Doing Well on Aromatase Inhibitors (AIs)
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I too have empathy for our sisters struggling with side effects. I didn't mean to sound unsympathetic at all. I go to the other forums but I don't need to ot be notified of new postings because then I can't help but go there then (i'm a bit compulsive with all social media notifications).
I'm trying to take some control and looking forward in a more positive way. It's working for me so far.... 0 -
Gee, I am glad (for once) that I procrastinated and hadn't ordered it yet!
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New to this forum and looking for some guidance. My last radiation is tomorrow. Scheduled for ovary removal next week and will start med after recovery. My question is: How does oncologist determine which AI to start with? If people experience serious side effects, they switch. But which one typically is recommended to start with? My oncologist wants to start me with tamoxifen but from what I read, AI seems to be a better choice.
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whywhy
I just did a blood test last week for my hormone level to see if I am post menopausal or not. I believe AI is for post menopausal women and Tamo can be for post or pre. I need to also take a bone density test soon to determine which AI med to take. Some meds are harder on the joint/bones than others. I will start hormonal therapy in July after my radiation. I am 54.
Mimi
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Hi, all. I've been lurking here for the past couple of months while I gave my body a bit of break. I completed 6 rounds of TCHP chemo in mid-March, but since I'm triple positive I continue to receive Herceptin & Perjeta every 3 weeks and will do so though mid November. I just had two surgeries to remove and replace my port which causing me pain in my neck and trapezius. I've had some joint pain in my hands and ankles, but that pain is gone and I am otherwise feeling fairly well these days. So my MO told me that it's time to start taking my Arimidex.
Today will be Day 1 and my plan is to begin by taking it after dinner. I intend to be among this group and do well!
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I am starting arimadex tonight too!
My MO started me on letrozole. He said it has shown to have better results on heavier people, as I am.
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Margari and 2FUN,
Good luck with taking the arimadex. Hope you sleep well. Keep us posted!
Mimi
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coach and nonomimi - were you guys referring to the tri tip marker type eyebrow pen? If so, Laura Geller makes one which I have used. It is available from QVC and Belk's - both legit sources, links below. Here's the disclaimer though - not sure it is still being produced, maybe just for QVC?
https://www.belk.com/p/laura-geller-brow-sculpting-marker/590035373165.html
http://www.qvc.com/Laura-Geller-Tri-Tip-Applicator-Brow-Marker-Duo.product.A220088.html?sc=NAVLIST
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Interesting comment on the letrozole and those of us who carry extra weight. It seems to me from reading these boards that every MO has a "favorite" that she/he tries first. For me it was arimedix. After 5 months and lots of headaches, I was switched to femora in Dec. I have felt much better although I have also done better on the exercise routine during that time too. I have continued with the generic claritin. I take my medication first thing in the morning. I have come to think of AI's as one more medication I take for a chronic conditions that I can keep under control. My thyroid medication has been decreased since I started AI's but everything else remains the same 19 months post diagnosis. I took off the 5 lbs. I gained while on herceptin but had no other SE's from H.
For those of you who are just starting AI's, I hope you have an MO who listens to you and your concerns and complaints. Mine never minimizes my aches and pains - and in fact always acted very quickly to check things out (a chest X-ray when I was short of breath and a CT scan when I was having so many headaches.) My MO tells me that "AI's are my friend" and she wants to help me to find one that I will be most likely to continue. And she has, at least for now!
One more word of caution - hydrate, hydrate, hydrate - whichever AI you are on. I have lived in the Phoenix area for over 20 years, and found myself in trouble for the first time ever this weekend. And I know it was just because I was dehydrated even though I always think I drink enough.
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I have followed this thread for several months now. My blood work results in March were post menopausal. I started taking Anastrozole the next day. I have not had a period in 17 months. I cried and moped around for 2 weeks waiting on my body to fall apart. It didn't. I had not SE I felt better than I had in a year of Tamoxifen. I have had 3 great months! Then Thursday I started some break through bleeding. Went Friday morning for blood work. Didn't get a call from my oncologist nurse until Monday after lunch. (I was so mad!! They could have called sooner!) I am not post menopausal I am perimenopausal. My estrogen level was 54 and I need to go back on Tamoxifen. I had no idea my body could do that. ..how does this happen? I thought once I was done I was done! I am on a thyroid medication. I had the right side of my thyroid removed in 2010. I asked the nurse lots of questions but feel like they were not answered. She just kept telling me "your blood work"..... ok I know that but what changed it?!?! She actually talked to me like I was a "tween" having my first period! "You will need to keep record of when you have your cycle, your period..you can do that on a little calendar you carry in your purse....I'm getting mad just thinking about the whole conversation now! BC is scary, the treatments are scary and we do it all for NED. Anyone else have this happen?
