For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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MACTAZ,
Are they better eaten raw or cooked
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Bennybear: Did they do an ultrasound on your hand? They did not do any imaging just diagnosed from my symptoms. Glad to hear the cortisone shot has given you some relief!
Hugs!0 -
https://foodforbreastcancer.com/foods/mushrooms
AnnC2019, it didn’t say but there were certain mushrooms for certain types. Here is another article that says best for hormone positive is white button mushrooms. Also gives in for triple negative. my sister-in-law read an article about eating at least one a day, kinda of like the old saying eat an apple a day.
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blueGirlred — I started taking name brand Arimidex a few days ago and my trigger finger is so much better. I was using a splint at night to avoid having excruciating pain. Last night I forgot to use the splint and when I woke up I had no pain, just a slight trigger. My hip pain is also much better. I can’t believe the difference it made! $2 a pill isn’t bad after all.
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Just re: the mushrooms, I did a fair amount of research after my dx about foods that work like an AI and yes white button mushrooms were definitely on the list. But if you’re taking Tamoxifen or an AI, I think you’re already accomplishing what you’re trying to do with a dietary change.
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it’s handled, they did an ultrasound to diagnoseand another for injection
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Awesome - About the joint pain. I can only tell you my experience. I was on aromatase inhibitors 7 years and the joint pain got so bad I was walking with a cane, couldn't do stairs at all, used electric wheelchair at the store, was thinking about getting a walker or even a wheelchair. When I stopped Aromatase inhibitors last June it took about 6 weeks before I noticed any improvement in my joints. Since then they have progressively gotten better. I can take the stairs, do not use a cane, can exercise and walk about a mile now. They still are not like pre cancer, and still bother me some, but they may continue to improve. Hope this reassures you.
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Ingerp, thanks for the info. I’m just wonderingif there is foods that do what the drugs do wouldn’t dietary change make more sense? Just wondering why we are always prescribed drugs versus homeopathic way.
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sorry I don’t know how to do links. You may want to check out these threads for answers to your dietary questions.0 -
MACTAZ I appreciate your question, wondering about food and supplements instead of more medications. I want treatment that feels safe, and I wish it didn't have to be all this heavy icky stuff, but my MO reminds me---my cancer has super serious aspects in its pathology, so we have attacked mine with heavy guns. Heavy guns with good statistical chances of curing me, so I fastened my seatbelt and am on this ride I didn't choose!
It's been helpful for me to study and learn about how double-blind, evidence-based medicine and FDA guidelines protect us as patients and consumers. Some supplements sound innocuous, but might not be, and might even interfere with proven cancer treatments. Unfortunately, homeopathic and naturopathic treatments aren't controlled by any FDA guidelines for strength and purity. Whereas, NCCN treatment guidelines always are based on proven, credible research. My MO and his PA and RN's have been really good educators for me, as they've clarified what's really proven as safe and effective, as compared to what's rumored or claimed but unproven with verifiable and credible research. I also have five medical and science professionals close to me in my family and circle, and they've helped me learn and understand this stuff, as well.
My MO has guided me very specifically about diet and lifestyle choices--I got a lengthy "survivorship" training on this after surgery and chemo were over last year. Lower recurrence rates for breast cancer are correlated with limiting alcohol to 2 drinks or 3 max per week, limiting all types of sugar and simple carbs, eating a wide variety of vegetables and fiber, avoiding cured meats, eating low-fat, maintaining a healthy weight, and exercising at least 150 minutes per week.
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Thanks HikingLady, your support system sounds awesome. I read as much as possible and have changed my lifestyle to give me a better chance at reducing the odds of recurrence. Based on your last paragraph I seem to be in the right path. Thanks again
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MACTAZ I too thought it might be possible to get rid of the estrogen with dietary changes, but while I believe it’s possible to lower your estrogen, I just didn’t believe that it’s possible to eliminate it. I wasn’t dedicated enough to try a drastic change in diet and then check estrogen levels. I *know* the AIs work.
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For me, I plan on staying with the little white pill, but after my 5 years it might make sense to incorporate some of these foods. My understanding of arimadex is that while you take it it suppresses estrogen, but once off your body will once again produce, it isn’t a permanent blocker. Perhaps I misunderstood it but I’m not sure why estrogen would be okay 5 years from now when you’ve already had issues. Curious what others have heard or know about what happens after 5....
