About-to-Start-Hormones Group

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  • NancyD
    NancyD Posts: 3,562
    edited November 2008

    Hi ladies, I just wanted to add my latest - my arthritis pain is back. The steroids during chemo did a great job of keeping it at bay, but now they've worn off and I'm feeling my old twinges. The Arimidex will probably exacerbate it over time, at least that's what I'm told. So far, it's just my knees and feet, and is limited to when I first get up in the morning.

    It doesn't help that we had a chilly and wet end to last week. Any change in weather, good to bad or bad to good, seems to send it to a higher pain level. I haven't taken anything for it, but the idea that it could get worse has me thinking what I could do. I'm thinking I might just start with Alleve and see how that goes on the days it flares. Normal days are well within the tolerable-without-meds limit. Flare days, it gets annoying.

    I'm also sporadically taking calcium and B-complex. I'm not very good at taking supplements regularly. I don't know why. Prescribed meds, I'm fine, but if someone just says, "You might benefit from this," I just can't seem to make it a priority to remember. So I take them when I remember...about two to three times a week.

    I haven't taken any anti-anxiety meds since my surgery. Even then, I was only taking an occasional Valium. I don't feel the need for anything else. The occasional sadness I feel is justified, I think, and not anything to be covered up. It isn't debilitating. I'm very much moving on with my life and making plans for when my finances won't be so tied up in my health care. (Hm-m-m...vacation or new boobs?)

    Angie, good to see you here. The SE's I've felt are all things I had before BC. Some, like the arthritis, went into remission during the chemo. I have a few more hot flashes than I did before starting the Arimidex. In my natural menopause, they had settled down to only a few a week. Now I have a few a day, again. But they're manageable. If the other SE's are only as bad as they were before bc, I will be fine with it.

  • shari1232
    shari1232 Posts: 161
    edited November 2008

    Almost one bottle o'T down, and here's what I've got...  Started my period over a full week early (not me, never)... started with huge flow (usually started with barely any flow for first few days) and have bled like a stuck pig for the entire time -- now 3 full days.  Blew out of doubled up super tampons.  It's unreal.

  • Makratz
    Makratz Posts: 12,678
    edited November 2008

    Shari1232,

    That's what I'm afraid of!  I have been that way for a couple years now, ever since I turned 40.  I joke with my friends that I will soon need to use paper towel rolls for tampons.  I am due for my period towrds the end of this week.  Another friend of mine who is on Tamox also says the same thing: heavier periods.  Oh god!!!!   Good luck with yours.  Hopefully as our bodys adjust, the flow will slow..........

  • KAK
    KAK Posts: 1,679
    edited November 2008

    Tracy, welcome, have a great vacation & good for you for participating in a clinical trial.  I think that's great.  I tried to get into a couple because I believe in supporting research but so far haven't been qualified or the timing is wrong, etc., etc.

    My PCP had me take three days to taper down off the Zoloft, then had me do a week on a small dose of Effexor & the next week on 75mg of it, which is the smallest therapeutic dose.  I felt the ol' depressive paralysis coming back tho' by the end of last week, so they told me I could double the Effexor.  I understand that 150mg is more the usual dose anyway.

    Nancy, I've noticed more of my ol' arthritis kicking up lately, too, so much so that my hips & back were waking me up at night.  I'm not sure what to attribute it to either, although I'm inclined to agree with you that it's more weather related & also due to my trying to take longer & longer walks with the dog.  So, finally, I went back to our old remedy of Tylenol PM last night & felt good.  Would have slept the whole night through except my dog woke me up at 3AM to go out because he had diarrhea from eating some of mom's leftover cheese sandwich!!

    Oh, Shari & Makraz, you poor girls!  Menopause has its virtues, that's for sure! 

    I have noticed some vaginal discharge, very light, nothing earth-shattering, and I read that this is a common SE with Tamoxifen.  Otherwise, I've been fine.  Maybe a few more hot flashes, but then again, it's that time of year when I don't know how to dress.  So, I start out with a sweater on because the morning is cold, but then when I'm inside, I'm too hot in a sweater, so have to take it off.  Layers are the answer, I guess!

    Kathi

  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    Kathi - Yeah, my arthritis is not that happy either...hip, back, knee, and feet, especially at night.  And, then fingers and toes in the AM.  Since I'm not working out lately, it can only be the Arimidax.  I take naproxin and somethimes Advil PM at night, but my blood work showed some possible kidney problems.  Too much of a good thing with all the meds?

    I hope poopy dog made it outside before the sandwich came through!!

