About-to-Start-Hormones Group

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  • pclarky
    pclarky Posts: 37
    edited October 2008

    Hello.  Trying to figure out how to add my history at the bottom like I see on most posts!  Diagnosed with DCIS, high grade 3, 1.5 cm early July 2008.  Finished 33 rads with 7 boosts 3 weeks ago, getting ready to take my first 20mg tamoxifen this morning.  Halloween seemed like the right day to start, as it scares me so!  Wanted to say how much this board has helped me, comforted me, educated me and supported me since July. Thanks to all!

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  • shari1232
    shari1232 Posts: 161
    edited October 2008
    Hey, pclarky!  Congrats for getting through it all!  When you enter your diagnosis information and say you want it public, then it will display on the bottom.  Great idea to start on Halloween!  What the heck, right?!  Today's my second day.  No freaking out so far... Tongue out
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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Thanks, Joanne!  Nice to hear from you.  There's a thread under "Just Diagnosed" called "Nurses with BC" that has a bunch of us healthcare folks on it, if you'd like to visit.  I'm sorry you are dealing with a recurrence.  Crap, poop, darn, heck, etc., etc.  (Trying to keep my language clean!)

    Also, yes, it's good to remind everyone that you have to make sure you're keeping in touch with your doc when you start any new drug, perhaps especially an antidepressant.

    Msdede, your PCP might be the best person to prescribe something as far as keeping an eye on you; just make sure you get one that's not an SSRI per my previous post.  Even if you still have trouble sleeping once you start it, you won't feel as anxious about it.  Zoloft has really helped me feel like I can cope through the last several years & so far, since I switched to Effexor this week with the Tamoxifen, I feel fine, no difference.  Hope that helps.

    Also, in honor of Halloween, I'm reposting this silly thing I made when I started rads, "The Boob that Glows in the Dark!"   Oooooooh, spooky!!!

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  • shari1232
    shari1232 Posts: 161
    edited October 2008

    K,

    You're SCARY good at them graphics, girl!

    Surprised

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  • KAK
    KAK Posts: 1,679
    edited October 2008

    Thanks, Shari!  What's really scary is how much time I can fritter way drawing stuff to make animations.  Brings out my inner 11-year-old. . . . Kathi

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  • elisabeth
    elisabeth Posts: 255
    edited October 2008

    Hi ladies.  Sorry I am jumping into the middle of this, but I didn't see this "group" until today.  I finished my rads in September and am now trying to take Arimidex.  I am having a very hard time and am constantly on the verge of tears.  I am finding this harder than the radiation.  I was wondering why so many of you are taking tamoxifen instead of AI's?  My docs have prescribed the AI even though I have osteopenia and osteoarthritis.  I also wonder if any of you have considered not taking the hormone therapy?  Do any of you have any experience with mistletoe?  Lastly, does anyone else feel like your damned if you do and damned if you don't - in regard to taking or not the hormone therapy.

    Thanks so much.  E 

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  • Ela73484
    Ela73484 Posts: 12
    edited November 2008

    Hi Ladies,

    I am DONE with my rads.  What an emotional day it has been.  I hope everyone has a Happy Halloween.

    Ela 

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  • familyroks
    familyroks Posts: 575
    edited October 2008

    Elisabeth - I'm sorry you are having such a hard time.  I believe the ladies taking Tamoxifen are pre-menopausal.  The AI's are for the post-menopausal group.  At least that is my understanding.  I am on Arimidex as chemo put me into early menopause.

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  • Anonymous
    Anonymous Posts: 1,376
    edited November 2008

    I was told on this thread that Tamoxifen can be prescribed for pre or post menopausal women. That's the way I feel Elizabeth - I'm going when I can to talk about just doing 10mg. daily. From that one study it was found 10mg is just as effective as 20mg. with less side-effects

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  • OG56
    OG56 Posts: 897
    edited November 2008

    Elizabeth, anyone can take Tamoxifen but I think it was found that post-meno women gain more protection from the AL's . If you have osteopenia then you should discuss taking one of the medications for that, because AL's can make it worse. Tamox I think actually protects bones.And yes in many instances I feel damed if I do and damned if I don't. I am taking Arimidex since July and have minimal side effects (thank goodness)! hope the same for you. I did not consider for more than a minute not taking it because I never want to go through this again. But I do cry alot!

