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Faslodex Girls Thread

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Comments

  • kaydeesmiles
    kaydeesmiles Member Posts: 201

    Well, 1 down and ??? to go. I followed the advice in here and everything seemed to go ok. Asked to make sure the meds were at least room temperature, took as much pressure off my legs as possible and slowed one of the nurses down when the shot was going in too fast and burning. Thank you all for the tips.

    fujimama - I had big plans to take a mega walk afterwards, but like you I just want to sleep. Just took a couple of slow laps around the block and now I'm going to listen to my body and nap.

    cling - I had my first Xegeva shot today so am not much help - but I'd be interested to hear how the other tolerated it as well.

  • MlooReid
    MlooReid Member Posts: 5

    Thankyou everyone for the welcome.  I have Xgeva injection every two months and Faslodex monthly.  Have been on Xgeva longer and have not noticed any major problems.  I am quite tired though and during the week after I have both Faslodex and Xgeva I just need to rest quite a bit. 

    The only thing I am not happy about is that my body shape seems to be different.  I have put on a bit of weight but it seems to have gone to my rear end.  Is this a coincidence that my weight gain seems to be where injection is done.

  • pajim
    pajim Member Posts: 930

    I lost my waist about two weeks after the first shot.  Freaked me out.  So yes I think it's a coincidence.  Its probably wherever you tend not to gain.

    I've been getting tired after the shots.  I used to be fine; it feels like a cumulative effect.  Not good when I go back to work and all I really want is a nap!  Last month I had to apologize after [literally] yawning my way through a meeting.

  • tina2
    tina2 Member Posts: 758

    I have gained at least 20 pounds, thickened all over and acquired a distressingly large tire around my middle since starting injections three years ago.

    Coincidence? Maybe, maybe not. (A metabolism slowed by estrogen deprivation? Lack of aerobic exercise? Depression? Age? All of the above?) But sometimes I do wonder if the drug that probably is saving my life in one way might take me out in another related to weight, say a heart attack. Sorry for bringing this up, but this thought been at the back of my mind and now I'm sharing it.

    Tina

  • kaydeesmiles
    kaydeesmiles Member Posts: 201

    I hear you Tina.

    When I first started with all of this I was reading that many of the meds came with weight gain for a lot of women. And I remember thinking to myself that if I'm ER+ and estrogen in stored in fat, why feed me something that's going to give me more places for the estrogen to hang out in?

    OAN: Is anyone here pursuing an integrative approach to the meds? Combining them with natural treatments?

    Karla

  • fujiimama
    fujiimama Member Posts: 236


    yay made it through the weekend. Got a knot on one side. I got really tired. Is that pretty normal. Took my Ritalin this morning with my B12 mix. Feel almost human. Had a good laugh with my mother in law about hot flashes. I've been in a lupron menopause for a few years. But this stuff....we'll see. As long as it's not as bad as femera. I hated that. Like aromasin, but it did nothing for the Mets.

  • highhopes
    highhopes Member Posts: 51

    Hi Cling,

    So sorry that you're having such side effects from the Xgeva.  I've been on it apprx 18 months and luckily have not experienced any of the side effects.  Are you taking calcium supplements with D3?  My calcium levels weren't low but I was told to take 1200 mg of calcium with D3 per day.   Sending you good wishes that the side effects diminish soon and you're feeling better. 

    Highhopes

  • cling
    cling Member Posts: 263

    Thanks Highopes, I do take calcium and D3. I was not sure the tingling on right hand and fingers are from Xegeva, but that was the last medicine added to my list.  So before I blame it on Xegeva, I want to know if other people taking this med have similar problem.  I guess from the responses, the tingling on finger is not a common SE from Xegeva.

  • susan_02143
    susan_02143 Member Posts: 2,394

    Haven't had the time or energy to update my Faslodex news. The short report is that my new nurse is far more aggressive about the injection. The push was fast. Strangely, the injection itself hurt less than most months, but my butt cheeks hurt in new and different ways all month. Clearly, I need to talk with her tomorrow. I can't have this type of discomfort if it isn't necessary. Tomorrow is my oncology appointment and Injection Month 57. I haven't seen my onc for about 5 months so she will be eager to see how I am doing. I should have seen her a month or two ago.

