Faslodex Girls

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  • ljs101
    ljs101 Member Posts: 1
    edited March 2013

    THANK YOU FASLODEX GIRLS!  I JUST GOT MY FIRST SHOT AFTER 11 MOS ON ARIMIDEX.

    I READ THE POSTS ON FASLODEX, FOLLOWED ALL THE TIPS - WARMING IT UP, SHOT HIGH ON HIP

    AND SHIFTED WEIGHT TO OPPOSITE HIP, ASKED HER TO GO SLOW. NO PAIN.  THANKS ALOT.

    STAGE IV BREAST FIRST DIAGNOSED 3/12.  LJS

  • EvaPerone
    EvaPerone Member Posts: 94
    edited March 2013

    Woo hoo! I'm stable, no new cancer and old mets aren't any bigger. I hit one year on faslodex at the end of March. Very relieved.

    Plus Philly Public TV (WHYY) is going to interview me on Thurs in relation to a bill I'm trying to get passed in Delaware. Insurance co's are not required to offer supplemental coverage for those of us on Medicare but under 65. 29 States require insurers to do so, so I am trying to get this changed.  20% of my medical bills (with no out of pocket limit) would eventually bankrupt me. If you happen to live in DE and are in this situation, please message me. Thanks.

  • bourscheid
    bourscheid Member Posts: 718
    edited March 2013

    Had another round of shots today (round 4) along with Doxil and Xgeva.  Going to have a PET scan April 2nd to see how things are going.  I am feeling really well so I am expecting a good scan.  :-)  If things are improving then Doc will take me off of Doxil and give just Faslodex and Xgeva a try for a while.

  • Tina2
    Tina2 Member Posts: 2,943
    edited March 2013

    Keeping fingers crossed for you, Lori!

    Tina

  • marymoir
    marymoir Member Posts: 245
    edited March 2013

    Greetings, ladies! I just got my first loading dose yesterday...had to switch from Doxil after a bad MUGA. Have only read about 1/2 the threads here...wish I'd known about the warming up trick beforehand! I'll definitely remember that next time!



    Seems like it will be a very tolerable regimen, but am a little worried about the 4-6 month time I've been reading that it takes to start working b/c I have a huge amount of tumor in my liver, and it's proven to be pretty aggressive so far. Hoping the liver doesn't get out of control before "the Faz" gets a chance to do its thing.



    Any liver metsters on here have early success with this drug?

  • EvaPerone
    EvaPerone Member Posts: 94
    edited March 2013

    Marymoir, I had a liver re-section and faslodex has kept mets from returning thus far. Lung mets but no liver. Is surgery a possiblility? 

  • marymoir
    marymoir Member Posts: 245
    edited March 2013

    Eva, unfortunately surgery isn't an option for me...widespread, numerous tumors in both lobes. Made the mistake of looking at my PET scan...the whole dang thing is bright yellow!

  • EvaPerone
    EvaPerone Member Posts: 94
    edited March 2013

    Sorry Marymoir, the liver is the one miraculous organ that grows again so I was hoping it was an option for you. My oncologist argued against the re-section at first but the surgeons won the argument, luckily for me. But faslodex in higher doses is doing some amazing things. Hang in.

  • pajim
    pajim Member Posts: 2,785
    edited March 2013

    Hello everyone!  I start Faslodex either this week or next week.  I'm planning to ask my onc, but does it absolutely HAVE to go into the butt?  I had a spinal fusion about a month ago and my butt is in seriously bad shape.

    On the other hand, maybe I won't even notice the pain along with the rest.

  • Tina2
    Tina2 Member Posts: 2,943
    edited March 2013

    Hi, Pajim, welcome to the Bottoms Up Club. I've never heard of anyone getting Faslodex anywhere but the butt; that's where the package instructions indicate it should go. There might be exceptions, though. Check with your oncologist.  I hope you've gone back through this thread and read all the good tips.

    Tina

  • pajim
    pajim Member Posts: 2,785
    edited March 2013

    I have read the tips and I appreciate them.  After reading all this though, I think I'll ask the doc if we can wait a month.  By then I should have healed up enough to tolerate the shots.

