Arimidex - Coping with the SE's
Comments
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Here's some things I do at doctor's appointments that help them go smoother and make them more of a collaboration:
1. I have a notebook and write down all my questions (when the embarrassing ones, somehow they aren't so embarrassing when you are reading them off a list).
2. I print off Internet articles I've found, research from the home page of BCO, pertinent news articles etc. and bring them with.
2. I tell the nurse that I want to visit with the doctor before the exam (because how can you have a conversation with someone when you are bare-naked, up on a table, clutching a sheet?!)
3. go over all my questions, write down the answers, go over the blood work (ask for copies), show him the research article and get his opinion etc. all before the physical exam
4. do the exam
5. then when he comes back he can tell me whatever he wants to tell me, and I can ask any other questions I've thought of in the meantime...but do most the talking about your concerns first, before you are all shook up from being prodded around!
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ruthbru, Great ideas. I will be seeing my Onc. in January, and will do as you suggest. I will say the first time I saw him he did spend quite a bit of time with me before he did the exam. I'm thinking next time I will more than lkely meet his nurse. He is well aware of my history with the breast not healing from the BS, so he was very careful in that area. I'm thinking that was the reason I only met him. I am being treated with kid gloves by all now.
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Good advice, ruthbru! I'd like to mention the way some of those things are handled by my med onco and her nurses.
"1. I have a notebook and write down all my questions..."
I always do that. I have more questions and reminders for some visits than others. Last month I showed up for an onco recheck with half a page of handwritten notes. My onco walked in, shook my hand, and started to chit-chat. Then she saw my note pad and said, "Oh-oh...". She assumed I was having lots of problems or was concerned about a lot of things; but most of my notes were reminders to myself -- don't forget to ask for a copy of that mammo report from September, and don't forget to get a new script for Arimidex, etc. No big deal. She certainly doesn't object to my lists or my questions.
2. I print off Internet articles I've found, research from the home page of BCO, pertinent news articles etc. and bring them with."
Me, too. Sometimes I carry journal articles, web printouts, magazines, etc., along, just to have something to read while I'm waiting. Other times, I bring things because I want to talk to my onco about them. She has no problem with that at all. One day she walked in the exam room as I was putting away an article I'd printed out from the Journal of Clinical Oncology. She saw the journal logo and said, "What's new in JCO these days?". I know she reads JCO -- it's one of the mainstream oncology journals. So, I told her about the article, which happened to be about bone loss and calcium excretion. It led to a great discussion, some additional lab work, and a diagnosis neither of us was expecting.
3. I tell the nurse that I want to visit with the doctor before the exam (because how can you have a conversation with someone when you are bare-naked, up on a table, clutching a sheet?!)
I don't ask the onco nurse, although that's probably the polite thing to do. I do have to change my top and put on a gown over my slacks; but I refuse to get up onto that stupid table until I'm asked to do so by my doc. That goes with nearly all of my docs -- not just my cancer docs. It saves, what, 15 seconds, to have us perched up there already when the doc walks in? I say no. I will sit in a real chair and be as comfortable as possible for as long as possible.
Anyway, when my onco walks in, she starts some chit-chat and then switches over to how I've been feeling, new SE's (as she looks at my "since your last visit" paperwork), test results reported since last time, concerns I might have ... all that, while I'm seated in a real chair facing her. Then she'll say, "Okay, let's take a look..." and she'll help me up onto the table. Afterward, she invites more discussion, until we're both satisfied.
I try to use the chair-first approach whenever possible, with all my docs. It totally changes the dynamics when they walk in and you're sitting in the corner in a chair rather than up there on that table. They're forced to look at you like a real person and talk face-to-face with you before starting the exam. (It also lets you find out whether your doc is willing to communicate with you, or is only interested in hurrying things along so he/she can get on to the next patient.) The chair-first strategy does not work at my GYN's office, though; because of course we're stripped below the waist and have nothing but a quarter-sheet of fabric for modesty.
