Faslodex Girls

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  • Tree3
    Tree3 Member Posts: 159
    edited June 2013

    Annettea, I've noticed my appetite has increased significantly over the past few months and I've put on 10 lbs. of course I don't exercise like I used to, but I just love my food. Hmmm, I have stage 4 feast cancer and I have to go on a diet? Is that OK.? Or is there something wrong with this picture .

    Tree

  • Tree3
    Tree3 Member Posts: 159
    edited June 2013

    Don't you love it? I'm talking food so my iPad changes the word to feast instead of breast. It really tries to think for me. Unbelievable.

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

    I will give a brief history since so many of you are "new." I was started on aromasin like many Stage II folks towards the end of my active treatment- December 15, 2005- to be exact. The first 18 months were a nightmare, but I stuck it out. I walked through the pain. I kept taking the stuff though. I was what they call "highly compliant." Sadly, I progressed on the aromasin, and my oncologist added Faslodex to the mix. No matter how little I ate during the five years, I could not loose any weight. After the Faslodex was added, I didn't even try and probably crept up about 10 lbs.

    When my oncologist died, I was transferred to someone new. She increased my Faslodex from 250mg to 500mg. The next November, as my hands were deteriorating significantly from the aromasin, we agreed that I could drop the aromasin. Three months later, I changed the way I was eating pretty dramatically. I was just tired of having my fat pants being tight. This was in February or March of 2012. And the weight dropped off. Well, it turns out, I had developed Graves Disease, so some of my weight loss is probably attributed to that. Now that I have no thyroid, I am working VERY hard to keep this weight off.

    So, for me, aromasin had a much worse effect on my metabolism than the Faslodex. I am down about 40lbs from my max weight. Strangely, I don't look much lighter at all. The weight has done that sink to the hips thing.

    I have had some back pain from the Faslodex, but none of the diarrehea or gas that is being discussed here. Some months I have waves of nausea for an hour or three after the shot. I can't really judge my appetite. I love good food. I make it. I eat it. But, what judging I can do tells me that compared to my hyperthyroid period, my appetite is back to just wanting more food than my body needs.  :-)

    All the best,

    *susan*

  • Tree3
    Tree3 Member Posts: 159
    edited June 2013

    Susan, thanks so much for sharing your "story". It's good for all of us to read it. It gives us hope.

    Tree

  • Annettea
    Annettea Member Posts: 21
    edited June 2013

    Tree3

    I love food so my thoughts are eat while you can and enjoy it while you can. You can always go on a diet. I m only 5 foot 1 in. So I hope I don't put to much more on.

  • Tish_13
    Tish_13 Member Posts: 67
    edited June 2013

    I have to laugh,

    Years ago I was working for a large department store that was going through a remodel. I was on the selling floor pinning dress shirts and a very pleasant older lady walks pass me, we both nod and smile. As she passes by I realize with each step she is "tooting" along! Latter my co workers and I all share a laugh that we could all become that little lady....someday...

    Well, someday is here and there are times that as much as I try not to...I just "toot" along!

    Tree, As far as dieting and stage 4 go, that would be adding insult to injury! A dear friend said the kindest thing to me a few months ago. Which was " what you are dealing with, you deserve some cushion , bon appetite".

    Night night all,

    Tish

  • Tree3
    Tree3 Member Posts: 159
    edited June 2013

    Thank you,

    Tish for that lovely, and funny ,post. I Think I've arrived at the same conclusion. No dieting, however I also think I need to look at those foods that will be good for me and make them a part of my diet. That and drink a whole bunch more fluids than I'm already drinking. That should do it. And up my exercise. Which shouldn't be too hard because I'd be starting at zero. I seem to have taken refuge on my couch ever since my diagnosis, Which was last August. So,,, time to Get up, girl.

    Always, thanks everyone for your support.

    Tree.

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

    Tree, Tish, Annetia, I am a fully-paid up member of the "when the going gets tough the tough eat chocolate" club. 

    As a result, lots of exercise.  Most of the time.  Well, some of the time.

