About-to-Start-Hormones Group

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  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    Has anyone else had really dry eyes since starting hormones?  Mine are wretched lately!  I saw my opthamologist yesterday and he said he's seen some badly scratched corneas on patients going through rads, even though the  rad docs don't seem to think the rads cause dry eyes... ?!

     I had problems last Sept. during rads, but I'm still having problems 2 and 1/2 months later and now wonder if it's from the Arimidex, or if I'm stuck with these withered up little peepers.

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  • Wndalina
    Wndalina Posts: 98
    edited November 2008

    You guys are too funny!  I actually called the doc today asking if I could start Effexor now.  I plan on starting tamoxifin Dec 26th ( we are on vacation until the 20th and don't feel I want to take a chance at hurting anyones Xmas if I were to react quickly - since there is always a chance a few days won't hurt).

    I will see what he says.  My sister works at medco and I asked about the dosages and generic.  She said the doc should decide the dosage most likely the lower one to start.  She said there is no difference between the generic and name brand.  In some meds there might be a color or bonding agent, but other than that - they are same.  About 1% of people might react to those, in which case switching to the name brand might be needed.  So I would think you would be good starting with the generic.  In fact some companies actually dispense the name brand and only charge the generic cost in many cases because of the cost of production.  Interesting huh?  Hospitals dispense generics too...  I will start with the generic as well.

    Doc did tell me I can still get pregnant on Tamoxifin, so to be extra careful and clearly birth control pills are out.  Hubby sighed.  He did say my version of menopause when I get there will be VERY minimal if at all - although some rare cases get to go through the SE's twice.  I am 38 + 5 years of TX - perfect age to start menopause for real - LUCKY me!  My SE"s now should be more minimal though than if I were mid-40's.  So less now but a double dose - oh lucky me!

    Thanks again folks!

    Wendy

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  • dancemom23
    dancemom23 Posts: 56
    edited November 2008

    My onc also mentioned how important it is to not get pregnant while taking Tamox and to use extra precaution.  I told her it was OK because I had a tubal - her response was that it does not matter, nothing is 100% effective and I still should take extra precautions.  Um - the tubal was 13 years (and two weeks Wink) ago - I think if it didn't work, I would have figured it out by now (and not been happy about it). 

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  • Wndalina
    Wndalina Posts: 98
    edited November 2008

    Chris - that is too funny!!!

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  • Springtime
    Springtime Posts: 5,355
    edited November 2008

    Chris LOL!!! (or uhh duh??)

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  • bluegems
    bluegems Posts: 733
    edited November 2008

    Given a bottle of Effexor today, and it is most welcome. She said it didn't matter what time of day I took it. I'm taking the tamoxifen at night (great suggestion from you ladies). Any recommendations?

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  • revkat
    revkat Posts: 763
    edited November 2008

    Effexor makes some folks sleepy and some folks wired (and some don't feel either!) so you may just have to experiment. I take my tamox in 2 doses -- am and pm, and my Effexor in the am.

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  • Wndalina
    Wndalina Posts: 98
    edited November 2008

    Ahhh - good thought.  I pick up my script tomorrow for effexor - couldn't get there today....  Man I don't think of these things.  I would just get it and pop it and then forget it for three days. HAHA!

    My sister bought me one of those little prescription things that has days of the week on it - who would have thought at 38 I would need that!  OH well - it is what it is - right?

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  • Makratz
    Makratz Posts: 12,678
    edited November 2008

       http://www.armyofwomen.org/

          Dr. Susan Love is looking for volunteers as seen on  Good Morning America.  Check out the link and please sign up as a volunteer.  Tell your friends, everyone you know!  Together we can find a cure for breast cancer.  Check it out.  It only takes a couple minutes to sign up. 

    Spread the word!

