For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Nope, the 10 years is due to how crazy agressive my cancer is...my MO thinks it was in my bone marrow. My mass started out as a grade 2 mass with no nodal involvement; 3 weeks later (my lumpectomy), my mass had evolved into a grade 3 mass and into my lymph nodes. My BS was not prepared for what came back on my pathology report, he removed 1 node and exited stage left LOL Had my MO known what had happened (and so fast) prior to my lumpectomy, my entire course of treatment would've been different. So for now, I have a BIG chunk of boobage gone but I'm alive. I'm really not thrilled with taking the meds that long, but I have a 14yr old daughter and I will watch her grow up and I will live to meet my grandchildren...someday ;-)
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I am sorry to hear your cancer was so aggressive. Mine was moving along pretty well I think too. They kept finding other smaller tumors; it was in my nipple too. I had two lumpectomies and then a third surgery, my mastectomy. I wonder sometimes if they had scheduled sooner, if it might've been better contained. It was 6 wks from dx to lumpectomy. I checked with two docs; same wait time. The MX was another 6 wks ltr, but there was another lumpectomy a month previous.
I have 3 kids ages 20, 19 and 15. My former BF didn't want to deal with the BC and didn't; it was a very stressful time for the kids and I as subsequently I had to break it off with him, then go through reconstruction. It feels like they grew up so fast and are so independent now. My oldest has moved out and my 19 yo Dau is about to. There was too
much crying, stuff with me over the last couple yrs and now time has gone on, I'm afraid. (My Dad died last fall).
It's a quiet Friday night here. Rented myself a movie.0 -
Mybee, I wish I could give you a big hug! And a big kick and slap in the face to your former BF!
I don't know how people can be this way. It's changed my whole view of the world. And made me even more determined to NOT be that way!
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Thx Tim:). I had someone tell me once BC was God's way of opening up my eyes to his character. I hope that's not true but I do know it was an eye-opener and good riddance for sure.
Just a little sad tonite. Gonna be awful quiet here without my daughter around.
Here's a hug to u too
. The company is one reason I stay so connected to this site!0 -
Hugs to all!
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mybee--
Thanks for the links to the 2 articles. I read them once, then bookmarked them for forther study.
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You're welcome! Yes-Hugs to all!!
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Firestorm- the 10 years with an aggressive cancer certainly makes sense to me. It may help to decrease your risk of reoccurrence significantly. And I often think, don't worry about 5 or 10 years from now as by then, there may be new research and information that will change things for any of us.
Mybee- I am sorry your BF was not there for you during your time of need. I do believe what your friend said is true though. I think that it is true about people as a whole-difficult times show you who really cares. I pay attention to who shows up and to also who disappears-it speaks volumes. However, that does not take away the sadness and disappointment we feel when people fail us. I hope you enjoyed your movie last night.
Blessings to everyone on this thread!
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mybee333 when I had my esteiral levels checked (for 5 months PFC) I had the levels of a prepubescent male! I had night flashes on chemo. Once in a while I might get them now after eating spicy food but not as intense as when on chemo, also at night.
Timbuktu the only reason why my onc measured me for 5 months is because I was peri-monopausal before chemo. Last period 2 weeks before chemo. Given my family history she felt I was so close to menopause starting that my ovaries would not recover so I went on Anastrozole instead of Tamoxifen. She tested to be sure I stayed in menopause.
Ruth I bet we had the same drop.
ketch before the AIs everyone got Tamoxifen. The drug has been around for a long time. That being said my SE started at 3 months but did get much much less. I only have some stiffness in the morning but I do exercise daily. I do have water retention but take I small amount of diuretic now. These are the only two meds I take
Firestorm I'm sure it had to do with your age too. You look really young. I too am a stage IIB but not in nodes… just a really big triple positive tumor. My NP has hinted at another 5 years for me because my tumor was so big.
Mybee sticks about the BF but to be honest I'm glad he's out of your life. I haven't spoken with my sister since 1 week post BMX. Long story but it did open my eyes. I'm over it now.
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I've never had my estrodial/estrogen levels checked, at least not since BC. Perhaps I should. It has never been suggested, actually, by any of my doctors. lago - what kind of exercise do you do? I know you work; when do you find it best to schedule it in, so to speak.
As to the BF - I am very glad he is out of my life too. It's just with being alone now for 1 1/2 yrs plus and now the kids leaving and practically ignoring me, I feel quite at loose ends. Plenty to do as far as responsibilities for sure, but I feel like a lack of a center or anchor. I'm groping along here.
Yes - peoples reactions have been eye opening. It has shown me things that I didn't want to face in friends and family. I am now trying to fill in the gaps left. I too don't continue with people that have not been there for me. With the family it is sad but you can't unknow what you now know, if that makes sense. I would be interested in hearing about your rift with your sister; PM me if you would like to share. I am experiencing a similar situation with my Mom and sister.
Took an hour walk today for the second day in a row. That was good. I love to do that in the evening.
For some of you that are so concerned about the 10 yrs., all I can say is you can only take it day by day, week by week, and see how it goes. Try not to let the anxiety kick in. As others have pointed out-10 yrs is a long time for scientic research. Who knows what it will tell us.
