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Faslodex Girls Thread

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  • activern
    activern Member Posts: 111
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    I get my butt shots in the chemo room.  Curtains drawn so that is enough privacy for me, absolutely no pain and I use the same nurse.  Hot flashes are major!!

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Month No 49 is "behind" me. As I expected, the waiting room was packed today, filled with Thursday people and those that were trying to be slipped in following a very snowy Wednesday. Guess not everyone is as determined to receive treatment as Pam!

    To answer some questions, I get one shot at a time. The idea of a tag team injection makes my stomach turn. When I first started this treatment, I found the standing position to be too similar to a bad incident from my earlier years, so they found me a bed so I could lie down and receive my injection that way. As I became less sensitive, we moved to the standing position. Generally, I get one of the private rooms but sometimes I get a regular chair area with a curtain. At this point, it is all so routine that I am fairly comfortable with all of these places.

    Had some Pho for lunch and then slept for over 2 hours. And this was on top of a 9 hour sleep last night. Now I have to prepare some handouts for an important client meeting in the morning. No worrying about my blood work until tomorrow afternoon. I have no room in my life for being "sick" right now.  :-)

    *susan*

  • tina2
    tina2 Member Posts: 758
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    Nicky et al, 

    Re surgery, Faslodex and blood clots:  Today when I asked my oncologist if being treated with Faslodex posed an increased risk of clotting, he responded that simply having cancer causes an increased risk of clotting. He added that my surgeon is well-versed in working with cancer patients, and that the hospital has an expert pharmacist with whom he will consult. 

    Additionally, he suggested that it would be okay to push back my April Faslodex treatment for a couple of weeks, until I can get to his office. He also wants to postpone my 6-month scans (due in March) until my hip is well healed, which makes sense. He talked about possibly starting me on a bone strengthener, too. 

    Now back to team figure skating in Sochi!

    Tina

  • sespebadger
    sespebadger Member Posts: 11
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    Thanks for answers on how you get your shots.....I'll let you know how they do it in beautiful Oxnard, CA, next week!

  • cling
    cling Member Posts: 263
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    I found this chat at the end of last year, and glad Pam moved it to a new thread.  After vacation postponement in January, finally got my first Faslodex shots today!  Standing up in a private room in the chemo treatment center, three years since I last entered.  My tumor markers have gone up steadily, but in the past 8 months, 2 bone/CTs, 1 bone biopsy, and 1 PET/CT are all negative.  Onc did not think Aromasin is effective on me any more and suggested the injections.  Hope the SE will not be too bad.

  • Leah_S
    Leah_S Member Posts: 1,929
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    I had my first Faslodex injections yesterday, and I think I have THE BEST NURSE IN THE WORLD. She gave me a choice between standing and lying down on a bed - I chose lying down, so no difficulty with relaxing the muscle. Since I brought the drug with me it was already room temp, and she injected very slowly. No pain at the beginning, some discomfort after a little while but not what I would call pain, and no burning. Today I feel "something" when I lean in certain directions, but I would call it less than discomfort, more like "noticeable". The nurse told me if I had pain I should use something warm, not hot, on the area but I didn't need it.

    No other SEs so far.

    Sure hope it continues this way.

    Leah

  • NickyJ
    NickyJ Member Posts: 372
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    Tina, thanks for the information. I'll see the surgeon and the anesthetist on Monday, and my 2nd shots are due on Wednesday, so it'll be interesting to see if they say the same thing - I'll let you know!
    Leah, glad your shots went well!
    I'm still feeling nauseous, but I have something to take so its not too bad. I think I'll go and see my GP before the next shots though. I'll need another prescription for anti nausea meds If this is going to happen next time too!
    Nicky

  • Maureen813
    Maureen813 Member Posts: 1,826
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    so first tumor makers since end of November and they doubled :(

    The onc said to repeat in two weeks and sent me for a brain scan. I have constant ringing in my ears and feels like fluid is in there. Also need to go to oral surgeon for a consult because of jaw pain. I'm hoping faslodex is working but not optimistic right now  hope everyone is having a pain free day 

  • Tina72
    Tina72 Member Posts: 32
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    Maureen, I have heard faslodex takes a while to work and TM's can rise with tumor death. Hoping the best for you

  • Maureen813
    Maureen813 Member Posts: 1,826
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    so doc did a brain MRI and that came back negative but bone mets spread. See him on thurs to see next steps

  • RobertaH
    RobertaH Member Posts: 2
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    Maureen, I'm so happy the brain MRI came back clear, that's wonderful and hopefully the shots will begin to do their job and take care of the new bone mets! by the way I love your quote...very nice!  Roberta

  • Leah_S
    Leah_S Member Posts: 1,929
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    So far no SEs that I can tell. However, I'm so jetlagged (got back from the U.S. last week and still haven't adjusted) that I don't know if what I think is jetlag is an SE.