    As for clothing, I have dozens and dozens of those heavy "what not to wear" teacher sweaters that I'll never put on again!  The best I can do is a very light cardigan or blouse, with a sleeveless top underneath...when the kids go to their specials, I whip off the blouse and open the windows!  I never thought I'd be wearing sleeveless tops in Nov.!!!  As for my teacher sweaters - Ebay, here I come!!

    Had the transvaginal US yesterday.  Not at all painful, she put jell on it first.  Just a bit strange. Should hear this morning.  I'm sure everything's OK, so I'm only a bit anxious.  I've always been scared to death about ovarian cancer - never gave bc a second thought.  Go figure.

    Susan

  • dancemom23
    dancemom23 Posts: 56
    edited November 2008

    Shari & Makraz, not exactly what I wanted to hear about the periods - I'm due next week, so I'll have to let you know, but since I only started the Tamox last week, maybe not yet?  I used to be like that when I was a teen, but it has all calmed down as I have aged - I hope it doesn't revert back to all that...yuck.

  • KAK
    KAK Posts: 1,679
    edited November 2008

    Susan, I'd be scared too.  My aunt had ovarian cancer -- and survived!  Let us know when you hear the results.  Kathi

  • PSK07
    PSK07 Posts: 781
    edited November 2008

    I'm headed to my internist today to change from Zoloft to ... something else. Probably Effexor, if there's a generic.

    I don't know how my cycles could get any worse than what they are today. The oncologist said they'd probably get lighter. Maybe she just said that to make me feel better??

  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    Kathi,

    They couldn't see my ovaries (not uncommon for post men. women I was told) but nothing showed up, except a cyst on my cervix.  That's not where the pains are, so gyno said to come in for another pap. Hmmm, I may opt to have the whole shooting match out.  That way, I'll know what it isn't when I 'm in pain!

  • Skye64
    Skye64 Posts: 109
    edited November 2008

    hi all,

    I haven`t posted a while, cause I was on vaccation with the german priest and 18 other women. We have been in Santa Fe. It was really nice....needed some time for me.....In the meanwhile I had a bone scan and a abdomen ultrasound. Everything is fine, but I still have pain in my ribs. Do not know what I can do now??? Any adviice?

    I am still taking the Tamoxifen...I am doing good with 10mg...barely SE. Now I am trying to take 15 mg every second day....Now I have more SE. like insomnia and and hot flushes. I still hope my body will adapt to it.....

  • Makratz
    Makratz Posts: 12,678
    edited November 2008

    Hi Everyone,

     Found this on another thread and though you'd all like it.  I know it sucks to have to do this everyday and deal with the SE's but it's really worth it.  Here it is:

    An interesting article on Tamoxifen:

     Breast Cancer News

    Poor Compliance with Tamoxifen Leads to Higher Recurrence Rates

    Researchers from St. Luke's-Roosevelt Hospital in New York have reported that 37% of women with estrogen receptor-positive localized breast cancer are not compliant with prescribed tamoxifen (Nolvadex®), resulting in a higher rate of recurrent disease. The details of this study were published in the October, 2008 issue of the American Journal of Surgery.[1]

    A majority of breast cancers are estrogen receptor-positive (ER-positive), meaning they are stimulated to grow by the female hormone estrogen. Depriving ER-positive breast cancers of estrogen can slow their growth. Tamoxifen is an anti-estrogen that has long been the mainstay of hormone therapy for breast cancer. Several randomized studies have shown that treatment with tamoxifen for five or more years significantly reduces the risk of breast cancer recurrence.

    Despite this proven efficacy, some studies have shown that compliance to tamoxifen is less than optimal. In one U.S. study of women over the age of 65, compliance to tamoxifen for five years was 69%.[2] A Swiss study revealed a similar compliance rate of 67%.[3]

    In the current study, researchers compared the outcomes of breast cancer patients who were compliant to recommended radiation, chemotherapy, or hormonal therapy (tamoxifen) with the outcomes of those who were not compliant. They wanted to determine first, what the level of compliance was and second, the impact this compliance had on recurrence rates.

    The researchers found that 7% of patients were not compliant with recommended chemotherapy treatment and 4% of patients were not compliant with the recommended radiation treatment. In startling contrast, 37% of patients did not comply with the recommended adjuvant hormonal therapy treatment of tamoxifen. Noncompliance with tamoxifen was associated with an 87% survival, compared with 96% for compliant women. In other words, women who are compliant with hormonal therapy are significantly more likely to survive longer without a recurrence.

    The researchers concluded that noncompliance with tamoxifen is common and results in significantly increased risk of recurrence. More study is needed into the reasons for noncompliance. In this particular study, older age was associated with noncompliance to radiation and chemotherapy, but younger women tended to be noncompliant with tamoxifen. As physicians and researchers gain an understanding of why patients fail to comply with the prescribed hormonal therapy regimen, they may be able to address these issues in order to improve compliance and as a result, improve survival rates.