Hopefully good stuff!Thanks for all the support. As always - Peace.
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mybee, you are so articulate! I can't tell you how you have expressed my feelings so exactly,
I went to a family therapist today and he suggest I leave my husband of 44 years. Financially it would be crazy hard but on top of that, what you describe, having no help, no center, I'm afraid of that. Even though there is nothing but chaos and misery here. There's just no escape either way. He used the word "trapped" and that's exactly it.
Trapped. And no one really understands. My idiot husband, it doesn't seem to register to him that I'm always sleeping. He doesn't feel the pain and the fatigue so it doesn't exist for him. and I don't tell him because he really doesn't care. Same with the kids but I don't tell them because I don't want them to know. I don't want them burdened. I want them to live free, it makes me happy to see that. But my husband is a narcissistic moron and although it's never been good it's unbearable now.
The closest thing i can come to is that i have to keep busy. I have to try to make myself as happy as possible in spite of the evil around me. It shouldn't be this way but it is and we have to face reality. No sense pretending.
Yes, it's an eye opener! Let's hope we can find some happiness for ourselves before our eyes are permanently closed!
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BC is a huge eye-opener... for me, it calmed me some...I don't get rattled as easily, I'm a lot more forgiving, I smile much more, I volunteer at the hospital that is part of my medical/cancer campus, I compliment a lot more too and I try not to worry about the future. I got lucky, my husband has been a rock; he took over the laundry/cooking/dishes/shopping/etc. and hired a housekeeper to do the deep cleaning. Although its been hard on my daughter (I was 41 at diagnosis, she was a month shy of 14), I think it'll make her a stronger person in the long run.
I'm so sorry for those of you who had significant others that flopped when you needed them! As if you didn't already have a big enough challenge ahead of you... A testament to a woman's strength.
Mybee - you're right about seeing a new side of 'friends'. I was amazed at how many of mine put me at arm's length. My best friend since I was 15, told me that she couldn't cope with my cancer. It was enlightening to see that the people I considered more aquaintences then friends, were the ones bringing meals to the house and driving me back and forth to chemo so my husband wouldn't miss so much work. Those ladies are family to me now
As twisted as it seems, I'm glad I got BC...I needed the wake up call.
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Concerning anyone who ended up with a few lumpectomies because the tumor was more aggressive than anticipated, I can tell you the following. I have had BC twice. The first time, in 1991, I was not even 38, and I really wanted a lumpectomy. I went to a top MD for a second opinion. He said,"No problem. But if you have a lumpectomy, you'll be back with in a year to have a mastectomy." I am glad I heeded his words. When he did the mastectomy, the tumor - or rather several pinhead size calcifications in one spot had already spread further within 30 days! My cousin, had a lumpect first, and a month later a mastectomy. So while it is very comforting not to have a mastectomy, it isn't worth double surgery!
Now for the great news. I saw my onc for my bi-annual checkup and complained about the SEs of AL. I had been on Tamox for 5 years w/o issues, and 1 year of AL. She started looking through my file and said I could stop altogether since it had been prophylactic in any case. I was so sure she was just going to switch meds, so I was absolutely thrilled with the news. She warned me that some of the SEs may be there to stay, but just not having to take that pill and increase SEs and ,more bone loss risk (I already have osteoporosis) is wonderful. I wish the same good news for all of you out there.
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mybee333 I don't have kids so that makes it easier. I don't have to be in work till 9am and it takes me about 20 minutes to get to work by bus. This might change in the fall when school is back in session and I can't get on the express bus and it's darker in the morning but…
Now I will powerwalk or do strength training in the morning. I won't go out and walk before 6am for saftey reasons. I live in the city. Strength training I've always done at home so I can do that easily in the morning. I'll strength train 2X a week. On the weekends I go to the gym. There are times when I've done the power walks after work but now being summer it's too hot.
Strength training takes me 1.15 minutes so sometimes I just do 45 in the morning then 30 when I get home. Once it snows and it's too icy I will have to go to the gym after work. Powerwalks used to take me 50 minutes but now down to 45. I'm faster.
For dinner I have made a lot of stuff and frozen it. Even if it means getting a costco chicken, cutting it up and freezing. This way all I have to do is put it in the fridge the night before to defrost. Veggies don't take that much time to cook. Chicken chili is another one of my go too frozen meals. Fish cooks quickly too.
But even if you can only powerwalk for 30 minutes it will make a difference. Will PM you later about my sister.
Congratulations dassi52 Let us know how you feel once off the drugs.
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Hooray Dassi!
Timbutu, don't just keep busy. Find things you love and do them. Do them for yourself!
It was a suprise to find out which people came through for me and which ones didn't, but I guess I cut people some slack because I know, in retrospect, that I haven't always been as good of a friend as I could have been in various situations, and also, people have their own baggage.
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I have some huge regrets about not being involved with a few people over the years when they were sick, one of which was my hubby's hunting buddy who died at just 29 from lung cancer, a week before his youngest daughter's first birthday. Of course, I was much younger then and much less mature but boy oh boy, do I wish I had been there more for him, his wife, and especially my husband, who I found out later developed some health issues because of the stress HE was experiencing.
