Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Hormonal Treatment for Stage IV

1…2627293132…61

Comments

  • jenn_h
    jenn_h Member Posts: 21
    edited December 2011

    Hi ladies...I was diagnosed last Feb., did the chemo, bilateral mast and lymph nodes removed,, then rads. Thought I was done and in the clear and then...Oops! Just one more thing...went for a yearly pap to find extremely enlarged ovaries. Had complete hysterectomy Nov. 10, it was mets. I have not yet had a scan as the surgical wound got infected and right now I have a hole in my stomach and visiting nurses come to pack it daily. My Dr. gave me the "it's now stage 4 and quality of life is important, and it could be months, it could be years" speech...I guess I expected more chemo, but instead I have started arimidex...I guess I need to let it try to do it's job, but think I may at least go to Cleveland Clinic or Pittsburgh for another opinion or at the very least get into their sysrem for any trials that may come along...I live in a pretty rural area with not much available.

    I have been posting all along in a chemo group from back in February, but thought it was time to find some new common friends to add to my group so here I am. It is nice to hear of those of you who have been "hanging out with this for years (I have to say my first goal is to make it 9 years for my youngest child to graduate high school). So even under kind of sucky circu,stances, it's nice to meet you all..

  • bobkat
    bobkat Member Posts: 14
    edited December 2011

    Hi Jenn, so sorry to hear about your diagnosis.  I was diagnosed in May after 7 years out.  Started with chemo right away because of marrow involvement.  Had my 1st Pet/Ct scan a couple weeks ago with progression to liver and bones.  I just started Arimidex also.  Have not had any significant side effects just can't sleep at night and tired throughout day.  I guess Stage IV is a back and forth thing between chemo and AI's.  Just wanted to say hi and the ladies here are great.  You have alot of caring, support and information.  Hope your stomach wound heals quickly.  Hugs

  • lulubee
    lulubee Member Posts: 903
    edited December 2011

    Welcome, Jenn -- you're going through a lot right now and I'm glad you found us.  I need seven years to get my youngest graduated, so climb on in and let's go for a long ride!  

    I'm a year ahead of you with the unexpected ovary mets found via an ooph/hyst (which was done because we had just discovered extensive bone mets the week prior and my onc wanted me to start an AI post haste).   It's a lot to absorb all at once, isn't it?  Your body will be in a bit of shock for a few months, so try to be patient and loving to yourself.

    Be encouraged: Femara did a superhero shazzam on my lesions over the past year, with no chemo. Arimidex could be your superhero, too.

    I'm a praying gal, and your tummy is on my list today!  I wish you a healed tummy for Christmas! 

  • chrissyb
    chrissyb Member Posts: 11,438
    edited December 2011

    Hi Jenn, the AI's of which Arimidex is one, are very powerful drugs and have gotten many women to NED and I'm one of them.  I know it doesn't feel like you are doing much, just popping a tiny little pill, but that little pill carries with it a huge wallop, strong enough to kick cancer butt.  The AI's are used first very often as they don't cause too many problems for the majority of people and the docs like to keep the chemo for later.

    Good luck and I hope you get good results with the Arimidex!

    Love n hugs.  Chrissy

  • heidihill
    heidihill Member Posts: 1,858
    edited December 2011

    Hi Jenn, hope you heal quickly and can enjoy the holidays with your family. Your body hasn't seen anything like an AI so the cancer will be in for more of a shock than with chemo, which you've already done. It can kick cancer butt, as Chrissy says. Hope it gets walloped! 

  • Aerial
    Aerial Member Posts: 33
    edited December 2011

    Hi, Jenn!  I'm sorry we have to meet under these circumstances but, you'll find caring support here.

    As for my experience:  In 2003, I had a lumpectomy, radiation and five years on Arimidex.  I was cancer free for eight years (had joint pain in feet and hands--it was uncomfortable but, very doable).

    Unfortunately, a new lump (very small) was found in my right (the same) breast, I had the mastectomy and started Aromasin.  Then, in November, lesions were found in my lower spine.

    Cancer is such a sneaky little bugger--I'm giving it the stink eye--and trusting we can all smack it back (with the help of modern meds and the grace of God)!

  • T-mac
    T-mac Member Posts: 8
    edited December 2011

    I think I just started my period after not having it and thinking I was in chemopause... And so did my dr.  I am on arimidex, so was wondering if I have started what kind of treatment can I expect?  I am fairly anxious about this!  My dr is suppose to be calling me back!  

    I hope someone who has had this experience or knows something about this can enlighten me.

    God Bless,

    Trish 

  • T-mac
    T-mac Member Posts: 8
    edited December 2011

    I think I just started my period after not having it and thinking I was in chemopause... And so did my dr.  I am on arimidex, so was wondering if I have started what kind of treatment can I expect?  I am fairly anxious about this!  My dr is suppose to be calling me back!  

