Arimidex - Coping with the SE's
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Native/Ruth - I think you are both very insightful about this! It has been a blur since August and just now finding myself thinking "what the heck just happened?" The surgery is over and things are about back to 'normal,' but they really aren't back to normal because "normal" isn't there anymore. A whole new set of challenges arise - Vit D deficiency, osteoporosis, and all the unknowns of five years of medications. Oh well - one day at a time. Took my first Femara today and didn't morph into a vampire or something, so that was encouraging!
:):) Hey, you gotta keep a sense of humor, or you'd really go crazy! And, seriously, I SO appreciate everyone sharing their experiences.Linda - get back to your onc on depression/suicidal. I had an interesting discussion w/onc today. He has some patients who take the AIs every other day. They still don't know the exact dosage that works for everyone. The trick is to find the balance - the level that it's working (some side effects) but that the side effects aren't totally overwhelming/severe. That makes a lot of sense to me because I don't understand how the same dose is given to everyone regardless of age, health, weight, etc.
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Read yesterday that playing Tetrus helps with PTSD.
Now I have a funny image in my mind. An Arimidian following a low glutin diet, eating 9 coconut oiled prunes, popping calcium and vitamin D, walking on a treadmill while playing Tetrus.
Sorry, weird sense of humour. <grin>
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LOL molly! If it was a guaranteed fix for my Arimidex SE's, I'd be on that Tetris treadmill!
E, Unhappy Arimidian
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I am sorry you are still having a tough time with it Enjoyful.
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I've been on Arimidex for almost three months and have had joint pain and aches, and it hasn't been too bad, but recently I developed blood in my urine, which I believe may be from a kidney infection. I've never had this before and am wondering if anyone else has had this as a side effect from Arimidex? I don't want to blame Arimidex for all of my ailments, but maybe there is a connection.
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Blood in your urine - means go to the doctor - quickly. Definitely Not a side effect.
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Here's a poem; not exactly on topic, but perhaps appropriate for us!
Dotage Thoughts by Alice Ryerson
I read in the paper about an old lady who married an Arab at seventy three.
She left all her children astonished behind her and galloped off chuckling and slapping her knee.
Shall I marry an Arab?
I saw in a movie and elderly person who bought an old wagon instead of a house.
She drove to the Andes and set up a sawmill and ran it with her aboriginal spouse.
Shall I buy a wagon?
I went to a party and met an old woman who stood on her head when they passed the dessert.
Descending again, she explained to the people that if you eat vegetables age doesn't hurt.
Shall I stand on my head?
I read in a book of an octogenarian living alone in the top of a tree.
She spent most of her time in the lotus position and lived to a skittish one hundred and three.
Shall I live in a tree?
Not daring to put all my eggs in one basket but feeling it urgent to go forth and seek,
I bought an old wagon and put a tree in it and stood on my head while I married a sheik.
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This might be TMI, but I just got the results of my last PAP from Oct 27 & they want me to do a repeat. It seems I have a strong case of vaginal atrophy & it made it impossible to obtain enough cells to reliably interpret the smear. Therefore, the PAP came back "unsatisfactory". It was recommended I take 1/4 applicator of Premarin vaginally ea day for 2 weeks & then repeat.
Needless to say, I was concerned as I take Aromasin & the ob-gyn wants me to now take estrogen?? I called my Onc & was told the Premarin I would use would be of such a small strength & amount & that it is done local, not systemic, it would be okay to ONLY use for the 2 weeks. Then wait 2 weeks & repeat the PAP.
I also asked & was told to continue Aromasin in conjunction with the Premarin.
ANOTHER lovely SE from that little white pill !
Anybody else have to do this?
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Val, I was just going to ask a question along the same line......I had my yearly physical on Friday. Everything was good EXCEPT in that area. This is in the TMI zone too, but I guess that is what we are here for......decades ago I had a rough forceps delivery which resulted in scarring. I was able to keep everything going OK because of the fact that I had estrogen circulating in my system (first naturally and then HRT.....I know, STUPID ME!). Now without estrogen, the scar tissue is thickening and closing in (which I'm pretty sure it would have done anyway eventually with a natural menopause, but Als are hurrying the process along). When the doctor tried the pap, he said he was pretty sure that he did not get a sample. He called it 'vaginal stenosis' & what he said was that I would need to have a 'minor' surgery to remove the scar tissue and open things up. He was going to consult some surgeon colleagues and get back to me. BLAH!!! Maybe I can suggest the premarin option, although that is not really a fix, is it? I hate body stuff!!!!!!!!!!
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Well, my med onco has recommended (twice) that I use just a tiny amount of Estrace cream on a fingertip, smeared around the outside (not the inside) "down there", to combat vaginal atrophy, dysparenuria, intercourse-associated UTI's, etc. She was very specific about the amount, and she was as concerned as I am that it not be so much as to increase my blood estradiol level. There is no applicator involved; nothing goes inside; and I'm only supposed to do it twice a week for 8 weeks. We did talk about some studies suggesting that vaginal estrogen can be absorbed and can raise the blood estrogen up to an unsafe level; but she said those studies were done with much larger amounts of product administered vaginally with an applicator (as per the package instructions, apparently).