    References:


    [1] Ma AMT, Barone J, Wallis AE, et al. Noncompliance with adjuvant radiation, chemotherapy, or hormonal therapy in breast cancer patients. American Journal of Surgery. 2008;196:500-504.

    [2] Lash TL, Fox MP, Westrup JC, et al. Adherence to tamoxifen over the five-year course. Breast Cancer Research Treatment. 2006;00:215-220.

    [3] Guth U, huang DJ, Schotzau A, et al. Target and reality of adjuvant endocrine therapy in postmeopausal patients with invasive breast cancer. British Journal of Cancer. 2008;99:428-433.

  • Springtime
    Springtime Posts: 5,355
    edited November 2008

    Wow, thank you. That is excellent to know!!!

    Spring.

  • nancy258
    nancy258 Posts: 162
    edited November 2008

    Just came back from the oncologist.  He gave me the prescription for Tamoxifen which he says I can fill at my leisure and start whenever I want.  He explained all the possible side effects, but says they are usually milder in pre-menopausal women.  He said it could make my periods irregular.  Didn't mention the heavier part, hope that doesn't happen, cause I'll be with Makraz using the paper towel rolls, ha!  Other precautions he told me to let him know if I planned any elective surgery or long trips in a car or plane as he may take me off it temporarily to prevent clotting.

    I'll probably fill it through mail order so I guess I won't start til after Thanksgiving.

    Good point on the compliance Makraz.  I was always so bad taking vitamins and calcium supplements, so when I had to start taking blood pressure medicine 2 years ago, my husband bought me one of those Sunday through Saturday pill dispensers as a stocking stuffer.  Funny enough I had bought him one for his stocking also.  We decided we were officially old now that we have them and are using them!  Ha!  Anyway, it really works.  I will still occasionally forget to take a pill, but I can see exactly what I forgot and it's a reminder seeing that forgotten pill in there all week that I have to stick with my pill routine at morning coffee and dinner.

  • pattyk
    pattyk Posts: 25
    edited November 2008

    Hi again everyone,

    It's been a while, but I have been reading all my rads girls posts and finally got around to writing.  I saw the rad oncologist and the med onc on Tuesday and my burns have healed enough to satisfy them.  My med onc gave me the go ahead on starting the Arimidex.  I've taken two doses so far and can't see any side effects..yet.  Hopefully it will stay that way.  Has anyone been on Arimidex for a longer period of time, and if so, how is it going?

  • NancyD
    NancyD Posts: 3,562
    edited November 2008

    pattyk, I've been on Arimidex for two months now. So far, I have had an increase in my hot flashes from a few a week back up to a few a day (similar to earlier in my menopause), and my previous areas of arthritis have come back (knees, feet) but that may also be because 1) I'm off the steroids I took through chemo, 2) I'm getting older and the winter is setting in.

  • angie27
    angie27 Posts: 863
    edited November 2008

    Hi, Nancy its good to see you here also.

    Well, we have come a long way together, I will be starting my Femara this weekend, hoping for minimal side effects.

  • pattyk
    pattyk Posts: 25
    edited November 2008

    Hi NancyD,

    Thanks for your response.  I had a few aches and pains before, osteoarthritis, and seem to have the same amount now too.  Here's hoping our SE's never get any worse.  Regarding the hot flashes I have been telling people I haven't been cold since around 1999!  I think I can tolerate the hot flashes.

    I want to thank you for all your postings.  They are informative, sensitive and always helpful.  It's nice to see one of my Sept. rads gals on this thread too.

  • KAK
    KAK Posts: 1,679
    edited November 2008

    Hi, everyone.  Thanks for that info, Makraz.  Pretty simple -- if we don't take the stuff, it won't work!

    I have been in a ditch for the last week or so with this switch from zoloft to effexor.  I'm hoping that I am now finally on what will be a therapeutic dose of the stuff.  I guess the usual protocol is to taper up to the right dose, but these past several days have been reeeeeeeally tough.  It's been like I wasn't on an antidepressant at all, which is not a good thing at a time like this.  Finally, today, I started to feel like maybe the clouds were starting to lift again (anyone who suffers from depression will know just what I'm talking about!!), so I'll hang in there.

