Has anyone quit or reduced dosage of the hormonal therapy?
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I had my appointment with a dermotologist and she recommended Rogaine for Women and a Biotin supplement. She did not have experience with any other products so that's the only one she could comment on. I asked her about Collagen and she told me that she takes it. I also know a Physical Therapist who takes it so I've decided to try it. I'm hoping it improves the achy joints as well as hair, skin and nails.
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flowernerd we are so sorry you are going through this. We hear this repeatedly. Have you discussed trying yet one more option (Arimidex)? Sometimes people need to even switch again (and again). It may be worth a try, before stopping. Also, here are some things to do to help with joint pain, in case there are things you are missing: https://www.breastcancer.org/treatment/side_effects/bone_joint_pain
These are the three different Aromatase Inhibitors, with links and information: https://www.breastcancer.org/treatment/hormonal/ar...
Please keep us posted !
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THe SEs from AIs are real. But I am also really frustrated in not knowing if they affect the cancer. Hair falls out, joints hurt etc. It seems so common for ER cancer to become resistant or find a new pathway, so a different AI is prescribed. But when one seems to fail, I don't have much, if any, confidence in a different AI.
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GiddyupGirl, I do rub CBD onto my feet and legs sometimes and elevate them on a pillow in bed. Helps some. The last few days I have taken my pill about 4 hours earlier than usual. I was taking it at around 10 pm. Oddly, my legs/feet were better the last 2 nights.So I'm going to keep taking it after dinner and see if that continues to make a difference. Like FlowerNerd and many others I wonder about the dosage. Does one size really fit all?
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anxiousnomore...here too. My nerves are shot after 5 yrs on Arimidex. 5 yrs after recurrence. Eye pain, tinnitus and haven't slept without ambien but maybe 1/2 dozen times...in. 5. Yrs. Couldn't stop it even though I try. Almost weaned off last summer so hoping with warm weather and yard work I can give it a go again. I have stopped taking Attivan though since it was becoming daily but I'm caving and asking my dic for another script. I need to ask about every other day Arimidex or do something. Between covid, cost of living, job stress, shit weather this spring I feel like I'm hanging by a thread that a mouse is knawing on last few weeks.
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Im a premenopausal patient who just got the green light from my MO to take Tamoxifen after taking AI + OS for 5 years. Im thinking of taking the tamoxifen every other day. My older cousin would cut her pill in half and take half every day.
Im not sure which one is worse lol AI + OS or Tamoxifen?
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Jinx, have you started tamoxifen yet? Let us know if it is better than AIs. The AIs are killing me.
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I think the Al are killing me too. Tired, joint pain, tingling in my lower legs blah blah blah. Does anyone know if changing to a different one makes any difference? I'm on Letrozole 2.5mg a day.
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KID1919: Ask your MO for a change. I was on letrozole for eight months with various muscle pain and hot flashes. I started on Celexa which helped iwth the flashes. The MO switched me to anastrozole. I've been on it for five months now and haven't had any problems (knock on wood). Hopefully, one of the three AIs will work for you.
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Kamboka, Thank you for the advice, I was looking at the other choices last night. will talk to onco in july. I guess I am afraid of changing when i can "live" with the SE. I want to have him check my estrogen levels to see if i really need the "normal" dose. Just
tired ....hah,ha of feeling like shit everyday.
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I understand and feel your pain! I actually when through two of the AIs before getting to this late one. So far, so good. Taking a chance and changing meds wouldn't hurt. In fact, one of the other ones might be the one to stop all the debilitating side effects. BTW, my MO doesn't do estrogen level checks as they don't focus on the number since the AI has other purposes besides reducing the estrogen number. Good luck and I hope you can get to a better place with the AI.
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This can explain why I'm losing my mind: Adverse Effects of Aromatase Inhibition on the Brain and Behavior in a Nonhuman Primate. https://www.jneurosci.org/content/39/5/918#ref-13
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Kamboka: yes i was thinking an estrogen level might be a waste of time as our hormone levels fluctuate. I also take thyroid med as i swear the radiation killed my thyroid.
LillyisHere: I also feel my mind is going
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I think the celexa I'm taking for the hot flashes helps with me not getting down and depressed. At this moment, I have a good combo but who knows how long that will last.