What she has proposed is an 8-week experiment to see if that tiny amount of estrogen will improve the situation down there without negating the effects of the Arimidex I'm on. She suggested this approach more than 2 years ago, but I declined. So, she suggested it again (recalling that we had talked about it before) at my recheck visit earlier this month. I have the new prescription in my pocket, and this time I think I'll get it filled.
otter
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Add my name too to the Vaginal atrophy. My gyn gave me Vagifem. She cleared it with my onco. I trust my gyn that she would not have put me on it if it were harmful! Believe it or not, she has also recommended physical therapy. I am going to give it a try.0
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OK, I have a dirty mind; but what in the world does physical therapy for that area of the body involve?
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I wondered that too..hum?
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Otter, will your doctor check your estrogen levels after 8 weeks? Would you do the Estrace cream forever, or just 8 weeks (and when you go off, won't you be back to square one)?
Val, is the premarin just for the purpose of being able to get a good pap?
GRRR! Everything I'm reading on the web about this is saying "Estrogen, estrogen, estrogen.......". Which is really NOT a particularly helpful long term answer for us
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So much to consider ~
Yes, ruthbru, my taking the Premarin is to get a good pap. The gyn nurse I spoke with asked if I'd ever had repeat paps & I said yeah. I checked my records & the last repeat pap I had was in 2007 & I had the LEEP procedure done in 2003 with some repeats after that to be sure everything was back to normal. I got the feeling she was going to suggest I skip a year but when she learned I'd had previous repeats, she didn't.
ruthbru ~ When the gyn did the pap, she told me I had vaginal atrophy & the conversation led to you know where
& she suggested I try Zestra, which I haven't found yet in the box stores, need to try Walgreens or Rite-aid maybe, anyway, she also did suggest if I wanted to go au-naturale, try Olive Oil. I know the AI has hurried "it" along faster than if I wasn't taking it because I have been post-menopausal for 8 years. Ugh!Oh, I was on Prempro for 8 1/2 yrs before I was dx'd. I am sure in my heart that it is what caused the changes in my body cells that led to the bc....... I have no doubt about that.
otter ~ I am so glad you posted about your gyn suggesting you experiment with just a tiny amount on the outside. I just don't feel safe using even the quarter applicator amount on the inside even tho the NP from the Onc's office gave her approval. I think using a bit less more to the outside would work just as well. Maybe skip every other day......I don't know but I have to start tonight in whatever way I decide. The repeat pap is set for Dec. 14.
Also, I was not happy that that damn tube of estrogen was $40 !!
Just to get a reliable pap! Before insurance it was $130. Yikes! PT for down below?!? Interesting.......
Still undecided.........hate this crap! Brought on by other crap !!
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Howdy!
For those having aches and joint pain - above and beyond the best thing is the elimination of as much gluten from your diet. Chex cereals are mostly gluten free and the regular grocery shelves now stock gluten free stuff like big flaked rolled oats, Bisquick has a baking mix now, use potato bread, and potato flour. I also went to raw sugar and avoid most things white.
I did an experiment. I ate sandwiches from our little lunch cart at work rather than bringing my own. Within a week, my joint pain was back. Going back to my gluten-free stuff, no joint pain after about 4 days.
On the vaginal issues - estrogen NOT good - old fashioned cooking oil actually works very well. I think the best products are Karma Sutra stuff - very nice, warming, tasty and oh so slippy. You can get them online or google to search for an outlet. The nicest thing about it is that it is not your local drugstore where the booming voice comes over the loudspeaker while you are at the register and one of your friends and/or neighbors is a few folks behind you..."Price Check on Lube at Checkout #2".
Best wishes all!
LowRider
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Valjean, I don't know if the tiny amount of Estrace that's been suggested for me would do anything to change the histology of cervical cells. Is that what you mean by "getting a good PAP"? Or is it just so that your GYN can collect the sample at all? From what I was told, the amount I'm supposed to use and the place I'm supposed to use it would not allow it to diffuse as far as the cervix -- at least, that's the hope.
And, I do want to clarify one thing: it was not my GYN who suggested that I try Estrace cream. It was my med onco -- the one who recommended my chemo regimen, saw me through chemo, put me on Arimidex, is monitoring my bone density, and is following me carefully for signs of BC recurrence.
Honestly, at this point I would never trust my GYN with a decision about vaginal estrogen. My original, long-time GYN was the person who dismissed my concerns about the breast lump I could feel but that could not be seen on my mammograms. At that same visit he urged me to go on HRT to reverse the symptoms of vaginal atrophy I was having. My "new" GYN is a nice enough guy, but just don't have much faith in him, either. (For some reason, all the local "women's" doctors are men; but all the docs I've seen at my breast health/comprehensive cancer center have been women.)