    I hope someone who has had this experience or knows something about this can enlighten me.

    God Bless,

    Trish 

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited December 2011

    Trish,

    I think there are two options. The first one is that you can switch to Tamoxifen, or you could add Lupron [an injection] and maintain the Armidex. I will say, that I had a "bleeding" incident during rads and was sent to an OB/GYN. There were a flurry of tests and it was determined that I was actually in menopause in spite of the bleeding. However, I had stopped my menses a few years before starting any BC treatments.

    Hope that your doctor calls soon and relieves your anxiety.

    *susan* 

  • T-mac
    T-mac Member Posts: 8
    edited December 2011

    Thank you Susan,

    I am just hoping that it is nothing. My doc has said I will be doing a bunch of tests as well. It won't happen until next week. I hope that it is just nothing, but have a feeling that it is a real period as my hot flashes have stopped for a little while now, did'nt really pay attention to that until my bleeding then it was like oh yea! :-(   I just hope that the cancer doesnt grow while my body is producing estrogen.  Guess hope is running rampant lol!

    God Bless,

    Trish 

  • maggiethecat
    maggiethecat Member Posts: 9
    edited December 2011

    I'm new stage 4 met patient, first treatment started on Dec 5 with tamoxifen and herceptin, second treatment one week later on Dec 12,2011, minimal SE so far, will be implanting a port in Jan 2012' just want to know if anyone has received herceptin treatment before and what to expect.

    I'm a HER2 positive and ERPR negative.

    Thanks for the support.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited December 2011

    Maggie,

    So sorry to welcome you to our Club Mets. I am a bit puzzled by the Tamoxifen given that you are ER/PR negative. Tamoxifen  is to my knowledge, only a useful tool for ER+ women. As to the herceptin, I would recommend starting your own thread or doing a search. Lots of women have been on herceptin on these boards. From my readings [haven't had it myself] the side effects are minimal, but going to the hospital once a week is annoying.

    All the best,

    *susan* 

  • jenn_h
    jenn_h Member Posts: 21
    edited December 2011

    Thanks for all the positive words and thoughts. It makes me feel positive to know so many out there have hung out with that stink-o stage IV diagnosis for a long time.The arimidex has been ok so far, I have been getting headaches nightly, but they aren't unbearable. Bobkat- like you I have a terrible time sleeping at night, doesn't matter how tired I am, and I lack energy totally during the day. lulubee- 'm with you, I don't think 7 or 9 years is too much to ask! Let's give that stupid cancer heck!! Hope everyone is enjoying their holidays!! Hugs!

  • china
    china Member Posts: 56
    edited December 2011

    Jenn-h, Welcome to the boards and sorry it is because you are stage 4. Iwas diagnosed stage 4 at the get go with spinal mets(3) in thoracic region and L 9th rib. I did radiation and femara, another AI that prevents the conversion of aromatase to estrogen. It worked great for me but had some SE's. Sleeplessness and joint pain were a few of my Se's. I did femara for 2 1/2 years then noticed my hot flashes, joint pain, generally feeling crappy became better and found out that my tumor markers were rising and I had progression. Did the chemo haul and I am stable today and have been doing tamoxifen for almost 7 months and still stable. Scan end of Nov still showed stability. I wish you great sucess with arimidex (works like femara) and you become stable or even NED. Good luck with your healing from your surgical site and may each day be brighter and better in your recovery. Dawn

  • lulubee
    lulubee Member Posts: 903
    edited December 2011
    Got my PET report yesterday, and sadly it's farewell to the stable boy.  Essentially, my lower spine and pelvic bones are a mess.  My last PET before this one was in March, and it showed that after five months on Femara all my bone lesions had either disappeared or were shrinking.  But this new scan shows that the lesions throughout my pelvic bones which had healed are now back and "far more reactive" than they were at baseline a year ago. There are some new lesions as well.  I confess I was wondering because my hot flashes have greatly subsided over the past three months, and my lower back/pelvic area has become vaguely achy.At least there was no organ or soft tissue involvement, and there is only one thoracic vertebra mentioned in the report this time, which is a far cry from my baseline PET (the one that discovered the mets in September 2010) where every thoracic vertebra was involved, as well as multiple lesions in my sacrum/ilium, etc.I have an MRI on Friday evening. I start Xgeva on Tuesday, and I'm betting this is farewell to Femara.  Wonder what comes next...Fiddlesticks.  To put it mildly.
  • susan_02143
    susan_02143 Member Posts: 2,394
    edited December 2011

    lulubee,

    I am so sorry that your latest scan showed progression. I wonder if they will give Faslodex a try, or move straight to a chemo to knock the socks off this puppy. Don't leave us on this thread until we all know your next step.... good thoughts.

