For Arimidex (Anastrozole) users, new, past, and ongoing
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good idea, do not assume you will have side effects, many of us do not have issues, best wishes
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Auroaya and proud--thank you for info and compassion. I'm a muddle when it comes to chemical support. Once upon a time, the strongest thing I ever took was Excedrin for migraines. This anastrozole mess is ... well, you know. But--part of me insists just to wait out the 2 yrs 4 mos and plug along as is. But I appreciate your wisdom and advice. (((you)))
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Mont, you will get through it, I did! on the other side is less meds!
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Check out breaking news at top of this page. Finally they're recognizing depression as an issue for cancer survivors!
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Hi,
When I first started the Arimidex, I did get hot flashes but those have passed. Now I am queasy..........wondering if that too will pass..........any guidance?
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Thanks Lago. You sound very knowledgeable. I have learned so much in the last four months but I was not familiar with the term luminal. When the pathology report said I was 1a I am assuming that "a" is the luminal type. I never thought of breast cancer being different diseases but I guess that certainly is true.I have still not decided what I am going to do about my MO. I was at a retiree breakfast today and one of the ladies good friends had the same cancer team that I did. She said her friend liked the MO so maybe I am being too quick to judge him. I guess I am still scratching my head as to just what the Onchotype DX test tells you. Everywhere I read including the labs own website that produces the test says it tells you no only if chemo is warranted but the likelihood of recurrence in another part of the body. My MO acts like that is not true and that it only tells you if chemo is warranted. Do you have any knowledge of that test?
Thanks for the offer to PM. I am fairly new here and I am not sure how you do that.
Bandwoman
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Ohiofan,
Sounds like we are on the same time frame. I will start Anastrozole at the end of next week. Hope it goes well for both of us and that any SE will be manageable.
Bandwoman
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Wave, thanks for reminder us to read the top headline. I think the dang feet have nueropothy and that reports, well it confirms my thinking. Course wish they had a better solution!
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bandwoman,
Even before I had the Oncotype DX test my MO said I would be on Arimidex for at least 5 years. The Oncotype DX only gives a recurrence percentage and the oncologist team uses those results to determine if chemo and/or HT is necessary. Mine was 34, which is high so I had to have chemo. Yours was under 20, so no chemo. I think almost all bc patients that are er+ and pr+ are put on some type of hormone therapy regardless of the Oncotype DX score.
For further information check out
http://www.breastcancer.org/symptoms/testing/types... /oncotype_dx
Hope that helps.
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Hi Checkers,
I guess I am not explaining myself very well. With my Onchotype score of 16 I knew I was not going to have chemo and I knew several months ago I would be on some sort of AI for five years. Those things are not my issue. My issue is that I am not sure my MO is giving a complete picture of what the Onchotype test does. All the info I have read says it gives a likelihood of recurrence in another part of the body. I don't think my MO thinks that is the case. Therefore I am not sure if I completely trust my MO. He is very young and I certainly don't have anything against young doctors but in the case of treating cancer patients having several years experience under your belt you have a more up close and personnel relationship with recurrence.
Thanks for your link. I will check that out.
Bandwoman
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bandwoman1234 the "a" in your stage has nothing to do with luminal A or B. Here's some info:
Staging: linky
Subtypes (Luminal stuff): linkyAnd remember I am not a doctor or even in the medical field. So always check with the professional about anything I say or anyone on this site. I have been incorrect on occasion.
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Lago,
I get it now. I am ER+/PR+ and HER2- that makes me luminal A. I knew my stats but didn't know they were called luminals. I am still learning about all of this. Prior to my dx I didn't know a thing because I never planned on getting bc!!! So much for my plans!
Thanks for allowing me to learn even more.
Bandwoman
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Bandwoman,
I would be the first to say "If you don't connect with your MO than move on!" As Iago said, this is a long and important relationship you don't want to spend time second guessing him or yourself. There are enough questions without adding unnecessary ones.
Having said that, I have come to feel, since my Diagnosis three plus years ago, that in the BCworld there are very few things that are "one size fits all." There are lots of tests and many numbers but very few of them are exact or definitive and none of them work the same way in two different patients. I think that some MO are reluctant to say that " X" test predicts this at such a percentage because patients can get caught up in those "promises." There are more questions than answers. Nothing is going to tell you for sure if your cancer will come back and where. It might be that your young doctor is reluctant to put too much weight in one test.