    I discussed weight this week with my onc.  He said that women on Faslodex discover it's hard to lose weight.  Back in the days you could easily drop 5 pounds for that wedding next month?  Gone on this drug.  He did say one COULD lose weight, but not quickly.  He also said, bless him, that I should try to stabilize at a weight I'm happy with. 

  • Tish_13
    Tish_13 Member Posts: 67
    edited June 2013

    Yes, it is the drugs and I agree chocolate makes things better!

  • Annettea
    Annettea Member Posts: 21
    edited June 2013

    Hi everyone

    I am a girl that likes the really bad things like popcorn with a lot of butter and salt, potatoes chips, ice cream anything crunchy. Sometimes sweets and nuts and Dairy Queen ice cream cakes. That will out on a few pounds and of course all foods. Put something in front of me and I'll eat it seems like I'm always hungry. I do eat a lot of fruit.

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

    Well, Annettea, at least the fruit has fiber that will help move the other stuff through quickly.  Keep it up and maybe the calories won't stick! Wink

    Tina

  • Lynne
    Lynne Member Posts: 641
    edited June 2013

    Tina,

    Thank you for saying you were having the same side effects from the shots! I tried tramadol about a year ago for the pain. They said it wouldn't have the same side effects as vicodin and I would be able to work while on it. I was dizzier with the tramadol than the vicodin. I couldn't work or drive a car being like that. So I take 3 ibuprofen every 4 hrs (sometimes I can go longer) and use a heating pad for my back pain (spine mets) while I sit for 9hrs or more in front of a computer daily. I take the vicodin at night if I haven't had alcohol (which sadly, seems to work the best!) or don't have to work the next day( I get the dizziness for awhile the next morning sometimes). I wish they could find a non-narcotic drug for the pain. Because even when I take it, it doesn't seem to do anything for the pain, it just spaces me out, and I end up taking the iburprofen too.

    Good luck!

  • Denny123
    Denny123 Member Posts: 1,886
    edited June 2013

    I haven't posted for awhile since I thought that I would be going off Faslodex.  I am an 11 year survivor Stage 4.

    Had recurrence to nodes behind my sternum, and started Faslodex last March.  It seemed to help for a bit, but the nodes are larger and hotter and now my supraclavicular node is involved.

    So I just started on Gemzar this past Friday.  I had had Gemzar with Herceptin in a phase 2 clinical trial in Jan of 2004 for my liver mets.  My biggest met was 9 cm, with numerous 2cm mets throughout.

    After 9 months, my liver went into remission and I enjoyed 6 years of remission, until 2 years ago.

    Anywho, my tx is now Herceptin (which I have been getting for 10 years), Gemzar and Faslodex.

    So far so good with Gemzar, but as I read through my BC journal of 10 years ago, I am waiting for the hair thinning and severe bone pain.  We will see....

    Love to all....

    Denise

  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Well, tomorrow is shot day. 💀I just in the past week started having less pain in the right side injection site, so I guess it will begin again. Also, I will see the MO tomorrow and the RO on Wednesday to talk about my bone scan. I finally got up enough nerve to look at the report online (I had it on the 11th!), and it's not great. I have another lytic lesion, this time on my scapula. The lesion on my ilium, which was radiated, still shows lytic activity, but also sclerotic activity, which the report says, is consistent with healing. I need the doctors to explain all this to me, but I'm pretty bummed. For one thing, the MO said if there were any more mets, I really have to take zometa or something. I don't know what to do about that. I have a mouth full of crowns, and am so afraid of ONJ.

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

    Deep breath, MaryLW. Please try not to jump the gun before you get your doc's take on the bone scan report, although I understand why you would, particularly with your concern about ONJ. I would jump to the worst conclusion too, but I would also want someone to try to talk me out of it. So here I am!

    My back pain has lessened also. I have been keeping tabs for the past few months and can now say with certainty that it begins to diminish just about five or six days before I'm due for the injections.

    Hang in. Please keep us posted.