    Weird.

    Maureen, so glad the brain scan came out clear!

    Leah

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Maureen, well a clean brain MRI is a good thing. Guess we will see what the doctor thinks about tumor markers. They all seem to respond differently when folks have rising markers after a short time on Faslodex.

    Leah, welcome home. I realize that your trip to LA was not for a happy event, but I do sincerely hope that being surrounded by your American family was good for your heart. I have always imagined that this would be the hardest part of living abroad-- seeing your family so infrequently.

    My Friday clients seem to be spreading a nasty cold around, and it is possible that I am coming down with it. I wouldn't really care except two of those folks ended up with the dreaded pneumonia. Wish I could stay in bed today, drinking herbal tea, but alas, I am off to a different client. Clearly I will warn them to wash their hands etc. Though I washed mine on Friday, often, and still came down with this.

    *susan*

  • tina2
    tina2 Member Posts: 758
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    I've had much more than the usual pain and stiffness in the left side of my lower back following Thursday's injections, so I caved and am taking more NSAIDs and using a heating pad at night. 

    One again I'm trying to convince myself that it is merely (!) the Faslodex exacerbating arthritis in my problematic  hip, but this leads to my thinking "Oh bleep, what if I go through all the hoo-hah of a hip replacement and the back pain is still there because it's actually due to the Faslodex?"  (I know I have no choice about the surgery; it will help with other issues--little ones like walking--and the surgeon implied it will diminish the back pain. But what does an orthopedic surgeon know about the long-term effects of Faslodex injections?)

    And another thing, this one in the Dept. of Things The Nurse Probably Should Not Have Said: 

    Last week my oncologist's nurse, who gives me the injections, expressed her worry about finding an appropriate injection spot post-surgery, citing increasing accumulation of scar tissue and her desire to avoid the surgical site. When I asked if I could have both injections in the right buttock, she said no, it would be "too much."

    I told her she had two months to research the matter.

    Thanks for letting me sputter.

    Yours,

    Ms. Cranky N. Irritated

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Tina,

    Your surgeon doesn't have a clue about Faslodex and your hip replacement. No one has studied us and so they all get to blame each other for pain of "unknown" origins. As to your nurse, oh my. This is her job to know this stuff! I will say that it was only recently that two injections per month became the standard dose. I would think that "worst" case, you would get only one injection the month after your surgery. My first year plus was done that way with no bad effect. :: putting on problem solving cap :: or, you could have one injection on day 1, and another on day 14, same cheek. There was a study done with only one injection with the full 500mg in one syringe. The study was discontinued, not because of outcomes, but because the patients did find this to be too much month after month. But they dropped out over several months, not on the first one.

    This is what I've got....

    *susan*

  • Maureen813
    Maureen813 Member Posts: 1,826
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    thanks for the well wishes. Tina. I hope they figure out how to deal as you've done so well on the faslodex. My tumor markers seem pretty reliable and that makes me nervous  they've gone from 53 to 113 since November. He'll redraw on thurs and if still high change treatment. I really hate when he calls me because I know there is bad news somewhere mixed in with the good news. Great doc just wish something would knock this crap out. I will post more on thurs. 

  • 20130502
    20130502 Member Posts: 162
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    Maureen,

    Crossing my fingers for you. 

    Janet

  • Barb312
    Barb312 Member Posts: 64
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    Anyone have severe fatigue when first starting Faslodex?  I have just finished two cycles two weeks apart? So tired and down.

  • Leah_S
    Leah_S Member Posts: 1,929
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    Barb, I had my first injection last Thursday. I've been very sleepy since. At first I thought it was the jet lag (just got back the Monday before) but it should be diminishing, not increasing. Whenever I've had fatigue as a SE of tx before it's been weariness, can't do so much kind of thing but this is different. I'm sleeping so much!

    Tina, I remember reading once that of all surgeries, hip replacement was rated as the top for patient satisfaction afterwards. I hope you do well and it eases your pain and your walking improves.

    Susan, thank you for the welcome home. You're right about the difficulty of living so far from family. When we came to live in Israel (over 30 years ago) my parents were healthy, active people in their 50s. It was difficult and painful to be so far away as they aged. Every time I saw them the shock would hit again.

    Leah

  • Tina72
    Tina72 Member Posts: 32
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    just had my 21st injections....

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Fatigue is my major side effect from Faslodex. For me, the day of the injection, and the third day are the worst. I HAVE to take a nap; just not negotiable. I also find that starting three days before my next injection, I get fatigued more easily. Early on it was worse than now. It was as though my body became more adaptable to the drug once it learned what was expected. Funny way to talk about my own body, but that is how it feels.

