For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Prdanib...there is a thread entitled reducing estrogen naturally. I refused anti hormones from the start and have done several things to lower my estrogen naturally. Please feel free to check it out. We all have to make our own informed treatment decisions Good luck to all.
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Grabsna3x, that's not the way I read the Predict nor what my MO told me. In fact, they give you how many women out of 100 are still alive after 5 and 10 years with and without the AIs. For me, it's a negligible difference. Mine are the same as HapB.
HapB I'm where you are. Told my MO I'd give it one last try. He is perfectly OK with me not taking the AIs. I don't want to spend the next 4 years feeling like I have this past year.
Prdanib. I was told 4. I'd love to know what the other 2 are. Arimidex was the worst for me for pain. I was sent to PT because my pain was so bad. It helped a little, but when I stopped it, the pain lessened A LOT. Aromasin was a little better. I have to say this second try at Femara I have the least pain, but I'm also doing yoga and taking turmeric and magnesium, which I didn't the first time.
I'm going to have to check out that thread about reducing estrogen naturally. I wish there was a search feature for these forums. I am trying to find a recommendation for eye drops. My eyes are so dry. The nighttime gel I'm using isn't working anymore. I have double vision in one eye for about half the day.
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I just found this on another thread regarding dry eyes, floaters, and other issues with AIs. I've been having a terrible time with my eyes lately and it indeed may be the straw that breaks the camels back. I have a pre-existing retina condition called macular puckering in one eye. The other eye has been compensating for it...until I started taking the AIs.
Here's the excerpt:
A study by Dr. Eisner and colleagues suggests that anastrozole can cause small retinal hemorrhages in some patients.4 He said that his research indicates that breast cancer patients who take anastrozole are more likely to have retinal hemorrhages than tamoxifen users. These hemorrhages may be the result of excessive traction on the retina, caused by estrogen depletion.5 Related effects, such as posterior vitreous detachments, may occur during the natural menopausal transition, he said. Dr. Eisner noted that it's possible to assess the tractional effects of AIs through the use of OCT. Other possible effects of AIs include photopsia and increased incidence of floaters, as well as dry eye.
Dr. Eisner pointed to the need for more studies of the effects of AIs, particularly longitudinal studies to better document and help clarify their ocular effects.
"As many as 40 percent of women completely abandon their use of AIs before the prescribed time because they can't tolerate the side effects. Although the ocular side effects may be less important or less compelling than well-known side effects such as arthralgia or hot flashes, they nevertheless may provide the straw that breaks the camel's back for breast cancer patients on these drugs," said Dr. Eisner.
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HapB, that is the question that a nurse friend of mine posed. How does insurance (in my case Medicare) approve use of a drug that has so little efficacy (in my opinion). Big pharma is powerful.
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Hi everyone...I know this is not popular but I have always said we need better treatment options! IMO a drug that only 60 percent of us can tolerate is not an effective treatment! We can and should do better!
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Does the percentage of estrogen positive make a difference? My tumor was 96% for estrogen and 95% for progesterone. The predict2 doesn’t ask for that information.
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JoyceA, it’s my understanding that those numbers do make a difference. My Er+/Pr+ numbers are similar to yours. I believe it makes a difference in the effectiveness of AI’s. Because the cancer is so receptive to estrogen, starving it of estrogen lessens our chance of recurrence.
This could be incorrect information...anyone else have an explanation? Please chime in
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I don't know that the percentage would make a difference. I would think if it did, it would be factored into the Predict calculation.
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Cancer Mortality: 5% expected 15-year Cancer Death Rate.
5.7% 15-year Kaplan-Meier cancer death rateLife Expectancy: Without therapy, this cancer shortens the life expectancy of a 66-year-old woman by 1.1 years. (from 19.1 years to 18 years Therapy benefit: The therapy selected would improve average life expectancy by 0.3 years, or
123 days over expectancy without therapy.
32% fewer cancer deaths after 15 yearshttp://www.lifemath.net/cancer/breastcancer/therapy/
This is from another predictor website. So by going through aches and pains and diminished quality of life, I get 123 more days added to my life expectancy.
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Has anyone read studies or have info about what happens to bone health once we are done with AI's? I am concerned about the rebound effect of bisphosphonates and Prolia. It seems that those drugs thwart a normal process (cleaning out of dead bone) that quickly returns to normal when bisphosphonates (or Prolia) are discontinued. So that weakens the bone and the patient has an increased risk of fracture. But if the bone returns to its normal strength afterward—see where I'm going with this?
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Right. I’ve followed the party line on everything til now. Including taking Nerlynx. The bone strengthening drugs are my line in the sand. Normal Dexa, normal Vit D, good diet, lots of weight-bearing exercise. I’m telling my MO that we can revisit this in six months but for now, no.
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HapB with your results I'd be more likely to attempt to tolerate the AI side effects.
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HapB...IMO it is outrageous! Honestly if you can tolerate anti hormone therapy its a no brainer to take it. The problem lies in those who cannot tolerate them. Is it really worth it if it affects your QOL drastically? We are the only ones that can make that decision. I support and respect all personal decisions made. Good luck to all.
HapB...may I ask you to make your stats public. Your posts are very informative but we could answer your questions more accurately if we knew your stats. Thanks!
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HapB, what dtad meant is that they don't show up after every post you make. Posting them once in a message helps for that post but not others. You'll notice that most of us have our information show up. You may have entered the information on your profile but you have to go to SETTINGS and make each and every single item PUBLIC in order for it to show up in your signature. Hope this helps.