Your suggestions are really good ones. I think they're also a test of whether a doc is people-oriented or not. Someone who gets impatient with us for doing the things you've suggested is not the kind of doc I want overseeing my care.
otter
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Otter: You have a GREAT system for your Onc visits. I think it is a con game that they have us get undressed and we have to talk to the doc while he is checking us. My guy just tells me to get dressed and makes his "great escape". If I have questions I have to trap him in the room. I usually yell "Wait! I have things I have to ask you!" Otherwise he is gone to another patient. You have a great system but how do you get them to give you that much time? I feel like I am on a time-clock when they put me in the room! They always get the nurse to "play-check me first" so I have to take off the top and get on the table. So I give her a list of questions I want to get answers for and remind him when he comes in. It's not a system as good as yours but it's the only one I could come up with at my Onc's.
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I agree my first Onc. was really in a hurry. In fact it was the nurse who did the physical not the Onc. She just came in to inform me when to come for tests ect. While she talked to me she was busy talking into her machine the entire time, she never once looked at me. By the way she was the one cho gave me the chemo that's given me so much trouble.
My new Onc. at least at the first visit was much different. he talked to me for at least 15 minutes before leaving the room so I could chance for the physical part of the vist. It made me feel so much less like a piece of meat.
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I like the sit in the chair unitl I have to get up on the exam table approach too, especially since I sometimes have to wait quite some time at some of my visits! My strategy for getting my quesitons answered is to refuse to leave the exam room. I try to stop the doc on the way out if I can, if I can't I get dressed and sit back down. When the nurse or tech or whomever comes to get the room ready for the next patient I simply say I have questions the doctor didn't address. I'm waiting for him/her to come back and talk to me. Then I DO NOT LEAVE the exam room. Works every time!
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Some doctors are naturally good; others you have to train. I had to block the door so my surgeon couldn't escape (his nurse took me aside and said, "Good for you!"), but once he knew he couldn't escape me, we actually developed a very good relationship. (My theory on surgeons is that they go into this area of medicine because they like people better when they are unconscious!)
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Does anyone else feel like they've been beaten with a bag of hammers? I feel this way most days. Ugh.
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I've been very lucky with my BS, but that might be because I have to see him every 2 weeks or so. We have really gotten a chance to know each other because of my issues. In fact the last time he tried sewing me up which unfortunatly didn't work he talked to me about his kids and how they are doing school. It's kind of surreal to be on the operating table talking to the surgeon, oh well I guess he does what he has to to keep me from freaking out.
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"Does anyone else feel like they've been beaten with a bag of hammers? I feel this way most days."
enjoyful, I don't think I could characterize it as being beaten with a bag of hammers, but, there are days when my joints creak and my muscles groan. Let's see ... what are the remedies that women usually suggest? Plenty of exercise (walking, swimming, aerobics, whatever it takes, even if it hurts at first); staying up on your Vitamin D3 and calcium supplements; taking ibuprofen or Aleve as needed (a couple of Aleve before bed some nights, and I can sleep much more soundly); ... what else, everybody?
Hugs,
otter
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otter, I like your assertiveness. Since we moved here I've been blessed with super docs--who communicate well until now. Rad oncs were great, med onc is cold and uncommunicative. I'll implement some of your suggestions.
Your comments about the gyn remind me of something I did 30 or 35 yrs ago any time I expected to have to do the waist down type exam.The HBO we belonged to kept the exam rooms fridged so I wore a loose fitting skirt which which I could just hitch up and which I refused to remove. Kept me warm and in the chair until he came in.
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Kira I just sent you a PM regarding my older posts>
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Hi Everyone. I've been reading over the posts of the last few days and I've got to say, you gals are very informed and helpful. Enjoyful, I've struggled with a lot of joint pain and muscle pain on Arimidex. I really hate it. My shoulders are really giving me the most trouble as well as both thumbs. I have trigger thumbs. It's really tough when I wake up.