  • marymoir
    marymoir Member Posts: 245
    edited March 2013

    Any ladies experienced increased bone mets pain after starting Faz? About a week after my 1st shot, I started getting increased pain in some of the areas where I have mets (shoulder, pelvis, lower back). I had pain in these areas for a long time, but had gotten to where it was completely gone on twice-daily OxyContin. Over the last few days, Ive had to use breakthrough Vicodin because the Oxy seems to be wearing off about 3 hrs. before my next scheduled dose. Also, the Oxy hasn't been completely erasing the pain like it had before ... just turning it down to a dull roar.



    Of course, my fear is that the tumors may be growing too fast for the Faz to do its thing. I remember reading on here that it can take 4-6 mos for it to start working. Anyone else experienced something like this after starting Faz?

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited March 2013

    I did, marymoir. I started Faslodex in Dec. The pain had me worried because my previous treatment didn't do that. It has subsided yet I feel the same as you. Sometimes the pain is still a dull roar. I see that you were just diagnosed in Nov. w/stage IV. You may not have the optimal level of relief yet for your pain. Or you could be building up a tolerance to the Oxy. (I'm taking 30 mg OxyContin with Oxycodone for breakthrough.) I often start getting withdrawal symptoms after 6 hrs on the 12-hr dose. Are you seeing a pain management specialist? They can help make suggestions. I had my first follow up scan a couple weeks ago and I was stable (according to the radiologist report. There was teensy progression in some numbers which didn't seem to matter). I'm also getting Xgeva shots. I didn't get one this month to see if it helped the bone pain. Hard to tell sometimes what helps the hurt or what hurts the hurt.

  • M360
    M360 Member Posts: 356
    edited March 2013

    Marymoir, I too have bone pain and it seems that some days where I have cancer, spine, hip and femur will wake me up like someone is shearing it off.  Faslodex helps the spread of the cancer I didn't think it got rid of the bone cancer.  I'm to take Zometa infusion to rid the bones of cancer.  However, with my other medical problems I was told in the past that these medications are out of the question.  Plus you can't have any dental care or complications with such.  My jaw with severe arthritis and not being able to hardly chew and now Zometa doesn't seem like a good fit.  I'm also doing Cytoxan but more often not only for the cancer but for the Lupus and Arthritis.  Faslodex is a long term treatment I am wondering if I have the time for it to work?!

  • Tina72
    Tina72 Member Posts: 484
    edited March 2013

    I have been on faz and Femara combined since July. The days after my las treatment my stomach hurt so bad I took hydrocodone (left over from my oct hystorectomy) my mets are to my omentum. The next day I was fine. Told the onc and she said that is the process when tumor dies. She was very happy and the lymph node that had been large is pretty much gone too after that one treatment even though I have been on this treatment 8 month. Best of luck to you all !!

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2013

    Tina, wow. I hadn't ever heard about tumor-nausea response before. Fascinating. Well, it would be if we weren't talking about our own bodies.

    *susan*

  • Tina72
    Tina72 Member Posts: 484
    edited March 2013

    Susan, it was severe pain in the area of my mets, no nausea. I hope to use you as my roll model and be on faz for a looking time!

  • marymoir
    marymoir Member Posts: 245
    edited March 2013

    M360 - sorry to hear about your pain. I wasn't aware that the Faz didn't help bone mets...I'll definitely have to ask my onc about that next visit! Hope u get some relief soon!



    Tina -- Great to hear the Faz is working so well for you! After my initial post (the day I got my 2nd shot), I also got some serious pain in my liver area. I have widespread liver mets and initially had pain in that area, but for the last 3 mos. or so I hadn't felt anything there, so I kinda freaked out thinking the Faz must not be working and the tumors were having a field day! But, like you, the next morning the liver area pain was gone! Too weird, but your doc's explanation is very reassuring! hope that also explains the increased pain in the area of some of my mets...they started really hurting several days BEFORE the 2nd shot. I did ask my NP about it, and she thought it was a side effect of the Faz that should ease up once I get through with the bi-weekly dosing. I like your onc's description better!!



    Hope everyone has a great weekend!

