light, it would be even worse. The light seems to help the fatigue enough that I can get motivated to take the walk, so maybe it could help you find the energy to use the treadmill. Many of these things can all combine to help each other - and you're very welcome for the suggestion!
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AJ1970
I have a similar experience to you with the ovary removal. It’s a nightmare so I can sympathize totally. I was not in menopause when they were yanked. That combined with Arimidex is a lot to contend with!
I take turmeric and omega 3 for joint pain. I’ve also used CBD oil orally. For sleep many have success with melatonin, but it actually zonked me too much. If you try melatonin start with a low dose (1mg) and work up. Maybe that could give you some help with sleep!
I recently went back to acupuncture for inner ear imbalance and it helps with hot flashes. Acupuncture can help with a lot the issues you are dealing with!
I have no idea how to help you with the weight gain. I have gained at least 20 lbs since my ooph! I definitely do not overeat and strength train. Every time I mention to my Drs they just say you look great. I do NOT look or feel great.
I hope you can get some relief.
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Melatonin doesn’t work for me. It did at first, after about a month, it stopped working. I tried more but nothing. I maybe sleep 2-3 hours a night. I get tired and fall asleep, but wake up shortly after and toss n turn all night. Around 6am, I fall asleep and get about 3-4 hours. But, I’m never tired. I don’t get it.
I’ve said something to all my doctors over my weight gain. They just say exercise. I do. Daily. I’m always on the go and doing something so it’s not like I just sit around and eat. Exercise and dieting doesn’t bring it off. Last August I was having pain and sick with my stomach. Went to er, urgent care, and doctors for a week before they finally figured out I had gallstones that had obstructed my gallbladder. It turned into infection so I had to have it removed. I didn’t eat a thing for a week. Nothing. Made me sick to think of food and in so much pain. I didn’t lose one pound after all that. That’s when I knew this weight is here to stay unless they find a drug for us menopause belly people. But I’ll take it over this joint pain. I’m not use to moving around this slow. I take turmeric but I’ll try the omega. I see my gyno next week for my pellets and my MO the next. I’m gonna complain some more.
I wish my doctors would have told me what was gonna happen in depth whengetting my ovaries removed instead of just telling me the good of getting them removed. Or I wish I ask more questions. I honestly was just like sure! If it will help. But nothing I can do now. They are gone. But I wish on a daily basis I would have never done it.
Thanks for the suggestions. I will definitely look into all of it.
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ThreeTree: I know this is an old post but I have ? about Boswellia. Is it still helping you and can you recommend a brand? I hate to order just anything off the web. Thanks
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Hi KIDI919,
Today I listened to a podcast interview with Dr. Paul Anderson NMD of Seattle who recommends Boswellia. I bought mine a few months ago after doing the same research it sounds like you have done. I bought Frankincense Boswellia Sacra from Revive Essential Oils. Their website is revive-eo.com. This is the same oil that was brought to Jesus and I marveled that here I am using it 2000 years later. Oh, and there are two kinds: Boswellia Sacra and Boswellia Carterii. The studies I looked at involved Boswellia Sacra, so that's why I chose it. I hope that helps!
Blessings,
Esther0 -
KID1919 - Just saw your question randomly, so glad I did. I've been using Himalaya brand boswellia capsules and I get it from Amazon. They have a "suggested serving" of course, but I take more. I take four of the capsules after the end of each meal, so 3X per day. In addition to helping with joint pain, it is also showing promise as a cancer treatment; kills cells, slows spread, etc., so I take it for that reason too. The Himalaya is expensive, but it seems to work and when I tried another brand once, that was much cheaper, I got headaches and wasn't sure it was working, so I switched back to the Himalaya.
I also use boswellia essential oil on basal cells that grow on my nose. I had had Moh's surgery for one that got out of hand back in 2005 and didn't want to have to go through that again. Then I read online about how the essential oil works real well on skin cancer. At first I though, "yeah, right" and was about to pass the site by as quackery, but then I started reading many sites that talked about the advantages of boswellia for cancer overall; especially skin cancer. I eventually wound up with another spot on the other side of my nose that was acting just like the one did that I needed Moh's surgery for, so I tried to nip it in the bud, while it was still pretty small, by using the frankincense oil and it worked real well - just a few drops on the spot twice a day. It took several months, but eventually just disappeared; never got worse, just slowly shrank and was gone. I put it on emerging spots all the time, with good results.
