Arimidex - Coping with the SE's
Comments
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Hi Enjoyful, we can't get this darn medication fast enough! A lot of yo yos have been writing about it not being equivalent to Viagra because it needs to be taken daily. They just don't understand the pain and suffering of atrophy, and the relationship this has to BC treatment.
I also read that only about 10 medications get FDA approval every year! Ouch. Seriously, I wonder if there is some kind of petition we can put together from BC.org.
I tend to be a nuts-and-bolts logical type. Accelerating ageing in a woman who hasn't reached menopause naturally has other implications that it would seem to me are as life-threatening as BC. People treat osteoporosis like it's an inconvenience. What they don't understand is that people routinely die from it. Falls and breaks cause infection, secondary issues, etc.
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molly52: I didn't include the best. I was trying to make him understand how serious some of the Arimidex SEs are and ask him if he knew it could also cause Vaginal Atrophy. His reply was that it was not so bad. I bet if something was shriveling his "p...s" he would have a different attitude. I yelled to him "This is my Vagina!" "Now I have to endure being emotionally nutty with a shriveled vagina too!" He told me he did not understand "why" I wanted to be a part of a support group. I would have thought he would have encouraged me on trying to help myself but he certainly was not supportive of "support" groups. Anyway, no matter what he thinks, I'm back!
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Medigal - Excuse my while I pick myself up off the floor (for the 3rd time). Vaginal atrophy is "not so bad"! According to who? He who doesn't even own one? Did he base his comments on a double-blind study that has been evaluated by peers?
Happy people are more emotionally balanced, enjoy better health and live longer. (no studies to support this statement - it's just "newspeak". Doesn't he want you to be happy, healthy and live a long life? Isn't that what medicine is about?
In your post, I thought you called your vagina a tool - but it was just the exclamation mark. However, the more I think about it - tool is a good word. We like our screwdrivers to be in good working order - not because we need it today - but we may need it in the future!!!!!
This guy has blinders on. He will only see what he chooses to see.
<Rant off> He can go under the bus.
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Molly: He is really a very good doctor but I think because he has seen so many not survive bc or other cancers, his top priority is keeping me alive. I remember back home with my second Onc I was arguing that I didn't want to take the Arimidex and he cruelty said to me very harshly "Take it or DIE!" His remark scared the daylights out of me so I have been swallowing those pills and no matter how miserable I feel I keep telling myself at least I am still alive to feel miserable. They may be harsh in the way they treat some of us but I think it's all about "survival" to them and now it has been passed on to me. My family needs me and I must endure no matter what. My happiness is not what my Oncs feel I am paying them for. It is all about just surviving and so far what he has done has kept me here so I have to be grateful for that. I think when doctors take a specialty that can have consequences like bc can, they should have to take an extra course as to how to react to their patients especially when they ask questions.
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Medigal ... Oh. My. Gosh.
Here I was, looking up stuff about lasofoxifene and ospemifene, and trying to find research articles about the vaginal effects of SERM's, ... and then you had to go and post that comment.
Vaginal atrophy "... is not so bad"??? (Technically, we're not supposed to use profanity on these boards; so y'all will just have to imagine the words I'm thinking.)
I have an idea. Let's have the FDA pull Viagra, Cialis, & Levitra off the market, because they're not medically necessary. After all, erectile dysfunction "is not so bad." Your doc's comment really, really p*sses me off!!!
My original GYN, bless his sorry heart, did not minimize the seriousness of vaginal atrophy. His solution was HRT, which, to me, was not an acceptable trade-off; but at least he cared. The jerk of an endocrinologist I was seeing a few years ago took a different approach -- he pressured me to go on HRT, even though I had never complained to him about any of my menopausal symptoms. I will always suspect he was getting kick-backs from the drug companies. "If you won't [go on HRT] for yourself," he said, "then do it for your husband." I fired him.
My onco really does have my best interests at heart. She thinks quality of life is important, but she is cautious about recommending something that would increase my risk of BC recurrence if we can deal with the atrophy in another way.
In my googling about Ophena, I found this, which set me off even before I saw Medigal's latest post. It's from the Gerson Lehrman Group news page:
"… Evista … has been hounded by its association with cardiovascular morbidity. Ophena is a drug in the same class, and one would have to wonder if post-menopausal women would risk a cardiovascular toxicity profile for the benefit of a non-fatal, lifestyle condition -- my guess is no."
