Anyone starting Chemo in August 07?

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  • nash
    nash Member Posts: 2,600
    edited November 2009

    OK, can't find the articles I had in mind. Quick google search did bring up info that says they're just not sure which HT is best for HER2+. Thinking about it did bring to mind the point that if you do go on an AI, the Zometa becomes even more important b/c of the bone loss the AI brings on.

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  • nash
    nash Member Posts: 2,600
    edited November 2009

    Here are some links for you, DeAnn--

    http://www.medscape.com/viewarticle/407813_5

    http://www.breastcancerupdate.com/bcu2004/5_surgeons/burstein.htm  (scroll down to "Adjuvant Endocrine Therapy and HER2 status")

    http://www.medicalnewstoday.com/articles/53474.php

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2009

    Thanks for the links, Nash! I've been doing some research as well on some natural hormone balancing methods and I'm thinking I might try that route. I'm scheduled for Zometa in December, so I'll have that done and then talk to my onc about some of my options. I agree that early menopause could bring with it a whole host of other unexpected problems, so I'm not keen to go there just yet!

    DeAnn 

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  • nash
    nash Member Posts: 2,600
    edited November 2009

    You're welcome, DeAnn. Natural sounds like a good option.

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  • katoMato
    katoMato Member Posts: 645
    edited November 2009

    Hi Ladies!

    Good Grief, I feel like I've been on another planet I've been gone so long.

    D -  Interesting about the Osteopenia at your age. I'm with Nash thinking the chemo brought it on. Mine has worsened on Arimidex (the standard of care is to prescribe it with Fosomax or something like that automatically because Arimidex does trash your bones.) and I'm resisting taking the Fosomax because counter-intuitively while it slows the bone loss from the AI, it can cause your JAW BONES to become weak. SO. I'm trying instead to do something more natural. It was like pulling teeth to get them to suggest anything other than Fosomax, but finally they came up with CALCIUM-SALMON. Yes. Like the Fish. I go back in a few months and we'll see if it works.

    Are you on enough Vit D3, too? I take at least 4,000iu a day. It's a pretty important discovery, and answers a lot of questions in my life.

    HAS EVERYONE SIGNED THE PETITION OPPOSING THE RECOMMENDATION TO CHANGE THE MAM GUIDELINES? Do. Especially you ones diagnosed before age 40. I don't know what these people are thinking. 

    Hope all is well out there. Lilith, and Jackie, how are the new jobs going?

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2009

    Hi Kaye! Yeah the Zometa can cause jaw bone necrosis also! I'm not a fan! But I'm gonna go ahead and do ONE infusion and see how it works out. I found a liquid calcium/magnesium supplement and I do take a little over 2,000 IU of vitamin D. My D levels were in the normal range when I had them tested, but going into winter, I might just up the dosage to 4,000.  

    I've been doing a lot of research on progesterone cream. It seems that PR+ cancer does not really mean that progesterone makes the tumors grow. Estrogen dominance is one explanation for breast cancer. Estrogen makes cells keep reproducing, whereas progesterone tells a cell to stop proliferating. If you have too much estrogen and not enough progesterone, cancer can develop.  Most of our environmental exposure gives us too much estrogen, hence adding progesterone to balance the hormones can prevent cancer from occurring. Or something like that, anyway. I'm never very good at paraphrasing medical jargon. 

    I have kind of mixed feelings about the mammo recommendations. My mammo didn't find my cancer. It actually didn't show any lumps at all. Not even the enormous 6 cm one that I had. I read a great editorial the other day that said, what we really should be up in arms about is the fact that they haven't come up with better diagnostic tools aside from mammo and MRI. Undecided

    Hope everybody is well!!

    DeAnn 

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  • nash
    nash Member Posts: 2,600
    edited November 2009

    Howdy, Kaye! Glad the 'puter is up and running again.

    DeAnn, if it's any consolation, my mom got monthly Zometa for years, and never had any jaw issues. It's mainly a problem if you're going to have major dental work done. Interesting about the progesterone--I didn't know that.

    Both my mom's tumor (4.5cm!!) and mine (2.7cm) were missed on mammo. Not sure how they missed my mom's huge, honkin', in a post-menopausal boob, tumor, but they did. Anyhow, obviously mammos haven't worked real well for us (I'll cut them some slack about my ILC tumor in a highly dense pre-meno boob), but BSE sure as hell did, and the panel's recommendation that BSE has no merit is insane. And I worry about my DD getting the proper screening she needs, since she'll need to start around age 25 or so. Hopefully MRIs (or like you said, DeAnn, some sort of better screening tool for young women) will be easier to get when she gets to that age. Anyhow, I'm finding the whole thing very upsetting. Yell 

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  • lilith
    lilith Member Posts: 543
    edited November 2009

    DeAnn, frankly I don't see any difference between tamox and AI, from the point of view of SE. the ickiest part is indeed the cost! hot flushes a bit higher again, for about a couple of months, but otherwise, nothing different. 

