Arimidex - Coping with the SE's
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medigal: My onco had also said I'd be on Aromasin for 7 years, total of 10 years that would've been on Tamoxifen (3 1/2). Told to stop the Aromasin 12/27/10 (after being on it since 9/2010) due to period starting back up after 4+ years of post-menopause (chemo-induced totally). Good to see others' oncos prescribed an AI for 7 years. Were you on Tamoxifen at all? Just curious, thx! I am also very very sorry to hear of the vaginal problems and the DP problems, hope you get that all squared away. I was advised by my ex-primary-doc to get another primary doc (she went into hospice care for her elderly patients, so out of primary care) and to HAVE the paps (at that time, totally post-menopausal and was NOT going to have them yearly...how things change, but I hear ya, I'd have decided the same thing) ~juli
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Juli0212: I first insisted on using the Tamoxifen when I was with my first Onc because I had read so many frightening things about Arimidex on the internet. I had been on it for just a few months and changed Oncs. The second Onc told me I was post-menopausal due to my age and Arimidex was the one I was supposed to take. I tried to convince him I was scared of it and he harshly said to me in no kind way "Take Arimidex or die!" I decided to take Arimidex and have been on it for 7 years. I really have been lucky with it since so far I have been able to cope with it and not have the serious bone problems. So I am just concerned at this point about the serious vaginal atrophy problems it can cause. It seems like the problems never really end with bc!
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medigal, you sure hit it right on the bullseye! bc never ends...it's either the meds, the tests, the side effects of course, but to keep it in perspective, we ARE saving our lives (trying to anyway). I hear ya on the tamoxifen vs. an AI (for the bones anyway). That was actually why my onco did NOT switch me sooner to an AI, as I have bone density issues (not quite osteopenia). You are lucky in that 7 years you've really not had severe side effects. I had the very rare side effect of tamoxifen of permanent retina damage (VERY rare I stress)...only thing to do is protect the eyes (raybans for me now, I used just regular glasses as prescription sunglasses before, they don't protect the peripheral vision, raybans are great for that). I originally was prescribed the Aromasin for 7 years after the 3 1/2 years of tamoxifen....we will see what's up (doubtful today at gyn specialist, but who knows) at these appts. (onco next week). But being OFF any of the anti-hormonals is scaring the bejeezus outta me since 12/27/10!!! I WANT to be put BACK ON something (probably tamoxifen I'm thinking, but again what do I know?)...being off it after not even 4 years after treatments is NOT good, neither is not having the hot flashes/night sweats that I had daily since Oct. 2006 (chemo-induced-menopause in one day/Taxol-Gemzar).
I wish you good luck on the vaginal atrophy, as I'm guessing you ARE a sexual person, and no we don't have to get into that, but really it IS a part of our lives, it shouldn't be a 'taboo' subject? My BF (DP? Is that Dear Partner?) and I really do enjoy a healthy sex life, that hasn't changed a bit over the years, NOT rubbing that in (pun not intended?! :O) ... but I just feel badly for you. I hope your GYN can HELP you with that particular problem. Is DP up (again pun not intended) for any kind of help for himself, I'm guessing not (most guys would not be interested in seeing a doc/therapist, just a given). Thanks for the post~! ALWAYS my best~~~~juli (just call me juli)
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Juli: I have to laugh at your pun on words. They are very good especially for me. No DP is not for (Dear Partner) in my case I made it clear it meant (Damn Partner) and I think you now know why. I do not have a sex life with "anyone" or "any thing" (if you know what I mean). Due to his personal problems which he made no attempt to get help for, I decided years ago we would just live celibrate as "partners" since we have children and I was not going to make them pay for my mistake in getting into such a horrible predicament. I am not a martyr by any means just know what was best for me and my family. I took a vow and decided to keep it. "He" has to deal with not being able to keep his vows. We do what we feel we need to do. I have learned to live in my self-accepted "nunnery" but it has become a concern from what I read on here about vaginal atrophy. It may be too late for me to protect that area after 30 years of unuse. I had no idea what the outcome of my decison to live such a life with DP could be. We are not young any more so living together "seperately" basically would not be a problem except for the atrophy issue. Do you think I could go "rent a man" some place to help my problem? Just kidding! I was serious about keeping those "vows".
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medigal: We probably should PM each other!