Let's forget, for a moment, any cardiovascular risks that might be associated with Ophena. (Those have not been studied adequately, IMHO, but that's a different discussion.) This creep considers vaginal atrophy to be "a non-fatal, lifestyle condition"???
Like I said. Withdraw Viagra, and listen to them holler.
otter
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I read that one, too, Otter. The guy is a misogynist clownsuit.
And yes, the doctors are cancer-focused, not lifestyle focused. It is, after all, hard to argue that dying is equivalent to vaginal atrophy. Where I think we often get hung up is, we all know darn well just a fraction of us is getting real benefit from these treatments. Meanwhile, we are bankrolling the pharmas with our bodies.
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Otter: Sorry to upset you with my post. I think you have to understand maybe the "real" reason my Onc is more interested in saving my life than my supposedly "sex" life which I think is the reason you are so upset. I am, thankfully, "not" a young woman who needs to consider sex as part of the equation. I would be incensed to think any Onc would let a young woman sufferr vaginal atrophy if she had to endure what I have read on here what can happen to her sex life. I, thankfully, am past that stage in my life and I think he knows it. So, in his mine, my survival is most important for the other reasons I am needed in this life. My only concern for the vaginal atrophy is any additional pain I may have to endure in that area. I am taking a daily Nitrofurantoin 50 mg pill to stop the excruciating pain I was enduring and as long as it keeps the pain away, that is what I most care about. So when you take "sex" out of the equation, you can really understand my Onc is doing what is best for "me". He is a kind man and I think he may give different answers to a younger woman who still interacts with her DH sexually. But his replies were directed at "me" at that time and I can understand why. Incase you don't remember, or know, I was diagnosed in my 60's and they feel that is mainly the reason I have survived these 7 years. Even aggressive bc is not as aggressive if it is diagnosed later in life. Thanks anyway for your concern.
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Just want to make sure other readers understand that vaginal atrophy can lead to vulvodynia, chronic urinary tract infections, and prolapse. I am an extremely happy, positive person with major excitement for life. I can tell you the years I suffered with vulvodynia were barely worth hanging around for. It was agony.
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MHP70, I had never heard of vulvodynia till you wrote about it. Just got done looking it up, it sounds like something I would never want to experience. I am already 7 years into menapause, so don't even want to think about how much worse it will get now that I must use the AL's for 5 years. The more I read about the side effects of the AL's the more depressed I get.
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Kira,
That is why I take such offense to anyone suggesting at any time that vaginal atrophy isn't serious. We aren't talking just about the ability to have intercourse. In fact, I didn't even disclose my history with vulvodynia, and my naturopath indicated that was her #1 concern with the hormonal therapies. We need better education on these issues!
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MHP70: I never heard of vulvodynia. This is the reason I brought the subject of vaginal atrophy up yesterday hoping I could get my cowardly Onc to discuss what I might be in for. He was miffed I seem to have a need to be on a "support" group and even after I told him how much you ladies teach me, he did NOT proceed to explain anything more about the subject. If he doesn't approve of my being on here, then why doesn't "he" give me some answers? He gave me the same old crap I get from many of my doctors "Those groups are full of misinformation". Yeah and it's like we can get the real answers from them! He didn't deny vaginal atrophy is an SE, he just passed over it like it was no big concern for me. Only the future will tell what I am really facing and I pray it's not whatever vulvodynia is because it does not sound good! Thanks any way.
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Then let him have a dose of 'penial atrophy' and see how he feels then...no stage iv my a$$
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I'm not even sure how to bring up the subject with my Onc. I can see me getting so red in the face and giggling with my poor husband sitting there whiile I do. It's sad I feel this way because I do realise the inportance of talking to him about it, just not sure I can. I am just thankful for all of you. This place seems to be the only place I feel no one will judge me for any of my feelings.
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Oh, Medigal ... your post didn't really bother me in a personal way. I'm not upset -- I just write upset. If you want to read upset, wander over to the TSA Nude-o-Scope/foobs thread.
On second thought, don't go there. It's too hot to handle.
otter
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MHP - Misogynist clownsuit!!! I laughed so hard! Yes, the FDA needs to move a teensy bit faster. I wonder if a pro-Ophena petition would help or hurt (because the person with the approval stamp would have to form a task force to read the petition).
Don't ED medications have side effects? Don't the television commercials usually end with a fast-talking 15-second summary of side effects ending with ".....maycauseDEATHormissingpenis..."?