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  • Springtime
    Springtime Posts: 5,355
    edited November 2008

    The URL looks broken above, maybe this one will come through?

    http://www.armyofwomen.org/ 

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  • kerry_lamb
    kerry_lamb Posts: 778
    edited November 2008
    Girls, I had the regular melt-downs through chemo, and now with Femara, but I also have the pleasure of the broken ankles/foot bones and hand/wrist bones. For years (probably decades) I have wondered why 'ladies of a certain age' wear those sleeveless quilted thingos. Well, now that I AM a 'lady of a certain age', on Femara, I am running a serious eye over those sleeveless numbers in the cataloguesEmbarassed
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  • otter
    otter Posts: 6,099
    edited November 2008

    Hi, all--

    I'm just dropping in to say hello.  I actually started on Arimidex in June '08, so I'm not "about-to-start"--I'm already onboard.

    I especially wanted to say hi to Tigwin and Angie and NancyD, who are old pals from chemo.

    Most of my experience with Arimidex has been summed up nicely by Nancy:  old natural-menopause hotflashes resurrected but really not severe; old wear-and-tear osteoarthritis somewhat more annoying, but not so much as to be debilitating.

    KAK, I thought it was interesting how differently your doc feels about AI's and osteoporosis, compared with my onco.  My onco really, really did not want me on Tamoxifen.  There is evidence from the ATAC trial saying that Arimidex works better than Tamoxifen as a first-time estrogen blocker for post-meno women.  Apparently, that is especially true for those of us with ER+ PR- tumors.

    My onco said that, in her experience, the SE's with Tamoxifen were far worse than those with the AI's.  And, as far as bone thinning was concerned, she thought it was so treatable as to be a non-issue.  "Osteoporosis is very, very treatable," she said.  "It develops slowly, so we don't have to be in a hurry ... and we can actually do something about it," in contrast to some of the SE's of Tamoxifen.

    So, even though my baseline DEXA showed very early osteopenia, she didn't back off from her recommendation of Arimidex, along with periodic DEXA monitoring, weight-bearing exercise, and Ca/Vit D supplements.  I should note that I'm being treated at an NCI-designated Comprehensive Cancer Center, so I'm pretty confident in my onco's advice (for me, at least).  The center also has a large "Osteoporosis Prevention and Treatment Clinic," in case I need closer monitoring.

    Wendy, I swallowed my pride and started using a "daily pill-minder" about 20 years ago, when I was put on blood pressure medication(s).  Knowing I have that pill-minder gives me the courage to rip up those stupid Arimidex blister packs that I hate so much.  (My pharmacist told me yesterday that their wholesale supplier is no longer shipping Arimidex in blister packs--they've switched back to bottles.  Whew!)

    otter 

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  • Wndalina
    Wndalina Posts: 98
    edited November 2008

    Otter - thanks! :-)

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  • KAK
    KAK Posts: 1,679
    edited December 2008

    Hi, all.  Hope everyone had a good thanksgiving.

    I apologize in advance if I don't catch up with everyone right now.

    Otter, thanks for your post.  It's important for everyone to hear all sides of these issues so we can each make an informed decision about stuff.  I'm sure that, like each of us, med onc's have different experiences as well, and have to base their advice on that experience.  My med onc advised me from her experience, which was that most of her patients had done well, whether they were on tamoxifen or Arimidex, & it was her advice to stay away from aromatase inhibitors when I already had bone thinning.

    I know several women who've taken tamox. for 5 years without problems & one woman who developed some uterine wall changes at the end of the 5 years, but no cancer or anything like that.  She is in her late sixties & she had had issues with a prolapsed bladder, so her uterus started to drop as she was finishing her 5 years on tamoxifen & her gyn & urologist did some kind of sling lift surgery for the bladder & a hysterectomy to remove the uterus because it was pressing on the bladder.  She's fine & she does not regret taking the tamoxifen because she's had no recurrence of BC.

