For Arimidex (Anastrozole) users, new, past, and ongoing
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I'm taking Citracal 1200 slow release calcium with Vitamin D3. I also take an additional 1000 Vitamin D3 for total of 2000 IU's. I take the extra supplement at a different time than I take the calcium. I always take with food because I have a sensitive stomach. My MD checks my Vitamin D levels yearly. In addition I'm getting the Prolia injections. Been on Arimidex coming up to 5 years and I'm a nervous wreck waiting for the results of my BCI. For some strange reason I'm getting hot flashes more than I did before and can't figure out why. I seldom got them before. It's always something. Love and blessings to all
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I need to get another cholesterol test soon and an dreading having to start another drug....this one for damn cholesterol. Was anyone else diagnosed with cholesterol?
I have osteopenia, have a low bmi, down to 127 for 5 '7 is pretty damn good for 50 but my onc admitted that Arimidex is not good for cholesterol and we stopped zometa after 5 yrs. 2/3 tests it was over 200....I'm on eye drops for eye pressure ( working thank God) and I don't know if that's due to 30 yrs of ulcerative colitis ( mostly in remission last 10 yrs). All this for a gal that never smoked anything stronger than a cigarette at a few college parties. So unfair!
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7of9- my cholesterol is over 200 but they use some ratio where the good offsets the bad so no drs are concerned. It’s gone up over time and with age. I too don’t want anotherdrug to offset the SE of the AI.
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7of9 - my MO told me that Arimidex doesn't elevate cholesterol, Tamoxifen does. You're at a great weight, so I don't see where you should lose more, but I went on a diet and cut out a lot of the foods I was eating - chips, fries, and tuna melts to name a few. I had never had high cholesterol and it was at 272. It went down to 185. I did lose 25lbs, but I was 159lbs and 5'4". I'm not sure it was the weight, I think it was what I was eating.
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Has anyone been told that they will be on Arimidex for the rest of their lives? I'm hopeful it will be past 5 or the 10 year mark. I'm 57 now. So far I notice my joints are a bit tight, but I'm taking Claritin daily and it does seem to help. I'm happy take it if it will prolong my life span, but everyone seems to be on it for 5 or 10 years.
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I'm strongly hoping for 5 years. My oncotype was deep in the safe zone, so I hope that will help. I have wandering joint pain - the wrists one week, the knees the next - and it's a career affecting concern. I'm a medical massage therapist, so I can't afford to put my hands at risk. The sooner I'm off the meds, the sooner I'll know if any arthritis symptoms are from the Anastrozole or from occupational hazards.
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My MO told me let's cross the bridge when you come to it. At 5 yr mark, new research will let us know how much longer I need to be on this medication.
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KotchAJ - my oncologist will evaluate at the 5 year mark. I’m 67 now and have been on an AI drug since December 202. They’ll run BCI at that time too. She prepared me when I started saying 5 to 10 years.
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I'm at the 5 year mark now taking Arimidex. My MO said I could stop given my low clinicals. However, when I inquired if there was any benefit in continuing for two more years he suggested the Breast Index Test (BCI). Well, I got my results. It came back HIGH RISK and YES for extending AI's for 5 more years.
I'm just going to look at this as a positive although I really wish I could have stopped. This also means continuing with Prolia injections. From what I have researched, if the results for the Predictive score is YES , it means the tumor responds well to AI's and can have significant benefits on the Prognostic distant recurrence score. Not sure how significant, which is on my list of questions to discuss with my MO.
Blessings all.
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I took Tamox and Arimidex with my first cancer. I think I did the five years thing. I'm not sorry I did. My cancer returned as Stage IV, and I think if I had quit early, I'd be blaming myself for my progression.
The thing is, no one knows if we will have a recurrence, so why not do all you can to minimize your risk? However, your QOL is a big deal, and if you are miserable on any drug, then I would definitely weigh the costs and benefits.
I hope that makes sense. No one here will judge anyone else for their choice to stop or continue treatment. It's a very personal decision and only you get to decide what is best for you.
Carol
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Sunshine99,
I absolutely agree. Everyone has to make decisions that are right for their situation. Breast Cancer is not a one size fits all. QOL is a very important factor. Thank you for sharing your insights.
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This just showed up on my Instagram feed. Thought it was appropriate for our discussion.
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Nice!!
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Butterfly1234 - things have changed so much in the 7 years since my initial diagnosis. I'm surprised you came back high risk with no node involvement. It's the node involvement I had that has me taking the Arimidex for three more years. I'm not even a candidate for the BCI test because of node involvement, still don't understand that one.
I'll be getting Prolia shots as well. Yay. But I do agree that we error on the side of caution, at least for me that was my decision.
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HomeMom,
My MO told me he thought my Breast Cancer Index (BCI) would come back low risk because of my low clinicals.
However, my tumor must have a high proliferation rate. 3 to 5 % of BC patients with a Yes and a High Risk result significantly benefit from EET (Extended Endocrine Therapy.) Apparently, I fall into that category.
How much does EET brings down the prognostic score? I don't know and it’s something I have to discuss with my MO.
I'm upset with my MO because he didn't call me with the results, his PA did. Frankly, the PA couldn't answer a number of my questions. I had already researched the BCI clinical studies and spoken with a rep. from Biotheranostics so I understood what the test result possibilities could be. My MO explained none of that when we discussed ordering the test. In fact, he was ready to have me stop the Arimidex and Prolia injections at 5 years.
Regarding Prolia injections. I started seeing an endocrinologist who will be taking over. I feel more comfortable having him closely monitor my Dexa scans. If there's a time I can stop these injections we can do it responsibly and under his guidance.