LowRider, thanks for the warning about vaginal estrogen. I appreciate your concern -- believe me, I've been fretting about it for more than 2 years (ever since my med onco first suggested it). The plan, as I've mentioned, is to use it in an amount and an application that, according to my onco, will not result in systemic absorption. But, we will not be measuring my blood estradiol levels; so we really will not know if it is still excessive. I have done quite a bit of searching of the medical literature about absorption of vaginal estrogen -- did I not post that on this thread? I'll have to go back a few pages and look.
Up to now, the only thing I've been able to use is lots and lots of regular KY. All those other fancy things (Astroglide, Replens, etc.) burn and I cannot tolerate them. And, I'd rather not put foodstuffs (vegetable oil) in there, because even an atrophic vagina has bacteria and yeasties in it. Especially an atrophic vagina. Anyway, I'm not all that interested in oily things -- too messy for my habits, and too reminiscent of tales about college life. Okay, I'm going to stop with this before we get bumped over to the MOJO thread!
otter
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Hi All,
I hope this is the right place to ask this. I'm 43 and chemopaused and my Onc wants to put me on Arimidex next month if my hormones continue to show postmenopausal status. I'm all for this, since AI's are showing better results than Tamoxifen at preventing recurrences. I'm wondering if anyone else is my age and what SE's you experienced, if any going on Arimidex? Can I expect the joint pain, for instance, if I have never had joint problems before? I'm already used to the hot flashes, so I'm not concerned about that so much. I've read I should have a bone density test before starting an AI. Any info would be helpful. Thanks!
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shelleyj: I was 47 when dx'd, chemopaused immediately with Taxol same age. We used tamoxifen for 3 1/2 years due to pre-menopause, now on Aromasin (another AI, like Arimidex) since September. I am not experiencing any joint pain, hot flashes--yeah, they are no different. We stayed on tamoxifen as long as possible, as it is better for the bones (I have bone density loss), and the AI is going to just decrease my bone density even further. We will revisit the bone drugs (NOT a fan) next year's dexascan if worse. GOOD luck to you in all your treatments, and remember, everyone experiences s/e's very very differently on any drug. All my best~~~juli
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I am new to all of this but I wanted you to know that I enjoy reading all your posts everywhere
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Back to pap smears etc. for a moment....my GP has argued with the oncology people; he doesn't really think they are necessary on a yearly basis, but they INSIST, so he rolls his eyes and does it. Since putting 'whatever' on the outside won't really do anything for the inside, I imagine I am in for 'a scrapping out' experience.....but won't things just start to cave in again? Question from reading the web.....has anyone tried dilators for medical (as opposed to recreational) purposes? 0
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I don't even want to think about how uncomfortable having a pap will be now. It has already gotten hard just with going through the change. Here I am 57 having hot flashes, mood swings, plus already very dry outside as well as inside. To make matters worse I'm so tired all I want to do is sleep.
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Well, I am sure glad we are all in this together (although it would be better, of course, if none of us was in it at all). I don't know if it's 'misery loves company', but it sure helps me, anyways, to have you all to bounce things off of! So thank you (and I have put the Jarvis book on my 'to purchase' list).
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Hi Ruthbru. To answer your question on dilators, yes. I had never used any type of vibrator or dilator prior to my cancer diagnosis. I had no vaginal atrophy on tamoxafin or even with my ooph. Almost immediatly after switching to Arimidex vaginal atrophy set in. My gyn's strongly suggested estriol cream but both my oncologist and primary said absolutely not for me. I refuse to give into this vaginal atrophy without a fight so I booked an appointment with a Sexual Health Doctor and took a trip to New York City to see her. She emphesized that you have to exercise (or physical therapy to your vagina as someone wrote) the area to keep it healthy. Part of it was using a dilator. Starting small and slowly moving up in size as comfort allowes. the dilator has to be used with specific kegals exercises to get maximum results. She said you could also use a smooth plastic vibrator. The point of the exercises is to slowly stretch the tissue and bring back elasticity, but also to get blood flow there with the exercises and vibration...kind of like how a massage brings blood flow to a muscle or area. This was all combined with daily moisturizing and lots of other suggestions. Honestly I was embarassed to buy these things at first, but then I thought what the hell! I lost my breasts to this disease I'm not going to let it take my vagina without a fight. Anyway...it really has helped the situation a lot. How did we get from talking about prunes to this!!
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I have decided that since my Onc. has given her approval, I will do the 2-week regimen & then repeat the pap. My ob-gyn's nurse told me, "The result was unsatisfactory. They didn't get any cells. This is what is recommended." My record at the ob's office states I've had bc & yet they still recommended this estrogen. That is why I contacted my Onc before I consented.
This had better do the trick; I'm not happy doing it, but I will.
The only reason I brought this up in the first place was because vaginal atrophy is a SE of AI's.
Thank you, everyone, for your input.
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I want to know if you get to pick your therapist??? Now,let me see...who should it be. 0
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OMG! NO...I dont have an actual therapist for this! The Doctor just instructed me on what to do. I know I may not sound like it from my posts but I am really on the shy side. I dont even let my husband around when I am doing my "exercises"! 0
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Maybe it WOULD work better if you DID get to pick your therapist! 0
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LOL! Is Johhny Depp a PT?
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Thanks, Juli for your reply and kind words.0