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Sorry, Vargadoll ... I am probably older than you. I had a complete hysterectomy before going on Arimidex. It is probably time for a talk with someone (Office Manager, maybe) on how you are spoken to.
Taco1946 ... My thyroid Rx decreased as well since I started Arimidex. I hydrate also. I think it helps with dry skin and dry mouth. Thanks for reminding us!
SpecialK ... A different company called Inspire Uplift. I will check out your brand. Thank you.
Magari ... Best wishes.
All, I really appreciate how positive this forum is. Yes, we share our SEs but the focus always seems to be beating cancer with whatever it takes.
Coach Vicky
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Vergadoll, I completely understand! I was with my MO last Thursday. She said if I cannot tolerate the SE’s of Anastrazole then she would switch me to Tamoxifin. I am post menapausal by 14 years. I have not had a hysterectomy (I am begging for one). I said no to Tamoxifin because I am at a high risk for uterin cancer, ovarian cancer, and breast cancer (nailed that one) because I did not have any pregnancies. She said well Tamoxifin doesn’t affect the ovaries and uterine cancer is easy to detect because you will start bleeding.
My husband was with me...shaking his head..
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Hello everyone, chemo behind me as of yesterday!. Will detox 2 weeks then start arimidex. I think I will start taking early am since being active helps and I'm on my feet all day at work plus in case insomnia is an issue. Coach Vicky, thanks. Sounds like "switching" can include name brand to generic for the same drug before switching to a totally new AI. I'm on thyroid supplements and will ask those levels be monitored closely too ( along with vit D..i tend to run low) I also prefer to stay on this positive thread for my mindset. It's still a safe place to discuss side effects but more importantly to share advice and solutions so we don't have to suffer! Someone mentioned dry eye..i have that already. Any recommended eye drops? Hope everyone has a great day!
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Bella- I posted this explanation awhile ago on the Femara board. It explains how these drugs work and goes in to why it's a 'one size fits all' dose, side effects, blood tests to check various levels and why it's important to shut down that last 20%...
Here's a basic rundown of how all this works:
Before menopause, most of the estrogen in a woman's body is made by the ovaries.
After menopause, the ovaries stop producing estrogen (and there is some data showing they may actually start releasing androgens)
Smaller amounts of estrogen are still made in the body - Androgens produced by the adrenal glands are made into estrogen in fat tissue through a process known as aromatization (the aromatase enzyme is the key to the androgens being converted to estrogen by our fat cells).AIs inhibit the aromatase action.
Everyone of us, regardless of BMI, size, weight, etc. has subcutaneous fat (the layer of fat that lies between the skin and musc)
and some level of visceral fat (the fat behind the abdominal muscles that surrounds our organs), so aromatization will happen regardless of how thin or heavy you are.It has been hypothesized that heavier women may have a higher risk of breast cancer with all other factors being equal compared to thinner women because of this process and the possibility of greater amounts of estrogen production. (key words: hypothesized & possibility). One would think though that since it all starts with the adrenals releasing androgens, that it would go back to how much androgens are released. This hypothesis would only apply to ER+ breast cancers. Anyway that's a whole other topic with no definitive evidence either way. On a side note, being overweight or obese is a risk factor for developing any type of cancer and is true regardless of gender.