  • marymoir
    marymoir Member Posts: 245
    edited March 2013

    Ronda -- that's interesting about building up a tolerance to the oxy...i must say this is what made me hesitant to start down the opiod road in the first place (worried that if I built upna tolerance now, then they wouldn't work later if things got worse). My Dad (retired oncologist) told me not to worry about it and take the pain meds, and I will say they've kept me completely pain-free for about 3-4 months, so I'm grateful to have had that time without pain. Thanks for reminding me about pain mgt. specialist -- I had asked my onc for a referral the last time he upped my opioids, but he said they could manage my pain there. I think they do have a palliative care team within their practice that focuses on pain mgt issues...maybe I'll start there.

  • Tish_13
    Tish_13 Member Posts: 67
    edited March 2013

    M360,

    You stated in your post Faslodex spreads cancer.

    Please research your statement as most of the Faslodex Girls are taking Faslodex for bone mets, not as a cure but to control or slow down the progression of the disease.

    wwwFaslodex.com

  • sandilee
    sandilee Member Posts: 1,843
    edited March 2013

    From the manufacturer's website:

    "FASLODEX is a hormonal therapy that works by binding to estrogen receptors. In doing so, FASLODEX can block the effect estrogen has on the cancer cells. FASLODEX also causes the estrogen receptor to change shape and not work as well. In addition, FASLODEX causes a decrease in the number of estrogen receptors."

      It works the same way for the various places that the cancers shows up, as it works indirectly, by blocking the effect of estrogen on the cancer cells, inhibiting their growth.

     Faslodex has similar affects as an aromatase inhibitor, but with a different process of keeping the estrogen from the cells.

      I really like Faslodex. Now that I've discovered taking Benedryl before for the reaction and itching, I have no problems with it at all. And my tumor markers have fallen steadily.

     Scans this month. Hope I can stay on it!

  • Tish_13
    Tish_13 Member Posts: 67
    edited March 2013

    Thanks Sandilee for the in depth explanation of how Faslodex works...

    Hope your scans go well

  • EvaPerone
    EvaPerone Member Posts: 94
    edited April 2013

    Surgical Removal of Lung Metastases in Breast Cancer Patients May Improve Overall Survival

    Released: 3/27/2013 1:30 PM EDT 
    Embargo expired: 4/1/2013 1:05 AM EDT
    Source Newsroom: Society of Thoracic Surgeons

    Newswise — Chicago — Patients with primary breast cancer that has spread to the lungs may live longer if the lung metastases are surgically removed, according to a study published in the April 2013 issue of The Annals of Thoracic Surgery.

    Georgios Meimarakis, MD, Hauke Winter, MD, PhD, and colleagues from Ludwig-Maximilians-University in Munich, Germany, examined factors that influenced the long-term survival of patients with isolated pulmonary metastases of primary breast cancer following surgical removal of the metastases (pulmonary metastasectomy).

    Metastatic breast cancer (mBC) is a stage identified when the disease has spread to distant, non-adjacent organs or areas. The median survival of patients with mBC treated with conventional chemotherapeutic regimens ranges from 12 months to 24 months, and it previously had been assumed that these patients would not benefit from surgical intervention.

    The researchers found that, with metastasectomy, the median overall survival increased to as much as 103.4 months.

    “Before this study, no randomized trial had examined prospectively the impact of metastasectomy on survival compared to conservative therapeutic strategies,” said Dr. Meimarakis.

    Between 1982 and 2007, 81 patients with a median age of 58.2 years (range 28.3 to 76.3 years) were recruited for the study.

    In 81.5% of patients (66), complete removal of all tumors was observed, with microscopic examinations showing no remaining tumor cells (R0 resection). In 7.4% of patients (6), some tumors cells were still visible microscopically (R1 resection) and 11.1% of patients (9) showed portions of remaining tumors visible to the naked eye (R2 resection).

    R0 resection was associated with significantly longer median overall survival than R1 or R2 resection (103.4 months, 23.6 months, and 20.2 months, respectively). Additional analysis revealed that R0 resection, and number and size of metastases were factors that affected long-term survival.

    Dr. Meimarakis noted: “Too often patients with mBC are not considered for surgical treatment, as it is assumed that these patients would not benefit from surgical interventions for various reasons. Based on our findings we highly recommend surgeons consider patients with isolated pulmonary metastases for surgical resection.”

    Cancer treatment teams need to consider metastasectomy
    In an invited commentary appearing in the same issue, Hans Hoffmann, MD, from The University of Heidelberg in Germany, noted that this study adds meaningful data to the available body of evidence that breast cancer patients with a suspected first recurrence are most likely to gain substantial benefit from an intensified multidisciplinary therapeutic approach.