    Tina

  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Thanks for the words of encouragement, Tina. I'll let you know what I find out tomorrow. I have a feeling they're going to recommend radiation, because the RO wants to see me. I don't mind radiation much, compared to other cancer treatment choices.

  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Ok, I just saw the MO, and it's all better than I thought! He said the lesion on the ilium is healing. The high SUV numbers actually indicate healing bone. Also, the periphery of the lesion is sclerotic, which indicates healing. The new spot on my scapula is small and only mildly fluoride avid. He said we'll keep an eye on it, but that the Faslodex is enough of a treatment for now. My husband asked him what my prognosis is (I've always been too afraid to ask!), and he said I could easily live for several years. I have several hormone drugs that I can use, and then I can switch to chemo. Also...he didn't even mention bisphosphonates. I don't know if he forgot or decided to wait, but whatever, I'm happy to forego them!! The shots weren't too bad. As usual, the non-surgical side is fine, and the surgical side is painful with a lump. I'm using heat and massaging it, and I think it's helping. Sorry for going on and on, but I'm so relieved! 😌

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

    MaryLW, excellent news! I'm so glad for you. Now you can relax and enjoy the summer.

    As far as going "on and on," there's absolutely no need to apologize. Everyone in this forum has issued long posts at one time or another and, compared to many--including some of mine--yours is a telegram!

    Tina

  • Tish_13
    Tish_13 Member Posts: 67
    edited June 2013

    Yea MaryLW! That is great news. Tina is right, no worries about about thinking you are going too long, you are not and this is where you can go on and on if you want to!

    Today was Treatment Tuesday for me, on going Faslodex butt shots and my second infusion of Aredia. It was a late start as a lady who was on her first chemo had a "blue code". My prayers and thoughts go out to her and family. I was assured she will be OK by the staff as I was leaving. Made for a long day and I have an appointment with my plastic surgeon at 6 so I am going to squeeze in a short nap.

    Bottoms up,

    Tish 

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

    Subject: Severe Case of Pre-oncologist Visit Monkey Brain and a Very Weird Dream

    There's a lot of stuff going on in one part of my life right now, nothing life-threatening, just intense and involving a fair number of people, and fraught socially and politically.  It has required a lot of attention, juggling and careful treading between and among factions over the past week or so. I have other work to do and am quite distracted by all this, not to mention tomorrow's looming oncologist appointment and Faslodex treatment. Since I have such a good prognosis I can't figure out why I'm so antsy except that the injections will begin their cycle of pain once again and I want to get the appointment over and done with.

    I intend to beg the nurse to take even more time administering the shots ( she never takes more than 30-seconds, no matter how nicely I ask) and hope that makes some difference. I am already sick of taking NSAIDs and muscle relaxants every day and will admit to you alone that I resent having to take them at all.

    Last night's dream: I was among a crowd of dozens of hospital-gowned cancer patients who had all just had their various regular treatments and were feeling woozy/sick/tired. We were herded into a theater to watch a vaudevillian-type performer in a clownish baggy checkered suit dance a jig and sing an upbeat ditty about upcoming side effects, particularly that we must be ready to lose control of our bowels. I wish I could remember the lyrics!

    I woke up having hot flashes.

    Tina


  • Tish_13
    Tish_13 Member Posts: 67
    edited June 2013

    Tina, That was one crazy dream!

    I hope your oncologist appointment goes well and the RN slows down for you.

    I just popped another acetaminophen. Yesterdays Faslodex is pretty much SE

    free but the Aredia is making me feel like I have a touch of the flu....Bluk! So I will chill

    in bed with a cat or two and try to get outside later this afternoon. It is so nice out,

    as much as I enjoy a good nap I feel the sun may have a healing effect that I can't

    afford to waste!

    Tish

  • Tree3
    Tree3 Member Posts: 159
    edited June 2013

    Come on you guys that week of getting our blood read for tumor no.s can be earth shattering and getting worse every month, at least for me. I go in on wed to have my blood drawn, back on thurs. for Xgeva and faslodex shots as well as a print out of my markers.up? Or down? My numbers are still in critical areas yet they come down every month. On Friday? Well, i don't know if I'm emotionally shot, physically collapsed, being affected by the drugs or all of the above, but I have finally come to the realization that I must be left alone to collapse or let my body do whatever it has to do to react to the drugs. Saturday I'm usually back to me.