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  • elisabeth
    elisabeth Posts: 255
    edited November 2008

    Wow - thank you all so much for the great responses.  I can't tell you how much I appreciate them.  I often feel alone in this battle because I always have so many questions, but as is often the case, I can't get them answered or even asked because the doctors are so busy.  I was so overwhelmed yesterday at my med onc appointment that I couldn't comprehend or take in everything he was saying.  My medical onc said I should try to stay on the Arimidex until end of Jan. then we'll reevaluate.  I just did a dexa scan and he was aware of all of that.  Most of my docs (I rally like all of them) think that there are more side effects with tamox.  

    Do any of you have any stats on the percentage of risk for particular cancer profiles to not take the hormones?  I know what the cure rate stats are, but still don't understand or have the recurrence stats info.  I know it is basically a crap shoot anyhow, but it is just another question I have.

    Sorry this is so long.  Omaha Girl - do you think you cry alot because of Arimidex or because of the whole situation?

    Thanks again!!!!!!!!!!!!!!!!!!!!!! 

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  • OG56
    OG56 Posts: 897
    edited November 2008

    I'm not sure, but I think it is because of the whole situation, I don't think I have depression, just sad over having BC and how scary it all can be. I really do feel better coming here I have learned so much and there is a thread about percentages, somebody cleared that all up but I cannot remember where it is does anybody know the link? I finally understood after reading that, because I am so mathmatically challenged LOL.

    I think it is under Hormone Therapy though.

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Elisabeth, I'm surprised that your onc would put you on AI's.  I'm post-menopausal & osteopenic & my med onc said she would not put me on AI's because of the osteopenia & that tamoxifen made a lot of sense for me because it apparently has been shown to protect bones as well as Evista does, which is an osteoporosis drug.  If you can get a second opinion on this, I would.  Osteopenia & osteoporosis are nothing to mess with.  At the very least, if you stick with an AI, you need to be on fosamax or another osteoporosis med to stave off worsening bone loss. 

    Here's a link to a research summary:

    http://www.medpagetoday.com/Endocrinology/Osteoporosis/pda/3460

    This study states that Arimidex caused a 6-7% loss in bone mineral density for women with borderline osteopenia, and a 40% increase in fractures among all the women taking it in the study.  Women with normal bone mass when they start Arimidex seem not to develop osteoporosis/osteopenia, but are still at increased risk for fractures while taking it.

    You can read up on recurrence risk for BC in the regular part of this site to get a better idea of where you're at.  It all comes down to what risk percentage you can live with, I think.  If I didn't do hormone therapy, my recurrence risk would be about 15-20% at this point.  Tamoxifen will cut that in half, down to about 8-10%.  I like that better than a 1 in 5 or 1 in 6 chance of getting BC again.

    Your doc is also a bit inaccurate about the side effects comparison.  The side effects you are experiencing are basically the same for both AI's & tamoxifen, which is why a lot of us take an antidepressant, which helps ameliorate those SE's.  Here's a link: 

    http://www.breastcancer.org/treatment/hormonal/side_effects/

    Other side effects are different between the two.  Tamoxifen is associated with an increased risk of uterine cancer, stroke or blood clots, but the "increase" in that risk is 1/10 of 1% in the research studies.  The risk that Arimidex will cause decreased bone density or a fracture is a lot higher than the increased risk for stroke or uterine cancer on Tamoxifen, and Arimidex also causes increased risk for blood clots, so that's a wash.

    I find a lot of doctors to be very cavalier about bone density, osteopenia & osteoporosis, compared to other considerations.  My mother died of complications due to severe osteoporosis deformity, so I have a very different view of this subject.  Approximately 13 to 18 percent of women in the United States who are age 50 or over have osteoporosis and an additional 37 to 50 percent have osteopenia.  I'd say that we're all at more risk for bone loss than for even a recurrence of BC, so we should protect ourselves.

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  • elisabeth
    elisabeth Posts: 255
    edited November 2008

    To Kak and OmahaGirl -- again, thank you so much for these quick replies.  I am going to look at what you both suggest.  I think I have looked at the breastcancer.org link mentioned.  Let me ask quickly about the recurrence risk for BC on this site.  I have looked pretty carefully.  Can you think of where else here I might look (like what category)?

