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Hormonal Treatment for Stage IV

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Comments

  • khartoregon
    khartoregon Member Posts: 12
    edited May 2010

    I'm with you, dreamwriter.  I'm looking forward to seeing my neice and nephew graduate college (and that may take awhile since the nephew only just learned how to walk and say "papa").

  • Reneepals
    Reneepals Member Posts: 64
    edited May 2010

    I never could quite understand why my doc just didn't do a bi-salpingo-ophrectomy. But I just assumed my Onc doesn't want any type of surgery. I would love it if I didn't have to do Lupron.

  • joaniji
    joaniji Member Posts: 12
    edited May 2010

    Hi All,

    Turtleknits - I took Lupron for about 7 months before I had my ovaries out in 8/09.  I really did not like this med at all.  I found that the pain from my bone mets was worse on this drug, my mood was unstable and that I had terrible night sweats.  Once I had my ovaries out, so much improved.  Even though I still get occasional hot flashes and my skin is rather dry, surgical menopause was the best decision I have made.  I realize that I have probably frightened you with respect to taking Lupron.  I am sorry - the drug may affect you differently so give it a try.  If it doesn't work for you, I would strongly suggest looking into having your ovaries out.  Best of luck, Joani 

  • ibcmets
    ibcmets Member Posts: 312
    edited May 2010

    Turtleknits,

    I have  about the same diagnosis w/ spinal bone mets and ibc.  I've been on Zometa for the bone mets since I started chemo and started Lupron after chemo completed in Feb 2010.  I had not had any SE from Lupron so far.  I have a lot of SE's from Femara.  After 10 months; my Pet & bone scans are clear.   I'm ER/PR+, her2- and 52 although I feel like 70 with the aromatose inhibitors.

    Terri

  • Nopey
    Nopey Member Posts: 3
    edited May 2010

    To Robin - Wishing you the best of luck on the femara. Once I got my scan results, a big weight was lifted. The roller coaster slowed, and I could get to planning a future. Praying you have similar success. Every time I hear of a success, it lifts my spirits. Every time I read about a warrior's struggle, it gives me courage. Love to all my sisters.

    Nopey 

  • dreamwriter
    dreamwriter Member Posts: 678
    edited May 2010

    I had my ovaries radiated.  One, two all through.  No more estrogen.  I now shave my beard daily.(Under chin, not on face).  Some of my friends going through menopause are starting to get hair there too so I dont feel so bad. Im just ahead of the crowd.

    On living.  Think of one thing you really want to do but never could due to... expense, time, blah blah.  Now gather your resources and do it.  For me it was quilting.  And I am just about finished my first quilt.  I am taking my time.  Doing it right.  And it will be about 2 yrs to finish.  I wasnt sewing non stop for two years.  I just picked it up and put it down at will.  If I dont finish it, a quilter will do it.

  • turtleknits
    turtleknits Member Posts: 3
    edited May 2010

    Joani -

    Was wondering why my doc didn't suggest taking my ovaries out - still unclear as to why any of this has to be done.  I would assume it has to do with determining the correct medicine (Tamoxifan or Femara) to prescribe.  I understand there's significantr SE with those, too.  So much for quality of life!

    Chris

  • joaniji
    joaniji Member Posts: 12
    edited May 2010

    Hi Chris,

    It sounds like you have more questions about your treatment. If you would like our feedback please don't hesitate to describe your concerns and of course, ask your doctor.  I think that docs are hesitant to suggest getting your ovaries out perhaps due to the potential expense and due to the recovery being easy for some but maybe more difficult for others.  I wish that I had had my ovaries out after my initial diagnosis of stage 2 - after all I was done having kids, so why not!!  I did not do well on Tamoxifen - I hated the side effects and the cancer came back.  Has your onc. suggested Aromasin?  I am doing well on this with minimal side effects, maybe you would do well too.  Good luck! 