DAMN, I should've KNOWN it was DAMN Partner! Gosh, I truly do feel for you (again, pun not intended...I won't 'feel' you...see why we should PM? lol). And having kids too. I am thinking maybe your gyn may refer you to a errr-ummm...sex therapist? JUST for you? Especially if you're willing and able in 'that' area, you don't need a man, yep, know what you mean there~! Living celibate was not what you signed up for, but as is usual/typical with us women, we adapt. You have a great sense of humor, and I'm sure this has not been easy for you at all, add in BC and probably other issues with aging, and you seem right on the ball (pun DEFinitely not intended). PM me if you wish to continue this funny/sad situation. I do not mind at all. Others here may though...(but in my *new* frame of mind? I DO NOT CARE...sorry all!) )))) Later~~~juli0 -
Juli: Thanks for the PM. We should take our act on the road. We could have a lot of fun and we could have a ball! (Won't write what I really mean since with your great imagination, I think you already know.
) I don't know why any of the other ladies would think badly of any thing we have posted since the topic was brought on by someone introducing vaginas. I just wanted more education and this seemed the place to get it. Thanks ladies! Sometimes "not" knowing stuff makes life easier but I read by my own accord seeking knowledge. The Mod also likes us to keep things medical and this is definitely as medical concise as one can get! Keep your chin up Juli and never lose your sense of humor. It can be very valuable. 0 -
Hi Sisters,
I just found out that I have Hypertension I believe from being on Arimidex (going into my 4th year). I guess I am writing to see others experiences and for advice. Over six months ago I was put on anxiety drugs as needed to calm down. I used them thinking there is so much crap going on in my life now, the money and economy issues, my husband runs a business with his brothers and you might understand how dis-functional that can be. Each time I went to my individual doctors they would each say, oh - your bp is up but no one ever addressed medication to help control or lower it. This December while at a 6 month check up my onco said the said thing, oh your bp is really high . It was 180/105 and she gave me a pill and instructed me to see my gp to regulate it. I have been on meds and today spoke to my gp and he is increasing the dose. Actually doubling from 25mg topal to 50 mg twice a day. Does anyone know how long it takes to get this under control or is an individual issue? I blame the the bp on Arimidex but will stay it.
Sorry to be so long winded but I am frustrated with thinking and being told its emotional when it is a physical issue. Anyone else have this or are my doctors not listening to me? I would appreciate all your knowledge and stories. Thanks for your support.
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Medigal
Extravirgin Coconut Oil. Comes in a jar. Also, replens was getting too pricey - so, bought Vitamin E oil capsules high iu's - but can't remember exactly what - nick end of capsule with a scissor and insert as a suppository ;-) VERY comforting...
I found the replens, besides getting expensive, would sometimes sting. Hated the 'beads" thing, what ever that was.
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Okay, saw the gyn. specialist today. She immediately ordered an endometrial/uterine/cervical biopsy to rule out uterine or cervical cancer (I also had the HPV vaccine-the 3 boosters that yep, is usually for the young girls, but my previous primary doc--bless her soul--got my insurance to approve the boosters), and the pap to help rule out possible ovarian cancer, but we'll also do an internal ultrasound in 3 weeks, after these results come back. She felt the medication switch was NOT to blame, felt it would've maybe caused a 'breakthrough period' within a few weeks of the switch (Sept. 2010), not 3 1/2 months later. She was very concerned, but I don't 'go there', but I'm also EX-tremely bloated, WAYYYYY more than I've ever been, and mega weight gain since a few weeks ago. She hopes to have results before my oncology appt. Tuesday, but may not (takes a week)...and agrees to get back on an anti-hormone-cancer drug ASAP, but that's the oncologist's decision, not hers. She thanked me for bringing all my lab results, so she didn't need to order any more bloodwork, shows consistent menopause for too long. It's not normal, rarely happens (she's never seen it). Soooo, we shall see. I am awaiting going BACK ON an anti-hormonal, as it's not been long enough to be without it. Just an update for now...thx! ~juli
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DesNY, I believe A can cause the heightened readings, but the anti-depressents may also be a contributor. It is very frustrating to not know but I think your onco was correct to have you let your GP monitor it. Only because 10 different docs will give you 10 different answers, so to have it all regulated by one, your GP, seems to be the most efficient, and may help to get it under control.
And, yes, most of us face the same problem of docs who just don't listen, so you are not alone.
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Desny--unfortunately, high blood pressure is a sign of anxiety/stress as well as a condition of its own. When all the docs aren't communicating, it gets overlooked too often. Getting it regulated can take some time, try to be patient if you can. There are so many types of drugs to manage blood pressure, each with their own side effects and effectiveness in any particular individual. Most blood pressure meds are started at pretty low doses and increased over time at various rates depending on the person's blood pressure response and if/what side effects show up. Is Arimidex the cause? Hard to say, that's not one of the more common side effects of A, and chronic stress/anxiety can cause high blood pressure (it's a wonder every cancer patient doesn't get it!). If you think the A is the culprit, no one's going ot argue.
