Has anyone quit or reduced dosage of the hormonal therapy?
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anyone here had her vaccine? How it went?
There was the following questions in the form:do you have cancer? Do you take medication decreasing your immune system? The answer should be no for both questions? Given that hopefully the cancer is in the past and The letrozole doesn’t decrease the immune system ?Thanks
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I had my first vaccine and my understanding was that if you are just on an AI and done (for now at least) with other treatment, you are good to go.
I reacted to the first shot - got muscle and joint aches, chills, headache, relatively mild nausea, and was real, real tired; no fever. They say those side effects last 2 -3 days, but mine continued. The body aches and chills stopped after a couple of days, but the the headache, fatigue, and nausea continued to show up intermittently for a good 5-6 days. Initially, I thought that maybe the shot had aggravated my letrozole side effects, but then I realized it was side effects of the shot on top of letrozole side effects. Getting the second one tomorrow and hoping for the best, but planning for the worst, as they say the second one is worse.
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I've had both doses, I'm considered high risk for reasons outside cancer. I wasn't asked those questions.
I had a pretty bad bruise from the first dose; I felt like crap for two days after the second dose--mine was Moderna.
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I read that women have more severe side effects from the vaccine because the estrogen increases the immune that fights/reacts to the vaccine more than men. My question is for us who are taking AI (I'm taking letrozole) to remove the estrogen, does it mean we won't have SE from the vaccine? I am not in the age group to be scheduled for the covid-19 vaccine yet but I am curious what doctors have learned in the last 3 months when the first vaccines were rolled to general population.
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I read the same thing about women doing worse due to hormone things, but then I don't understand why, when I'm on an AI and supposedly pretty estrogen depleted, I had the reaction I did to the first shot. The people I know who reacted to the second shot are postmenopausal women - not on AI's, but even with just menopause they're estrogen levels would be lower than those of younger women. I think there is still a lot that they don't know about this - especially when "mixed" with other drugs, etc. I know 3 sisters, all post-menopausal who all breezed through both shots, and they are wondering if it isn't just family genes. Genetics might have more to do with it than hormones. Who knows - we're all in uncharted territory here.
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I have been taking the generic brand of Arimidex over 6 years. The doctor did reduce my dosage to a pill every other day because I was loosing the feeling in my hands and my feet were hurting. When I started on the pills, I had such terrible joint pains that I had to go up the steps on all fours. The hot flashes and night sweats were horrid. They have gotten a little better. What I am upset about more than anything is that I’ve gained 50 pounds since being on the pills. I lift weights and do a lot of walking but nothing is working. Does anyone know if this is because of the Arimidex pills???
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tobyholic - I did not experience weight gain when I was on Arimidex, but many women post about weight gain with Tamoxifen. I took Arimidex/Ibrance for 1+ year, then. taken off since there was progression. Now taking Exemestane/Afinitor.
Covid vaccine. Had slight bruising at site with first dose Pfeizer. Get 2nd dose next week, hopiing not to get fever/bruising that some report. None of the pharmacies were willing to administer in thigh
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tobyholic...so sorry you are experiencing side effects from Arimidex. Sounds like you have been through a lot. To answer your question, yes, aromatase inhibitors cause weight gain. I have always found that contradictory since extra weight increases estrogen levels. They also make exercise difficult which lowers recurrence rates. Just doesn't make sense to me. Good luck and I hope you do better.
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I had my first shot 3 weeks ago, no side effects except sore arm. I get my second on Tuesday. I answered yes to one of the questions the way it was worded, I think "are you on cancer medication", but they didn't ask me about it. I wrote in the blank aromatase inhibitors to make it clear it wasn't chemo. But my side effects from the letrozole are getting worse since starting almost 4 weeks ago. Pain in feet, legs, arms, hands, insomnia sometimes, but not every day. And going back to work last week made it a lot worse. If I don't get 9 hours sleep my pain intensifies and I get bad headaches and I'm sitting in a chair all day. (DIEP 1/29 so still healing, but I've always needed a lot of sleep). So far I don't think it is as bad as the Arimidex, but still pretty annoying. I've concluded I don't think it matters if I take it every day or every other day. Once the pain set in on the Arimidex it didn't make a difference, but I've been trying to take the letrozole every day, so I'll start skipping some to see if it helps. I wonder if the fluctuations in medication and hormones is actually worse for inflammation. The hot flashes have been worse on the letrozole. So far weight has not been an issue, because I gained 15 pounds on chemo, than lost a few on AIs because they made me so sick, but was trying to gain weight for DIEP. And now I just had DIEP and my belly fat is on my chest, lol.