    “As the morbidity and mortality of pulmonary resection has decreased substantially over the last decades, this potentially beneficial procedure should be discussed and considered more often than not in an intensified multidisciplinary therapeutic approach,” said Dr. Hoffmann.

    ###

    For a copy of the study and invited commentary, contact Cassie Brasseur at 312-202-5865 or cbrasseur@sts.org.

    Founded in 1964, The Society of Thoracic Surgeons is a not-for-profit organization representing more than 6,600 cardiothoracic surgeons, researchers, and allied health care professionals worldwide who are dedicated to ensuring the best possible outcomes for surgeries of the heart, lung, and esophagus, as well as other surgical procedures within the chest. The Society’s mission is to enhance the ability of cardiothoracic surgeons to provide the highest quality patient care through education, research and advocacy.

    The Annals of Thoracic Surgery is the official journal of STS and the Southern Thoracic Surgical Association.

  • Tina2
    Tina2 Member Posts: 2,943
    edited April 2013

    EvaPerone,

    Thanks for posting this. When I queried my oncologist quite a while ago about surgery to remove my lung metastases, citing studies I had read on oligometastases, he told me he was convinced that the primary tumor had micrometasticized elsewhere in my body. (Yes, old school thinking, perhaps, but he was adamant in his quiet and serious way.) He didn't completely dismiss the idea of lung surgery, but said that the procedure would be major, the recovery long and that subsequent systemic treatment would still be necessary. He maintained that we should wait until we gave Faslodex a chance to work and I agreed. Since then, Faslodex has done a great job, taking me to stable and virtually NED. In the interim I realized that there are also areas other than the several nodules in my lungs that have been "iffy" on scans and that surgery may not even have been a possibility.

    Tina

  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited April 2013

    I have a questions, it's going to be a year in may the I have bone mets. As soon as I was diagnosed my onc put me on faslodex. Femara and zometa. Then I had a oophrectemy and my onc decided take me of faslodex and just leave me on femera and zometa, well it worked for a month than I progressed in November so my onc put me back o faslodex and I responed very well my tumor markings went from 964 to 364 the following month it went up a bit to 396 know this months it's 555. My onc still wants to leave me on it. He feels u should give it a chance. But I am scared and not sure if that is right. I trust my onc but I want to here from you women. I heard it takes sometime for faslodex to kick in I am technically on it since December.

  • Florence2006
    Florence2006 Member Posts: 28
    edited April 2013

    I was diagnosed with metastatic breast cancer in the right lung in 2009.  I had already had 2 lumptectomies and a left breast mastectomy (2008), but no lymph node involvement.  When I started to have a breathing problem, my FIRST scan was done.  The pulmonologist estimated that the cancer was in my lung for about 5 years undetected.  It had spread to the vertebrae and chest wall.  I had chemotherapy (cytoxan and 5FU) every 2 weeks for about 2 1/2 years with a 6 month break in the middle until the breathing issue returned.  A year ago I stopped chemotherapy and started month shots of Faslodex.  My tumor marker is in the 20s and I'm doing very well.  I feel much better, exercise more.   I hope it can work for me for years to come.  I have joint tightness but not much more than that. Full body bone scans show no cancer!  CT scans are clear.  Incredible.

  • Tish_13
    Tish_13 Member Posts: 67
    edited April 2013

    That is great Florence!

    To many more years of NED.

  • Tish_13
    Tish_13 Member Posts: 67
    edited April 2013

    I just had my 11th injection of Faslodex today this is my new song I song I made up to take away the sting...



    Hush little cancer don't you cry

    Mama has something to say to you



    Pack up your things and leave right now

    you're not wanted here at all



    Mama got some drugs to kill you dead

    So pack your bags and leave right now



    Hush little cancer don't you cry

    Your not worth the tears I shed





  • marymoir
    marymoir Member Posts: 245
    edited April 2013

    Love the song, Tish!  Have to remember that when I go next week!!

  • marymoir
    marymoir Member Posts: 245
    edited April 2013

    And Florence, thanks for sharing your good news!  Always love to hear that people are having success on a regimen that I've just started!  Hope you continue to get a long, LONG run from the Faz!

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