     I find that doctors often take many things too lightly.  I feel the same way you do about the protecting our selves for bone loss.  However, my obgyn also said that doctors don't pay close enough attention to the endometrial hyperstimulation (thickening of the uterine walls, etc.).  Also, all of the studies keep showing that the AI's are more effective in regard to lessen recurrence.  But, all of these drugs have some very, very powerful and serious side effects.  My onc said that if my side effects are really bad he would take me off everything.  So - I'd be back to scared if I do and scared if I don't.  I do think I will explore mistletoe if I can't tolerate the side effects.  One last question - has anyone switched to Aromasin and liked it?

     Again - thank you so much for your time and your wisdom.  e 

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  • dancemom23
    dancemom23 Posts: 56
    edited November 2008

    Makraz and Msddede,

    I am also 42.  I won't start my Tamoxifen for another week or two, but I have also had sleeping problems.  I'm exhausted all the time, but just can't seem to get a good night's sleep.  Like Makraz, for me this has been going on for about 2 years - before all of this BC crap - but it seems to have gotten worse lately.  My PCP decided it was due to my asthma, though - now I'm not so sure.  The rad onc said once I get through with rads, my life will "normalize" (whatever that is) and I will probably be able to sleep better.  I certainly hope so - I'm kinda counting on it.

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  • Skye64
    Skye64 Posts: 109
    edited November 2008

    I am taking Tamoxifen 5 mg 10 days now...toady I increase it to 10 mg....5 mg in the morning and 5 mg in the evening. I hope I feel so well like I did with 5 mg......I will take the 10 mg 4 weeks and then I will increase that again......just wanna let you know.....I hope I can better adapt with this method....

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Skye, I've been doing 10 mg doses of tam twice a day, AM & PM, for six days & so far I feel just fine.  Everyone's different so your gradual ramping up sounds like a good plan.  Good luck! 

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  • Skye64
    Skye64 Posts: 109
    edited November 2008

    Thanks for the good luck, I really need it. I hope I will not get the nausea and depressions anymore. With the hotflushes I can deal and with less sleeping. I wish you good luck too.

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  • ICanDoThis
    ICanDoThis Posts: 1,473
    edited November 2008

    Just a thought

    I had a serious bout of depression, with insomnia and anxiety when I finished treatment.

    It coincided with starting tamoxifen, and was concerned that this was SEs.

    I took a 5 week drug vacation, and went to a therapist.

    At the end, I resumed the tamox.

    NO PROBLEM.

    Thought this might help someone.

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Thanks, Skye.  I think Sue makes a good point, too.  Sue, it seems to be really common for us to have major letdown after finishing one aspect of tx., like rads or chemo.  I also chose to take a brief treatment vacation after rads before I started tamoxifen, & so far, I'm doing all right, too.

    How are all you AI gals doing?

    Kathi

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  • Kpete
    Kpete Posts: 10
    edited November 2008

    Well, I did it! Undecided  I started Tamoxifen on Saturday, 11/1, and am taking 20 mg per day.  One nice thing vs Arimidex is the cost - mine was only $9.00 for a 30 day supply, or $24 for a 90 day supply.  So far, no SE's. Wink  Of course, everytime I wake up (which I typically do at least once per night), if I feel anything strange, I wonder now Is this the Tamoxifen at work?  I've had hot flashes for going on 3 years, so I won't know if it's a SE or not unless I have one continual one!  Yuck!

    Sounds like everyone in our original group will be done with rads within the week or so.  I finished 10/28, and don't have much left to show for the 33 treatments.  My boob is only red where I received the boosts - otherwise, I'm peeling a little, but have a nice tan on the one side. Can't say I miss the drive everyday!

    Hope everyone had a nice Halloween!, and can now look forward to the upcoming Holidays.

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  • Annabella58
    Annabella58 Posts: 2,466
    edited November 2008

    Oh thank good ness here you are all, I had lost the thread somehow....my arimidex is sitting in my pantry looking at me.

    Anybody else here scared to take it?  I may need a glass of wine to do it.

    I could not tolerate the calcium supps at all, period.  I have gone back to multis with 800 D and 450 mg. calc, which I can do and with a little checking during the day, I can supplement.  Also a tums has 600 mg.!!!!