  • nancyh
    nancyh Member Posts: 185
    edited May 2010

    Hey Chris,

    I was on Lupron 8 years ago with my first chemo and the worst SE was wicked hot flashes.  Now I've had so much chemo I'm in permanent menopause, so no need.  I think Joani is right - lupron is seen as a safer/easier/less expensive way to "quiet" your ovaries versus having them surgically removed.  Since you are ER/PR+, it is really important to starve your body of estrogen.  One doctor described estrogen as "cancer food".  As for SEs of Tamox, Femara, etc., I think it is all relative...the SEs of hormonals are a lot easier to tolerate than chemo.  One pill a day versus a weekly trip to to the treatment center...I feel like a free woman!  My quality of life is significantly improved now that I'm on Femara. 

  • turtleknits
    turtleknits Member Posts: 3
    edited May 2010

    Thanks for sharing your experiences on Lupron - think I've been getting a little freaked out with transitioning from chemo to something new (like chemo was a picnic!) Just putting my fears down in writing to my fellow sisters who've been through the same thing has made me feel better tho I still will have lots of questions for my doc next week.  I just felt (and this could all be in my own head) that I didn't have a lot of choices as far as shutting down my ovaries except for Lupron and there's some scary statistics out there on this drug. 

    {{Gentle hugs to all}}

    Chris

  • Suebus
    Suebus Member Posts: 5
    edited June 2010

    Hi Ladies, I am just sitting here thinking (I know I shouldn't be) but I am newly dx and taking Tamaxofin with monthly zoladex injections. I will be going for my three month scans the end of June and I'm already worried. I hope that everything will be fine and we see signs of shrinkage in both the tumor size and my tumor markers. How long did it take to see that the hormone treatment was working for any of you, and if it failed what was your next treatment? I feel great, worked in the garden all weekend we had beautiful weather, I am in Connecticut. Hope you all had a great weekend too.

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited June 2010

    Hey Sue

    Happy Tuesday.  I have the same regimen as you. On my 3 mo scans I think things looked stable (nothiing bigger or smaller). On the six month set, breast tumor(s) remained stable, some shrinkage seen in lymph nodes. I don't recall the tumor markers, it wasn't a dramatic downward trend but they did move that way. Tho I am not NED, I am stable and the dr says I will continue with this tx as it seems to be working. Good luck!

  • lil_wilde
    lil_wilde Member Posts: 5
    edited June 2010

    Hey, so Suebus, I see your taking Zoladex while on Tamoxifin. I will be taking it while undergoing chemo as a protective measure for my ovaries but since Tamoxifin doesn't harm your fertility I can only assume your taking it so you don't waste eggs during the yrs your on Tamoxifin. I haven't heard of this but that sounds like it would be a good idea. Am I correct?

  • Suebus
    Suebus Member Posts: 5
    edited June 2010

    I am taking zoladex to shut down my estrogen, the tamoxifin stops the estrogen from binding to the tumors.

  • RobinNY
    RobinNY Member Posts: 136
    edited June 2010

    Hi Sue

    My first scans are the end of June too.....and I am also nervous already.  God, I hope to see SOME improvement!  Would love to read from others what their first scans showed.  Thanks for posting English!

    Robin 

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited June 2010

    Howdy

    No more Arimidex....change to Faslodex...any ideas on what to expect?  Have the first shot on June 12th with my Aredia - from what I have read so far, it seems the SE's are similar to Arimidex...any experiences would be helpful so I know what to expect.

    Thanks and hugs to all!

    Sharon

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2010

    Sharon,

    I had my first Faslodex shot almost a month ago, next one is Friday. I am taking it in combination with Aromasin [which I have been on for 4 1/2 years.] For me, the number of "fatigue" days seems to be higher, but I have had no increase in bone/joint pain. The injection itself was longer than I would have liked [63 seconds], and my butt was sore for a day or so, but nothing that lasted for any length of time.

    Will count again this Friday during the second shot, my little OCD way of dealing with stress, and will let you know my count.

    *susan* 

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited June 2010

    Thanks Susan...let me know how it goes on Friday....hope it goes well! 

    I so appreciate your input...getting the shot on a Friday seems the best option if the fatigue lasts longer....gives me the weekend to recover! 

    Hugs

    Sharon

  • ead
    ead Member Posts: 12
    edited June 2010

    Hi Sharon, I was on Faslodex for 3 years. The very firs time I had flu like symptoms and body aches. It was a breeze!!. I wish you well on it. Keep us posted.