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MACTAZ--I'm sure others know more but I believe that the probability of recurrence goes way down after five (or seven, or ten) years, depending on your dx. There are real issues with having no estrogen (which we all know!), so it's probably better to go off the medication once it's no longer useful.
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MACTAZ My oncologist has told me that there's ongoing research on how long to be on an AI as follow-up therapy to reduce recurrence risk. That at the moment, we know 5 years is beneficial, and that longer might be recommended for my specific DX, once studies are concluded. I've been on it for 1 year, so at this point he tells me, "we'll decide how much longer once it's been 5 years."
My MO says that the balancing act of that decision will be to weigh the AI's proven/statistical benefit against any medical challenges I'm having, and against QOL issues.
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Mactaz, there are tests that you can have done such as BCI (breast cancer Index) that will let you know if you would benefit from more than five years of hormonal therapy. I was 100% ER+, so mine came back high risk, but also high benefit, probably because of what you just said.
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Ingerp, I believe with ER+ (especially strongly positive), that your chance of recurrence does not go down after 5 years. Please correct me if I am wrong, ladies.0
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I’ve only been on an AI for a year so I figure we’ll see what the research is showing in four years. My MO said five years initially, although a friend who goes to the other treatment center in town was told seven right off the bat. I *have* told myself that even if longer treatment is recommended at the five-year mark, I’ll treat myself to a couple of weeks (months?) off. That’s *something* to look forward to anyway. . .
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My MO showed me a recurrence curve based on my exact DX and the specific pathology of my cancer, and it included my (NCCN-guided) recommended treatment plan. Highest risk of recurrence was in the first year, then it gradually declines to fairly low after 5 years. Ongoing research is now looking at which patients benefit from additional years (past 5) of being on an AI, says my MO. In my case, the word "recurrence" really means "metastasis" and stage 4, so I'm staying on my AI, hoping that I continue to tolerate it okay.
I'll be curious to see my BCI score, in 4 more years....
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All, thank you for your comments
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Each time I see my MO, I ask if 5 yrs is still the recommendation for my circumstances and each time he has confirmed 5 yrs. I keep hoping it could be less, but thankful it is not more.
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Hiking lady, it sounds like you have a great MO from everything you have said. I hope that downward curve applies to all of us.0
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ItsHandled444, Sorry you are dealing w/ DeQuervain's tendonitis.... Wearing the Spica splint helped me (even wore it while sleeping for a few weeks). It may take time to improve. Also, acupuncture eases discomfort of flareups...
Feel better,
Roseanne7
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Roseann7: Thank you! Splint seemed to help for a few days then it got worse, cast for a few more weeks then PT. Hoping this helps.
Hugs!0 -
I've been taking Letrozole as my AI for about 8 months-and lurking on this thread. The SEs were not bad for the first 6 months, but they have gotten worse in the last few months. In the last few weeks I've been experiencing a lot of rib pain on just my left side and my MO told me to take a break until I see her at the end of the month. I am hoping this reset will ease some of the more troublesome SEs. I was told I would need to take an AI for 7-10 years. It could be due to having ILC which has a pretty good prognosis for the first five years (maybe better than IDC) but then has worse outcomes than IDC after five years and/or could be due to my decision to not have chemo and/or maybe it has something to do with being PR-. I am now anxious to ask my MO about her reasons for this and if she has any more information on new research after attending the San Antonio conference.
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Hello All,
I hope everyone is having a blessed holiday season. I have a few questions if that’s okay??
I have been on Arimidex now for 18 months. I have complained about many Se's but, have continued on.
Though I try not to blame everything on Arimidex I know it's guilty for the joint pain I experience, male pattern baldness, and weight gain.
What I'm experiencing lately is in question. Two weeks ago I went directly to the emergency room when I began to have ringing in my left ear (which I still have). I was given a CT scan of my head/brain which only showed some congestion. I was told no mass or tumors. I saw an ENT the following week and he stated that my ears where not clogged, no infection and I have only slight hearing loss for my age (56 yrs). He recommended lipo-Flavonoids which may or may not help.
I also have had random pains, behind eyes, in same ear as ringing. The pain mlast all of 5-10 seconds and goes away.
