Hormonal Treatment for Stage IV

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  • lwd
    lwd Member Posts: 234
    edited June 2011

    Susan,

    Let us know how the 2 doses work.  Crossing my fingers.

    Lane 

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

    frapp, This could be the turnaround. Yay! Forgot to say that something to keep your back warm when you sleep could also help with the back pain. It did for me.
    Susan, crossing my fingers too for you..

  • Frapp
    Frapp Member Posts: 343
    edited June 2011

    Susan: Good luck with the Faslodex tomorrow.

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

    Both cheeks have been injected. 9 hrs have passed, and I am pain free on the troublesome left side. YEA!
     
    Nurse Linda and I discussed two injections in one cheek and her response was an emphatic NO. Too much on one side, and even if it was a viable option for one month, it is not sustainable. Okay. So we went for it.
     
    Afterward we discussed this whole Faslodex thing, and it came up that this injection is being blamed for some carpal issues amongst nurses. This injection is actually really hard for them too and some nurses are having thumb/index finger issues. So the nurses have decided to try using both thumbs to push. The goal is two-fold. First, it is easier on their bodies. Secondly, the nurses can hold the needle with greater steadiness, reducing the discomfort for the patients. Additionally, my hospital, along with two others in Boston, are talking with the manufacturer about changing the "push" area to accommodate a more comfortable position. Basically, they want an oval shape instead of the current circle.
     
    Anyhow, looks like I made it through this double dose thingie. Thanks for all the support.
     
    *susan* 
  • bedo
    bedo Member Posts: 1,429
    edited July 2011

    Good Susan

    I hope it's OK that I say this

    Anything you post is totally confidential and I would never share with anyone

    I wish you the best.

    You just struck a chord with me and helped me to be sane.

    And I am pulling for you.

    If it's not I understand, as I am at different stage, and will respect that.

  • lwd
    lwd Member Posts: 234
    edited July 2011

    Yeah, Susan,

    Who would have thought that it is a problem for nurses, too!  Glad your left cheek is smiling!  This whole thing is very interesting.  Happy 4th weekend!

    Lane 

  • susaloh
    susaloh Member Posts: 32
    edited July 2011

    Oh yes, my gyn who used to give me the injections had a really hard time! once or twice I got a nice bruise where she supported her thumb while pushing!

    But your nurses and you do know the trick of warming up the injections in your hands 10 min before giving them?

    When we started doing that (I got the tip here on the board), the injection itself got much easier for the doctor and I had much less pain on the actual injection site. However,someone (her husband, also a gyn?) once did something wrong, don´t remember if he pushed too fast or whether he just hit a nerve, but on one side I got this sharp pain deep inside for more than two weeks! I finally had to treat it with an anti-inflammatory cream which made it better within a week. But that side never stopped beeing a bit sensitive. I also began to develop scar tissue which got worse and the liquid wouldn´t spread as well as in the beginning. So quitting Faslodex was just a tiny bit of a relief, too. 

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

    Susa,

    We warm it for 30 minutes, and confirm that the syringes are at room temp by holding them in our hands. I have one of those sensitive spots after a sub-nurse hit something.

    How long have you been getting Faslodex?

    *susan* 

  • susaloh
    susaloh Member Posts: 32
    edited July 2011

    Hi Susan,

    I got Faslodex for 16 months, that is about 7 months just the single dose, and the other 8 or so months the double dose. Inspite of being stable on CT during most of that time, I never really got the chance to enjoy that because my tumor marker was doing a roller coaster ride - first a sharp drop after the ooph and beginning Faslodex, then slowly rising again, then another sharp drop when I was started on the double dose followed by rising tumormarker again, etc. Now towards the end, the marker just started to go up and down  again without apparent reason, but with a clear upward tendency and as the last CT showed visible progression,  I had to be switched to an AI. As to the lumpy scar tissue on my right hand side, now that two months have gone past since the last injection, it has almost disappeared.

  • 3rings
    3rings Member Posts: 8
    edited July 2011

    My CT had shown a bit of progression so when i went to the doctor today he started me on Faslodex one shot in each 'cheek''.  He is also keeping me on Anastrozole.He said he had three other patients  that he has kept on Anastrozole with the Faslodex and they are all doing well.  I was wondering if anyone else is on this combination?  Also what SE anyone is getting from the Faslodex.  But i see this is a current topic so i'll go back and read older post. 

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

    me me me. And I am NED NED NED!

    However, this month was my first "double". I had 13 months of singles leading up to my PET scan that found nothing. And I have been on the aromasin since Dec 15, 2005 [but who is counting?]

    My only new side effect has been one really wicked [as the kids say around here] hot flash about 5 hrs after the injection.

    *susan* 

  • Frapp
    Frapp Member Posts: 343
    edited July 2011

    Is faslodex a hormonal or is it a chemo?