    *susan*

  • Barb312
    Barb312 Member Posts: 64
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    Nicky, I also have nausea from Faslodex.  Do you take your nausea pill everyday?  Seven days after my second dose was the worse.  Today I am better and I am due for a shot on Friday.    Is it normal to have shots every two weeks for three times and then back to once a month. ?  My nausea pill is prochlorperazine 5 mg.  Directions say twice a day.  Thanks ladies for any comments.  Barb

  • Babyswim
    Babyswim Member Posts: 2
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    I am an official member of the "fanny pack". Had my first loading dose yesterday. For those of you I haven't met yet, I was previously in a thread for a trial +/- Palbociclib but had significant progression at 1st follow-up scans. Was then looking at a trial with Faslodex and BKM-120 but my MO did not want to wait any longer than necessary to begin 2nd line of treatment. So at my follow up visit yesterday they sort of sprung it on me. Luckily I had been following this thread so I had some idea of what to expect.

    Today, all I can say today is OUCH! I thought I followed all of the advice of the previous posters and did not really have any pain during the injection (although I nearly fainted.. I know I'm a wimp) today I am terribly sore... I was not given any instructions as far as heat or ice at the injection locations, just to stay hydrated. 

    Glad to have your support and hearing the length of time some of you are getting out of this drug is very encouraging.

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Loading doses are now common protocol, but that didn't exist when I started. I went to my doctor's office for the scan results, and left with a very unpleasant reminder that I had progressed, i.e. my painful butt. So glad that I don't have nausea, Barb, but at least they have given you something for that. Baby, there are months where the pain is more than others. I have found no rhyme or reason. My nurse does track where she gives my shots each month since the area is actually fairly small. I suppose I could download that information into a spreadsheet and analyze, but even I am not that compulsive! I hope that your nurse uses a different spot next time so you don't compound the injury.

    I have never used heat or cold on my injection sites so I am no help with that.

    *susan*

  • Lynne
    Lynne Member Posts: 368
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    Well, I got the bad news today. I had a kyphoplasty (number 4 vertebra, L5 this time) for a compression fracture on Fri. They did a biopsy because the could not tell by the CT/MRI/bone scans if it was from the cancer or from my bones thinning from the Faslodex. It is the cancer again.

     I started Faslodex when my cancer was first found recurring in my spine and lungs, in June 2012. It shrunk the tumors till there was only scarring for the ones in my lungs left, and shrunk my enlarged lymph nodes too. My last scans in Dec, showed the lymph nodes enlarging in my abdomen and pelvis area. I was sick with a stomach bug then day after my scans, so they redid them a month later and showed they were stable. My back was hurting worse than normal, so they did an MRI and found the compression fracture. My last treatment was 2 weeks ago on Faslodex and Zometa. I am seeing my oncologist on Friday to get the results from the biopsy (I already know from the radiologist's office). I did ask her what my next treatment would be. She said enverolimus (used originally for kidney cancer) and aromosin (which I took when I was first diagnosed, but had to get off of from the side effects. I tried all the aromotase inhibitors and tamoxifen, before stopping them all together). Not sure if they'll still keep me on Zometa or not.  We'll see if the Dana Farber breast cancer specialist agrees with her. I won't be sad to stop those shots, just sad that I have to move on to the next one and it means that my choices of treatments are growing smaller.

     I glad I got just over a year and a half with Faslodex and I wish all of you at least that much time or longer on it! Hugs!

    Lynne

  • Tina72
    Tina72 Member Posts: 32
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    I am so sorry Lynne. Keep us posted :\

  • susan_02143
    susan_02143 Member Posts: 2,394
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    Lynne,

    So sorry to hear that you will be leaving us. Hope that your next treatment plan treats you well.

    *susan*

  • Lynne
    Lynne Member Posts: 368
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    Thanks Tina and Susan. I will let you know how I'm doing! : )

    Lynne

  • NickyJ
    NickyJ Member Posts: 372
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    barb, sorry I didn't reply sooner. Yes, I take an anti nausea pill every day - Anausin Metoclopramide morning and night. I was taking it anyway for the day and 4 days after my herceptin infusions - I get nausea from that too!  When I got my first shots of faslodex it was the day after herceptin, so I was already taking it. I stopped on Friday and on Saturday the nausea kicked in. Don't know how I would have been without it; if it would've started earlier. I had my 2nd shots this week, on Wednesday, but took the pills straight away. So far so good!

    Nicky

  • Leah_S
    Leah_S Member Posts: 1,929
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    Did anyone get tinnitus with Faslodex?

    Leah