There is a lot of discussion on various boards in multiple disease states about why a thin person takes the same dosage as a heavier person. Dosing of medications depends on several different factors and weight isn't always one of them. (Weight is usually a factor for children's dosing as their bodies are not fully developed and so much smaller with far less blood volume than an adult.) Let's take ibuproen or tylenol as an example: dose is based on weight in children but not adults for this very reason. We also know from phase 2 trials that there is an overdose threshold for both. But you likely don't think twice about popping 2-4 ibuprofen/2-3 tylenol at a time for a headache even though the bottle says to take 1-2. Very similar to pain relievers, when it comes to AIs and tamoxifen, weight is not considered a factor based on results from clinical trials. The AIs (as well as practically every other med on the planet) have been tested to find the dose that delivers the greatest efficacy with manageable side effects. Dosing tests are done in phase 2 clinical trials. This is where they test different doses for efficacy and analyze differences in dose vs weight, vs severity/duration of disease, etc. Phase 2 trials can be harder to come across in the public domain and may have to be requested from the pharmaceutical manufacturer. Phase 3 trials are the ones where you really see just how effective a given dose is as that's when they test for efficacy, safety and longer term outcomes. If it makes it through Phase 3 trials then you know the med is as effective/as safe as or more effective/safer than the gold standard drug that was first developed to do what the particular drug does and/or compared to placebo. If there is no gold standard drug in existence then its studied vs placebo for the desired effect with manageable side effects.
Another thing on the side effects listed in the prescribing information of a medication. All the side effects listed may not be caused by taking the drug. You always have to look at the difference compared to placebo. The reason is study participants can experience a placebo effect. (Have you ever noticed how headache, nausea, GI issues and fatigue are listed as a side effect for just about every medication on the planet?) Additionally, if you're in a clinical trial and lets say you get the flu (headache, body ache, nasal/chest congestion, fever, sore throat, body aches, nausea, etc), you have to report those symptoms as side effects to the research doctor even though you know they were caused by the flu and not the drug. The size of the trial hopefully evens out the numbers when the side effect incidences are averaged.
They don't test for hormones when you're on an AI because what will you do with the information? You're already doing all you can do by being on the AI. Additionally its a complex and very expensive set of labs that are done and unless you've got something like precocious puberty or growth hormone disorder going on insurance typically will not pay for it (even then they don't like to pay for it). When you have your "hormones" tested by the OB/GYN they are usually just testing for the FSH (follicular stimulating hormone) results. Its kind of a backwards way of testing - the FSH levels go up as the estrogen levels go down. If your FSH levels are elevated that is an indicator of menopause. No need then to order the much more expensive test for estrogen levels. On an AI, your FSH numbers would be high and if we pulled an estrogen level it would be low.
Also if we look at the women taking tamoxifen, their circulating blood estrogen levels often go up on the drug because the estrogen is still being made but cannot enter the cells as tamoxifen blocks it's path. The body may at that point increase estrogen production in response to the lack of feedback from the cells. All this estrogen is now trapped in the blood. The liver will eventually metabolize it but sometimes the liver can't keep up and if you were to pull an estrogen level it would be elevated. FSH would also likely be high as well.
Why do we take AIs if its only addressing 20% of the overall estrogen levels? When we hit menopause (naturally, surgically or med induced), that 20% just became our new 100%. By stopping the aromatase conversion process, we effectively take that estrogen level down to 0 (or almost 0). Even though the amount of estrogen is lower than before, it does not change the fact that the ER+ cancer cells use it for "food". As long as they have food they will continue to thrive. Here's an analogy: lets say you had an ant infestation at your dog' or cat's feeding dish over the scattered kibble that your pet didn't eat/got pushed out of the bowl. Would it make sense to physically remove all the ants you can see right now knowing there is a possibility that there may be some more in the wall that you can't see (surgery), perhaps lay down some poison to hopefully take care of any strays/reduce the size of the population (chemo if warranted) and then just clean up 80% of the dog/cat's food which allows the remaining ants to survive & reproduce (menopause) if your intent is to eradicate them? That remaining 20% of food just became those ant's new 100% of food; keeping in mind that the demand for that food also went down with the reduction in the ant population from the removal and/or poisoning. Why do some women have recurrence/mets while on AIs? A lot of it goes back to the oncotype tests and recurrence rates. Some cancers are just more aggressive than others and they grow and replicate faster than the AI can starve them. Many women have ER+ & PR+ cancers. Although menopause significantly lowers the amount of progesterone being produced, and we've effectively taken the estrogen level to 0, nothing is stopping the ovaries from producing the little bit they are still making (unless you've had them removed). This can also lead to recurrence/mets. If the cancer is triple + then the HER2 component can come into play as well.