With the oil I use both sacra and carterii. From what I've read most any boswellia will do the job. The species of tree doesn't seem to matter all that much, although I think there is some talk out there that sacra is best. I get those on Amazon also and yes, they too are expensive. The sacra more so than the carerii. I get Aura Cacia sacra (make sure it is not a blend if you decide to try it - get pure boswellia not mixed). I get NOW brand carterii and it seems to work just as well on the basal cells. I have also started putting the oil all over my chest every day, where I had my mastectomy, in hopes that it might help some in keeping new stuff from popping up in that area. So far, so good (3 years).
Also, I take the capsules internally and only use the oil externally. Some apparently do take the oil internally but I have been wary of trying that for myself. Also, when you use the oil on your skin, many sites will say to mix it with a carrier oil, but I do not. I've had no trouble putting it directly on my skin for years now. I did do a small test patch on my arm when I first got it. Some sites say that Frankincense/Boswellia can be used without a carrier oil. Most however say to use a carrier oil to cover their liability, etc. Apparently there are some oils that can be used straight and boswellia is one of them.
Re boswellia/frankincense and killing cancer cells, there is a doctor/researcher at South Carolina Medical University, I believe it is called, who is looking into this doing human trials. I don't know if her research has been published, but just as in rodents, a dose about twice as much as I take appeared to weaken the genes in breast cancer cells after a few weeks of treatment (she checked pathology samples). I think her name is DeMore and you can find out more about this if you google. She started a human trial in 2019 I think, but I never saw the results anywhere, but I'd like to know how it went - hoping they show up at some point. I am a big fan of Frankincense!
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ThreeTree, Thanks for the info!
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You're quite welcome!
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Thank you for sharing this information regarding Boswellia Sacra. Do you know if there is any interaction with AI treatments? A pharmacist told me there is no research on the interference of letrozole with herbal remedies and a nurse told me there is an interference of elderberry (I use it as syrup when cold symptoms show up) and letrozole. I love using herbs and supplements instead of pharmaceutical medications but I don't want to create more damage than good by mixing them up. In my personal experience, when I was taking turmeric+fish oil+baby aspirin, I got patches of bruses on my body that I was terrified until I stopped them all. Then I read that they all thin the blood and I was taking too much of natural blood thinners.
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Lilly - I have the same concerns that you do, and I've just been kind of winging it re interactions. I do look things up on the internet, but so often they say "no known interaction, but that does not mean there isn't one". I have been taking the Boswellia for years and have not found that it bothers anything else. What I have found is that the turmeric I take in particular does seem to interact with a lot of things. About a year ago I started having a lot of stomach trouble and wondered if some of the supplements I take were the cause, so I eliminated them one by one each for a good week or two to see what would happen. None of them appeared to be related to my stomach problems, but I really noticed that when I stopped the turmeric I got super achy from the Letrozole. I couldn't wait to add it back and I did!
During the time I had the stomach trouble (months) the doctors told me to try Pepcid and Omeprazole. I'm not crazy about over the counter stuff, but I went ahead and gave it a shot. I felt worse and worse and began to feel like I had overdose symptoms in spite of taking recommended doses. I did some internet searching and did find a couple of rare references to how turmeric can enhance the side effects of both Pepcid and Omeprazole. I will always believe it was the turmeric combined with the over the counter drugs that made me worse (went to the ER and wound up getting an upper GI that showed nothing wrong). Those references to the interactions were not found in the common places like Drugs.com, etc. I think I found the one about Pepcid in info by a natural supplements company that sells some kind of turmeric. I too have read about the blood thinning issue, but so far have not had any problems, but I can really see where your aspirin would have caused one with turmeric. I've noticed that many of these supplements and herbal teas have mild blood thinning effects, and yes, then when you put many of them together, you could have a problem.
I also had a problem with real bad chest pain and losing my breath (another trip to the ER) and it was determined that my hear and lungs were fine, but I have something like costochondritis. The dr there put a pain patch on my chest (prescription strength lidocaine) with some more to take home. He said the beauty of the patches were that they were topical and very little gets into your system. Well at first it seemed to help, then I started to feel strange and then I even got kind of shaky or was having tremors or something - just a bad overall feeling. Sure enough, I looked up the side effects and "overdose" symptoms of the patch and they noted the kind of things I was feeling. Again, I wondered about the turmeric. I started to cut the patches in half and I quit the turmeric for a short time, and that is what it took to not feel "overdosed" and scared. I then also saw something somewhere again (not anywhere like Drugs.com) that said turmeric just might well interact with Lidocaine. It seems that turmeric can enhance both the good and bad of other substances. It works synergistically and improves the effects of many things, but it can also enhance the negative effects and cause overdose reactions.