    And then I will nap.

    *susan*

  • susan_02143
    susan_02143 Member Posts: 2,394

    Whoops... I am a full day off. Today is a client day. Thursday is my hospital day. Way too busy here to keep up with my own schedule! Ack!

    *susan*

  • tina2
    tina2 Member Posts: 758

    Susan, good catch. Otherwise you may have absent-mindedly made a highly unusual "presentation" to your client.

    Bottoms up!

    Tina

  • highhopes
    highhopes Member Posts: 51

    Hi all,  hope all is well.  I have a question, I would say a stupid question but was told a long time ago there are no stupid questions, so here goes.  How do you count the 3 to 4 months to see if the markers go down?  My onc said it was 3 months in Sept but by my count that was 2 months.  The loading dose began at the end of July - Had 3 shots every 2 weeks until the end of August and then the next one in Sept.  My markers have been going up since I began Faslodex.  I'm scheduled for a bone scan and cat scan next week.  Based on the outcome, my meds may change.  I'm a little confused as I'm active and feel great. 

  • susan_02143
    susan_02143 Member Posts: 2,394

    Since I never had the loading doses, I can't help with that counting. In my world, I count the 28 days between injections as one month.

    Hydrating, hydrating ...

    *susan*

  • cling
    cling Member Posts: 263

    Highhopes, I was told by my second opinion doctor of MD Anderson, Faslodex will take 6 to 12 weeks before showing effect.  

  • arenswife
    arenswife Member Posts: 3

    Hi there! I'm new to the board, not new to cancer. Firstly, I'd be uncomfortable if I didn't know my tumor marker. I see mine online & my oncologist talks to me about it. I know I have a lower baseline, but I also know great numbers. I have blood drawn about ever 3 months or so & I like that schedule. 

    Now, I've been on faslodex since March 2012. Are the shots painful for anyone else? At first, no pain, then got increasingly worse until I had an allergic reaction. I get pretreats but the shots still hurt like hell. I used to get a shot of dilauded to help, but I built up a tolerance & stopped. Any suggestions? My team wants me to power through since it's working so well.

    Also, I've had some pretty significant weight gain. At first it was 20 lbs, ok. Then, I had a terrible fall & broke the hell out of my ankle & became immobile for months so that didn't help. But now I've gained 50 lbs!!! And I can't get it off!! It's thrown my self-esteem in the trash & made intimacy uncomfortable. I feel huge! Before cancer I was 135, afterwards I was happy at 145-150...but now I'm at 190!!! I feel gross in everything! I never overeat, food has never been a problem for me. I started yoga & swimming & so far I've list 2 lbs! Does it ever come off? I'm terrified it won't because my treatment is indefinite! I'm only 36 & I don't want to be seen in any state of undress!!!

  • MlooReid
    MlooReid Member Posts: 5

    hello Arenswife

    The Faslodex hurt like hell for me too but better if warmed in my hand for at least 20 minutes prior.  When I get home I also massage the sites gently for about 1/2 hour each.  This seems to help.  Faslodex is literally a pain in the arse!  But working very well for me.

    I see my encologist every three months and just prior I have full blood test as well as Tumor markers.  I take a copy for myself as I like to see what is happening.

    I too have had the weight gain which is very difficult to shift one gained.  I try and go to the Gym and walk at least 1/2 hour each day.

    Sending you my love and a big hug

    Mary-Lou

  • Cspeaks
    Cspeaks Member Posts: 1

    Hey girls. I am new to this site. Just started Fas. I've had my second set of injections. Still in the loading phase. No significant side effects, just a little nausea and fatigue on day of injection. 

    How long does it take to start working on tumor reduction? 

  • pajim
    pajim Member Posts: 930

    @arenswife it sounds like your body is having quite the reaction to the drug.  I gained weight but can only attribute about 7 (of 14) to Faslodex.  I haven't gone on a serious attempt to get my weight off so I have no idea whether it can be done.  As for pretreatment, assume you tried benadryl or some such?  Maybe steroids rather than pain meds?  I'm grasping at straws -- no real idea.  Maybe someone else has a suggestion.