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Lula73, this was timely, as we are dealing with exactly the ant scenario that you use for illustration!
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🤣😂🤣 I hate ants!! Somewhere I have an easy ant elimination treatment recipe. I’ll see if I can find it for you. Also, have you ever done mosquito treatments at your house? They greatly reduce ALL bugs including ants.
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We don’t have many mosquitos although warming climate seems to be increasing them here. The problem with a broad spectrum pesticide is that it would also kill the house spiders, which we would very much like to keep. They are coddled and treasured. This house is about 125 years old and leaks like sieve, so I guess a few ants are to be expected. We’ve put down bait traps.
I’ve read all the abstracts from the recent ASCO gathering and now am wondering about taking Clarinex/desloratadine. Seems to provide some benefit in preventing metastasis, more than Claritin/loratadine. I see my MO tomorrow and am going to press her on this. Requires a prescription. Medicare doesn’t cover it, but it’s affordable by mail from Canada.
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Wow, Bella. Sorry you are having so much trouble getting a hysterectomy if that is what you want. Why wait until you have symptoms of uterine cancer before taking it out. And ovarian cancer is even harder to diagnose. I have never been sorry for the hysterectomy I had at age 35. I too was never pregnant. One less thing to worry about. I hope you can find a more cooperative doctor or at least get a second opinion about your options.
Thanks, Lulu for reminding us why we take these drugs. I, for one, do not believe that it because of a physician conspiracy but then my wonderful DH is a retired general surgeon.
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I also never had any kids and had a total hysterectomy. Don't regret one single thing about getting rid of my lady bits!!
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Bella-do you still see a GYN? Would she/he be open to ordering the hysterectomy? I will say it was a very good decision for me.
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No, my gyno and my MO are on the same page
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I obviously have to experience ovarian cancer and:or cervical/uterin cancer before they will decide that I need to have those removed
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Bella - I can't tell you how angry your physicians make me! I'm so sorry. Hope you can find a different team.
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Ditto what Taco said. A second GYN opinion may be a good idea. Let me know if you need some names in your areaand I’ll see what I can find out as far as who is a good one to see.
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Thank you for your detailed post and explanation.
My new MO does test every 6 months for the following:
Luteinizing Hormone
Estradoil
Follicle Stimulating Hormone
CA 15-3 (My MO said this is not a great test but will show a presence of specific antigen for cancer.)
One reason that I changed Oncologist is that my original MO Team discounted hormone testing when starting and throughout the duration of Arimidex. The NP told me that estrogen was everywhere in my body and could not be tested. I would leave an appointment unable to comprehend that I was expected to take a pill for 5 years and no one would even do a base line test of my levels. My Primary Care (PCP) understood what I was saying and he did my baseline.
I am a numbers person (statistician for part of my work). I could not continue Arimidex without seeing some numbers. That is just the way that I am wired. It was the same with having the Mammaprint and Blue Print. I had to know my percent of non-recurrence based on my cancer tissue if I was going to complete chemo and Herceptin.
If there is one thing I have learned on this journey it is to get with the medical person that works FOR me. They also have to include my DH and be respectful to him. My original MO made the comment about how expensive the Mammaprint test was. I was fortunate to have a very understanding Insurance Case Manager. She told my MO that my insurance had been well-paid for by the military service of my husband (I still pay premiums and co-pays.). The original MO never mentioned cost again. I know that I am very fortunate to have the insurance I have.
We fired our first PCP and interviewed others until I got a match. I went out of network for my Plastic Surgeon (PS) and filed a complaint on the network PS. My DH said to the network PS,"you will never touch my wife." The network PS told us after the mastectomies surgery he would "glue me together and see me in a couple of weeks". The PS we went with saw me every 48 hours the first week and 72 hours the second week of surgery.
Sorry for the rant about medical people. I just think this journey is hard enough without someone giving us grief.
Again, thank you for you post. I have save it to reference again.
Coach Vicky
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For some good news:
I met with the NP at my Dermatologist's practice yesterday.
She carefully examined my hair and said it was definitely thicker than in December (6 months ago). I don't know if it is Rosemary oil or not nor does she. I am so happy she could see the difference.