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Hi,
I'm not on here often, but wanted to chime in on the subject of taking A-I, anti hormone. I was nervous to take it, imagining that I would feel terrible bone issues and my hair would thin after its now growing since my last chemo on Jan. 6, 2021. I started Letrozole (Femara) on March 15, and so far not one problem. I'm taking 1,000 mg calcium and also glucosamine Chondroitin with msm as well, just in case my bones are affected. I have spoken with several others locally who had breast cancer and taken an AI, and they tell me they are fine. I would say to try it and give it some time and see how ell you can tolerate it before worrying too much.
I wish you the best! You can do it!!
leslie
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Hi 50artchic, I like your handle, by the way! Have you used flaxseed to help prevent the proliferation of cancer cells? Since you can't take tamoxifen, flaxseed blocks estrogen too. Just so you know my source, I'm posting this naturalpath Doctor's link. She did a lecture to her peers, so it's information dense!
Hope this helps!
DR Tina Kaczor. My link isn't allowed,
But you tube her.
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hi, I had my vaccine, Moderna , no side effects at all. I was on letrozole than Tamoxifen. Had SE with both and was taken off them. Started toremifene and hoping for the best. Did not find a lot of info from other women. Anyone can share experience
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Dmg77, you might contact Salamandra on here for information on toremifene as she has reported that she is taking it after not tolerating Tamoxifen. Hoping your experience is as positive as here has been.
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are the vaccines fighting cancer still futuristic dream or it is close reality
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I believe vaccines will be a futuristic dream for as long as treatments make tons of money. Only if Government pushes giant pharma companies to join efforts to come up with a cure or vaccine like they did with covid-19.
Only 2-3%, is dedicated toward research for Stage IV, metastatic breast cancer
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Thanks Beaverntx
I feel like an evangelist some times... I definitely don't expect toremifene to work for everybody, I know there are women who can't tolerate it, too. I understand why doctors push tamoxifen first - there is definitely a lot more prospective double blind research behind it. But it burns me up that it's not on the standard list of things to try and that there are women suffering like hell with tamoxifen, or missing their favorite anti-depressant, or going through painful AS/OI effects, or even off meds altogether, without ever being offered this drug to at least try and see if it works for them.
I think about the fact that in terms of top of the line evidence (double blind prospective studies) there is actually the exact same amount of evidence for OS/AI for prevention of recurrence in premenopausal women as there is for toremifene. Last time I checked, basically all the research was done on just one of the three AIs. It did indicate and advantage for OS/AI over tamoxifen but only for women with higher risk breast cancer, and across the board they saw that the AI seemed less effective in overweight premenopausal women. I was overweight at the time when I was going through trying to find a drug (I suspect due in part to the stress of this whole thing and maybe even the tamoxifen itself), yet my doc never mentioned this to me.
She spent basically a year telling me how drastic OS/AI was on younger women and how she wanted me to keep trying tamoxifen and avoid it for me if possible, but when I was finally like, ok, then it's going to be nothing, she completely changed her tune and spoke about how I can just try it and stop if I didn't like the effects. She recommended one of the AIs that didn't even have its own study on premenopausal women, while telling me that there wasn't good enough evidence for toremifene.
That was so aggravating. Anyway despite all that, I basically had a good feeling about her, so I kept pushing it, and mentioned the thing with the lack of studies for OS/AI. Finally she said that she thinks doctors are so comfortable recommending it based on their anecdotal clinical experiences. So basically a circular argument. They prescribe it a lot despite the lack of studies and they see enough women tolerate it and not get cancer that they assume it's ok. Which... ok, but then don't rule out toremifene so fast. Especially I asked her what she knew about the clinical experiences toremifene for premenopausal women of doctors in Asia, where the genetic variation that may interfere with tamoxifen absorption is more common, and she had no idea - she'd never looked into it. (FWIW, I don't know about that either, but it seemed to me like it's worth investigating for doctors who are willing to rely on anecdotal clinical experiences...).
I kept pushing and eventually she did some of her own research and consulting and came back willing to prescribe it for me. And yeah, I'll still evangelize about it whenever it seems to me that that option is being ruled out for a woman without her knowledge or any opportunity to try it.
I know it won't work for everyone, but I guess it will work for some. I am lucky that it works for me and I feel gratitude every morning I take that damn pill, and I sentimentally saved the first 90-day bottle I finished all the way through because it felt so exultant (I never got that far on *any* brand of tamoxifen I tried).
Wow that was a novel. I always think I've done pretty well emotionally processing the cancer journey until I start writing stuff like this and I realize that apparently I still have a LOT of baggage and feelings about that part of the process, that are still very close to the surface...
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Hi,
I’m 4 years into Aromasin. Was on several of the other post-menopausal ones as well- had to change because of the price. I am thinking of getting off of it, against oncologist advice, because my anxiety levels keep getting worse and worse. Lots of achiness too but I can sort of handle that.
Anxiety symptoms anyone? Do you know of a group that meets on this site around anxiety relief.