    Meanwhile, I haven't had ANY daytime hot flashes ever since I figured out not to dress for the actual weather, but to dress as if it were about 20 degrees warmer (Fahrenreit, for you Canadians et al).  It's been cold here this week, around freezing, but if I wear a sweater, once I get inside & take off my jacket, I'm dying in the sweater!  So, I'm wearing long-sleeved T-shirts & blouses & things that are light weight & have sleeves I can roll up if needed.  LOL   I'll be saving on my heating bills this winter, let me tell you!  Oh, pattyk, BTW, I tell people I haven't been able to wear a turtleneck in 4 years!  Tongue out

    Kathi

  • bee5467
    bee5467 Posts: 112
    edited November 2008

    Kathi -- Do you mind sharing your dosage?  I'm on 150 mg/day, just upped last week from 75.  Still down lots of the time. 

  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    Kathi - I feel like a fool going back up to the attic to find my short sleeve t shirts, but OMG, I have multiple melt downs during the day and forget those wooly sweaters!!  The kids will tell me my forehead is crying!  Don't you love it!?

    Susan

  • shari1232
    shari1232 Posts: 161
    edited November 2008

    Hahahahha at the crying forehead!!!!!! Tongue out

    I guess the best news is that my extremely heavy flow that made me feel like I needed transfusions eventually DID stop without intervention.  I hope next month is better.

    I don't get the part about Tamox NOT causing early menopause.  If it makes periods irregular and hot flashes and stuff, then aren't we thrown into meno, or is it just temporary?  I guess it doesn't really matter, and everyone's SEs and reactions are different anyhow...

    Where DID this tire around my waist come from?

    Blah.

  • Makratz
    Makratz Posts: 12,678
    edited November 2008

    I've been extremely warm too.  Not bad since I live in New England and it hasn't been above 25 degrees this week. 

    I was supposed to get my period this past Wednesday and haven't yet.   I realize it's only 2 days late but I was always like clockwork.  Has anyone stopped getting their periods while on Tamox?  Wouldn't that be nice!

    Shari1232, I have the same tire!  Never had any fat on my waist in my life and suddenly, it's there!  I keep exercising and it keeps showing up!  I love getting older!

    Hope everyone has a great weekend!

  • KAK
    KAK Posts: 1,679
    edited November 2008

    Listen, ladies, we could start a Tire Club....

    Bee, I'm now on 150mg of Effexor, but my doc reminded me that it can take 3-6 weeks for even the right dosage to kick in to full effect & build up your stores of seratonin.  See if you can hang in for another week or so & check in with yourself again.  Some of my personal symptom cues are (1) racing thoughts when I'm trying to get to sleep, (2) feeling irritable & "blame-y" toward everyone, (3) the "blahs" where I can't get out of my own way to accomplish anything, even stuff I like, and (4) my version of "suicide ideation," which is just moaning to myself "Oh, I wish this would all just STOP!".   If I notice that any of those things has toned down at all, or that I'm catching myself at one of them more quickly & even changing my tune, then I know I'm starting to feel better.  It can be subtle, as you know.  You don't just instantly feel fab.  You might still feel pretty crappy, in fact, except that you don't feel paralyzed & unable to figure out how to make yourself feel better.

    Good luck, bee.  PM me if you want.

    Kathi

  • PSK07
    PSK07 Posts: 781
    edited November 2008

    Well, I got the scrip for Effexor generic. Will start by taking part of one pill in the morning and work my way up to 1 in the morning and 1 at night.  The Effexor XR is on my formulary, but it would be at least $30/month. If push comes to shove, I will do that, but we decided to go with the lower-cost option first. I have to taper down from the Zoloft first. That could take 3 weeks, then taper up to effective dose of Effexor, then start Tamoxifen. Looks like January. Happy new year?

    The doc told me that Tamox does not put us into menopause...some of the SEs are menopause-like, but it doesn't affect fertility. Don't get complacent, she said.  Complacent is no longer in my vocabulary.

  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    I've had a poochy tummy for years, it seems.  But, now I can grab on to it and shake it like an apron right under my belly button (or is that TMI?) 

     Probably because I'm not doing ballet or Pilates class right now.  Or even an occasional sit-up! 

     I'll really be doomed if the Arimidex makes it worse!  It'll be a Mack truck spare tire, not just a sub-compact!!

  • NancyD
    NancyD Posts: 3,562
    edited November 2008

    mzmiller, those are my new breasts!  I'm not anxious to lose my "apron" until the PS cuts it off doing a DIEP!

  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    Too funny!  I have to say, I was hoping for a mast so that I could get the tummy tuck!  Not so much for the boobs, I never had much anyway, but I'd be thrilled to see my toes when I stand up straight!

  • KAK
    KAK Posts: 1,679
    edited November 2008

    Here we are, ladies!

  • EWB
    EWB Posts: 2,927
    edited November 2008

    Some days KAK, some days

  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    Oh, those pictures look so good!!  Especially the middle one!  If I could just do that in the middle of the night when I can't get those covers off fast enough!

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