Faslodex Girls

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  • Tillycat
    Tillycat Member Posts: 130
    edited June 2012

    Chemo for me

    Haven't been on hormonals since early 2009

    Mx

  • Anne45
    Anne45 Member Posts: 1,037
    edited June 2012

    Smiley2 I was on femara before faslodex.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited June 2012

    I hope everyone is doing well. Just thought I woulod give this a bump LOL.

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2012

    Tomorrow is Faslodex No 27 for me. Seeing the aging parents thread to see what the week leading up to this treatment has been like. A hospital day will be a day at the spa compared to this!

    *susan* 

  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2012

    Susan, I checked out your posts on the aging parents thread and understand how your treatment day tomorrow might be a day at the spa in comparison. Good grief, what a saga. I agree: you deserve a medal--and more.

    I too am having my treatment tomorrow, and will think of you enjoying a bit of peace and quiet.

    Cheekily,

    Tina

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2012

    Treatment day is over. To prepare, I had salt and pepper squid from a wonderful Northern Chinese restaurant, and I drank 2 litres of water. Not enough. The blood draw this week was bad. I actually screamed when the needle went in, and to add insult to injury, the red blood cells were damaged so all my blood work has an asterick this time.

    Dr. Christina was very happy with my tumor markers. The jump three months ago doesn't concern her since the subsequent three months have been steady. She considers this stable; stable with NED. We have agreed to hold off on scans until September. We had a long talk about why she orders PET/CT scans and not CT and bone. I like her reasoning and feel very comfortable with her choice.

    Onto the infusion room. For some reason, this month the injections were not as painful [esp left side] as usual. Today I am starting to feel the Faslodex moving around, but nothing that is wildly bad.

    Blood test results show that in fact I do have thyroid issues. Guess I have to go back to the endro and eat some dirt. Damn, more drugs.

    And so Month 27 is over. 

  • reesie
    reesie Member Posts: 2,078
    edited July 2012

    Ok, I experienced vomiting the first 24 hour after my injections this time but I can handle that with anti nausea drugs. However yesterday and today my bones are killing me. I can't take opiods because they make me sick (migraines the next day) and no anti inflammatories (advil, naproxen) because my platelets are low. I can't take glucosamine-chondroitin because I'm highly allergic to seafood.



    So does anyone have any tricks for the pain? Does Claritin work like it does for Neulasta?



    And most specifically do any of you on Faslodex for a longer time find that the SEs get better as your body adjusts to the med? My shots Tuesday were just my second loading dose. Get to do this again in two weeks. Really looking forward to it (not).



    One good thing no pain at the injection sites so far, thanks to all of your tips.

  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2012

    Reesie, the initial side effects of nausea and hot flashes from Faslodex slowly dimished over the past year for me, to the point of their becoming almost non-existent with the last three injections. Injection site soreness and lower back pain continue, but I am sure the latter is estrogen deprivation exacerbating arthritis. (I was taking NSAIDs, and they have helped a lot, but was warned by two doctors that they will do my innards no good. So stopped taking them. And the back and hip pain have returned. Ai yi yi.)

    Hang in. If my experience is any guide, your body (and head,no doubt) will become at least somewhat accustomed to this stuff, and you will tolerate it a bit better each time.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    ressie, I had severe pain with my first injections, not near as bad with the second and the third was much much better. I do get nauseous with it but take Phenegran and tums and it helps some. I take opiate pain meds. OTC stuff is ineffective for me. However Benadryl does reduce inflammation. Might be worth a try. It will get better. I just finsihed my loading doses and am so glad they are over. Hugs and luvs, Mazy

  • Aerial
    Aerial Member Posts: 194
    edited July 2012

    Tina, my side effects experiences have been alot like yours and I've have doctors warn me about NSAIDS, too.  I get an infusion of Zometa with my injections so, it's hard to know what is causing what sometimes.  The drugs are working for me, so I hate to complain.  Still, this off and on pain, that worsens  "here and there" can really get me down.  Oh, and now I have lymphedema to add to my list of irritants!  I go to physical therapy for a special massage  2-3 times a week and will need to wear a compression sleeve (maybe not all the time though).  Good greif!

  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Hi girls!

    Had my ct and bone scan results faxed, looks like Femara and I will be parting ways and I will become a member of this group. I got almost 2 1/2 years on Femara, and am very thankful for that.



    I do not have bone mets, I am a lymph node girl.



    I do have 2 questions and I am sure you can help me out. I see the Onc on the 12th. If he schedules the first shot for the following week, that puts me around the 20th. Hows the first week after the injection? I have a cruise scheduled for 9/20 and don't want to screw up that week. Should I ask to start a week later? 2nd question....do you drive yourself to the injection?



    Thanks for helping me get ready for this weeks Onc appointment.



    Hugs....

    Robin

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2012

    Robin,

    As you will read, we all have different reactions to this drug, but overall, this is easy stuff. I certainly drive myself to the appointment and then back home. The injection itself can range from very painful to almost painful. My nurse and I can not for the life of us figure out why some months are worse than others. For me, the left side has been the issue. Again, why one side and not the other? Can't imagine.

    After 2 years, I now get a bit of nausea the day of the injection and of course, my butts hurt! The level of fatigue that I experience in the first few days post-injection has increased a bit as well.

    I can't imagine that a cruise would be a problem at all! I allow myself one day of self-pity which includes going out to eat the night of treatment so someone takes care of me just a bit.

    Do make sure you read the earlier tips on positioning your body for the injection, and make SURE, absolutely SURE, that the Faslodex has been brought to room temperature before allowing them to start the injection. The difference between a cold Faslodex and a warmed Faslodex is HUGE.

    Welcome to our club. I hope that the Faslodex works for you as well as it has worked for me.