The jury is still out on my nails. They have stopped peeling and I keep them cut short. The NP thinks that at the year end of chemo and Herceptin (August 2018), I may see growth again. She is unsure if Arimidex is halting the nail growth.
What I really like about this NP is her willingness to work with me and understand about Arimidex.
Coach Vicky
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Hey Coach Vicky, where did you get your rosemary oil and how often do you use it? Glad to hear things are getting better for you! Also , do you take extra biotin? Just wondered. My last chemo was Monday. I have had slow hair growth throughout treatment but I'm ready to do what I can to encourage faster growth. My arimidex is still at the pharmacy waiting for me to pick it up. Ha ha!
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Thank you for your responses. I love my gynecologist. I have been with him for 18 years. He found my lump and got things moving quickly to get me into our breast cancer center. He is aware of my fear of ovarian cancer and uterine cancer and does vaginal ultra sound every year.
I understand now what I need to do to get what I want. Sometimes I can’t see the forest for the trees. Thanks Coach Vicky!
I am in a dilemma with my MO. This relationship is not working for me. I am a low priority for her since I didn’t need chemo or radiation due to my BMX and low Oncotype Score. I started on Anastrazole in April. My blood pressure started spiking. I have always had stable low blood pressure. I called her office because I strongly felt that the Anastrazole was involved. She told me to stop taking it and go to my PCP and get treated for high blood pressure. I have worked with my PCP to stabilize my blood pressure. I sent a message to my MO that I would like to start back on the Anastrazole the second week of July because we are going to visit our son who we haven’t seen in almost three years and i didn’t want to deal with SE’s on the trip, but if I was putting myself at risk then I would start back on it. I received a response from the receptionist that she forwarded the message to the nursing staff and someone would call me. That’s call never happened.
When I went in for my appointment she had no idea about my BP issues and that I was not back on Anastrazole. It feels like an assembly line there. She advocates for the insurance companies and won’t fight for me. I had to beg for her to test for BRCA1/BRCA2, which came back negative. I have not had a CT Scan or PET Scan. I understand PET Scans are expensive but she won’t try. She said that if I can’t take Anastrazole then she would switch me to Tamoxifin. I said no to Tamoxifin due to my risk of ovarian cancer and uterine cancer. She said that uterine cancer is easy to detect because you start bleeding. She actually said that.
I just had two suspicious lumps US and mammo’d. My breast surgeon jumped at the chance to get me a PET Scan when he heard that I wanted one but my MO wouldn’t try to order it. He said I may not get it but with two new lumps he would use that as a reason and fight for me. I just love him. That’s the kind of doctor’s I need on my team. My MO is the weak link.
I have reached out to my BC Navigator and she will help me find a new Oncologist. My problem is that the M.D. Anderson MO’s are young. I may not be any better off. Ugh...I hate this!
Thanks for letting me vent. Sorry it’s so long.
Barbar
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Vicky, I am also interested to know how you're applying the rosemary oil. I have a recipe from an Ayurveda book that says to mix it with apple cider vinegar and massage into the scalp occasionally. I am also taking 1,000 mg daily of biotin now. I assume NP is a naturopath -- I might like to try seeing one.
About doctors and "assembly-line" treatment, I am dealing with a dilemma regarding my PS, whom I previously thought of as my "favorite" provider. I realized late in the process that I hadn't been given much choice but to get immediate silicone implant, even though radiation was a strong possibility. Of course, now I am dealing with contracture, and another surgery to remove scar tissue and re-pocket the implant will have to be done, but not for a number of months.
I feel a certain lack of interest in my care; last visit only the nurse saw me, didn't really hear my concerns about yet another surgery ("You'll be back to your activities in two weeks") and ordered physical therapy for the too-hard breast (I have little faith that will do anything to relieve it). I have discussed this in other threads (so please bear with me if you've heard this song before), and have gone back and forth on the issue, because I know my PS is highly regarded and, when you DO see her, very sweet and compassionate. I know that's not the most important criterion here, but I don't want to make a wrong move.
I haven't sought second opinions, and I'm not even sure what I'm looking for, because the problem is pretty straightforward. Maybe just the feeling that they care and are invested in my treatment.
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Bella- so glad your getting a new MO!
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