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Kamboka - Above you mention that the AI's have other purposes than just lowering the estrogen number. What are they? I have been wondering about this issue for a long time, because if it is only about the estrogen number, there are some studies out there that show the same benefit with MWF dosing, every other day dosing, etc. It seems to me that unless there is some other purpose other than lower estrogen, a lot of us might not need these full daily doses. If you've heard what the other benefits of the AI's are besides lower estrogen, I'd really like to know about them. Thanks.
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I'm losing my mind for sure. I'm on my one year anniversary of torture on hormone therapy. The good news is my crippling pain and numbness in my arms and legs has gotten better. I did four things. I had DIEP surgery (better circulation in my arms?) switched to letrozole (every other day), the rheumatologist gave me a steroid shot about 8 weeks ago and I stopped my statin. The bad news is no real sleep even on my sleeping pill, severe agitation and headache and my cholesterol is through the roof. My cardiologist told me to stop taking it as an experiment so he is going to try my on a different cholesterol medicines, although not supposed to work as well and may have to do injections on myself. My rheumatologist gave me hydroxychloroquine, but I don't want to try it unless the pain comes back. It's used for covid, so insurance will only fill 14 days at a time, lol. The other bad news, I have a lump in my throat when I swallow. Although Drs. claim my bloodwork is normal, I tested high for thyroglobulin antibodies. So I either have thryroid cancer, hyperthyroid, or bad allergies. Going for ultrasound tomorrow. Was really scared at first, but like my breast biopsy, trying not to think about it. My hot flashes are also very bad. I'm considering effexor for hot flashes and agitation, but hate ssri's. It appears letrozole is the worst for cholesterol. How do you choose between crippling pain and heart attack. Ugg. But I need to get the insomnia under control or I will go insane. I slept 10 hours every night after DIEP until I started the letrozole. Oh, and I had a 6 mm kidney stone removed through my bladder too about 4 weeks ago.
Lillyishere, I know you had thyroid issues too. Seems like too much of a coincidence to me when we are both on letrozole. I also got my covid shot, don't know if that is a factor.
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I also had my thyroid fail but i was thinking it was the radiation that killed it. Radiologist said that wasn't it. Maybe it is the letrozole.
RRNJ: have you tried taking the letrozole earlier in the day?, that's all i can suggest.
Seeing primary tomorrow...swelling on my neck at my collar bone near my throat. also hoping it's not more
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I guess we are not in the lucky group of women who have no SE from AI. Insomnia has become friend of mine and honestly, I am glad I'm working from home because I can sneak a morning nap just like cats
. JRNJ, please let me know what the doctor and scan is going to say about your thyroid. I developed a thyroid nodule in 6 months of letrozole. All SE of letrozole went crazy on 6 months anniversary. I hope both of you Ladies get good news. I was told to check my thyroid every year with an ultrasound and specialist visit. It is coming up and I am more nervous about thyroid tests than 6 month visits with MO. There is a lump I still have, I can touch it and feel it even though people tell me they can't see anything. It makes me nervous.
Regarding the covid vaccine, I had the first one and all SE of letrozole flared up. I am scared to have the second vaccine. I asked the onc. nurse and she said there is no data on the vaccine and letrozole interaction. So good luck to us all!
JRNJ, good luck with the scan tomorrow. Let us know.
KIDI919, good luck and I hope good news.
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JRNJ sorry about the miss spell earlier. Have you tried any of the medical weed? My husband and nephew says it helps. Husband usually sleeps a heck of a lot better than me. LOL as i am still up. One on the legal other on what my sister grows. Frankly i haven't smoked in 30 years .... i make up for it by drinking too much.
LilyIsHere: thanks
This disease sucks but at least we have some options. HOWEVER you would think they would have a better handle on it by now.
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Lilly and KID, Thanks for the concern and thoughts. I'll let you know what the results are. Keep me updated on yours too. I don't have a defined nodule or lump, it just feels like the whole thing is swollen. It started the first week of radiation in March 2020. My Dr. also said it is not from radiation, but I didn't believe him. Now I am thinking maybe a preexisting condition that is aggravated by radiation and medications. Maybe allergies. I got a steroid shot 6 weeks ago, a day after my 2nd COVID shot, so it seems to have been triggered by one of those. I have tried the AIs all different times. I find morning to be the best. I also like working from home so I can "try" and sleep later, but a nap would be impossible for me, I'm too jittery once I wake up. Insurance denied the new cholesterol medicine, I think it is another miscommunication between Dr. and company, so frustrating. But now that my arms and legs are feeling better, there is no way I am going back on statins, the fight continues.....