Medigal - I love the way you talk to your onc, and I'm glad he's a good one even though he has ass-hat tendencies.
Clownsuit...! Bwahahahaha!
E
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kira - How about writing your doctor a note and handing it to him before you change into the examination gown? It's a big issue, to be sure, and one that should be discussed.
I'm glad you feel comfortable coming here. I do, too!
Agh...the TSA Nude-o-scope and the paranoid strip-searches. No way. Nuh uh. On second thought, I should let them take a peek and have the images burned into their retinas for life! Bunch of clownsuits.... *snort*
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susand; check out this website and see if it looks like the same kind of thing your doctor recommended to you (I'm too far away from New York City....may have to take matters into my own hands.....so to speak
). www.vaginismus.com 0 -
Hi Ladies,
This discussion has been an education for me, and I am thankful not to have these issues. At one point, I thought I might be headed that way. This was prior to my skin healing from Taxol. (My learning is that Taxol affects those tissues too, as well as the ones I can see.) And I had just started Arimidex. So I discussed with my radiation NP, and fortunately, all I need to do is ask if I need that help. I held off and my skin healed.
I do find it distressing that anyone would assume that sex should be unimportant to an "older woman". I am expecting many more wonderful years of major action. Certainly, Main Squeeze assumes a working vagina is part of the deal. Mine gets well exercised on a regular basis, and I need no more lubrication now than prior to treatment to make everything work just fine.
I had no idea of the problems other women experience. I would certainly not take any meds having a major impact on my overall survival, but what I find frustrating is that there are treatments for this problem which are relatively safe.
BTW - I would have no qualms at all about asking a male doctor how he would feel if his SO didn't have a working vagina??? How about a good UTI??? I bet you wouldn't get too many takers.
Anyway, I am thrilled that if I need some sort of topical estrogen replacement to get that area working again, I won't have to fight to get it. This should be true for everyone. - Claire
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Claire_in_Seattle, I'm so glad you feel so comfortable talking to your Dr. well I don't. It isn't him it's me. I wouldn't feel comfortable talking to a female either. It's not him just me, I'm sorry you don't understand my feelings.
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Lowrider ~ I was looking all over for the "Like" button after I read your last post! Too funny!!!!! Love it!
I didn't have to bring up the vaginal atrophy subject at my last Pap, the RNC did after she did the procedure. One look & she told me right away what was going on "in there". I would not have brought it up myself, so I completely understand what you are saying, Kira. She did most of the talking. She gave me a couple samples & a list of things to try if I wanted which I did not ask for. One thing I did not know until it happened to me is that having vaginal atrophy could possibly interfere in obtaining enough cells for a pap.
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kira--does a nurse get you ready for your appointment with your onc? You could mention the topic to her and ask her to give the onc the heads up he needs to discuss the problem with you. It may be easier for you if the doc starts the conversation.
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Kira, I understand completely. In fact, it enrages me doctors don't offer different ways to discuss these very difficult, embarrassing, and sometimes humiliating problems.
A strategy I learned from another gal and also mentioned here (I have gotten over my fears, but it was hard) was to write down my issues, and ask the doctor to read them instead of having to talk directly to them.
Empowerment is on a continuum. You should not have to feel ashamed--either by asking, or NOT being able to. We all have very understandable limitations in terms of our ability to do all this.
We also tend to think we have at least something in the range of similar experience. We actually don't. Meno at 39 is serious business--my symptoms and the fall out came on like a freight train, and I still haven't recovered, not even 1/2 way (10 weeks pfc).
Additionally, my onc and NCI hospital have made it very clear that no way,no how am I getting topical estrogens or E-rings of any kind. Any further thoughts you all have on that are so appreciated--have some doctors said they'd do it in an ER+ environment?
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Last year my female gyn told me I would not need any more pap smears because the ovary my doctor left in during my hysterectomy years ago was all strunk up like a prune and not working so there was no reason for pap smears. She claims I have nothing left in that area to get "c" from between the hyster and the Arimidex. So I guess something good did come out of the Arimidex.
I will talk to my doctors about "anything" because I learned years ago they are the "timid" ones. They will overlook something rather than discuss it. I go in with my DP to his appts (except when he is doing the "booty" test once a year) because he won't discuss anything with his doc and then comes home and bitches how "they" don't help him! So I boldly tell them to ignore him and speak to me about his issues and even tell them what "tests" I want them to do on him.