I also have neuropathy that seemed to have been resolving after Chemo ended Jan. 2018, but started back both feet and fingers in June 2018. Trip to neurologist and nerve conductor test along with Brain MRI (clear), give no answer for the return. I'm now experiencing inner tingling in my....wait for it....buttocks. Like may be my tailbone. Had a whole body bone scan Nov 2019-clear.
Please give me your ideas. Is this Arimidex?? Forgot to mentioned that I also have ever so slight muscle twitching, not all day or every day but enough.
Thanks so much
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Humblepeace
The only side effect you mention that I can speak to is the neuropathy. Arimidex definitely increased my peripheral neuropathy I received from chemo. The only thing that helps me with this is CBD oil.
I know the pain is from Arimidex because I’ve taken a vacation from it, and the pain disappeared.
I hope you find some relief.
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Humblepeace this sounds very annoying to have some mysteries, and wonder about WHY, for sure. Ha ha,I had to laugh about tingling butt, which sounds funny, but I'm sure it is not!
Ear ringing: I wear hearing aids, and have since age 57, due to (inherited, family history earlier than usual) age-related hearing loss. My newest, 2019-vintage hearing aids have technology for "tinnitus" built in. I don't happen to need to use that setting, as I do not have ringing in my ears, but my Audiologist (she's a doctor/Aud. D., with a 4-year grad. degree, as well as a licensed hearing aid dispenser) explained how the newest technology now can help a lot with ringing in the ears. She has also explained the neuroscience of language processing and the brain, which is a reason to wear my hearing aids whenever I'm awake, to continue to send the brain signals and not further erode my ability to comprehend language, which is a separate brain issue from hearing sounds. My two audiologists over 5 years have explained that correctable hearing loss should be corrected, to keep the brain mapping for intelligible language active. I was a high school teacher when I got my hearing aids, and it helped me enormously to be able to hear everything well again, including soft voices, high-pitched voices, people speaking in meetings, kids in the back of the classroom, etc.
Neuropathy: I DEFINITELY had finger/hand neuropathy which started a few weeks after chemo ended. It resolved after 6-10 months, mostly, but I still have occasional numbness, now, more than 15 months after chemo ended. This was diagnosed as NOT due to my AI, but as a not-unexpected after-effect of chemo. In a "peripheral neuropathy after chemo" thread on this site, I see that many people live with peripheral neuropathy that never resolves after chemo ends.
My MO said to take Alpha Lipoic Acid & B Vitamins and L-glutamine for the neuropathy. These supplements were expensive, but for 8 months, I did take them. Then, my numb fingers gradually improved. Which might have happened without expensive supplements, but these things (amino acid building blocks) and additional protein do help heal nerves, as my MO explained it. Also, Tincture of Time heals, ha ha. So, who knows. Maybe I would have gotten better without those supplements, but they're typically recommended for neuro issues and chemo-related neuropathy, so you might ask your MO about what he/she thinks about those supplements, or check how much protein you have in your diet?
You are smart to ask questions, keep track of random things as they come up, and notice whether something gets worse or resolves, is sporadic or constant, etc. That info will help your doctors figure out the cause of your symptoms.
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CBK and HikingLady,
Thank you so much for your responses. I do ask questions to all my doctors. All of which, with the exception of my primary doctor seem to be dismissive or push you to the next specialist which all require more co-pays.
I have read this forum for awhile and posted a bit. I find some with some of the same issues and some who are doing incredibly well, which is good. However, almost two years from last active treatment I feel like I’m still looking for help. I find this forum to be so supportive and everyone is full of personal experiences and advice. Whenever I have any issues or symptoms I come here before Dr. Google lol 😂
I appreciate all ofyou so much.
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Humblepeace
I’m two years PFC and I search for more answers every day. Arimidex and my ovary removal have been the most difficult thing in this process. I must have had a helluva a lot of estrogen in my body since my tumor marker was very high er+ and the double whammy of hitting me with Arimidex was beyond harsh.
So don’t feel you are alone. The side effects are real and more severe for some depending what stage of life you are at... etc.
You will get it right, be patient and pursue one thing at a time ...you definitely are not alone in this fight!
Peaceful Holidays to you.
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