I'm not a weed type of person, makes me paranoid, lol. I used to drink too much in my youth. Now it just makes me feel crappier. But I did try CBD at the advise of my MO for pain and it didn't do much but make me feel dizzy. Just picked up a stronger dose of lunesta, hope that helps. Also to answer your question, I did try 4 AIs. If you are miserable, doesn't hurt to keep trying. Also I take it every other day.
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JRNJ, hoping for good news from your US. I am hypothyroid and had thyroid antibodies show up in my bloodstream for a while before I showed any change in my thyroid levels. That was over twenty years ago and I've been on thyroid medicine ever since. I also had a thyroid nodule that had to be evaluated many years ago (benign), and the good news is that thyroid cancer is one of the easiest cancers to treat. At least that's what my doctor told me at the time. Your post makes me wonder if it isn't time to have the thyroid checked out again. I've also had difficulty swallowing over the past year, and have had multiple tests with a GI doc that haven't turned up anything to explain it. I didn't really think about the possibility of it being my thyroid- I'll have to mention that to my MO. There's got to be some connection there with the thyroid problems and the AI's. It is a weird coincidence that multiple people on this thread with intolerable side effects also have thyroid issues.
I am off of the Aromasin and am not taking an AI at the moment. I think my estrogen levels must still be very low since the hot flashes are continuing fast and furious. It makes me wonder if I should even bother trying Letrozole (my last option) if the point is to lower estrogen. The AI's just don't agree with me - I was in the ER with chest pain and extremely high BP/heart rate just a couple of weeks after starting the aromasin. I stayed on it for another couple of months after that, but I don't want to take it anymore. My goal is to ditch as many unneeded medications as possible! I was referred to a cardiologist who wanted to put me on a statin, but I was very against being on another medicine that causes painful SE's. We settled on Zetia, which is supposed to have fewer SE's but is not quite as effective as the statins. I'll get my bloodwork done again soon and will know if it's effective enough.
LillyIsHere, I understand your fear about getting a second COVID shot. I was in bed for two days with severe aches and fever for two days after the second one. No lasting effects that I can tell though.
KIDI919, also wishing you good news. MY GP suggested that the medical MJ might be helpful for SE's and joint pain, but I would have to check with my employer's policy on all of that.
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ThreeTree: Perhaps I stated the AI purpose confusingly. I asked my MO why I wasn't getting levels drawn to see if the AI was working. My MO said not to worry about the estrogen levels as the AI would help stop the production of estrogen that would inhibit cancer growth. Perhaps someone else on this site can explain better why the number doesn't matter. Here is an article: https://www.breastcancer.org/treatment/hormonal/ar...
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Whatjusthappened, that's what the drs. are telling me, possible hypo, not hyper, but current bloodwork is normal. The letrozole side effectr mimic hyperthyroidism. I just picked up Zetia today. Insurance denied the new drug Nexletol because I haven't tried Zetia yet. After reading all night, I am coming to the conclusion that my swollen neck is probably swollen lymph nodes from the COVID vaccine and that I should be happy because it means it is working. Makes sense, it started after the vaccine. It has been 8 weeks, but still possible.
Kamboka, I read on this site that they don't test for estrogen because the method detection limit of the test is not sensitive enough to tell if the AIs are working.
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To All : interesting to see so many thyroid problems post radiation and then on AI. Thyroid issues are endemic where i live, u name it, someone has it. Saw NP today....going for an US later in June for the swelling area on clavicle. I wish it wouldn't take so long to get an appt. Hang in there everyone.
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Happy mid week!
JRNJ Since getting the green light, from my MO to stop OS+AI I have been prescribed Tamoxifen. Initially my MO wanted name brand Tamoxifen, but after researching we found out that the name brand was discontinued by Astra Zeneca years ago. There are soo many generic versions of Tamoxifen on the market, Astra Zeneca threw in the towel and sold its formula to another pharmacy.
Right now Im waiting for my MO to re-write the Rx for Tamoxifen (generic) and then I will pick it up. I haven't taken Arimidex in a few days and I feel amazing. My Lupron injection is still circulating in my body so I have hot flashes, mood changes slight insomnia and some peripheral edema(temporary). I use CBD oil and flower to help me sleep, morning stretches minimize the edema. I let the mood changes and hot flashes do their thing.