I literally saved his life years ago because his doc was setting him up for exercises and I told him he had heart problems from symptoms I saw and the exercises would cause a severe heart attack. The doc laughed at me and said his heart was fine. I screamed at him to send DP for heart tests cause if he dropped dead from a heart attack I was going to SUE him! They hate that "SUE" word. Well his heart tests showed several blocked arteries and one so serious that the exercises would have caused a severe attack. He had 4 Stents put in asap and has been doing fine ever since. Did I get any thanks? NOooooo and I kept seeing that same doctor who hated me but had to respect my kuzpa. So people, try to make your concerns known to your docs. They are not gods, they only "think" they are!
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ruthbru, I looked at the link you sent and it does look very similar to what my doctor recommended! As you said I would take matters into my own hands and go for it. I guess that would be a REALLY long train ride for you to get to NYC:)! The doctor also stressed the importance of using both a moisterizer down there every day and lots of water based lubricant when doing the excercises. There is also some approaches on a website called "A Womans Touch". They call it a vaginal renewal program and have suggestion specifically for cancer patients too. That along with diet, excercise, sleep and hydration and I really am feeling a difference. I wish I could use a magic cream but since consensus is that it is risky for me I will continue down this path. Its exhausting trying to stay healthy!!
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Kira, I understand how you feel. Honesty until my DX I was one of the most modest people out there. I feel like that these side effects from BC are embarassing and that it would be great if our doctors BROUGHT THEM UP TO US...so we didnt have to find the courage to do it. Unfortunately they dont:(. None of my doctors had a hard time bringing up bone loss, joint pain, etc... but Sexual side effects were minimized into a lumped "and other quality of life issues"! I dont know what came over me since I finished chemo 2 years ago but suddenly I am not embarassed to ask any of my doctors anything. I guess I feel like I am at war to beat this cancer and its side effects. I dont win every battle but I'm not going down without a fight. I do remember feeling like you and sitting in an office but not being able to ask. Its so frusterating. Have you thought about going to one of the BC conferences held at local universities? there are usually some in each state. They are a one or two day conference that covers a wealth of subjects on BC, treatment and side effects. You get to pick your workshops that are relevant to you and dont have to ask any questions becasue there are so many other women there asking the same things. they are very empowering and you get to remain an anonomous face in the crowd. Another option is to call your Onc nurse and ask her. She can relay the message to your Dr. and call you back? I am so glad we at least all have this wesite and are comfortable coming here.
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I want to thank you all for the great ideas for talking to the Onc. I have only met my new Onc. once, and never saw a nurse, so don't know if he has one. My new Onc. is more worried about the breast not healing than anything at this time, which I cn totally understand after all it's been 4 months since surgery, and 2 months since it burst open. He was not even sure he should have me start the AL's yet because of the open wound. Susand, I like your idea of going to a conference. I will have to see if the local university has any conferences coming up. I know I can't have sex till this thing heals, but my hubby can't be expected to wait forever.
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Hey Kira, I didnt realize you were having trouble with your breast healing. I guess I havent read your other posts. Obviously that would take priority over other matters. I just want you to know that I have a friend that had a terrible time with her MX healing. It took a while and some treatment but she looks and feels wonderful now. Hang in there.
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I am so disgusted ..last nite I wrote a fairly long post about sex and deer hunting and a ty to Lowrider about remembering me,,,regarding both issues...Can I keep this simple? I will try...I started talking about libido issues in Jan of this year on older arimidex forum ty to Deb Jarvis's article in CURE magazine and yes I read her book also I wrote about my experiment with lubrication called orgasmix...ONE woman... when I reported WE had positive results. ,,kiddingly wrote on the site "her husband took day off and was waiting for UPS truck," I have many of these post and mine if anyone is interested..I am soon to be 71 and this loss ..not having a climax.. was one of the worst parts of taking arimidex and going off estrogen...I also reported in my missing post last nite that a week ago I shot a 140 lb buck with no horns at 88 yds!
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Medigal--do you still have your cervix? If you do, then there is still a risk of cervical cancer. How does your ob-gyn justify not doing pap tests? I really don't understand how menopause decreases cervical cancer risk.
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lakewoman, I would love to see those posts. As you can see I am new in this journey which none of us want to be on. I know till my breast heals things can't be as they were, but I really don't want to give up on such an inportant part of my life.
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