    *susan* 

  • lulubee
    lulubee Member Posts: 903
    edited December 2011

    Thanks, Susan.  My MRI is tonight and I'm just trying to stay busy. 

    Maybe this observation is more appropriate for a Stage IV forum, but I keep thinking how astounding it is to observe how every little shift in diagnosis can cause our minds to profoundly recalculate the future.  It's automatic for me, like an involuntary response.  When I'm stable, I think casually about next summer's vacation and buying a new purse and such, but the minute I hear "progression" I can't look at my closets without feeling a driving, primal urge to cull my life clutter to a near-zen state.  

    I feel like my brain has once again rearranged itself overnight.  I'm going to go clean something.

  • Frapp
    Frapp Member Posts: 343
    edited December 2011

    lulubee:  I wish mine would make me go clean something.  :-)  I still have christmas clutter strewn all over the house and can't seem to get motivated to get rid of it.  All I can focus on is the apt I have on Wed to get results from scans.

  • lulubee
    lulubee Member Posts: 903
    edited December 2011

    Frapp, I'll get my followup scan results on Tuesday.  I waited for the PET results over Christmas, and now I'll spend New Year's waiting out the MRI results.  Woo HOO, do I know how to party or what?

    Tellyawhut, my Frapp friend, I'll steam clean your kitchen floors and countertops today if you'll clean out my fridge.  Ready, set, go...

  • Frapp
    Frapp Member Posts: 343
    edited December 2011

    You got a DEAL!!!  Wait.....is it warm at your house cause mine is pretty cold.  No snow yet, but its just up over the boarder and ready to fall any minute.

  • lulubee
    lulubee Member Posts: 903
    edited December 2011
    It's 56 degrees out here... high of 66 later... come on over!  I'm grabbing my snowshoes and headed your way.  Laughing
  • Frapp
    Frapp Member Posts: 343
    edited December 2011

    I'm there!!   Don't bother carting snow shoes, you can use mine. 

  • ElizabethGail
    ElizabethGail Member Posts: 2
    edited December 2011

    Hello:  This is the first time I've posted.  I was diagnosed in October 2010 with stage IV, hormone positive breast cancer with mets only in bones and after radiation for a bone met on/in my pelvis (resulted in a broken pelvis), I've been taking femora.  It has been working and my cancer markers are/were normal, down from around 180, and there has been no progress in the disease and, in fact, a few of the mets appear smaller and less dense.  About 60 minutes ago I got home from a bone scan. I've not had one since early September.  Over the past 90 days or so I've come off of some pretty heavy pain meds and off of some antidepressants so I've been feeling some additional pain.  But for the past 30 days or so I've had some pretty good pain and I've not felt well.  Needless to say when the tech needed to "take some more pictures of my pelvis" today, I sort of freaked.  I am treated at the University of Chicago and have confidence in my doctor although she does not readily share information.  I guess I'm just suppose to put my life in her hands and be thankful that I get treatment at such a famed institution and by such an accomplished doctor.  But I'm off my point. My point is this, I need information about what happens once the AI stops working. Can someone help me? Direct me to a book? Do we try other AIs?  Do we go immediately to what I think of as traditional chemo? Tell me about their experiences.   I am pretty much a mess right now and don't see the doctor until January 9th. And for someone who generally prides herself in being well informed, well read, well spoken and always with an opinion, I feel so helpless when it comes to my cancer and my treatment. I initially bought a bunch of books but it seemed like every author had an odd plan, a crazy opinion, a cure or something.....I don't know what to read, where to go, who to talk to. I went to a support group a couple of months ago but it was full of women who have, and good for them, been cancer free for years and literally when I introduced myself and stated that I had stage IV cancer, these ladies gasped. I didn't go back.  The doctor keeps saying that I am going to live a long life but I don't even know what is the next step in my treatment.   I cannot live in this ignorance much longer. I cannot give over my life to someone as it seems I am expected to do. I am rambling but I need information, please. 

  • barsco1963
    barsco1963 Member Posts: 879
    edited December 2011

    ElizabethGail - sorry that you are feeling at a loss about your situation. I do not have information to give as I have not been treated with AIs - only Tamoxifen at this point (for liver mets).

    Sometimes we need to be pushy with our doctors in order to get the info we are looking for. They are busy and sometimes rush through an appt. I would suggest you have a list of questions ready for your visit on the 9th and make sure that you get an answer for every one of them. You need to know what your course of treatment will be for some peace of mind.

    I am sure that there will be some great info to come from some of the others here that will help you out.

    Good luck with your visit on the 9th - let us know how you make out.