    Lets remember that people posting are usually the ones with problems, not the ones for whom it is all fine and dandy...

    I am heading to a glass of wine and a movie - just to ease the pre-doctor jitters. :) lots of love, girls! 

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  • katoMato
    katoMato Member Posts: 645
    edited November 2009

    Lilith is right - one exception being from the standpoint of bones. Tamox is supposed to "help" preserve bone density, whereas AI's (Arimedex, at least) trashes them. Aches, flashes - yeah. It's all the same.

    Ok Ladies. "Things I'm Grateful For":

    Hair. (Remember? Two Thanksgivings ago WE HAD NONE.)

    That I don't have to draw my eyebrows on. (Because unfortunately, it DOES seem to matter where they go.)

    That I have family close by.

    That I am able to experience another Thanksgiving with them.

    That I have a grand baby on the way.

    That I have a wonderful husband.

    That I survived "The Year Known as 2007" -

    and that I didn't have to do it alone....because I had you girls.

    Happy, Happy, Happy Thanksgiving, Ladies!

    I love you ALL.

    We diet MONDAY!

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  • lilith
    lilith Member Posts: 543
    edited November 2009

    Happy thanksgiving to all! I wish I were in the US for turkey day... I miss it so. 

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  • nash
    nash Member Posts: 2,600
    edited November 2009
    Happy Thanksgiving, girls! Love your list, Kaye. And we'll eat some extra turkey for ya, Lilith. Wink Good luck at the doc (hope the wine helped!)--is it a quarterly onc check?
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  • nash
    nash Member Posts: 2,600
    edited November 2009

    BTW, it appears DD has finally succumbed to Hamthrax, as one of my friends has dubbed H1N1. Thought we might go unscathed, but alas, the pediatrician diagnosed her yesterday. Wrote her a script for Tamaflu, then gave me another script for DS, "for when he gets sick, too". Ah, yes, I see where we're going with this. Oh well, good thing there's no school/sports/work, etc. this week! We shall just hunker down and endure....

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2009

    Nash - Ugh! So sorry to hear that hamthrax (love the name) has descended upon your household. Hope you weather the storm without getting it yourself!

    Lilith and Kaye - thanks for the encouraging words about AI drugs, though I'm afraid its kind of a moot point for me since I have to be post menopausal in order to take them, and I'm still pre-menopause according to my bloodwork.  I could take a Lupron shot that would artificially shut everything down, but I've done some research on that drug and I am 100% convinced that I won't do that. Some people have had some very scary reactions to it.  Instead, I've decided I'm going to try taking DIM and calcium-D-glucarate to block the bad estrogen. Studies are backing it up and I've read some very convincing material on these supplements from some respected sources. Very encouraging!

    So, I'm thankful for:

    Safe alternatives to scary drugs. 

    My family happy and healthy.

    A job I like with people I enjoy.

    Hair that grows so fast I need to cut it every 8 weeks. 

    Good friends at home.

    And dear friends abroad (that would be you guys) who have seen me through dark days and helped me come out smiling into the light.

    Love to you all!

    DeAnn 

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited November 2009

    Well Ladies, I am so full that I can barely fit between the chair and the keyboard to type this!  LOL  Hope everyone had the most 'wonderful turkey day.' 

    Nash, our little grandson was diagnosed about 6 weeks ago but had a very mild case and was only home from school 3 days before he was cleared to return.  Good luck with the kiddies and the hunkering down bit!  DeAnn and Kaye....so good to hear from both of you....you've been gone to long my dears. 

    lilith darling, can I dry ice and drop ship you some turkey and the trimmings, we sure have a car load of left overs in our house!  :)

    My thankful list....where to begin to truly count all of our blessings.

    --being semi-retired with a "wonderful" part time job and loving itttttttt!                             --my wonderful husband who is always there no matter what and is such a loving heart.   --2 grown children who've really become fabulous friends as well as my kids!                   --women like you all who love and support others in the worst of your own times.             --this board and mostly this thread to educate/support/and love each other and allow us to remember forever but have the strength to move forward with a most grateful heart.  