  • 3rings
    3rings Member Posts: 8
    edited July 2011

    Frapp, i just got a Patient Guide for Faslodex and it says, 'Faslodex is a hormonal treatment for postmenopausal women with hormone receptor-positive breast cancer that has spread after treatment with antiestrogen medicine.' 

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

    Faslodex is a hormonal that works like Tamoxifen... i.e. it tries to shut down estrogen creation, while the AI's are designed to shut down the reception of estrogen.

    Hope this helps.

    *susan* 

  • Frapp
    Frapp Member Posts: 343
    edited July 2011

    I see, thanks Susan.  I got my scan results back.  Now keep in mind I had been on a 2 wk vacation from Arimidex before switching to Femara.  It says findings are "stable on CT imaging but there is a definite increase in SUV activitiy in 3 of the locations".  Their SUV values doubled.  The multiple other sclerotic lesions are not hypermetabolic.  So I'm guessing the little buggers were starting to wake up and get busy during my little holiday.  I see my doc on Friday.  I just couldn't wait on her for the results so I went to the records dept and got them. 

  • sandogger
    sandogger Member Posts: 8
    edited July 2011

    Hello Ladies!

    I was recently diagnosed as Stage 4 with mets to my bones in several places.

    My doctor plans on putting me on Arimidex.  I am taking Tamoxifen right now and had been cancer free for two years.  I had chemo, surgery, radiation, and 7 reconstruction surgeries.  I have faithfully taken my tamoxifen every single day.  Also, I have been taking a bone strengthening pills as part of a Clinical Research Trial for the past two years.  Since that did not work, today, I was instructed to discontinue the bone pills.

    I am having a LOT of pain and my onc is prescribing a stronger pain pill for that.  I am getting a bone biopsy on Thurs.  I am basically freaking out right now.

    I have always had extreme hot flashes from the Tamoxifen, fatigue, and bone pain at first.  I keep taking it every day because I want to stay alive.

    Any advice on being Stage 4  with the above situation, or other, is welcome! 

  • sandilee
    sandilee Member Posts: 436
    edited July 2011

    sandogger- so sorry to hear this.  It must be expecially hard after you've already had chemo and radiation to be back in the soup.

      Does the onc know what is causing the pain?    My pain first came on because of broken/compressed vertebrae, weakended due to the cancer.  The radiation will hopefully fight back the cancer, but I doubt if the pain will go away until the bones are fixed.  What was the bone strengthener that was in the trial?  There is a lot of evidence that the bone drugs are good for discouraging cancer to get too comfortable in our bones, so while it obviously didn't stop it in your case, it probably didn't hurt much either.  What have you been taking for the pain?

    So we're in a similar place.  I just found out last week that I joined the stage IV group, and that my belief of being cancer free for the last couple of years was an illusion.   Discouraging.

    Keep posting- I think it helps to know there are so many of us going through this.  I don't have any advice being new myself, but I'm eager to hear how you're doing.

      

  • reesie
    reesie Member Posts: 413
    edited July 2011

    Sandilee and Sandogger, so sorry you guys had to join us here.  But there's a great group here to help with questions or just to listen to you rant.

    Sandogger, hopefully they can get your bone pain under control.  I had rads to my left humerous and left tibia which helped tremendously with the pain I was having.  Make sure that you consult with a good Orth (or orth onc, even better) about your options.  Some bones need pinning before rads due to threat of or actual fracture.

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

    Here's a link which explains quite well the difference between tamoxifen, aromatase inhibitors and fulvestrant (Faslodex).

    http://www.suite101.com/content/breast-cancer-hormone-therapy-options-a197304

    The last is an estrogen-receptor down regulator. Sandogger, hope the AI now gets things under control. Ask your doctor about getting Zometa to replace the oral bone strengthener. It could also help with the pain.

  • Frapp
    Frapp Member Posts: 343
    edited July 2011

    My apt got moved up so I got my docs opinion on the PET today.  She says it has to be a 30% increase to be considered progression.  Since there are no new mets and the olds ones have not grown in size, they just have a larger SUV value; she is not concerned right now.  However, she is ordering another PET in 2&1/2 months to see how the Femara is doing.  Then we can also check it against this last one.  So, Im going to float down my little river for now, feeling much better on my new meds.  At least I don't feel like I'm 85 anymore.  (no offence to those who are, I just don't like feeling that way when I'm "only" 50)

  • lwd
    lwd Member Posts: 234
    edited July 2011

    Frapp,

    That sounds like good news.  So happy you're feeling better!  Sit back and enjoy the "river cruise"! 

    Lane 

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

    Frapp,

    Enjoy that kyack! Great news.