    Ultimately, I'm the one who had to decide what to take (& even whether to take anything).  I read up on research about tam & AI's & compared the SE's.  I have a very different take than your med onc on the treatability of bone thinning once it gets started, from my work as a PT, as well as from witnessing the severity of my mom's osteoporosis.  So, with all that, plus the info I got from research & from the women I know, I feel good about deciding to take the tamoxifen.  But that's my decision.  If my med onc had told me that her patients had lots of problems with tamoxifen, I would certainly have taken that into consideration & maybe decided on a different plan. 

    No matter what we take anyway, we all have to be watchful & advocate for ourselves & make sure we keep an eye on our bone density & get our pap smears & pelvic exams, etc., etc., ad nauseum!!!

    I had to laugh about the pill cassette issue!  I almost got one, but then I was able to stop a couple of meds, so I'm down to just two.  But I did have to put some pills in a pillbox to carry with me in my purse, because more than once I've run out of the house in the morning without taking my morning doses & then didn't have any with me when I remembered an hour later that I forgot!

    Oooohhhhh, the brain does wear out, doesn't it?

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  • KAK
    KAK Posts: 1,679
    edited December 2008

    Oh, ladies, there are some good posts on tamoxifen on the "Tamoxifen for gals who have not had chemo" thread.  Some women there who've finished their 5 years, etc.

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  • EWB
    EWB Posts: 2,927
    edited December 2008

    I find the pill reminders useful because I have some for AM and some for PM---it gets to be so automatic that I can't remember whether or not I took any.  At least w/ the reminders I know.

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  • ICanDoThis
    ICanDoThis Posts: 1,473
    edited December 2008

    I wanted to ask a question specifically for those of us who were osteopenic before BC diagnosis. I had my first DEXA scan when I was starting menopause at 57. Yeah - ugh. 46 years is too long for Aunt Flo. I was diagnosed with osteoporosis, went on Fosamax, which made my tummy ache, but I lost a great-grandmother and great aunt to broken hips, so I was a good girl.

    When I was diagnosed with BC, I talked a lot to the onc about the side effects of AIs vs tamox - my current oncologist is supporting me on at least 2 years of tamox, but she does think AIs are better. They repeated the DEXA, and it came back with no osteoporosis.  So I went to an endocrinologist - I was confused. The X-rays she took revealed scoliosis - evidently, the first scan just skimmed the edge of my spine. She thinks that my bones never firmed up properly in my 20s, because I was an active alcoholic - nobody ever told me about that side effect to my drinking. She likes me being on tamoxifen, and took me off the Fosamax, because tamox is good for bone strength. My gynecologist also recommended that I come off the Fosamax as long as I'm on tamox. She likes post-menopausal patients on tamoxifen - supports good estrogen levels.

    My question is, have any of y'all discussed the tamox vs AI question with any doctors other than your oncologist? Both my doctors made it really clear that they would not interfere with my cancer treatment, but that they are really glad I'm on the treatment I'm on.

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  • nancy258
    nancy258 Posts: 162
    edited December 2008

    Took my first tamox this morning.  Four hours later I'm feeling kinda weird and dizzy and queasy.  Is this normal?

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  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    Hi Nancy258,

    Not sure if it's normal or not.  That didn't happen to me.  I take mine at bedtime so if I'm queasy, I sleep through it.  I have been on Tamox for 5 weeks now.  Every night I have hot flashes and night sweats.  Sometimes I have hot flashes in the day too.  My onc said the night sweats are a sign that my body is metabolizing the Tamox.  The sweats are a result of  estrogen.  Maybe I can sweat the extra pounds off that I seem to be carrying around!

    Best if luck to you with the Tamox.  Perhaps you feel that way because you were anxious about starting???   Go take a nap!

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  • nancy258
    nancy258 Posts: 162
    edited December 2008

    Maybe the anxiety has something to do with it.  I'm taking half dose in AM and half PM for the first couple weeks til I get use to it, then I'll try taking full 20mg at night.  I just had some lunch and the queasiness is better.  So I may need to eat more while taking the tamoxifen.  So it's good what you're telling me about the sweating at night.  I'll need to sweat the extra pounds off if I'm eating more to keep the queasiness away!  Ha, ha. 