    Love and hugs to all of you in this our most blessed season.                                               June

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  • lilith
    lilith Member Posts: 543
    edited November 2009

    OHH, turkey day come and gone, I see everybody is in recovery stage!

    I have to say we did a small thanksgiving last weekend (stuck to week-ends as we don't get the day off...), and it was lovely. June, do ship the leftovers - particularly the stuffing, will ya? yummy yummy.

    It was the 6 months check-up. All seems to be clear, back in 6 months. It is already almost 2 years and 1/2!!! half-way to the five-year mark.

     So, thankfulwise:

    1. to be NED so far. this is a big one

    2. to have a wonderful daughter who has been growing in size (she is 14 so that is a good thing) and in smarts.. scary.

    3. that my SO is still around, after 2 years of treatments, chemo, hormonal therapy, pre-menopause... he is brave.

    4. that I am gainfully employed (even if I don't love my job, it is a good one)

    5. that my kitty sits happily on my lap when I write to you - very loving. he too supported me through chemo and all

    6. last but not least.. for all of you girls. hugs all around.

    How different life is than 3 years ago... and how much more fulfilling! :) hoorray!!! 

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  • Harley44
    Harley44 Member Posts: 5,446
    edited December 2009

    ...sorry I haven't been on bco much... I've been too caught up in the daily grind...

    My dh and I were going to open a coffee shoppe/deli, but the deal fell through...  we spent most of the summer in the planning stage....   everything happens for a reason, and it just wasn't meant to be...

    anyway... just want to say HI to everyone... .  I'm back...

    Kay and Jackie, I'm so jealous that you got to meet!!  

    I'm also very thankful just for being alive, and well.  Lilith, I didn't think about that...  It has been 2 1/2 years.....   wow!! 

    I'll be seeing my onc. on 12/11, to discuss switching to an AI...   I think he wants me to take Arimidex, but I want to try Femara...   I've heard good things about it.

    Good night, all...

    HUGS

    Harley 

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited December 2009

    Harley girl....we've missed you!

    Glad to have you back writing but sorry to hear the plans didn't work out.  My DH and I have owned and operated both a Tea Room and a restaurant/bar and it was both wonderful and awful at the same time.  The restaurant was in Gatlinburg, TN and the Tea Room was in Charleston.  No, we didn't have them at the same time!  :)  We would both tell you that it was the hardest physical labor we have ever done but it was also very rewarding at times.  I think back on them frequently but my fondest memories are of the Tea Room.

    Here's wishing you and your DH the most wonderful window to open for you and the 'timing' will be right this time. 

    Hope you had a great holiday.

    hugs....

    June

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  • katoMato
    katoMato Member Posts: 645
    edited December 2009

    Hi Harley - good to hear from you.

    June? A TEA room? What's a Tea Room? Is it like a bar, but you serve Tea? I love that idea. I've never heard of Tea Rooms, except in like a hotel or mansion. (As an odd aside, did you girls know there are such things as "Hookah Bars"?   HOOKAH BARS??? Alice In Wonderland. My son says people just go there and smoke.

    I am SOOOOOOOOOOOOOOOOO not made for this world.

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  • lilith
    lilith Member Posts: 543
    edited December 2009

    Hookah - aye! Kaye, nothing like what you are thinking HAHAHAHAHAHA! they are frequent in the middle east, Istanbul is filled with them! a Hookah is one of these orientals pipes, where the smoke gurgles through water - they often use flavored tobacco, such as pear, grape, roses, apple... I find the idea icky - I stopped smoking 20 yrs ago and never regretted it, but hey! different worlds for different folks.

    I just got the letter that my divorce is through and final. It was easy... quite painless actually. It feels weird now, strange no? sort of "empty", just as all the thoughts and dreams had been erased, but not quite.  

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  • DGHoff
    DGHoff Member Posts: 624
    edited December 2009

    Wow Lilith! That's kind of a big milestone thing. I'm sure it must feel a bit weird, but I'm glad it was a pretty painless experience. I know it doesn't always work out that way. 

    Hookah bars, huh? I don't think I'd fit in there either!

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited December 2009

    Okay Miss Kaye I see a little education into the more 'genteel' way of life is in order girl! LOL 

    I think Tea Rooms are more indigenous to the south but I have seen a few in other states.  They are a small restaurant or cafe that welcome men but cater 100%  to women.  The decor is very feminine and usually fancy.  Ladies will come for High Tea or lunch and will often wear fancy hats and gloves that they have borrowed from an elderly relative or friend.  We even had hats and gloves displayed on the wall that guests could use while they were in the restaurant. 