    *susan* 

  • susaloh
    susaloh Member Posts: 32
    edited July 2011

    Hi there,

    I´ve been on Arimidex now for 5 1/2 weeks. So far, I am afraid my abdominal mets are continuiing to grow. I can´t feel them but last week I finally had to recognize that the strange little tweaks and pains in my abdomen were getting stronger day by day and couldn´t be attributed to anything (I´d so far thought it was muscle pain from running, or so). My sister who is a doctor said it could be a general irritation of the peritoneum triggered by inflammatory processes due to the cancer. She said I should try anti-inflammatories and so I took one before going to sleep and woke up a different person in the morning. Since then I have been taking to Ibuprofens per day and the pain is gradually lessening and in general I feel much stronger and less tired. Amazing!

    But of course I can´t take Ibuprofen for ever (also, my stomach doesn´t like it) so I am hoping for the Arimidex to kick in!

    A question to the experts: For how long does one usually have to take an AI until there is a measurable effect? What´s the earliest for it to affect tumor markers?

  • 3rings
    3rings Member Posts: 8
    edited July 2011

    Thanks Heidihill that link really explains the difference between AI's and Faslodex.  I recieved my first two shots of Faslodex a week ago and i was wondering if there are others out there that have some SE.  If so did they lesson as time went on.  I have been having joint and mussel pain and skin discoloring around the injection sites.  Because i am also staying on my AI which also had some SE, i have deiced to take some time off work in hopes the SE lesson with time.  I would really like to hear about others experience with Faslodex.  Thanks!

  • Helmie
    Helmie Member Posts: 10
    edited July 2011

    Hi Susaloh, I'm glad to hear the Ibuprofen works for you. I was on Arimidex for one year, then on Femara for over one year, then on Aromasin for 10 months, and now on Faslodex since last March. My tumor markers went down pretty much right from the start of taking the drugs. They were stable after one year on Arimidex, but my onc switched me to Femara, because of the severe SEs (arthritis pain) with Arimidex. On Femara my tumor markers did not go up either (except for the CA-125), but a PET scan revealed progression. So, I guess, you never know.

    Good luck to you, and lots of (hugs), Helmie

  • susaloh
    susaloh Member Posts: 32
    edited July 2011

    Hi, everybody,

    today I have had news on my estrogen level: after 5 weeks on Arimidex it´s gone down from 68 to 13. So it has gone down and I hope that my onc is happy with that. But, don´t they aim at even lower levels  under an AI? Like 6 or 4 or so? Any ideas or experience or does/did  none of you ever get their estrogen measured while taking an AI?

    Helmie, thanks for your reply. I haven´t got my tumor markers yet, I hope they have gone down or not too high up!

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

    That sounds great, susaloh!

    I don't recall that they ever measured my estrogen levels.

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

    susan,

    My estrogen levels have never been measured. Doesn't seem to be part of the "package" here, or at least at my hospital. But if estrogen is the feeding tube, lower would be better, right?

    *susan* 

  • BaseballFan
    BaseballFan Member Posts: 46
    edited July 2011

    Could this be measuring TMs...i.e. CA-15-3?  Just a thought....

  • susaloh
    susaloh Member Posts: 32
    edited July 2011

    Susan and Baseballfan, measuring estrogen levels is not "part of the package" here either. But I had progression and at the same time noticed symptoms (or lack of symptoms!) indicating too much estrogen in my body (when you´ve been on antihormonals for 5 years you know how the absence of estrogen should feel!) So I asked my doctor for estrogen levels to be monitored, which they were and - surprise - estrogen was actually rising to levels that were basically impossible for someone with no ovaries, fairly slim, etc (highest was 68). Doctors were clueless but determined that it had to go down!  After 5 weeks of Arimidex now estrogen is down to an encouraging 13 (whatever the unit).

    Anyway, I got the very good news yesterday that my CA-15-3 has stayed more or less stable at 44,5 (the last two measurements were 43,5 in May and 38,5 two weeks later). CEA is perfect at 2,0. All this after 6 weeks of Arimidex. 

    I am very relieved because this means that I can embark tomorrow on my four-week vacation (!!) and sailing trip without having to worry that something terrible is happening in my body right now. However, I am still a little concerned because I think that this estrogen level has to go down further! During the four years on Tamoxifen it was around 13 several times and last year under Faslodex it was measured twice and was around 13-14 as well while my tumor markers were rising. I fear tumor cells are just a little stunned at the moment  and will adapt soon (have witnessed this before). My onc says that AIs are expected to push estrogen levels down to 2 or lower (non-measurable, he said). But he thinks it´s possible that it will go down further. If not I will ask him to be switched to Femara or Aromasin. 

    By the way, what makes me suspicious, too, is the fact that apart from 3-4 little hot flashes per day and some minor dryness I have no side effects of Arimidex. I think my body is quite confortable with this level of estrogen.Of course I am not keen to have more side effects, but I would rather have loads of them than having to get chemo, which would be the next step because there is quite a lot of cancer going on in my belly.....