    @cspeaks,  The general consensus is it takes a while for Fas to do it's think.  3-6 months.  I can't speak from personal experience -- radiation zapped my cancer cells and I take Faslodex for maintenance.

    I do have a question for the group.  Has anyone found that the shots affect their mood?  I'm gloom and grump today (shots yesterday).  I remember last month having the same issue but chalking it up to the weather.  Like PMS.  Can't remember the months before that.  I'd love to attribute it (along with everything else) to the meds.

  • steelrose
    steelrose Member Posts: 318

    pajim... yep, Faslodex sure seems to make me moody for a day or two after the shots. I'm on an Arimidex/Faslodex combo, and I'm grumpier than ever! Blech!

    I won't have a CT scan until Dec, but Faslodex seems to have magically made my skin mets nearly disappear, and I'm only on my third month. At least I think it's the Faslodex??? In any case, the side effects will be worth it if it keeps working!

    Wishing everyone the best...

    Rose.

  • arenswife
    arenswife Member Posts: 3

    I'm definitely going to try the warming in my hands on Wednesday!! Thanks for the tip!!

    As far as moodiness, I guess it could explain some things, but it all came at me @ once so I don't know if it's the faslodex or me reacting to my diagnosis. Everything happened really fast, got pet scan results on a Monday, had surgery Wednesday, & started treatment Friday all within 5 days. I've been on faslodex for over 2 1/2 years & I know it is working, there are just some prices to pay.

    My pretreats are benadryl & solumedrol. The benadryl has to be in low dose since I have the opposite side effects (restlessness, not sleepiness) & solumedrol shouldn't be the cause of weight gain. I have so many meds that cause weight gain so I got bombarded & my system isn't allowing me to lose any. Thank you Mary-Lou for not letting me feel alone in the weight department! I'm having my breast surgery after the holidays & hoping to use fat from my oversized arse to rebuild! Wondering if that's the only way to kill two birds with one stone kind of deal. Who knows. I just wish I felt better about my body.

  • tina2
    tina2 Member Posts: 758

    I hear you, arenswife. My oncologist always asks how I'm feeling. At yesterday's monthly appointment, I mentioned my ongoing back pain (ho-hum) and my steadily increasing weight. After gently suggesting the latter could be exacerbated by the former and that both would be helped with more exercise, he said, " The weight gain may be partly due to the treatment. It (Faslodex) slows down metabolism."

    So there you are. We probably have to exercise three times as much as the average post-menopausal woman just to keep the encroaching fat somewhat under control. How can we do that when our wagons are draggin'? It's Catch-22!

    Tina

    P.S. One injection site bled quite a bit and bruised this go-round. I have a big, sore reddish-purple lump on my right cheek. It's been months since this has happened. Maybe I was holding my leg stiffly. Maybe the nurse hurried or got distracted. I don't know; we're always blabbing!

  • Mamita49
    Mamita49 Member Posts: 58

    Hi Ladies,

    Sorry, I dont post much. I just came back from my 4th infusion. I will have scans in November. Could really need some of your prayers and thoughts, as I always have you girls in my prayers included. I feel pretty good, legs a bit weak, the running is not that much anymore, but walking and on the bike as much as I can. I have nausea, and usually I take the organic gravol ginger roots. Its enough for me to get rid of the nausea, and its not having the usual gravol SE. Wish you all good luck.

    Carol from Montreal

  • kickincancer
    kickincancer Member Posts: 3

    Looking for some advice here about how long Faslodex takes to work.  I was on Femara for 27 months and it worked well on my lung nodules but one stubborn one just wouldn't go away and it started to progress.  My onc put me on Faslodex in July.  I just had a ct scan and the nodule went from 1.4mm in May to 1.9mm in Oct. It had been growing 1mm per month for the past 9 months. Onc is not too concerned.  I spoke to him about having it removed.  I have an appt next week to meet with a surgeon to see his thoughts.  The onc said that since that there was a lapse of when I had the last scan and when I started the Faslodex not to freak out if it got bigger. (Freaked out anyway).  But I think that at least the Faslodex would have slowed it down.  So, I just wanted to see how long it took for it to work on others before I jump the gun and get it removed surgically.  Another onc confirmed what my onc said as well.  If Faslodex does not work at all it has to come out because we need to see if it comes out Her2+.  Original mets biopsy was equivocal, but I was HER2+ on my original dx.