    Tina, be thankful it's only your dreams that are whacked. There are times when I think my life is.

    Teresa

  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Tina, I had my shots yesterday, and although the right side still hurts, it's much better than last time. I'm able to walk with minimal discomfort. Here's what I did--2 arthritis strength Tylenol and 5 mg of Valium before the shots, lots of massaging and heat the rest of the day, and ibuprofen in the evening and this morning.

    Aren't dreams nuts?? I was so afraid of that appointment yesterday, mainly because we were going to talk about my bone scan, which looked bad to me, that I also had a doctor dream. I was going into surgery, a week early for some unknown reason, and my surgeon was my (now adult) kids' pediatrician, who is probably dead by now. The nurses were complaining about my insurance, and saying I could stay in the hospital for only 4 days, but that 2 of them would be before the surgery. Oh, gosh, even in our dreams we can't be healthy!

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

    These dreams are very telling. What does it say about me that I just clunk to sleep and don't remember a darn thing about my dreams? I do clunk, but am getting about an hour less sleep than my body wants. This aging stuff is NOT for the weak.

    I am hydrating like crazy here which isn't easy during such hot weather just hoping for an easy blood draw. And of course, I am really, really, really hoping that this month is one of the easy ones for the Faslodex shots. I don't like dread or fear very much; and for the past few months dread has entered my vocabulary.

    Best to you Tina tomorrow.... [still need to PM you, life is out of control right now]

    *susan*

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

    Thanks, all. Wonder what's on Dream TV tonight?

    Bottoms up!

    Tina

  • Granna1948
    Granna1948 Member Posts: 77
    edited June 2013

    Well I've only been on this thread about a week, but guess this will be my last post. My bone scan showed four new tumors, so I'm off the faslodex. Can't say I'm sorry to be off of that stuff, but wish it had worked. My onc is looking into aromasin and afinitor, but doesn't know yet if I can take the afinitor with my herceptin. Has anyone been on either of these drugs? If I can't take them, it's on to chemo.



    Good luck to each of you.



    Granna

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

    Granna,

    Oh how disappointing that you didn't have time to see if Faslodex would work for you. I was on aromasin for over 5 years, but never in combination with affinitor. Herceptin isn't one of hte drugs recommended for me either, so I can not help with this question. Whatever combo you end up with, I hope that it is your magic answer.

    *susan*

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

    Dear Fanny Pack,

    My report from Thursday's onc visit and injection:

    There is a gradually diminishing goose egg on my left buttock and the usual deep ache in my back, despite the nurse injecting the Faslodex more slowly than ever. She actively listened to my theories about Faslodex causing most of my back pain and appeared to be receptive to the possibility of cumulative scarring and other issues caused by long-term intramuscular injection.

    The blood draw produced the worst bruising yet, a large purply mass and satellite splodges all over the interior of my elbow. Was I not hydrated enough? Is it the NSAIDs?

    My oncologist said "You look well." (Do you think this was because I was wearing lipstick?)

    Granna1948, I too hope that your next treatment is the one that takes out those mets. Best of luck! Hope to see you around the forum.

    Tina

  • MaryLW
    MaryLW Member Posts: 2,172
    edited June 2013

    Wow, Tina, that does sound bad! Do you get injections in each glut and only have trouble on one side? I used heat and massage on my bad side this time, and it helped a lot. I don't know about the bruising on your arm. Sometimes I have it and sometimes I don't, and I don't know why.

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

    MaryLW, thanks, but I'm okay. Yesterday was was pretty much no different than it's been with me all along. Sometimes I get big lumps on my butt and sometimes not, but I always get the pain in the back and it lasts for weeks. My nurse forbids me to use heat until at least several days have passed since the injections. She insists that doing so would cause an absorption problem, I assume from the stuff being dispersed too rapidly.

    Tina

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