HUGS!
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HapB, the settings part of BCO is the most confusing part. I'm sure it could have been made more complicated but I don't know how
HUGS!
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I have to tell you HapB that I had the worst pain on Anastrozole. I've had the least on Femara/letrozole. Have you tried other AIs?
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HapB have you tried a topical CBD cream? I bought the liquid you put under the tongue and it made me hyper. I put it in an unscented lotion and it's not only taken the pain away, I'm sleeping better than I have in months.
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i have been taking anastrazole for 7 months and I am now getting horrible leg, groinand hip cramps. Mentioned it at 1 Year Physical with primary and she said may be reduced blood flow to my legs a side effect of anastrazole and that I may have to stop med. she is going to order an ultrasound to check blood flow. Anyone else have this problem? I said I didn't want to stop anastrazole and she said and you don't want to have heart problems either. Everything is just so stressful sometimes. Feeling overwhelmed. 1 year mammogram coming up the end of this month.
Sher
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Sher, I had terrible leg cramps and hip pain on Anastrozole and quit after 6 months. I'm feeling much better on Letrozole.
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Nancy,
Which CBD oil do you use and where do you get it from? I see you take Turmeric as well, how is that helping for joint pain? I have double whammy as I still have residual CIPN from taxol that i finished in December 2017 . Once i started to take Anastrozole things went really south. For some reason or another over the last day things have dramatically shifted north again. But I hear wonderful things about CBD and I would love to hear your experience and any others!!
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CBK I didn't have a good experience ingesting CBD. It wasn't until after a few nights of being wired and a day where I had a hypoglycemic episode that I Googled and found that CBD in low dosages can be a stimulant. I didn't want to waste it because it's expensive, so I put it in some unscented lotion and rub it into my legs at night. Seems to work well. I tried so many things all at once I'm not sure what helped but since taking the turmeric I have fewer pains.
I got the CBD oil online from Purekana.
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Nancy.
Thanks for letting me know about your reaction to ingestion. I could see me reacting to it the same way. I’ll start with Turmeric and see how that goes.
I’m meeting with an MD that specializes in Physical Therapy for cancer patients only. Hopefully he can give me some information and relief I can share with everyone. Better not try and pump me up with any meds because I’m not up for that!!!
We shall see......
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CBK I did PT for 2 months to both help with range of motion, scar tissue breakup and aches and pains. I can't really say that I had much relief, except for the range of motion. I keep thinking that I should continue with the exercises but I guess I haven't made it a priority.
I go to a gentle yoga class once a week and it does help keep me limber.
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Hi SSS2017,
I wanted to chime in as I will be starting Arimidex this week after having been on Tamoxifen for a little over 6months. I did have some se’s pretty quick, like nausea happened the first pill. But, there were other se’s that happened over the six months. Joint pains, were in the first three weeks and have not stopped. Dizziness, lightheadedness and weird visual stuffcame around the 3rd month and lasted about 2 1/2 months (just now seeing it lessening, a great deal). I wanted reassure that it is possible not to see every se right away, I didn’t. I still had what I believe to be a new one just this last week. I did have neuropathy after chemo ended in November 2017, but it was seemingly on the mend and I was feeling less of it, it wasn’t gone but less noticeable. Well, just one week ado, I awoke with crazy tingling and numbness In my hands and toes. It actually more intense than when I had it from chemo. I made an appointment with the oncologists and he has referred me to a neurologist.
I pray all the best for you.
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Hi All,
I have a question about Fish Oil (Omega-3) supplements. I just recently started to take one capsule a day in the last 12 days. I found that after reading the label there was soy and vitamin E also in the capsule. So, I began to search online and found that the majority of fish oils have both soy and vitamin E or at least soy. Is that combination okay when taking arimidex or for those taking tamoxifen? Does anyone have a recommendation as I have checked both Walmart and Costco.
Thanks
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Humblepeace- I take Nature Made fish oil 1,200 mg, 360 mg OMEGA-3. This has no soy or vitamin e. I buy it at BJ's and usually get 2 bottles at a time with some coupons & promotions. I'm sure drug stores (CVS, Rite Aid, Walgreen and the like) sell it too.
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Humblepeace...I take 1000mg capsules of Fish Oil that come from Costco. Kirkland brand and in a big bottle of 400. They don't contain any soy or vitamin E. Looking on the label on their website, the label shows soy, but looking on the label that I have at home, there is no soy listed. Hope that helps.
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This is what I'm taking. Better than fish oil which can contain impurities, especially the cheaper brands. My MO knows I'm taking this.
Viva Naturals Krill Oil - 100% Pure Antarctic Krill Oil, 1250 milligram/serving, 60 Capliques https://www.amazon.com/dp/B004TBCT4G/ref=cm_sw_r_cp_apa_nNDjBb6CWS347
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One thing my MO was adamant about was taking fish oil with enough DHA/EPA. He said it doesn't matter how much total fish oil the label says but to look on the label and add up the DHA and EPA and try to take one that has as close to 1000mg of those as possible. Nordic Naturals has one with 1100mg and the Vitamin Shoppe has one with 900mg.
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I have been on Anastrozole 1 mg for five weeks. I have no bone pains or hot flashes. Keep an open mind understand the mind plays tricks when you read side effects. I was nauseous the first two day told the oncoligist. She said please don’t read the internet and She told me to continue for one week. I did. Guess what no more nauseous. Not once. I try not to read. Remember most people that write on the internet need advise becausethey are having problems. Most don’t write the good stuff
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