  • Adnerb
    Adnerb Member Posts: 727

    Hi All,

    I just received my first 2 loading shots of Faslodex! I am finally in this group, hopefully for a very, very long time. I have been waiting since April of this year but it could not happen then because my chemo stopped working and I had to try another chemo to get regression of my metastasis. Well, my last scan was very good, so MO thought it was time to stop present chemo and start Faslodex. My MBC is 45% ER+, and it progressed on Femara.

    I'm glad to be here! Whoop whoop!

    Brenda

  • pajim
    pajim Member Posts: 930

    Welcome Brenda!

  • tina2
    tina2 Member Posts: 758

    Adnerb, welcome to the Fanny Pack. Bottoms up!

    Anit

  • terri-c
    terri-c Member Posts: 65

    Hi all, sorry for not hanging around more. Between work, treatments, and the bucket list I've been pretty busy.

    I have a question for you all....do/did any of you have ovary mets? The Lupron wasn't working (was supposed to shut down my ovaries) so they took them out and found mets in them. There is also a new "lesion" in my right lung that is too small to biopsy and it is 50/50 whether its a new met or damage from the radiation I had in May.

    I have mets in the spine, hip, liver, adrenal gland, and now found in the ovaries (both), and possibly the lung.

    I think I just REALLY need to hear that someone else has mets like me and have survived for years.

  • Adnerb
    Adnerb Member Posts: 727

    Ha ha ha, Tina! I can't believe so many do not get it the first time! You are definitely quick on the uptake, that's for sure.

    So I had my last infusion of Abraxane this morning. Then my MO did not waste any time and ordered the first 2 loading shots after chemo. 1 minute on each cheek. I told my very nice, British nurse that she's lucky I'm not a donkey! I would have kicked her! She laughed so hard and gave me a big hug. I think she will try slower next time.

    terri-c: I have stable/healing mets in the lining of my left lung, 3 healing rib mets and T5 with scar tissue from mets I did not know I had. But it's only been a little more than a year.

    We have numerous posters here and in other threads who have had mets for many years.

  • MlooReid
    MlooReid Member Posts: 5

    Hello all and kickincancer

    My bone mets found @ July 2012. Tumor marker CA15.3 was 54 and was not considered that high. anything above 30 considered high). Even so my L5 vertebrae was crushed to have the size and fractured. Initially put on Aromasin with monthly injection Xgeva. Also had 10 rounds radiation fairly quickly. After radiation Tumor marker dropped to 32.5 20/08/12 then 9/19/12 dropped again to 19.7. Faslodex was then added from February 2013 when scans found other areas of bone affected. Tumor marker on April 2013 showed further drop to 16.8

    Since then my CA15.5 has stayed stable lowest being 13.7 highest 17. My encologist says this variation is of no concern and I am extremely happy with my current situation. My last bone scan is saying I have "healing metasticies"

    On australian news recently the Garvin Institute was doing research on Bisphosphonates (example being Fosamax) type of drug used for osteoporosis and saying that their research found that these types of drugs seem to help the immune system find the cancer cells and kill them. If I hear any more info I will post. Will also ask my encologist when I see him approx two weeks. I am now on Xgeva but I am not sure if it is the same family.

    Mary-Lou.



  • susan_02143
    susan_02143 Member Posts: 2,394

    welcome Mloo,

    Faslodex is not a Bisphosphonates. Perhaps you are confusing it with Fosamax? Will write more later, but my first cup of coffee is calling me!

    Here is a little chart that I found:

    http://www.drugs.com/drug-class/bisphosphonates.ht...

    *susan*

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