About-to-Start-Hormones Group

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Anne, now that you're done with tamoxifen, what do you do now?  AI's? 

    I have melanoma in my family, too, ladies.  And colon cancer.  Not breast cancer, tho'.  Go figure.  Oy...

    Kathi

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Bumping.........how's everyone post-election?  Kathi

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  • AccidentalTourist
    AccidentalTourist Posts: 365
    edited November 2008

    Kathi, everyone I show your artwork loves it.  Have you tried marketing it?

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  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    "How do you spell relief?"  No more political ads!!!!    Laughing

    Susan

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  • Springtime
    Springtime Posts: 5,355
    edited November 2008

    Susan,

    I never thought I would be GLAD to have regular commercials!!! ha!

    Spring.

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  • pclarky
    pclarky Posts: 37
    edited November 2008

    In the realm of side effects, if anyone having itchy, flaky skin?  Thought at first it was just the onset of colder air and running the furnace, but this is something else!  Especially around the hairline, but my whole face is itching like mad.  I had been so obsessed with the more well-known side effects, but sure enough, 'itching, flaking skin' is right there on the list.  My skin is weird anyway, dry yet pimply (at the ripe old age of 56).  Hope this is one of those SEs that resolves!

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Nena, thank you!!  Yes, I do have it in a few galleries & I'm trying to put together a 2009 calendar (if I can get the heck out of my own way long enough) & that I sell.  I'll let you all know if & when I do.

    Pclarky, this dry skin thing must be the topic of the week (now that the election is over!), because I've found it newly expressed on several threads.  I'm 54 & from what I've been able to gather, post-chemo & post-rads & just the stress of this whole adventure contributes to dry skin.  Then, depending on where you live, the seasons have changed & it's getting colder so the heat is kicking on indoors which makes the air dry out.  But it's really common.  A woman on another thread likened it to 'being mummified.'  LOL

    I guess we're all going to have to bathe in moisturizer for the rest of our lives.  We can have a sub-theme here about it.  My favorite facial moisturizer has been Neutrogena Visibly Firm with copper & SPF 20.  But I have had very dry, itchy eyelids of all things for the past few years which were & still are so horrible since I started rads, I've had to put Aquaphor on them!  Which does help, by the way.  I use all kinds of things on my body for moisture.  I think also that radiation must do something to your skin's collagen, because my "tiny lines" aren't so tiny any more.  My neck has suddenly gotten so bad, it looks like it melted & is sagging into my chest!!  EEEK!

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  • AccidentalTourist
    AccidentalTourist Posts: 365
    edited November 2008

    Levels of estrogens directly affect levels of collagen in the skin.  That is the main reason for skin sagging around menopause.  Any hormonal blockers will make this worse.  Sorry to be such a downer.

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  • bee5467
    bee5467 Posts: 112
    edited November 2008

    pc --

    I'm sitting here reading posts, constantly rubbing my forehead.  Then I read your post. 

    This place is amazing. 

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  • pclarky
    pclarky Posts: 37
    edited November 2008

    It IS amazing. 

     The funny thing is, my itching started on my neck - several days before I started the tamoxifen (Halloween). Then red bumps appeared. That was about 2 weeks after finishing rads.  I've been putting 1% OTC cortisone cream (Kroger brand) on it, and I think it's a little better.  But the parched skin around my hairline was 5 days later, so I do attribute that to the startup.

     KAK - yep to the neck business.  We seem to have several things in common - diagnosis, and the postponement of a colonoscopy.  Last summer was my "get all those things out of the way" time.  Of course, all the tests were supposed to come out normal, too.  Now I'm thinking 2009 for the 'scopy. When I read your funny startup to this thread, it made me want to go ahead and post at last, it sounded so much like I have been feeling.  Have been coming to this site without registering since July and the diagnosis.

    BTW, how do I add that info, that is the tamox starting date, to my bio info at the bottom?  I finally found the other stuff, but can't figure out how y'all are adding quotes, tamox dates, etc. 

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  • NancyD
    NancyD Posts: 3,562
    edited November 2008

    pclarky - just write it in the place for a "signature" and it will appear.

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  • mzmiller99
    mzmiller99 Posts: 894
    edited November 2008

    NancyD - I was wondering the same thing!  Thanks for asking,pclarky, and thanks for sharing, NancyD.

    Have a great Sunday all!

    Susan

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  • Makratz
    Makratz Posts: 12,678
    edited November 2008

    NancyD,

    I was wondering about that too.

    Thanks for sharing.