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  • bluegems
    bluegems Posts: 733
    edited December 2008

    I've been on the tamox for  6 weeks now. My onc gave me Effexor for the flashes since they were waking me up several times a night. Low dose, and it'll take another week before it really starts kicking in. I take the tamox at night (hint from the lovely ladies in this room) and the Effexor in the morning. So far, so good.

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  • KAK
    KAK Posts: 1,679
    edited December 2008

    Sue, one of the gynecologists here that I know from work likes Tamoxifen for osteoporosis because it is in the same class of drugs as Evista, an osteoporosis drug that has been found to prevent invasive BC.  They are both SERMs, which stands for selective estrogen receptor modulators, which means that they keep estrogen away from breast tissue & let it get at bones.  [AI's prevent the body from making & circulating any estrogren at all, which is actually a concept I do not like or think is good for us if we have a choice, but that's just me.]  Any gynecologist will tell you that the best substance for preventing & treating osteoporosis is estrogen, so SERM's are great because they get the body to direct its estrogen at the bones specifically, where it can work its magic.  I think SERM's have a lot of potential for bones & breasts & I think there will be more developed in the coming years.

    Hope this helps.  Kathi

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  • Wndalina
    Wndalina Posts: 98
    edited December 2008

    Hi gang - I started Effexor Sunday.  Felt a little racy.  Slept well until last night I couldnt stop my mind from racing that time.  I know it will take 2 weeks or so to really balance me out.  A little dizzy day 1 too, but not since then.  I am keeping an open mind about any side effects over the next week or so though.  I will start Tamox on the 26th.

    Very tired now from not sleeping well last night - we will see tonight brings....  YAWN..

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  • KAK
    KAK Posts: 1,679
    edited December 2008

    Wendy, I've had to experiment a bit with the time of day I take the Effexor.  I've been a bit "racy" too, but I feel so much better overall, I don't care!  LOL

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  • EWB
    EWB Posts: 2,927
    edited December 2008

    Kathi-  What is the thinking if there are mets to the bone?

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  • ICanDoThis
    ICanDoThis Posts: 1,473
    edited December 2008

    EWB - I think bone mets are a whole 'nother kettle of fish.

    I asked the question in the context of "It looks like I caught a lazy cancer early, and I'm not all that likely to get a recurrence, but the thought of not taking anything scares the crap out of me, but I don't want to kill myself with side effects either."

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  • KAK
    KAK Posts: 1,679
    edited December 2008

    EWB, bone mets are, like Sue says, a whole nuther thing, but in fact, according to info on this site, hormone therapy, like tamoxifen & aromatase inhibitors, is often the treatment of choice for mets, too.  Osteoporosis drugs like the bisphosphonates (Zometa, Fosamax) are helpful with bone mets specifically, so I guess really some of the overall issues are the same.  Check out the Treatment & Recurrent/Metastatic sections on the site for more info.

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  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    Hi Everyone,

    Glad to see your still checking in.  I wanted to check in with everyone to see how they are doing with Tamox.  I have been on it for 5 weeks now.  I have night sweats and hot flashes ALL night so I'm not sleeping, which means I'm cranky!  I have gained 7 pounds right at my waist, which bums me out.  I get plenty of excerise so I can't explain the extra weight.  I also seem really depressed on some days and then fine on others.  Some days I could cry all day, others, like today, I feel great. (Which is a good thing since my baby turned 10 today!!)  How's everybody else holding up?

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  • artsee
    artsee Posts: 1,576
    edited December 2008
    We can contribute weight gain especially around the middle to the drugs. I've been on an AI since the middle of May and have NEVER had a mushroom over my pants the way I do now!Tongue out
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  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    artsee,

    That's a great comparison!  A mushroom, I love it.  I have never had anything around my waist so it's very annoying!  Thanks for making me laugh.

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