I then had the same problem with Tylenol. I only ever take it once a year, but for this chest muscle problem, I decided to do what was suggested and take it regularly for a few days. I didn't get real sick, but I felt overall "blah" and that there was something wrong, and sure enough if I drop the turmeric and wait a day, and then take Tylenol, I'm OK. I would be really careful with turmeric supplements. I really like it, but have to really watch what else I take it with.
The big problem for me is that turmeric helps with my achy joints and muscles so much that I don't want to stop it. It also supposedly kills cancer cells. I'm reluctant to give it up for all of those over the counter things and now often just wait things like headaches out.
Sorry this got so long. A smattering more: The Sam-E I take is also known to enhance the effects of some other substances (not sure which), but I've had no problems, and again, no problems at all that I can trace to the Boswellia.
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I searched the topic 'no estrogen' and saw your post AJ! I really hope you're doing better! I was dx in '97 and it was stage three and, gosh, not to sound negative, but, like you, I want SOME ESTROGEN! I turned 66 in May and your description of yourself describes me to a T............... I am so so blessed, approaching my 24th year of survival with clear check ups but some days it IS HARD to deal with the aftermath of chemo, radiation and meds.
I'd love to hear from you if you and anyone who'd like to share their story!
Love,
Linda
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In June 2003, I had IDC, stage 1 grade 1, treated with lumpectomy, twice, second time for clean margins, chemo and radiation. Basically what I call, mutilated, poisoned and burned! Talk about being negative! I no longer apologizing because that IS what happened to me. Reluctantly I went on Tamoxifen for about a week.
Second time, Dx in Nov 2018, with ILC same breast, treated with mastectomy with DIEP Reconstruction, and Letrozole, which I stayed on for 6 months and wish I never was on it at all!
All that said, cancer, and treatments are NOT a one size fits all. It would be so much easier on all if it was! Sadly, as much as TV commercials show women saying they had treatment tailored to them, that is not true. Treatments are not tailored to the patient but to the cancer the patient has. Is there some wiggle room in treatment, yes. But unlike being treated for a condition like high blood pressure, cancer treatments are largely hypothetical. Chemo for "hypothetical" breakthrough cells of cancer in your body, radiation for "hypothetical" cancer cells in you breast or glands, hormonal treatment for "hypothetical" potential of recurrence, etc.
I believe therein lies our problem as patients with breast cancer and other cancers. Doctors know what works, but don't know who really needs the treatment, therefore more women get over-treated (I definitely was the first time I had cancer) but they also save many lives. How many? No way to quantitatively say for certain. They know some drugs work well at killing cancer cells (chemo) and preventing new cancers (hormonal therapy).
Thankfully, things have evolved for the better. 40 years ago, women underwent mastectomy and all lymph nodes removed on that side. Now we have lumpectomies and sentinal node biopsies. In 2003 when I had cancer, I had chemo due to my cancer measuring 1 cm. In 2019, a sample was sent for Oncotype test and it showed chemo would not be beneficial.
I truly believe in the not too distant future, new tests will show who will and who won't benefit from hormonal therapy.
Since that hasn't happened yet, I evaluated my cancer and applied it to my life and other health issues. I weighed the pros and cons, cried on more than a few shoulders, and added to topics on this forum. Ultimately, for me, I decided hormone therapy is more of a risk than a help (*for me) and stopped them. I no longer see anyone associated with breast cancer. I will have mammograms on my one remaining breast, but most likely will space out longer than 12 months, more like 14-18 months. I am 68 which played a big part in my decision too.
I am happier now, and have zero fear of getting breast cancer again. I am way more worried about Covid than Cancer and I had a vaccine (albeit J & J because that was the first I could get.)
Life doesn't come with a crystal ball. We all need to make decisions that we feel are best for us. It doesn't really matter what anyone, or everyone else does. Like many of our moms used to say when we wanted to do something they wouldn't allow us to do " if all your friends jumped off a bridge, would you do it too?"
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I love your post Mavericksmom. All we can do is deal with the state of medicine that exists at the moment we need it and make the best decision we can at the time we need to make it. I feel like patient education is a major piece missing from the practice of oncology. By the time we even
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Mavericksmom- "Mutilated, poisoned, and burned!" You're not kidding, and I really like your post. There is such a need for better treatment for all of us, and better understanding by medical professionals of what we are facing and what we go through.
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Could not agree more with the above posts!
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