Faslodex Girls

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  • SyrMom
    SyrMom Member Posts: 862
    edited September 2012

    Susan, so very happy for you!  Wonderful!

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

    Treatment day is today. So much easier to get up and head towards a hospital when you know that you are getting the results you want.

    *susan* 

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

    Alert: this is a crabby post. My treatment day is today as well. As grateful as I am for their (apparently) rendering my lung mets stable, I dread the Faslodex injections today. I already have a severely arthritic hip and the Faslodex makes it and my arthritic back feel worse than usual for at least three weeks, slowing me down and inhibiting my physical activity.

    As icing on the butt, last month I had an extremely painful reaction to one shot as it was being injected.

    Thanks for letting me whine about that. A saint I'll never be. Next subject: today my onc and I will discuss whether my recent PET-CT scans indicate I can have TomoTherapy. Nothing "glowed" on the scans, so I don't know if that means I can have targeted radiation on the lung mets, or that I should not bother until they become active again. Frankly, I like the idea of frying them, but my onc thinks there are other mets lurking in my lungs and elsewhere. I think he may be implying that the TomoTherapy may be a waste of time and money, good only for psychological reasons. I will try to determine his take on it today. As far as I am concerned, I don't want to have pointless radiation that may harm other healthy areas of my lungs.

    Thanks for letting me ramble. Now I've got to get some work done before I head out.

    Tina

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  • Annie62
    Annie62 Member Posts: 1,081
    edited September 2012

    Susan - what wonderful news. Congratualtions! Thanks for sharing.

    Bobbi- I've read that the tumor markers can jump on faslodex and then come back down. I don't know the specific numbers. If you read back in the thread, especially the first few pages, I think there are some posts about this.

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  • BaseballFan
    BaseballFan Member Posts: 859
    edited September 2012

    Thanks Annie.....patience is not one of my virtues!  I really need to work on that......

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

    Tina,

    Go for the crab! I am so sorry that you are having so much secondary pain from your Faslodex shots. It just doesn't seem fair. My left buttock shot always hurts like HELL as it goes in. Some months I have aches for several days, but then some months, by the time I am in my car, the pain is totally gone. See my other post from today. For some reason, I am just getting the lucky straw.

    I really want to know what you and your oncologist decide at your next meeting. Even if it means you leave the Faslodex group.

    *susan* 

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

    Susan et al,

    Ta-dah! Today my oncolgist confirmed that my lung mets are mere shadows of their former selves on the recent PET-CT and not metabolically active! Faslodex may be a continuing pain in the back and butt, but I'm staying the course. After all, the stuff got me to virtually NED in 14 months!

    As for TomoTherapy, we're holding that prospect in reserve for the moment, which is fine and dandy with me. 

    I'm sitting in one of our new rocking chairs on our little front porch as the sun is setting on a gorgeous September day. The bugs are coming out, but I don't care. In a minute I'm going into the house and invite my partner to join me on the porch in a celebratory glass of wine.

    Tina

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

    Tina,

    You ROCK! [literally] Make sure it is a good glass of wine. Today is a day to celebrate.

    *susan* 

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  • Annie62
    Annie62 Member Posts: 1,081
    edited September 2012

    Tina - Doing the happy dance for you. Yippee. Enjoy your wine.

    Annie

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  • SyrMom
    SyrMom Member Posts: 862
    edited September 2012

    A quick update ... my tumor markers were run for the first time since beginning faslodex (began in July with 3 loading doses) and they have dropped almost 5 points!!  CTC not being run until next month; that's the biggy as I had a jump out of the "normal range" before beginning the new tx!  So ... I'm encouraged! Smile

    I've always been a headachy person & I believe the faslodex is causing me more frequent headaches, anyone had that side effect?  It's listed as one.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Yay Tina and SyrMom!

     Okay, I have read through this thread a couple of times, but can't remember if I read this....

    Is anyone's hair thinning out from the Faslodex?  My hair has always been thin, but now I have a receding hairline in the front and the back is really thinning out at the bottom.