I am a firm believer in second opinions EVEN if you love you MO and have no desire to change. For me my second opinions reaffirmed my MO plan. That was worth the price of admission!
I hope this helps a bit. There is so much anxiety in the not knowing!
Virginia
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bandwoman Yes because you are hormone positive, HER2- AND a low proliferation rate (grade 1) meaning your cancer doesn't grow fast and looks more like regular cells then grade 3. A fried of mine is also Hormone positive/HER2- but luminal B. She is also grade 3.
There are so many things they look at even to figure out grade but I didn't think you wanted to break it down that far. I know my brain was exploding trying to understand all of this at the beginning… welcome to Cancer U
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Iago, I just had a funny picture in my mind of Cancer University! Majors & minors. Exams. Varsity letters, one in Anxiety I am sure I have earned! It just made me chuckle! I'm looking forward to a mixer some weekend soon!
Virginia
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Hi Vadre,
Thanks for your post. It could very well be that he doesn't want to make promises and have patients given false hope. I am not planning on doing anything different at this point as far as my treatments. My active treatments are done and I will start Anastrozole at the end of next week. Meds and I don't get along too well so I am bracing myself.
I think I was getting a little peace of mind thinking that because of my low Oncotype test score my chance of recurrence in another part of the body was low. When my MO acted like it didn't test that it sort of shattered that little peace of mind I had in that test and made me question him.
So was he just not wanting to make any promises or what. I may never know.
Thanks for sharing though. I figure two or many heads are better than one!
Bandwoman
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Vadre don't worry all pass/fail classes.
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Thanks again Lago. I do know of the different grades and triple negative and triple positive etc. What really blows my mind is once I think I have it all figured out why certain people get chemo and others don't then there will always be those cases where I am scratching my head going what?????????? So it is an ongoing process. Yes Cancer U. 101 for me right now!!!Can I just audit the class
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bandwoman1234 - My MO talked about the Oncotype score and its prediction rate of distant recurrence at 10 years out assuming 5 years of taking tamoxifen at my very first meeting with him.
And I just checked on my Oncotype paperwork: On page 1 there is a chart with the heading of: CLINICAL EXPERIENCE: PROGNOSIS FOR NODE NEGATIVE ER-POSITIVE PATIENTS. The paragraph below it states: The Clinical Validation study included female patients with Stage I or II, Node Negative, ER-Positive breast cancer treated with 5 years of tamoxifen. Those patients who had a Recurrence Score of xx (fill in your own number) had an Average Rate of Distant Recurrence of xx (again, the % is specific to your Onco score).
On page 2 is a chart and explanation of chemotherapy benefit for the same profile of women.
I'd never put all my eggs into one basket or test result; but the Onco test clearly does make a prediction of distant recurrence. So, I don't know if you and your MO had miscommunications; or he isn't aware of it (which seems unlikely) or he simply doesn't care to discuss it.
I hope your start with anastrozole goes well. I'll probably be starting it in another year so am interested in whatever I can read about it.
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Thanks Manu. I didn't get any paperwork at all after that test and considering it was over $4000 I figured I should get something. It makes it all so interesting and makes me wonder what my MO's motive was. I have our conversation on digital recorder so I am going to go back and listen to what he said. I just saw him on Friday so this just happened. Another head scratcher was I saw a former coworker today and one of her postmenopausal friends who was diagnosed in Jan. and has my same cancer team was prescribed Tamoxifin and I was prescribed Anastrozole.I do appreciate your input. Thank you.
Bandwoman
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I was on tamox for just short of three years, with a vaginal ultrasound every six months to check things out. I had joint pain at the start, but it mostly went away and my only other side effect was hellacious hot flashes. At my annual pap smear, u/s appointment, endometrial cells showed up, so my GYN and ONC immediately took me off of Tamoxifen and put me on Arimidex six weeks ago. it is the generic India version now, but I am going to change that at the next refill. The cells weren't abnormal, just cells.
I also insisted that I get a second opinion from a gyno oncologist, as I was all set on getting a hysterectomy, or at a minimum a d and c. He said the same thing as my gyn, that without any bleeding, there is no need for either, and the only reason he would do it is if I insisted on it for peace of mind. I am going to touch base with my gyn again next week. Peace of mind is awfully important to me, so I am trying not to be the boy who cried wolf, but.....