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  • Ela73484
    Ela73484 Posts: 12
    edited November 2008

    Hi Ladies,

    I haven't posted for awhile but, I have been reading. I am going to take my first Tamox tomorrow morning and I am worried.  (That feeling of worry never seem to go away.)  I hope everyone has a great Monday.

    Ela 

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  • peeps1111
    peeps1111 Posts: 262
    edited November 2008

    Nancy:

     I got something from the health food store, I think it was called Mannose?(too exhausted or lazy to get up and go find it) to prevent UTI's after I had one last year.  I can't remember if my PCP's nurse recommended it or if I went to the store first.  The guy that owns the store is a wealth of info.  I try to remember to take one every day along with my other seemingly endless prescriptions.

    Peeps

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  • Msdede
    Msdede Posts: 16
    edited November 2008

    Hello

    I have started experiencing a new symptom that may or may not be related to tamoxifen. I started having burning, stinging pain behind my right knee on friday.  On saturday, it spread to my calf and the back of my thigh.  On sunday, it started in my left leg.  Is this "burning pain"  the leg pain that is listed as a side effect? 

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Msdede, that symptom may have nothing to do with tamoxifen, but if your calf & leg is pinkish, a bit swollen & tender to touch, you need to get to the doctor or emergency department immediately & get a Doppler ultrasound to make sure you don't have a blood clot in your leg.  If it's just burning on the back of the knee & leg, without the swelling & redness, it could be just be sciatica.  (I'm a PT, Msdede, so that's why I'm hazarding a guess here.)

    The muscle aches that may be attributed to tamoxifen wouldn't feel like that, but it can increase your risk of blood clots.  Take a baby aspirin if you're concerned it may be that & get your leg checked out.

    Kathi

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  • pclarky
    pclarky Posts: 37
    edited November 2008
    Does anyone here have knowledge about the wisdom of taking low-dose aspirin along with tamoxifen?  Seems like a good idea, but I don't know anything about interactions, etc.  Forgive if this is someplace else...
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  • KAK
    KAK Posts: 1,679
    edited November 2008

    pclarky, I think the idea behind it is to prevent the possibility of forming blood clots, which can be a risk with tamoxifen, but it's really a pretty small one, something like 1 woman in 1000, in one of the studies that was done.  If you have a family history of clots or heart issues or high blood pressure, you can safely take a baby aspirin or even half a baby aspirin a day.  That's 81 mg or 40 mg respectively.  Talk to your doctor first, though, before you bother doing that.  I do know a doc who thinks we should all just do that over a certain age.

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  • Hornet2Mom
    Hornet2Mom Posts: 13
    edited November 2008

    I can't believe how much information this one thread has given me - thank you KAK for starting this!  I have 2 boosts left, then see my Med Onc about Tamoxifen - I feel like this has given me some very practical questions to ask.  Has anyone heard of taking Zometa to increase bone stregnth and decrease chance of bone mets?  I too am 42, itchy, tired but so proud of the short (now grey) hair I have - I went au natural today and didn't scare anyone at my kid's school. 

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  • PSK07
    PSK07 Posts: 781
    edited November 2008

    Hi, all - finally going to start in on the Big T

    I'm 47, pre-menopausal. I had DCIS a year ago, lumpectomy, rads. The med onc I saw at the time was, in his words, on the fence about the benefits of tamoxifen. He didn't prescribe it for his mother (? !), and didn't want to prescribe it for me.  As I was still in decision mode with rads, I didn't push it. Then I experienced some problems with my periods, got a prelim diagnosis of adenomyosis, and decided to just let it be.

    Fast forward to this August and my MRI showed changes in something that was bx as b9 just prior to my DCIS surgery on the other breast. Another bx and I'm given a dx of LCIS. Since there was a nodule, I had a partial mastectomy/lumpectomy. Final pathology was LCIS and ALH.  I had a consult with a new med onc before surgery and met with her again today.  I have the prescription in my wallet.

    So - Kathi/KAK, I see that you switched from Zoloft to Effexor. How did that go?  I will be doing the same thing (I think, need to see my PCP). I've been on Zoloft for close to 14 years, so I'm concerned. The onc wants me to start on the Effexor, get that to the right dosage, then start tamoxifen.

    Looking forward to this phase of the journey.

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Pam, it's going great so far.  I'm tapered up to 75mg of effexor daily now, & I feel fine.  On another thread, someone said that if that doesn't handle despression symptoms, that it can be upped.  I guess 75mg is a lowish dose, more geared to just control the SE's of tamoxifen (which it seems to be doing very nicely), so if I feel it's not enough at any point, I'll ask my doc if I can up the Effexor.