Here is the issue with Tamoxifen though, the side effects are not too pretty. I remember taking Tamoxifen to help bridge me to AI+OS and I had no issues. Once my pharmacy switched manufacturers my side effects went wild. Nausea, vomiting, dizziness, abdominal pain, extreme fatigue etc. Apparently some of these side effects are due to the fillers/binders used in Tamoxifen and they vary by company.
Here is a list of all of the manufactures of Tamoxifen and their ingredients
https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=TAMOXIFEN+CITRATE
The only type of Tamoxifen with no fillers or binders is liquid Tamoxifen (Soltamox). After one month of my Tamoxifen (pill) I will request Soltamox to be prescribed to me, my physician has to pre-authorize it through my insurance because they prefer the pill. However I know I won't like the pill the side effects are just too much for me. Id rather try the liquid form.
Here is info on Soltamox, its only made in the U.S.
In the meantime, since Im off OS+AI I have booked appointments with a Cardiologist, Endocrinologist and my Gyn for evaluations. I haven't seen any specialists since being on OS+AI and now that Im off I want to get checked for everything. Especially since I cant shake my weight, I want to make sure I dont have any endocrine issues, I know I was told I was insulin resistant so Im trying to get that under control. I honestly just need a few months off of everything just to get control of my weight. Id love to have nice metabolic panel results by the end of the summer.
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Kamboka - Thanks for the article. I read it and it doesn't seem to mention any benefit other than lower estrogen "in general" like all the other info that's out there. I had asked my oncologist why she didn't do draws to look for numbers and all she said was, "We just don't do that". She's not really interested in anything outside of whatever is "standard of care" and doesn't think I should be either. I've read a lot that says that diet, weight, exercise levels, natural genetics/dna, etc. all contribute to how much estrogen we produce and how much gets lowered and raised with various things. There's some research out there that says AI's might not work as well in obese women. That suggests a weight connection. Do those women need a higher dose? Do those who are thin and "exercise nuts" need less, or any at all? I just can't believe this "one size fits all" dosing is good for everyone. Estrogen levels that get too low can be life threatening! How are we supposed to know where our individual level is?
Someone on here did offer some detailed explanation about how studies are done in specialized labs and how that doesn't transfer to general lab tests and more. I didn't follow it all real well. I've also read that what shows up in your bloodstream doesn't necessarily match or reflect what's out there in body tissue and that that makes doing routine lab draws irrelevant or something, but then I still wonder how did they get the original numbers and conclusions they came to in the initial research/studies on these AI's? If blood draw amounts don't actually reflect what is actually circulating in our tissues, how did they determine what's effective and what isn't? What kind of tests did the research subjects get? There just seems to be some sort of real gap here in the research or there is something that I am just not getting/understanding. These drugs are so toxic and problematic that I think they should know more about them and that we all should be far better informed about them than we are.
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JRN, this is good news! US can show if there is a swollen lymph node around thyroid area. Do you think it may be a muscle of your neck? Does it hurt if you press it down?
KIDI91, I didn't have radiation or chemo and I never had any problems with thyroid prior letrozole. I truly believe letrozle is the cause.
Jinx27, how long do you need to be on anti-hormonal treatments? It seems that you have started 5 years ago. What happens when you take breaks? Do you feel better?
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Try Faslodex shots. I'm doing kind of better than those drugs. Having terrible vaginal atrophy though. Ugh I'm going to ask my Onc if I can get lower mg. shots.
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ThreeTree: You have some very good questions and I've heard others ask the same--especially about the one size fits all dosing for AIs. JRNJ responded about about what she's heard as the the reason why many MOs don't like to do estrogen levels. Many times, I just think doctors are incurious. They just do what they've done forever and are not always open to think outside the box. I hope someone else can help with some of your insightful questions.
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Bad news. I have three nodules on my thyroid, two are TI-rad 4 and they are recommending biopsy. I am reading the report myself, as it was released late this afternoon and my Dr. hasn't called me. I don't even have an endocrinologist, my primary ordered the scan. I am freaking out and having flashbacks. I knew something was really wrong and my Dr. told me I was crazy and should stop googling information.
Lily, What ti-rad was yours?
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