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

    Denny and SyrMm,

    I have not noticed my hair thinning, but it has become more dry, so I use more conditioner than before and Kheil's Argon Oil in the winter months. (Caution: on the last item,  a very little goes a long way---unless you want to look like one of the guys in "Grease.")

    I've not had headaches with Faslodex. My SEs seem to be mainly joint/back aches, mild intermittent nausea and an occaisional hot flash. 

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

    My hair has thinned, but I had so many folicles per inch to start with that only I would notice. No headaches at all. My side effects include fatigue, some nausea in the first week post injection, and possibly my new lower back pain. The blasted hot flashes have returned in the past two months.

    Hope this helps,

    *susan* 

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  • SyrMom
    SyrMom Member Posts: 862
    edited September 2012

    So far no noticeable changes with my hair.  In addition to the headaches I get night sweats (so far not as frequently as when on femara), joint pain, & intermittent nausea.  I've noticed I stopped losing weight and seem to be stablized.  Not that I lost much, but I'm petite to begin with and the weight wasn't holding when the femara stopped working.  I'm always tired, but noticed an increase with the loading doses.

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

    I get tired, too, more than ever before, but I think much of it is due to dealing with constant discomfort/pain from my stupid arthritis. Of course, I could be in denial!

    Tina

    P.S. Oh, and I have actually gained weight and pudginess, which I can ill afford to do. No one's ever gonna look at me and think I'm sick, that's for sure.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    Besides the hair thinning, my hot flashes are nastier.  I bought the moisture-wicking nightshirts on ebay, which are great.  I can no longer wear the nylon nightshirts that I have worn for years.

    Also have the stomach problems and can't eat anything spicy anymore.

    I am tireder than I used to be.  Just have no energy anymore.

    My butt hurts often-shooting pains now and then and nothing predictable. 

    But this is a lot better than the harder chemos, so I guess I should be happy.

    LOL Tina-I feel the same way.  When people find out that I am 10 years at Stage 4, they make remarks to the effect that I don't look like it.  The extra 30 pounds that I have piled on makes me look healthier, I guess.

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  • sandilee
    sandilee Member Posts: 1,843
    edited September 2012

    Denny-

      My hair thinned out when I started FAslodex for about 2 months.  Then it stopped!  Since then, it's been coming back in normally.  I wonder if there is an initial shock to you system, but then it adjusts.

    Congrats for 10 years at IV!  YOU are an inspiration!
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  • Denny123
    Denny123 Member Posts: 1,886
    edited September 2012

    sandilee--thanks!

    I have been on Faslodex for 6 months.  How long were you on it when your hair thinned?

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  • sandilee
    sandilee Member Posts: 1,843
    edited September 2012

    My hair started thinning about the second month I was on it, and stopped about the fourth month.  I've been on it now for 13 months.

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  • Aerial
    Aerial Member Posts: 194
    edited September 2012

    I had my 13th set of shots on Friday (along with Zometa) and everything went smoothy.  Certain nurses can give the shots so skillfully I barely feel the needle go in.  For about three days after I have moderate "butt pain".  I've noticed that my eyes burn and I'm more fatigued for several days, too.

    I've had no hair loss or, weight loss (darn it)!  I really need to lose some pounds.

    My worst, most limiting, pain is two slipped vertabrae that have trapped a nerve in my low spine and give me leg pain, (there is no cancer causing this pain--just wear and tear over the years). My pain doctor wanted to try a radiofrequencey ablation but, my insurance has denied the treatment twice!

    I am so disappointed, the only pain med that doesn't make me sick is Vicodin.  It doesn't help much and just walking across a store becomes a very painful.  I recently saw a second neurosurgeon who said only surgery will really solve the trapped nerve problem.  Right now, I'm waiting to see what happens and get the advice of several doctors.

    On the up side, Faslodex has kept my bone mets stable for (at least) a year!   Long may it work for all of us!!

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited September 2012

    I was surprised and relieved to read that others on Faslodex also notice thinning hair. Mine got thinner on the top front. I hope it stops. I have been on Faslodex and zometa since April. Sometimes the shots really hurt and cause a hard lump  and sometimes they hardly bother me at all. Hmmm. This is tons better then Arimidex and Aromasin. Once in a while it will make me queasy.