I am very grateful to be 4 years out from my lumpectomy and am clear since then. Still, anyone else here with the extreme anxiety side effect ?
Thanks much and my best to all of you brave people!!!
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Thank you for this. I’m checking this out now. I’m trying to find an alternative to aromatase inhibitors. My anxiety is over the top even at 4 years past surger
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Anxious - I find acupuncture helpful for anxiety.
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Has anyone met with a dermatologist for hair thinning associated with AI's? I was on Arimidex for 18 months and then recently was changed to Femara. The thinning started on Arimidex. I bought some Nioxin shampoo but I'm afraid to try it due to some info I've read that says it can make your hair fall out more before it improves.
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is your dermatologist gave any advice to prevent hair loss? I tried several shampoo with no significant success. I am advised now to take biotin.
Anyone here had success with biotin? Or may you suggest what worked for you?
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Hair loss and AIs - I take biotin (5 mg). I do not think it does much for hair, but it definitely has made nails grow faster,maybe stronger. I just started using "pura'dor" which someone else recommended. Too early to tell if it helps. https://purador.com/products/original-gold-label-shampoo
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I just went to dermatologist for hair loss. I’m not sure if it’s related to Al or not. She sent me for a whole bunch of blood work. And suggested two supplements: Nutrafol and Vivivicil plus.
I have to check with MO on supplements to see if OK to take. So I’m not suggesting you take without checking out ingredients.0 -
I am happy to see that there are others who find the side effects daunting. My oncologist made me feel like I was acting like a baby for complaining. I took letrozole for 7 months and then switched to exemestane for the last 2 months. Both give me terrible joint pain that wakes me up in the middle of the night. My hands and feet hurt all the time. When I decline to take it for a few days, I start to feel good again. I may use the every other day method that some of you are doing. I also am going to get a new oncologist.
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Grandma - did the Exemestane ever give you pain in non-joint areas? I've been blaming a pain in the forearm on lymphedema, but now I wonder if it might be meds. It has not bothered too bad me for a couple of weeks, but a while back I would wake up in the night with a bruising/throbbing pain. I seldom go higher than a 1 or 2 on the 1-10 pain scale, but ths pain rated as an 8 . I also wonder f scalp sores are from the Exemestane.
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Grandma and BlueGirl, I have also had new pain after starting the exemestane. Some is familiar from when I was on anastrozole, and some is new. I definitely have new pain in my arm and shoulder since starting-not just joints. Could also be lymphedema, but it's so hard to know. I think SE's can be a cumulative thing, and not necessarily due to just one condition or medication.
I have taken myself off the exemestane for the time being. I know that's probably a bad idea, but I have just felt so exhausted and I have been in some sort of pain all of the time. I have also been put on 5 new prescriptions to combat the side effects of being on one AI, not counting the over-the-counter stuff. It's a bit much. These side effects are real. Fortunately I have an MO that is willing to work with me, but there are no better options out there.
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Has anyone experienced a tingly, burning sensation in their legs from letrozole? It's from my knees down and this keeps me up at night. I have been on it for about 1 1/2 yrs.
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kid1919 I have had that the last few months makes sleeping miserable. I’ve been on letrozole 17 months. I’m trying vit b6 and magnesium at night for the past three nights. It seems to help a bit, seeing dr for acupuncture tomorrow to see if that will help. If you find a solution please let me know. Thanks and wishing you only good things
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I’m new here, and have been wondering about AI dosages. I’ve been on various AI‘s for about four years, and I’m noticing increasing signs of estrogen shut-down. While my skin is now as thin as tissue paper and bruises if I look at it cross eyed, the good news is that this year I’ll only need to shave my legs once every four days or so!
This makes me think that there may be some sort of cumulative estrogen dampening affect from the AI’s. Maybe in latter years we can get the same affect from a lower dose. I’ll mention it to my oncologist next time I see him. I expect there have been no studies because what company wants spend money to sell less of a drug. 😉
Anyway, no changes now, because for some unknown reason all the joint pain has disappeared! I’m not going to change anything right now Fingers crossed that this will last for a while.
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PrincessBut, this is my problem. I've been on Anastrozole for almost a year. The first several months included a lot of joint pain. That's gone nearly entirely and I feel luck in that regard. But the weight gain is killing me. I'm heavier than I've ever been (I know, also older and Covid), but it's substantial. I hardly recognize my body. It's never been like this. I don't weigh myself, but I've probably gained 20-25 pounds in the year, probably 15 of that just this year. That's A LOT. I'm struggling with what to do. It's a vicious cycle that with more weight, I probably move less, do fewer steps, etc. My eating is so similar so I really can only contribute--at least half of it--to Anastrozole. Yes, we all know there are other AIs. I started on Letrozole, I think, and after a couple months, switched to Anastrozole. But everything has side effects. It's hard to know what to do, but I feel like my weight is really out of control.
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