My side effects with arrimidex are deep aching of hips, feet when getting up in the middle of the night. hot flashes (although less drenching ones, but high heat ones a lot), tiredness, a lack of interest in stuff, occasional upset stomach, heart burn, occasional headache (kind of bad), and when I went bike riding last week, my hands got numb really quickly,
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Ladies, saw my shrink today, a routine check-in regarding my sleeping med and Cymbalta. I've been on Cymbalta for a few years now and wanted his take on it's effect with Arimidex. I'm not really having any SE from Arimidex yet. He thought the Cymbalta is probably keeping some of that in better control which I was glad to hear. My PS keeps me on the Gabapentin which I think is helping as well. The aches and pains I do have are ones I had before and the ones associated with the reconstruction is being treated well with PT. So far, so good! Just hope it lasts...
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I was taken off Anastrozole for a bit because my periods started again after having been told I've gone through menopause. Apparently it's not uncommon for woman (who are still relatively young) to get their periods again after chemo induced menopause. My onc mentioned going back on Tamoxafin (hell no!!) but is holding off for I have asked to have a hysterectomy. My gene testing came back with needing more info so I don't want the constant fear of the cancer spreading constantly hanging over my head. I don't have family history so my body "just made" cancer. Ugh.
Fluffqueen, I get you! I too want peace of mind.
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Band, a reminder that with BC nothing is black or white. So many things go into each decision. I had a surprisingly low Oncotype score of 9 but my MO still recommended chemo because mine was a grade 3 and I had node involvement. With node involvement, the Onco scores are no longer valid. Mine was furtherd complicated because I had micromets in the nodes, and docs are divided about whether to consider micromets node positive or node negative. Confusing!!
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mcgis another option might be to suppress your ovaries with the drug Luprin and continue on Anastrozole. Discuss this with your onc.
A friend of mine is doing that. My friend had DCIS but refused Tamoxifen. 2 years later she was diagnosed with IDC. She had a lumpectomy, rads but didn't need chemo.
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Dear Wave,
I am beginning to see that. I was on my walk today and ran into a former coworker. She said her SIL had breast cancer and was put on Tamoxifin even though she is postmenopausal. I thought the AI's were for that group of people so what do I know! I was a teacher for over 35 years and as I got to the latter part of my career I realized that I still had so much to learn. I could do another 35 and probably still feel that way. Yes, there are no black and whites and our human nature wants to be in control. Funny how these gray areas show us that we cannot trust only in ourselves. I see you are on Aromasin now. Were you not able to tolerate Arimidex?. I will be starting Anastrozole next Friday. Can't wait. NOT!
It is unseasonable cool in the Chicago area today and I am loving it. Hope you are getting some of that as well.
Take care.
Bandwoman
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Band, true. I was on Arimidexfor a year and had such stiff and painful joints that I could hardly get around. I felt like I ws 90. My doc readily agreed to switch me to Aromasin, and it's been a life-changer. I have my mobility back. Some women tolerate certain AI's better than others. But, like Iago, the switch from Arimidex to Aromasin was the ticket for me. And yes, although most postmenopausal women are on Arimidex, Aromasin or Femara, some choose Tamoxifen. My MO said it was an option if I didn't like Aromasin.
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I start with Arimidex next Sunday. My MO says if I have SE that I can switch to a different AI and see if it makes a difference like it did for WaveWhisper. He is having me come back when I've been on the Arimidex just a month. Seems scary to go back to frequent MO appointments but it makes sense to me. I'm on a week's "vacation" between my Tamoxifen and starting the Arimidex and have had most all my joints aching since I stopped the Tamoxifen. Hope that is better before Sunday!
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just started Anastozole a week ago - so far no change that i can tell - one major charlie horse in my calf the other night - but i have been off my excercise/swimming for a couple of weeks...
also got a prescription for Gabadentine for the Nueropathy but haven't started it til i see what SE's show up from the A - of course I assume they don't hit you right away...
anyone here taking both these meds? certainly not thrilled to think you have to take another medication (ie Cymbalta) to counteract the SE's of another...specially when they start of with " possible thoughts of suicide" - how about "possible thoughts of strangling someone" cause that's more like it >sigh< just keep rolling
after my year mammo was clean - my Doc says - we want you to be happy - aren't you happy?
I don't know... is there a pill for that?
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Notbuyingit from what I can see many of the anti-depressants have the SE of "may cause possible thoughts of suicide" So be sure you watch for any change but most people do great on them.
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