    I have noticed an increase in edema in my ankles and feet. I had terrible neuropathy from the Taxol back in 2007. After 4 rounds of Taxol I couldn't feel my feet at all. Then sensation came back, tingling and burning. After nearly a year it went away. Since taking the faslodex I notice when the edema is increased at the end of the day, the neuropathy is back. My oncologist increased the diuretic I take and the edema went down - the neuropathy pain disappears. Anyone experienced that?

    All in all I like Faslodex. My tumor markers have dropped from768 to 136. My recent PET scans are clear and they were loaded in April with bone mets everywhere. Any idea how long this reprieve lasts?

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

    Rosevalley, my oncologist responded " Months to years" when I inquired as to how long I might expect to stay on Faslodex.  He's not given to speculating on specifics about time, and that's probably good!

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  • Aerial
    Aerial Member Posts: 194
    edited September 2012

    Hooray, Rosevalley!  I'm so glad faslodex is working for you!

    My oncologist said the same about as Tina's--months or years.  I think no one knows for sure because we all respond to treatments in very individualized ways.  I'm so glad for your good news!

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  • sandilee
    sandilee Member Posts: 1,843
    edited September 2012

    Just returned from my onc's office to review my latest scans.  It seems nothing new has popped up---yay!---although my bone mets are more sclerotic, which I learned means "hardened." I don't think this is a bad thing, and it is probably due to Xgeva.  My T3 vertebra is further collapsed, but not due to the cancer- just because, which probably explains my recent pains.  I am going to talk to my radiologist and have him look at thes scans for a second opinion. He will actually see the film,where the onc just gets the report.

      Anyway--I get to stay on Faslodex!   I'm happy about that.  

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

    Yea! So glad to hear that you get to stay with us.

    *susan* 

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

    Goils,

    I've wanted to ask this for a while, but it seemed too trivial relative to our other concerns. Are any of you permanently numbish/nervy from the sides of your hips down through your haunches or is it just me?  This has been going on for many months. I assume it's from the injections.

    Tina

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

    Tina,

    During the injection on my left side, I get a shooting pain down my left side. This pain is great enough to bring tears to my eyes. Sometimes that pain last for up to 48 hrs, other times it is gone by the time I get to my car. But this doesn't sound at all like what you are experiencing. Could you have this due to your arthritis?

    Sorry you are in pain.

    *susan* 

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

    Susan, I have no idea. Maybe. And no one (ortho or onco)  wants to talk about the Faslodex injections related to aggravating the arthritis. I can see them shutting down when I bring it up, in part probably because no one--including me--is inclined to experiment by stopping the Faslodex!

    I'll try to remember to ask the pain doc tomorrow when I get another shot of cortisone in my hip. The last was only somewhat helpful.

    Then we're off to Chincoteague and Assateague for several days and a change of scenery. Now where's that bug spray?

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  • c-k-j
    c-k-j Member Posts: 31
    edited September 2012

    Hi, had my 10th injection yesterday and all went well.  After the nurses started only injecting the needle as far as need be to reach the muscle, I don't feel any discomfort at all.  I know there are many who have issues with arthritis and I can empathize with that because I had horrible arthritic pain on Femara, but I haven't had any of those difficulties with Faslodex.

    The thinning hair has been problematic, but my hairstylist put in a band of hair extensions on the sides of my hair and it has really helped.  She adjusts them as my hair grows and they will last for months.  Not expensive and I'm pleased!

    My CA 27.29 markers have stayed between 13 & 18 all this time.  It is an amazing drug for me and I hope for others who are looking at starting this or are on it now. 

    Many blessings to all on this message board.  May you feel empowered and loved. 

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  • pearlady
    pearlady Member Posts: 882
    edited September 2012

    Hi Ladies. I am new to this board and have been reading some of the posts.  I'm not on faslodex now, but know that I will be at some point in the not too distant future as my onc and I have had discussions.  I'm so glad to hear that it's working for so many of us.  I have been on herceptin for many years and just had perjeta added.  Really a difficult drug as the GI side effects are relentless.   I'm hoping that the faslodex is a bit easier on the GI tract.  Much love and positive energy to everyone. 

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