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Caerus,
You opened an end on a vit E capsule and put the entire capsule inside...correct? How did you use coconut oil? Starting to need something and I am with you on replens and the stinging.
Finally got the dry eye issue under control so it only stands to reason some other place will need attention.
It seems like quite a few of the posts are stating 5-10 years of the Lovely Drug. I was told no more than 5. Is the length of time partially determined by stage or node involvement? Just wondering.
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Juli, My oncologist got back to me and said I should see my gyno who will probably do an ultrasound and possibly a uterine biopsy. I also see the oncologist next week anyway and I guess between the three of us we figure out what hormonal therapy to switch to. Sounds like our docs are moving in the same direction, so I suppose that is comforting(?) I guess the gifts of breast cancer just keep on comin'
Osteoporosis, cataracts, "post-menopausal periods" lol...what's next? Angela
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Dear NativeMaine and Patoo,
Thank you for your respondes. I agree with both of you that it can be hard to tell why bp/hypertension gets overlooked for emotional issues. I am grateful to you for responding to my concerns and comments. Even within myself it is difficult to determine my tolerance at this point because I am not feeling well. I will try to have patience and do as my gp instructed and double the topal dose and see how my body adjusts. What may have started as stress turned into a bp issue. Even my onco told me that if I am an person who tends to be hypertensive that Arimidex would highten the condition. I am feeling more confident about it being taking care of now and I thank you both for your comments and support. Over the last 6 months I also had my edncroine doctor lower my synthoid because I was having heart palpatations. She forgot to lower the dose after I finished chemo. I do think that each of my doctors never looked at me and all my issues, only their speciality. I don't write often - I did while going through treatment and reconstruction - left for awhile when the boards got crazy but I do check in and comment when someone is distress. Thank you for your support.
I will try to keep in contact and join in more when I can.
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Good luck, Angela~~we are the very few in the minority here, maybe we should just PM each other so our problems don't interfere with the others here? Keep me posted by PM, and I will do the same, THX! ~juli
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i just met with the most incredible oncologist today. I am floored. She sat and talked and asked questions...probing questions. Ones nobody else has asked. Listened to my concerns about the SE of AIs. WIlling to monitor me closely for the natural approach as long as blood work supports the suppression of estrogen. She asked me for a list of what I had started...nodded her head until I got to flax seed and shook it no. Hormone accelerator! HUH?! Miss smarty pants me did not know that and had to look it up when I got home. I meet with her again next week to discuss what I am taking as opposed to my blood work as she is not even sure I am truly post meno...again the first one to want that confirmed. She begged me to get cracking with stopping smoking. ASAP. Not for BC but for all the rest. She is simply incredible and very careful not to dis any other doctor. Will insist on any CT PET etc test she believes I need and said do not worry, they will get done if I order them. She is as awesome as my PS and that is no small thing. For the first time I feel a CENTER of care- a focal point. that isno small praise coming from me....I will keep you all tuned.
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Medigal, find out if you still have a cervix. If you do, you need the yearly pap (my GP was sceptical as to whether or not I needed one every year, so he consulted several oncologist colleagues who gave a definite YES answer and convinced him). As to the atrophy, even if you don't, if you could....um.....insert a regular size object without pain or discomfort, then you don't have it. If you do, the dilators on the website I listed come in graduated sizes from smaller than a tampoon and on up.
Juli, it sounds like you finally ended up with a good doctor, and Annette also. Thank goodness!
Desny, is your weight OK and do you exercise? Both of those things have a tremendous impact on blood pressure (plus exercise reduces stress, anxiety levels etc.) Also, maybe a good mediation CD or hypnosis CD would help. I bought a hypnosis "Reduce Stress" CD, and it is fabulous!!!!!
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ruthbru,
Yes, I am destressing! I go to dance arobics a few times a week and water arobics also. Yes, the weight is an issue. I'm still hanging on to 30 pounds from chemo 3 years ago. I have lost 6 pds in the last month from the stress and being hyper! I purchased stress/relaxation CD's and one is about finding inner happiness. Just love that one! I am trying all. Thanks for your comments
5/7/2007 mast, chem 8 treatments CMF, reconstruction with implant
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I'd like to comment on the nurturing question. I know that while I was going through treatment (chemo and rads), I felt very angry - mostly because my BC could have been diagnosed much sooner if I'd had a better gyn. I was angry that I was having to endure such difficult treatments when they might have been prevented If he'd taken my concerns seriously years earlier about the three lumps in my breast! I blamed myself a lot too for not being more assertive with him. Well that's all water under the bridge. I can honestly say however, that I didn't feel very nurturing during that time. I was in survival and fight mode. I went into depression mode soon after completing the treatments because I feared the beast's (bc) return and because I was very fatigued. Now, a year after my diagnosis, I still get angry and depressed occasionally, but I am truly nurturing once again. I'm like Ruthbru. I am very sentimental and can cry easily over a Kleenex commercial. If anything I'm a lot more nurturing than I used to be. I'm getting a goldendoodle puppy next week, and I'm actually worried I'll nurture him too much! Don't worry girls, I also believe strongly in well-behaved dogs and will be training him. My kids are grown and we have an empty nest, so this will be really good for me.