As for the vaginal issues, I took Lakewoman's advice and read the things she had posted previously. I was way too embarrassed to order a vibrator, so I convinced a friend of mine who was moving from our town to order it for me. She did so and I even got one that supported breast cancer research! It's small and is helpful, but I too won't use it when my DH is around. I use KY Liquibeads and like it better than Replens. It helps me a great deal. I also use Slippery Stuff that I got from my PT and KY Jelly (Sensitive formula). Due to Effexor, I was not able to climax. I was taking 75 mg per day for hot flashes. I cut the dose to 37.5 mg per day taken as half a pill in the am and the other half at night. I have recovered the ability to climax. I was peri-menopausal at dx (age 49) and have since had a hyst/ooph. I turned 50 this year.
I will continue to take the AI because I believe it is helping to keep cancer away. I am 80% ER+. I just want to thank all of you for the advice you have offered. I don't know how I'd manage this disease or treatment without you!
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Rocket, Thanks for the info. I agree with about taking the AL's I don't want to stop the, but as you I am 99% estrogen driven. I wasn't able to finish my chemo, so the AL's are all I have to fight this beast. I am new to the AL's, so not to many issues yet, but I want to stay on top of them. I'm 57, so I alreday have issues with my joins and pain.
rocet
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I don't know how to say this. I'm embarrassed, even here among my BC sisters and fellow Arimidexians.
I am happily married, and Mr. otter still likes to have a good time. So, when I started developing dryness and soreness "down there" and sex became uncomfortable (this was from menopause -- it was way before Arimidex), we began using gallons of KY. It's not a perfect strategy, obviously; but it helped.
One thing that stunned me -- absolutely shocked me out of my socks -- was that, although the physical part of sex became uncomfortable, there was no change whatsoever in the ease or, um, ... magnitude? <blush> of my org*sms. None. It was almost as if that function was not wired to all the other stuff. The dryness and ouchiness made the act itself uncomfortable, but wow. <blush>
I've occasionally remarked to Mr. otter that I don't understand how that all works. I mean, I have NO estrogen anymore; and my estrogen-dependent body parts have shriveled up. And, yet, ... it still happens, just as if nothing had changed. How can that be, when I don't have any estrogen anymore? Are org*sms not dependent on estrogen?
And then Mr. otter grins at me and says, "Well, guys don't have much estrogen."
Oh. That's right.
And then we snuggle and go to sleep. <grin>
otter
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I have disccovered much the same thing Otter. Wonderful to know, isn't it. Actually, my worst time with soreness was during Taxol, as skin there was also affected. Just so deliecate then. I got sores on my butt from cycling too.
I think too that you have major magic going. That counts for a lot.
Bet Mr Otter is smiling too. Major congrats.
I noticed too that you mentioned orgasnS. Same deal for me. In fact, the French website I consulted at one point mentioned (translated roughly), that while "men can have only a single orgasm, women can have several". I have changed in that area, but don't think I am shriveled. If this changes, I will get help.
On another topic....had an interesting convo with one of the priests at my church today. He has been undergoing treatment for prostate cancer, and he has been having hot flashes. Fortunately, the treatment is working as his PSA levels are down. Obviously didn't ask about the other.
As a final word on the topic: one of the things I told my breast surgeon is that my amazing discovery was that "Os" are not dependent on estrogen. She thanked me and said she had always wondered about that one. Thought it was important for her to know this, so she can share this with women about to go down this journey.
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[I had to put this in a separate post, 'cause I didn't want to spoil the other one.]
chabba, you said this, about waist-down exams: "I wore a loose fitting skirt which which I could just hitch up and which I refused to remove."
That is a great idea, and I would endorse and follow it, except for two things. 1) The only thing that gets me into a dress or skirt anymore is a funeral. 2) The thought of wearing a skirt to a GYN exam brings back dark memories.