    I dont' know what my insurance will cover on this but thank god my onc gave me a starter pack.  I am also taking fish oil, supposed to really help the achies.

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  • joanne2
    joanne2 Posts: 74
    edited November 2008

    Kak,

     Just found your Hallowbooby graphic...  YOU'RE funny!! Thanks for the laugh!  

    take care,

    Joanne2

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  • Tigwin
    Tigwin Posts: 275
    edited November 2008

    Hello Kristy Ann,

    I had my hysterectomy at the end of August.  I did not  have rads with this treatment. I had a different cancer 20 years ago and at that time I had rads. You can only have rads one time in the same area.  Too much damage.  I don't think they want you to wait very long after any treatment. I would chat with your doctor about it.  Good Luck.

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Thanks, Joanne!  Nice to have my twisted sense of humor appreciated!

    Have finished a week on Tamoxifen with Effexor & feel good!  Actually have been sleeping better than I was before I started.  The jury is out on the hot flash issue, because I 've been having them for 4 years now anyway so I can't tell if they're any worse.  I think I've had about the same number of them, which is only a few a day.  Also, I think I've actually been cooler at night, no big sweats this week, warm but not waking up dripping wet.  So, maybe it's the Effexor.  Or maybe the meager estrogen that the Tamoxifen is keeping away from my breasts is helping all the other stuff.  Who knows?  Anyway, just wanted to pass this on by way of encouragement.

    Kathi

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  • bluegems
    bluegems Posts: 733
    edited November 2008

    Hi, ladies. I'm new to the group here.

    I was dx'd July 1 with IDC, < 1cm, ER+,PR+, HER-, had the lumpectomy, neg sentinal nodes. So I guess I got a "good' cancer. Smile  

    I finished rads a month ago, and have had 2 weeks of the tamoxifen. So far, so good. I take it before bed, and other than the  hotflash that kicks in between 3-4am, it's ok. My attitude and outlook was pretty positive all the way through rads, once the initial shock wore off. I worked through the emotional slump last week, caused, I expect, from the fact that I was so busy healing the body, that the other stuff was pushed aside.

    Then came yesterday. The biopsy from my cheek came back positive for basal cell carcinoma, and I will be having Moh's surgery (tissue-conservative for the face region) soon. Now, I am eternally grateful this is not melanoma; after all, basal cell isn't deadly. And yet...........

    I've shed more tears in the past day, than I had since my diagnosis. I hate the whip-lash effect of this, especially as it came just as I felt I was on firm footing again. I'm afraid to ask "What's next?"

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  • bluegems
    bluegems Posts: 733
    edited November 2008

    KAK,

    LOVE the graphic! It is so appropo.

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  • joanne2
    joanne2 Posts: 74
    edited November 2008

    Awww Bluegems,

    Sorry about the "right hook".  I remember going through my stuff the first time, (x5yrs ago, lump,rad,no tamoxifen.. now back... thus far the same dx.. in the planning stage of the double mas). 

    Every step of the way, people kept saying, "don't worry, it will turn out negative"... the next thing I know I'm getting a lumpectomy!  Now looking back, (and forward), it may not always be "negative" but days will pass and you will go through it and eventually it will become your past.  Not all of who you are, just a part.  An experience in life.  One we all know, and share.  I am new to this site, and am very thankful to all here. The respect and unconditional caring is very healing in itself.  

    Take care and remember when you feel alone... we walk together!

    Joanne2

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Bluegems, Yikes!  Like one kind of cancer isn't enough??  I was scheduled to have a colonoscopy a few weeks after I ended up getting my positive breast biopsy.  So, I decided I would post-pone the darn colonoscopy for a while.......couldn't even deal with the thought of checking for any other kind of cancer!  You go ahead & have a good cry!

    Kathi

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  • Anonymous
    Anonymous Posts: 1,376
    edited November 2008

    Bluegems--I remember when my dermatologist's nurse called and told me "you have a little cancer"--it was a basal cell on my shoulder.  That was 9 years ago--I keep a close eye on any little spots now. I am high risk for invasive bc due to LCIS and family history--just finished my 5 years of tamoxifen 3 weeks ago. My pcp said there is a connection between skin ca and bc-I'm not sure just what he meant, but I do have a family history of skin ca and colon ca too. (my dad has had malignant melanoma twice and mom and sister have had basal cell skin ca too).

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