As to the palpitations question, I have always had palpitations from as far back as I can remember, but never thought much about it until I had my second chemo treatment and began having major tachycarida. I have been diagnosed with AVNRT AV Node Reentrant Tachycardia. I almost pass out when I experience it if it lasts longer than 30 seconds. It's scary, but I stopped taking the beta blocker because I couldn't handle the intense fatigue. Cardiologist wants to hospitalize me and put me on another med and monitor my heart. I have refused at this point. I'd be hospitalized for 4-5 days. I just can't do it! I've had enough! My heart races every day, but not long enough presently to feel like I'm going to faint. I also have hypothyroidism, so have to have my TSH checked regularly. If the meds are too strong, it can also cause palpitations. All this and BC too. Life is difficult sometimes, but I'm glad to be alive. I'll stay on the A team however as long as necessary, regardless of the side effects. Hang in there Ladies!
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ruthbru: This is a gyn. specialist I saw back in 2006 for the period-that-never-ended during first rounds of chemo agents. I believe I have good doctors, and would not go (or have fired) to the docs that do not have my best interest in mind. I will continue to see this gyn. for my regular yearly paps/checkups. I also believe in being proactive, when anything *pops* up, I'm the first to get things going...making sure I have my own medical records as well (gyn. was delighted, so then she didn't have to order/wait for menopause labs) to bring copies with me. One has to do what one has to do----and yep, gotta have GOOD docs on one's 'team'.
Best to everyone...and thank you also! ~juli
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mersmom,
Yup, I use the vitamin E oil capsule ( after nicking the end) as a suppository. Usually right before I go to sleep when I use it - so use a pad & underwear too
The coconut oil, which melts on contact with warm skin I use on the exterior. Can't remember the thread, but someone also suggested, get ready for it, Crisco! I LIKE IT TOO!!!! Keep switching - only the replens would sting. The others all seem to help. Annette - congratulations on finding SUCH a good doc! Please share her good advice with us. I too was told NO ( loud no) to Flax seed. I use Nordic Fish Oil for Omegas (lemon flavored) but still fishy
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'Slippery Stuff' (yes, found at Amazon) is also good.
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Keep posting your conversations here...I for one don't mind at all a diaglogue going on between 2 people.....
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I've been only been on the AI now for about 8-9 months. I had my lipid panel done by my regular doc and I'm in shock--my cholesterol is up 50 points from last year before I started the meds! Is this a side effect of the medicine or the menopause I got thrown into with the ooph? Did anyone else have their cholesterol sky rocket like that? It was 158 last year, and 208 now! My HDL was good (I think it was 80 and normal is anything over 40) but my LDL's were 112 and they are supposed to be under 100. I'm pretty sure it has to be my meds, but geez. . . .
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Weety, elevated cholesterol is an AI side effect. I think Omega 3 and Niacin are helpful. Mine went up, but our measurements are different here, so I can't say if it's equivalent.
Julie & Medigal - I second Karen - always something new to learn.
Ruthbru - you're like the cheerleader here. Yeahhhhhhhhhh A Team!
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Careus- I certainly will...I see her again next Wednesday. I think I missed soemthing...why are people putting vitamin e capsules in their bum???Totally stumped here!
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annetek--vitamin e oil helps with vaginal dryness, one of the more common side effects of Arimidex. The conversations move so fast here it's sometimes hard to keep up with what responses go to what conversations!
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weety. I think you got the double wammy (not including BC ). As already mentioned raised cholesterol is a side effect of the AI, but also of menopause which looks like you were forced into. You'll have to do what make you comfortable to bring it down. There is no shortage of information and advise here. Personally I take omega 3's, but did start a statin over the summer. Good-luck
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Oh! Ok, i get it. I can chime in on cholesterol and menopause...I always had a perfect cholestrol levels til I entered premenopause and the hormones went whack- shot up so high it damaged my eyes and now it is back down to 207- will work naturally to get it lower...that is just one of the reasons I am trying to avoid the AI's..the natural effects of meno are tough on us...I don't need them magnified unless I can avoid. I will try the vitamin E though! I am so embarrassed - I could not figure out why! My mind was racing...never dawned on me:)
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Oh the things we have learned!!!!
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