[At this point in my original post, I told a bizarre and discomforting story about my first GYN exam, for which I was required to wear a skirt and anklet socks. I've deleted that story because, after thinking about the incident and re-reading my post, I decided it was just too personal. Also, any woman born since 1960 would find that story extraordinarily weird. And, the story really wasn't relevant to this terrific thread about SE's of Arimidex.]
But, that was why I will never again wear a skirt to a GYN exam.
otter
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otter, Oh I so can agree with you. The thought of wearing a skirt makes me cring. When I was in junior high I had an old geaser Science teacher that liked to look up our skirts. he would drop his pencil near us so he could do it. At one time he took me and another girl into the back room to show us how to check our heart rates, I'm sure you can guess what he did. She and I were the only 2 girls with any shape at the time. I will glaly wear my pants and make him wait.
As far as the mojo thing, I would agree having gone through the change years ago I am dried up as well. KY jelly has been my friend for quite a while. I hope you're right using the Femara will not stop that enjoyment. Mr. Kira surly would be glad of that, and I must say that is really my worst fear. I may be 57 but that doesn't mean I want to give up all the things I enjoy in this life. For goodness sake I've had to give up so much already.
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Gals, perhaps Ophena will be a choice for us soon!
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MHP70, what is Ophena?
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Otter, Wow...I dont know what to say abou the Jumping Jacks! About the "O" though, thought I would mention that the sex therapist I went to said they are very benificial to keeping that area healthy. Apparently they are very healing beacause they bring such a surge of blood to the area. I was told to try and have a minimum of one per week!! Sounds great to me but I dont know if she realizes how busy I am between work, young children, and my husbands long work hours. I'm not sure I had one a week before breast cancer. Maybe she really is trying to improve my quality of life!
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Changing the subject a little. When I saw my Onc. he called the AL's chemo in pill form. Has anyone else been told that? If so it sure would explain our strong SE's we get.
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Hey kira, I have never heard that. AI's are similar in that they are systemic treatment but they are not killing our regular cells. Hopefully they are starving are estrogen hungry breast cancer cells and causing them to die. I thought that the SE's we get are because are body's really do need the estrogen we are depriving it. My onc explained that was why tamox was better for bones because it doesnt stop estrogen production but blocks it from attaching to bc cells.
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I know nothing about this site, I just goggled Femara and this came up. I just don't know what to think.
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Hi Lakewoman,
I couldn't find your comments about the orgasmix contents. Would love to try it.
Incidentally, Bayer Pharm. Co. in Quebec, Canada has recently backed a scientist to the tune of $300 million for his work on vaginal dryness. The treatment is tentatively called "vaginorm". It is non hormonal and relies on the body's DHEA. It is presently being dubbed viagra for women, but does not work like viagra. Clinical studies on this drug will take two years before hitting the market.
http://www.canada.com/health/Bayer+puts+million+into+Quebec+company+pink+Viagra/3631438/story.html
Glenis
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Ophena is a new SERM that's making its way through the FDA approval process. Trials showed that it successfully and safely alleviated vaginal dryness and atrophy. I want me some!
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Now that is interesting. Boy I hope it gets FDA approval during my life time.
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Painterly -
Thank you for the information! I called Endoceutics, the company conducting the Phase III trials on Vaginorm, and left a message inquiring about the trials and how I can go to there. :-) I'll let you all know if and when I hear back.
E
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kira -
I hear you! I called Shionogi Pharma, Inc., the company doing the Ophena marketing, and they said they've finished all trials and are preparing the FDA submission now. Keep your fingers crossed for a speedy (only one year!) FDA approval.
Should we all wear Ophena t-shirts and march on the FDA? I think so.
E
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Love it march on the FDA. I can see it now!
On another note did you see my post about the AL's being chemo. I am serious he did say that. In fact he was rather concerned my wanting to take it with the SE's I got from the 1 chemo treatment I did get. I actually had to talk him into giving me the stuff.
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