    *susan* 

    p.s. Overall, my side effects on Faslodex have been much less severe than the aromasin that it replaced. 

  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Thanks so much Susan! It certainly sounds doable (like that is an option!?)...and you have made me feel better about it. Thursday is my appt and I will find out then for sure. Would be a real treat to get some of this Femara weight off!



    Hugs!

    Robin

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Robin I have been slowly losing weight since I went off Aromasin and on Faslodex. I hope all goes well at your appt. Hugs and luvs, Mazy

  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Thanks Mazy.  You mentioned you just finished your loading doses.  Can you please explain to me what that means and what timeframe they were done in? Still trying to make sure I feel decent for our cruise in September!  Thanks

    Hugs

    Robin 

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2012

    Robin,

    I didn't get the loading doses that others who started after me have gotten. When I started on Faslodex the protocol was one shot every 28 days, no loading. But the studies that have been published since then indicate that 2 shots per month has better outcomes. Unlike some other injections, Faslodex doesn't have a "first time worst" side effects.

    I am sure others will be by to discuss how they felt after the loading injections.

    *susan* 

  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Now I am confused! Lol. Loading is different than double doses? Are you saying I will be getting 2 shots a month? Can someone tell me, are they on the same day?

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2012

    Robin,

    One dose includes two syringes. Every month you get two injections-- one left butt, one right. They are on the same day, every 28 days. Hope this helps.

    *susan* 

  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Thanks Susan!



    Hugs!

    Robin

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Robyn..My loading doses were given every 2 weeks for 6 weeks..so a toal of 3 loading doses. A dose is actually 2 injections, one on each side of ur hip. The first dose was a doozy. HUgs, Mazy

  • ductal
    ductal Member Posts: 65
    edited July 2012

    Dawn  How are you?  I get results today and may have similar story.  Dx 2004!!  Dang lobular!!!!

  • Rana
    Rana Member Posts: 24
    edited July 2012

    Hi Everyone, I am new to Faslodex, I start next month.  I didnt realize its an injection in the muscle, that's the first problem; second problem, from what I'm reading here, there is pain associated with the Faslodex.  Are any of you pain free from it? If so, I would love to hear about it!

  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2012

    Rana, there is a LOT of information about personal experiences with Faslodex on this forum, and it ranges the spectrum. Some people have pain. Some don't. Follow this Faslodex Girls thread back to its beginning and you'll see. Check out the Hormonal Treatment thread too.

  • Nanaskids
    Nanaskids Member Posts: 17
    edited July 2012

    Hi Tina, I've been on Faslodex for 7 months now. What I have found helps is to warm the shots at room temp. They keep them in the fridge and given cold they will hurt. The nurses where I go know this. There is some ouchyness at the injection site but not enough to be a big woop! I'm also taking Xgena, it too is a injection once a month. For now I get very tired the day of and several days after. I work and take care of my 3 grandchildren. Don't get alot of chance to lay around but for now it is tolerable. I have gained about 6 pounds and I feel the being tired is attributing to it. Wish you well my friend.

    Judy

  • Judy1992
    Judy1992 Member Posts: 44
    edited July 2012

    Hello Faslodex Girls.  I am in need of your knowledge, experience and suggestions.  Have been on Arimidex for 33 months for soft tissue mass in my chest near my sternum and lymph nodes. Had 30 rounds of radiation (IMRT) Nov/Dec 2011 and just had PET scan in June which showed NED in chest, but a new finding of one area of bone mets to my left femur.  I am going to be starting Faslodex and radiation therapy has also been recommended.  I've been considering doing the loading of Faslodex (injections on days 1, 15, 29 and the first monthly injection and then do the radiation.  However, after additional research and reading the boards and with the caution from my medical oncologist that we should not go too far out before doing the radiation (I've been off Arimidex since June 26th), I'm now concerned if I'm making a good choice.  Wondering if anyone has done radiation to their leg at the same time that they started Faslodex or if they did radiation first (I'm told 10 rounds) and then started the Faslodex, or if they started Faslodex and then did radiation.  *Whew* ... sorry about that last sentence - sounds like a multiple choice quiz! 

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2012

    Judy,

    My radiation was done years before I needed the Faslodex. Sorry I can't be off any help, but maybe someone else will chime in. With my reduced brain cells, I can't remember anyone on this thread discussing this.

    *susan* 

  • RobinNY
    RobinNY Member Posts: 766
    edited July 2012

    Hi everyone.....I am officially a Faslodex girl now.....bye bye to Femara. I had my first loading dose on Thursday....thanks to all you wonderful ladies who shared your experiences....mine went well. I had a "float" nurse who knew nothing about warming the drug, but was very happy to wait until I was happy with the temp. She did know how I should stand, and I honestly felt nothing on my right side. My left was achy before the shot and I did feel it go in, but it wasn't horrible. I am a little sore, but manageable. Hope the joint pain diminishes now...Onc said it may! Mazy and Susan....kudos to you both for all the info, PM's and hugs! I'll be around to meet the rest of the group...I'm still working and not a daily poster...but I'll be around.

    Much love and hugs...

    Robin

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Robin, Im glad it went well for you. You have been on my mind and am relieved. HUgs tc, Mazy

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2012

    Judy I took Aromasin same time as rads whith my first bone met. I had no problems at all. Did u ask ur oncologist about this? HUgs, Maz

  • Judy1992
    Judy1992 Member Posts: 44
    edited July 2012

    Susan and Mazy, thanks so much for responding.  I have appointments with a local medical oncologist this week re the Faslodex and with my radiation oncologist next week.  Learning on Friday that I do need to move ahead with radiation in addition to doing the loading of Faslodex brought me to the boards to read more about Faslodex and see if anyone had rads at the same time.  Thanks again for sharing your experience!  *hugs* back to you....Judy

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