    Our menu consisted of 4 freshly made soups each day/ 4 freshly made desserts as well as fresh churned ice cream/a multitude of salads/ as well as a complete High Tea with all of the finger sandwiches/sweets/scones/lemon curd/ a huge selection of teas and all served elegantly at your table.  We did a huge business in bridal showers/ baby showers/ little girls' teas/ bridge groups/ and girls day out luncheons. 

    At night we served 3 dinner specials as well as the lunch menu.  Our Tea Room only seated 60 people, so it was intimate. 

    Now, I know that's more than you ever wanted to know....but I was on a roll, you know?  :)

    lillith, I remember that feeling well.  For me it was like waiting for the other shoe to drop and when it did feeling like, 'oh, is this it then?

    hugs to all,

    June

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  • lilith
    lilith Member Posts: 543
    edited December 2009

    June, if your tea-room had been in my city, I'd have have been a faithful customer... it sounds lovely. In Charleston! sounds like a "gone with the wind" kind of romantic thing... :) 

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  • katoMato
    katoMato Member Posts: 645
    edited December 2009

    I LOVE TEA ROOMS! They are my new favorite thing! Now i must find one.Laughing

    And Lilith, the Hookah thing is a crack up. Thanks for the education! I'm a "Child of the 6o's"..so yes,.I was intimately acquainted with hookah pipes (circa 1972), but not on the main street, and certainly not filled with anything legal!

    And BTW, A hug to you as you embark on a new chapter in your life. {hug}

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  • nash
    nash Member Posts: 2,600
    edited December 2009

    OK, it's settled then, we're all going over to June's for tea. Smile

    Lillith--big hug--I'm sure it has to be a real mixed bag of feelings.

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited December 2009

    I would have every one of you over for the grandest tea you've ever seen!  JUST GET HERE Y'ALL!!!!   :)

    hugs,

    June

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  • DGHoff
    DGHoff Member Posts: 624
    edited December 2009

    How much fun would that be to get together for tea! I'm afraid I would definitely have to borrow white gloves and a hat, though. I don't think any of my hats from chemo days would quite fit the bill!

    DeAnn 

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited December 2009

    DeAnn honey you just get here, I've got everything you need to make you feel like you 'stepped back in time.'  Heck, I even have the pearls!   LOL

    hugs...

    June

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  • lilith
    lilith Member Posts: 543
    edited December 2009

    June and all of you,

     I'll wear hats, gloves and lots more if it is about getting together with you all. 

    Nash - yes, to say the least it is a bag of mixed feelings. I try to be the best I can be, but it never seems to be enough, and it is hard. Heck. 

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited December 2009

    Hi Ladies,

    So sorry I haven't been on.  I guess going back to work through me out of balance.  LOL.  I do enjoy my job and I've been feeling great.  Just very tired for some reason.  I'm trying to read all your posts and catch up.  Hugs to all of you.

     Jackie

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  • DGHoff
    DGHoff Member Posts: 624
    edited December 2009

    Hi Jackie! Good to hear from you! I'm glad you are enjoying your job! 

    June, where is that you live again? Sometimes my husband travels for work, and on rare occasion I do go with him. Of course, if he ever travels somewhere that any of you guys live, I'll for sure try to go with him! Jackie, I definitely get to Manhattan about once every 18 months, so next time I'm headed there I will let you know. Lilith, Switzerland not so much, but maybe my DH will get a beer to import from there and I can go along with him!

    Guess what I did today. I made an appointment with a natural medicine clinic staffed by an MD, a nurse practitioner and an ND.  They do a lot of work with hormone issues, and women's health. It's a very integrative approach. Since Tamoxifen doesn't really work in my case, and since I for sure don't want to do the lupron shot thing, I figured I'm going to try to do this the natural way but get a good solid plan together as opposed to just "guessing" at what I should do. 

    I also cancelled my Zometa infusion. I'm going to try to rebuild my bones with natural methods as well. I know you said, Nash, that it wasn't a big deal for you, but since I've read that it takes a long time for the drug to get out of your system, I'm just not ready for that kind of a commitment. I've worked so hard to get my body detoxified from chemo, that I just can't bear the thought of adding in another drug that might or might not give me side effects.  

    Well, I better get off to bed. I'm trying very hard not to give in to the temptation of the frosted Christmas cookies that we made last night. Jasper stuck chocolate chips on them for decoration, and, well, they are extra tasty that way. 

    Hugs to you all my dears!

    DeAnn 

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