This BC experience has made me much more aware of just how much it means to have folks help and care and pray for you and I made a promise to myself that I would be more 'present' in the future for my friends, family and acquaintances who receive a difficult diagnosis.
Hang in there everyone......I truly believe that 'this too shall pass'. We don't realize just how strong we're becoming because we're so busy just getting through this moment by moment, day by day. Love you all!
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Yes, I am a MUCH better friend than I was before. I take the time to send a card, make a phone call, bring over a meal, suggest a cup of coffee or a walk. I think a lot of people don't know what to say or do, so they just are frozen with fear that it will be the wrong thing....we know better.
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That is so true Ruth! I too vowed to be there for people. I know now how much it means.
Yet, I was at a party the other day and there was a friend who's husband has a brain tumor. He was there. He used to be incredibly handsome and now...not. My friend came to me and asked how I was and was so warm and outgoing and huggy and loving and I was tongue tied. I know her husband doesn't like to talk about it. So I didn't ask him. I didn't know what to say!
Then there was another friend who's significant other has awful cancer that has spread. I forced myself to ask how she was and he said "not so good" and I was tongue tied again! I just said I was so sorry to hear that. Another friend jumped in and said "She's tough as nails, she's visiting her grandchildren." He said she was on chemo but he didn't know why, it's not helping and she's exhausted. And I had that same awkward feeling as I used to have before I went through this. I just said to tell her I was thinking of her. But I kind of felt like a party pooper. As though I was bringing everyone down and maybe he'd be better off just trying not to think about it for an hour. So even though I thought I understood what to do now, I don't really. And everyone is different. My friends husband with the brain tumor wants to pretend everything is normal. He still keeps up a law practice and she says he doesn't admit to any problem with chemo. A lot of people keep the cancer a secret for this very reason. They don't want all of the concern. They don't want people looking at them as though they are about to drop dead. It can make it so much worse. They want to forget when they are at a party. So I was left feeling very inadequate to the task, all over again.
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I know what you mean Timbuktu. I've never been one to have the right words at hand for difficult situations and I'm not any better now than I ever was. The only difference now is that I know if I at least exhibit caring concern it means a lot. However, I imagine it's difficult to express caring concern to someone who seems to want to ignore the issue.
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Thanks to all of you. Stiff knees are still there, but my regular MD wants me to do bloodwork end of summer to see if the cholesterol dropped (AL raised it in spite of the Simvastatin I took) and maybe by then the knees will be better too) Will keep you posted with hopefully positive changes.
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My cholesterol DID drop once I was done.
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oooh, like the sound that the old cholesterol may go down, been battling that for too long!
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I just found this on one of BCO's main pages, Dr. W is BCO main medical consultant & is answering a question about Als beyond 5 years.
Brian Wojciechowski, M.D. says:
We cannot yet be sure for postmenopausal women if 10 years of an aromatase inhibitor is better than 5. Those studies are still ongoing. I think we will know by the time your 5 years are up, though. Some have suggested putting women on aromatase inhibitors for 10 years at this point anyway, but I don’t think that’s a good idea given the side effects of the drugs, most notably osteoporosis. For now, the standard of care for postmenopausal women starting hormone therapy is 5 years
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I love an honest man ie one who can say "we don't know". They are rarer than you would think!
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yeah, I read that and as someone who is hoping to end my AL in Dec at 5 years...it was good to read that things have so far not changed.
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Just had bone density scan. I am now diagnosed with osteoporosis. Worse in the spine than hips so far. Been on Arimidex for 3 years now.
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Crap, now what?
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Brokendreams my osteopenia is worse in my spine than hips too. I had my first drop after chemo/6 months of Anastrozole. I think that was due to both chemo and going into chemopause. After that my drop I've been close to stable. I'm assuming it's the exercise, D and Calcium as well as my diet that helped… but not everyone can manage it this way. I was osteopenic before chemo but I'm small boned so maybe not.
We are pretty much on the same schedule… you're just ahead of me by a couple of weeks. I've only been on Arimidex for 2 years 4 months.
Hopefully those bone building drugs will help you. Keep us posted.
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I see the oncologist in August. I take calcium and vitamin D. Since starting Arimidex I have loss bone. I know it's because of estrogen loss. Two years ago I had osteopenia and now osteoporosis. I will post what the oncologist says in August, and let everyone know what treatment I will try. It's depressing to me.
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I'm sorry this is occurring. I have developed osteopenia in the last two years. I stepped up my Vit D and calcium. I need to increase my exercise but AM becoming more active.
Broken-may I ask how old you are? I am wondering if they will do a bone density test every year? I'm concerned that in another two I may slip into osteoporosis. My grandmother lost about 7 inches and broke two bones before she died at 80. She nvr had a hysterectomy or took the meds we take. She also was quite sedentary, a smoker and ate very little dairy. Also got no sun. I don't either. I'm a big sunscreen user. I'm 55. 0