    I mentioned here somewhere that I've been allowed to stop my Fosamax while on the Tamoxifen.  And today, I got my PCP's permission to stop my Zocor, which I just started 6 months ago for high cholesterol.  My latest numbers were good, & because Tamoxifen lowers cholesterol, I can stop the Zocor & just check my cholesterol in 3 mos. to see if it's still down. 

    So, I'm very happy to be taking fewer meds overall.

    Good luck.  Also, you can take Celexa or Lexapro for depression while on Tamox. if Effexor doesn't work.  Only thing is that you have to taper off Effexor gradually if you don't like it -- SE's can happen if you stop all at once, I guess. 

    Kathi

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Oh, Lisa, forgot your question.  Yes, Zometa is a bone builder which has been found to prevent some forms of BC.  If you take Tamoxifen, you don't really need a bone builder unless you've got really bad osteoporosis.  I've got some research links that I'll look for later & post.  Kathi

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  • bee5467
    bee5467 Posts: 112
    edited November 2008

    Kathi --

    After reading on these boards about the depression that comes after treatment (chemo & rad) I finally got up the nerve to ask about upping my Effexor.  I was doing 75mg/day, and more and more, I was having trouble leaving the house for anything . . . wore the same clothes all the time, because after all, "what's the use?"  My onc. approved upping it, and said to go to my family doc

    So I went today, and was all prepared to defend my wish to up the Effexor.  He was very quick to say, "Nearly all of my cancer patients who have gone thru Chemo & Rad come to a point afterward when everything just crashes.  They do so well during, but when it's ended, and they think they'll be so happy, it seems to hit them hard, and below the belt."  He made me feel so much better. I need to climb out of this hole . . .  Thanks everyone, for all the info and support. 

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  • KAK
    KAK Posts: 1,679
    edited November 2008

    Bee, I'm glad your family doc was so understanding.  All of us go through that crash sooner or later, in one form or another, sometimes more than once.  It's the "after coping" crash, I think; just when you get through a chunk of the hard stuff & you don't have to face anymore for a while, you let your guard down & ploooieeee!

    I'm still climbing out of my hole, but getting better little by little.  I have a great counselor, good friends, a job I love & this forum, which is a life-saver.  Good luck to you.  And hang in there. 

    Kathi

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  • angie27
    angie27 Posts: 863
    edited November 2008

    Hello to you all wonderful ladies,

    Well I guess I am now joining this club, I have a bottle of Femara waiting for me, as usual there is always that fear of starting something new.  So I am here to ask for support and feedback.

    Thank you so much

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  • pclarky
    pclarky Posts: 37
    edited November 2008

    Sigh. It's either itchin', hurtin' or peelin'.  Sometimes, all of the above.  And, we think these SEs sometimes diminish?  I'm ready!

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  • bluegems
    bluegems Posts: 733
    edited November 2008

    Bee,

    You'll pull through this! I had my melt down a few weeks ago, made it through okay, then had a setback. But all's on the upswing again. I guess this is an up and down journey, and as long as the ups are longer and more frequent than the downs, I'll consider it moving in the right direction.

    I've found that I listen more to my inner self now, and take special heed of what my body is really telling me. I'm learning to stop thinking "just a few more papers to grade", or "I'll stay for another hour." when really what I need to do is stop, refocus, and respect what I'm going through. The papers will still be there tomorrow (no grading elves here!) and the rest will get done when it gets done. Like today..............just left after classes, came home and slept for 3 hours. Canceled weight training - it'll happen Saturday.

     Third week on tamoxifen here. The flashes are a little more frequent, coming in early evening as  well as the 3-4 a.m. set, but still okay. I switched to Aveeno body was for sensitive skin. It seems to help the dryness a little.

     You all are a wonderful bunch of ladies! Smile

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  • tkone
    tkone Posts: 511
    edited November 2008

    Kathi,

    I'm joining too from the September RADS group.  I was the last of the finishers I think.  I just finished yesterday and as I am leaving on vacation on Monday my oncologist has given me the blessing to not start Tamox until I get back.  I asked about the Zometa and am going to participate in a clinical trial here in Seattle that combines Tamox and Zometa.  I am very excited to do it as I have read that adding Zometa to the mix helps reduce the risk of bone mets.

    Thanks for starting this thread.  It is always good to get info from the knowledgable ladies here.

    Hi to Pam-I see you are another Seattleite!  We Northwest girls have to stick together!

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  • PSK07
    PSK07 Posts: 781
    edited November 2008

    Hi Tracy - I'm a north ender, and you?

    I still haven't heard back from my PCP about switching to a different anti-D. I think she's off on Thursday, so maybe tomorrow. I'm ready to move on to the next step. I'm on 150mg of Zoloft, so not sure how long to taper off and start in on something else.

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