I am grateful that I can take a medication that can potentially help with keeping the BC monster at bay. I have to realign my thinking to 5 more years or for as long as I can tolerate the Arimidex. I started another thread a while ago for people who are doing well on AI's. All things being considered, I'm hanging in there and I know that many of my BC sisters face greater challenges.
Thank you for sharing your story. The Prolia shots have moved me from osteoporosis to osteopenia and I tolerate them well. Be sure to keep up with your dental appointments. There is a very rare and small risk of ONJ (jaw necrosis) for invasive dental surgery (implants, extractions.) But, again it's very rare. Just be sure to let your dentist know and precautions can be taken.
I couldn't make it through this journey without my BC sisters who share their stories and knowledge. Blessings and love to you and to them.
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Butterfly, sorry to hear the BCI test has resulted in 5 more years on Arimidex. Hang in there. As you conveyed - keep the beast away.
My "5-year" visit with MO is upcoming on 2/23. I also had no node involvement. When I called the MO earlier in January re: ordering the BCI test prior to this visit, MO advised we would discuss on 2/23. Believe I will be insisting this test be done, even if he does not think it is warranted. While I would love to be done with Arimidex, would also like to confirm whether the need to continue taking it could be beneficial.
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CeliaC,
As much as a part of me didn't want to know, I'm glad I had my MO order the test. Information is power. Best of luck.
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Butterfly1234 Thank you for the thoughtful response. I don't have any SE's that are debilitating, just the thinner hair and bone density issues. As long as these issues don't persist after all is said and done, I'm happy to continue another 3 years. I hate getting the prolia shot mainly because I have to go to the treatment room to get it. PTSD! Also, once you stop the AI's you just go once a year for blood work instead of every six months. Oh well.
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HomeMom, I got the Prolia shots for maybe a year and a half. I don't remember how long. What I do remember is going into the infusion room where I got my chemo. I don't know why. Have you ever asked? I never thought to ask, but now that you mentioned it, I'm curious. It's not even like they start an IV line or anything. They just inject it into the back of the arm.
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Sunshine99 I actually think it's because it is refrigerated. The nurses will tuck it under their arm or pocket to warm it up. Otherwise it hurts like hell, although the last few seconds really sting for some reason
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I was getting my Prolia injections in my MO’s office. They inject me in the back of my arm. I don’t think the needle is too bad. Maybe a bit of sting which is over quickly.
What helps me is I ask for one of those small hot pads and they tape it where they injected the needle. I take two ibuprofen when I get home and then I put an ice pack on the injection site for about 10 minutes. It helps with any joint pain and harm soreness.
As I stated earlier my endocrinologist is taking this over. Now that I’m thinking of it he did ask if my MO gives me the injections in the office.
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Butterfly - Yes, you captured my thoughts exactly - knowledge is power.
For the last two years, I have been actively exercising to maintain bone density. It is still a bit low, but not yet to the point where pharma has been recommended. Hoping to keep it that way.
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Butterfly1234, you should receive a printout of your BCI results. I also had a score that recommended 5 more years. I had micromets in one node so that may have impacted the score. My cancer was also 100% estrogen driven so perhaps that is a factor, as well. In addition I had a larger tumor (2.5 cm). I was surprised to see your result with your stats, but I am glad you shared your results so that women with similar stats will consider the BCI test. I have taken a few 2-4 week breaks starting in the fifth year and my oncologist is okay with it. I am really interested in the study that looked at 3 months off every year (from years 6-9)and no breaks the tenth year. Although I would be very nervous not taking it for 3 months. Let us know when you get your printout. I am curious to see how it compares to mine
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PeregrineLady,
I do have a copy of my test. My prognostic score is 7.8% distant recurrence for years 5-10. As you know, the reporting scale of 1-10 of over 5 is considered high risk. My predictive score is yes for benefit from continuing AI's.
My tumor is 90-95% estrogen + and 75-85% progesterone + Her -.
I fall into that 3-5 % group for extending therapy, The good news is from everything I’ve read continuing therapy should have a significant benefit on my prognostic score.
I'm so glad we have a forum to share information.
Blessings.
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Thanks, Butterfly. My score is 7.1 and high benefit from continuing AI’s, as well. I feel like the AI’s are my best defense against recurrence since I didn’t have chemo and radiation. I do have borderline osteoporosis in my lumbar spine so should be getting Prolia shots soon. Thanks for the tips!0
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Peregrine,
You are very welcome. Thank you for sharing. Keep in touch and let us know how you’re doing. I will do the same.
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I started Arimidex around the end of May 2021. Yesterday I was diagnosed with carpal tunnel syndrome, which can be a side effect, I find out now. I won't see my doctors till April and will ask them about alternatives. I was on Tamoxifeno for 2 months but it caused a flare-up of hemorrhoids, so I switched.
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Had my MO appointment today. We discussed, and he ordered the BCI (Breast Cancer Index) testing and advised it takes about 21 days for results. It will be nice to have a definitive answer on whether continuing would be beneficial.
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CeliaC,
My BCI took 3 weeks. Best of luck to you. Sending gentle hugs.
Buyter
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Hi All,
I'm nearing my first month on Arimadex (after 8 years on tamoxifen followed by a long break).. So far so good- mainly some hot flashes. I've been XC skiing a lot so I think a lot of exercise is helping and I can't tell if the occasional tweak is due to the drug or just normal. Anyway, I still need a baseline Dexa and also to monitor cholesterol. Who oversees those tests for you all- your PCP or your MO? Is there anything else you monitor?
Thanks!
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