    ((hugs))

  • ElizabethGail
    ElizabethGail Member Posts: 2
    edited December 2011

    Thank you much for your response.  And you are so correct.  I sort of ask questions for a living (I teach law school) but when it come to this I'm a fumbling fool.  My doctor is smart, I don't question her abilitites and she has been right on the money so far but we have a very hard time communicating.  I just hate this time between the scan and the appointment and this time, particularly, I'm worried.  Thanks again.  Elizabeth

  • Frapp
    Frapp Member Posts: 343
    edited December 2011

    Elizabeth, both my local oncologist and my doc at Dana Farber tell me that you go throu all the ai's before going to chemo. Save the "big guns" for when the ai's either stop working or you need to push cancer back quickly because it's moved In to organs. If you have only been on femara then you still have several to go through before moving to chemo. Try talking to your doc and tell her that you need to be more informed . Sometimes patients don't want to know and she/he may be going in that assumption. You have lots of options right now and you will find lots of information on this site. We will all agree that it is most difficult when you don't have a plan. You will have one soon. Keep posting your questions, you have come to the right place for answers. Keep in mind, none of us are your doc and we don't have near the education but we do have experience. Best to you.

  • Aerial
    Aerial Member Posts: 33
    edited December 2011

    Elizabeth, I find the "in between times" so frustrating, too.  I've had Arimidex, Femara, and Aromasin.  I had radiation for my first breast cancer In 2003.  Since, the bone mets were discovered this past November (2011) I've started monthly injections of Faslodex along with an infusion (IV drip) of Zometa.  I usually take my husband to my appointments with me because he helps me remember questions we've had and/or side effects I forget to mention.  My oncologist emphasized that if these drugs aren't effective for me there are plenty of types of chemo available.

    So, I try not to worry but, I haven't had any scans (yet) since this treatment was started.  It sure is nerve wracking to know what could be ahead. 

    You'll be in my thoughts during this time of "not knowing" what's next.

    Lulubee--((((Hugs)))) and prayers that this new treatment will be a cancer "butt kicker"!   

  • Naniam
    Naniam Member Posts: 586
    edited December 2011

    ElizabethGail,  I learned in Oct. that I have extensive bone mets, lesion in my liver, etc.  I took Femara for only a short time after my initial treatment and I stopped because of the side effects.  I thought my treatment would be to try some of the other AI's or even to try the Femara again but he immediately put me on Faslodex.  I wish I could answer your questions but I too have no idea what the next treatment plan will be if the Faslodex doesn't work.  I don't think my oncologist would decide until that happens and the progression.   

    I have told my oncologist that I am probably the kind of patient that they really dislike - I want and need more information.  It is still hard to get sometimes. The oncology nurse that I had a wonderful relationship with and could talk to, retired a year ago and boy do I miss her especially since all of this has happened.  My suggestion is that you just tell her you need to talk and you need to know her plan for now and what you should expect in future scans, treatments.    I really don't care if it is a wonderful cancer center and a wonderful doctor, we all need to be able to talk to our oncologist. No one has to follow blindly but I do think future treatments also depends on the amount of progression and that is something no one knows. 

    I am so sorry that you find yourself here.  We have both learned around the same time and I still can't believe that this has happened.  The women here have welcomed me and answered my questions and adressed my fears.

    Brenda   

       

  • lulubee
    lulubee Member Posts: 903
    edited December 2011

    Thanks, Aerial... you're sweet to remember.

    I'm home from the MRI, which went over an hour because they did it without contrast and then with, both thoracic and lumbar.  Somehow I always forget what a blasting disco jackhammer that thing is!!!  Wow. Next time I think I'll take them up on the Xanax offer instead of popping a piddly 2mg Valium beforehand on my own.

    So anyway. I just finished off a bowl of cinnamon ice cream, which I do believe I richly deserved.  (I don't usually eat sweets, so this is pretty huge.)

    SAY... can anyone tell me if I should be expecting side effects after the Xgeva injection on Tuesday?  It's a whole new world suddenly... 

  • heidihill
    heidihill Member Posts: 1,858
    edited December 2011

    To all of you waiting for results, sending positive thoughts. I've been putting off my pet scans until the new year. In the meantime I've gotten info from the Internet on the new machine they've installed. I'm claustrophobic so it's reassuring to learn that a full body scan will only take 5 minutes now. Lulubee, I can't imagine what you must have gone through! I prefer the radiation exposure to being cooped up. As for Xgeva, I've heard some folks here say they did not have side effects.



    Elizabeth, I was told once that if femara were to stop working, I would go on to Faslodex. Actually I am on Arimidex now. My onc thought it would be good to rotate my meds to give me a break from femara side effects after almost 4 years (or to stop me from complaining about them). I have another 10 days before I go back to femara. I had a one-month break. There are new meds on the horizon, however, which could give us more options if we can stall progression long enough. I'm thinking of Afinitor as one.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.