    Liz

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited June 2010

    Thanks Liz...will do!   Hope this one is the long run one!

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2010

    Okay. No 2 hole in butt is now done. I had a different nurse today. Way too much discussion of how I feel, and what do you do for work, and do you have children.... This nurse did the injection more towards the top of the buttock cheek. And it turns out that they will alternate cheeks each month. [Trust me, there is plenty of butt to go around!]

    This time, the injection was far more painful, but only lasted 28 seconds. Felt a little shaky afterwards, so I sat on the happy cheek and drank some ginger ale. Now two hours later, just a little residual discomfort. I suspect even that will be gone by this evening.

    *susan* 

  • Reneepals
    Reneepals Member Posts: 64
    edited June 2010

    Sharon .... I also started Faslodex... I got 2 loading doses and I am going to get the start of my 2nd cycle next friday. I seem to be a little bit more tired then usual. Also it is the same aches as Femara, at first I thought that was all done... WRONG! But It is even easier than Femara.

  • lovinmomma
    lovinmomma Member Posts: 105
    edited June 2010

    I have been on Femara for 13 months and I am trying Aromisin for this month. Has any one had diareaha and severe cramping while on Aromisin??

  • ead
    ead Member Posts: 12
    edited June 2010

    Hi I have been on Aromasin for 9 months and I did not have many side affects at all. I hope you get some relief from that.

    Take care ,

    Liz

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2010

    lovinmomma,

    I have been on aromasin for 4.5 years, and never had diarrhea or severe cramping. I have lots and lots of other side effects though. In fact, I thought I had had every one except "loss of appetite", but clearly I missed a few. Hope your body adjusts soon.

    *susan* 

  • LouiseIndigo
    LouiseIndigo Member Posts: 2
    edited June 2010

    Hi lovinmomma

    I have been on aromasin for about a year now and the WORST side effect by far for me was anxiety -- which had me in a sorry state about 2 months into it. It eased off at about 8 months but i do suggest that if it happens to you that you don't put up with it but talk to your doc about treating it. I had been on arimidex before that which, other than aches, pains and stiffness had no other side effects. The aches and pains i still have with aromasin but am so used to them at this stage they don't really impede me at all. They're not bad.

     Louise

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited June 2010

    First shot of Faslodex down...hopefully many more to go...you guys are so right on...a little more tired but no so bad!  Thanks for all the heads up!  Now, who was out there having trouble getting Arimidex...PM me.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2010

    Lowrider,

    Welcome to the pin-cushion club! Not so bad, you are right. For me a little more fatigue and a sore throat for a few days.

    Hard to find a hard candy any more for the sore throat. Best I could do was individually wrapped LifeSavers. 

    *susan* 

  • susaloh
    susaloh Member Posts: 32
    edited June 2010

    I have had my fifth Faslodex shot last week. After four years of Tamoxifen Faslodex has got even  fewer side effects for me. No more sore eyes, sore nose, sore tummy (everythings was so dry!). Less tired. Feeling great!!

    Only side effect probably of lack of estrogen, which stayed: If I am not very careful I get inflammation of tendons in my right hand, like right now. It only gets better very very slowly, but fortunately doesn´t hurt much, just part of the back of my hand is a bit swollen.

    I personally believe, that in general AIs are much harder on us than Tamoxifen or Faslodex and I consider myself lucky, that my doc decided I should start with Faslodex and later, when it stops working (I hope it´s working at all, first scans end of June!), we´ll try the AIs.

  • deemarie
    deemarie Member Posts: 5
    edited July 2010

    wow I thought i was free and clear but now I have 5 nodes in lung involved but they are very small like bee bee my dr is not to concerned about it at this point.I am on this journey alone, I am somewhat of a loner,but sometimes i do get lonely. She told me she wants me to stay on her 2 and to continued to take my arimidex. I am due for a pet scan july 30 prayfully the  spots on my lung will be gone if not  hopefully she will put me on something else , please keep me in prayer.well also i am going to john hopkins for a second opinion I  will be going to college in the fall to become a social worker  and i am 62 years young. I will keep all of u in my prayers.

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