Faslodex Girls Thread 2014

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  • mtmom
    mtmom Member Posts: 14
    edited January 2015

    Hi!

    I guess I fit here, too. So many threads to follow and I'm thankful for all the info. I laughed so hard when I read about "The Fanny Pack"...it is good to laugh. :) I always feel like I'm 5 years old when I have to drop my drawers for my shot so I always take in a couple of my daughter's happy band-aids for them to use. Silly but fun!

    I started Faslodex right after mets in Sept 2014, but I started it as a study drug. I was using it along with Everolimus and Anastrazole which were the two unknowns. Faslodex was a for sure...they were studying how well the three drugs work together. My mets started to grow quickly so I went off the study onto Taxotere but continue with the Faslodex. I think doc is keeping it as a catch all drug. Anyone else using it that way?

    Blessings,

    ~Mtmom

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2015

    Mtmom,

    I'm being treated with only Faslodex, so I can't answer your question. However, I want to welcome you to the cheeky world of the Fanny Pack. As you have seen, you will find lots of support and information here.

    Bottoms up!

    Tina

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  • Megc
    Megc Member Posts: 21
    edited January 2015

    I've been on Faslodex for a bit over a month, have had the three "loading doses". TMs are up about a hundred since we started a month ago. Plan is to continue for another month on Faslodex and do scans.

    Anyone have rising TM in the early stages of this med but have it work over the long haul? Tamoxofin was a bomb for me and because of my allergies, there isnt much left other than chemo, if I'm not allergic to it.

    Mary


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  • Valerie5746
    Valerie5746 Member Posts: 111
    edited January 2015

    I take Faslodex and Letrazole and have had magnificent results on it along with Zometq. Most fortunately my tumor markers went down right away from over 800 to 91 six months later. Most unfortunately, I have three compression fractures in my back and a couple of stubborn spots so am doing radiation, despite my best efforts the nausea is awful. Any ideas?

    Good luck and much love!

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  • Megc
    Megc Member Posts: 21
    edited January 2015

    Valerie,

    There are numerous prescription med for nausea by mouth or suppository. Ginger is supposed to be really good. Fresh ginger from any grocery, lob off a piece, steep in hot water, add honey. Comes in tea bags and candy form from Whole Foods kind of stores; from your local drug store, my daughter told me someone gave her Bonine (for motion sickness) when she had the flu and it worked great. Out of necessity, I now do a lot of homiopathic stuff. Been surprised a number of times how well they have worked.

    Feel better.

    Mary

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  • 208sandy
    208sandy Member Posts: 2,610
    edited January 2015

    Joined the "fanny pack" today - very unexpected as onc had mentioned back in the fall that I'd be on Halaven - anyway during this afternoon's appointment I was told it'd be faslodex and we'd start the loading dose today - yikes! But it was fine - nurse was awesome, warmed the syringes for me and took her time injecting - it was a great introduction to what I hope are many, many months of treatment - will be scanned in three months to see if it is working.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2015

    Bottoms up, 208sandy! Welcome to the Fanny Pack.

    Tina

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  • freebird53
    freebird53 Member Posts: 166
    edited January 2015

    I got my test results today...from my PET scan...My cancer is very progressive at this point...what I thought last Tuesday with a CAT scan in the ER of a couple of sm lesions on my liver have turned out to be 20 lesions now...after the PET scan...OC told me that my bone mets some of the tumors are glowing RED...that means to what I understood from him is that the Cancer is on High alert...so I am starting Adriamycin tomorrow morning...I am so so scared...it is happening so fast....Carla

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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    Valerie, I did rads to the lower spine, and didn't have the wrost time, though my stomach was unsettled, to say the least. I hesitate to complain because I've heard stories from some ladies more like yours.  It was awful while I was going through it.  Zofran just was not helping.  Are they giving you anti-nausea meds?  Ask for some stronger ones?  It is only temporary -- a few days after the radiation it will stop. 

    Welcome Sandy! 

    Freebird, ah the red devil.  Take all the premeds and anti-nausea meds they give you.  It's nesty stuff but it sure does kill the cancer cells.  Shrank my original tumor down to almost nothing. 

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  • 208sandy
    208sandy Member Posts: 2,610
    edited January 2015

    Freebird - what pajim says - the stuff does kill cancer cells and I was never nauseous because of good meds - good luck!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2015

    Fellow Fannies,

    Is anyone else's wagon really draggin'?

    For several months I've felt as if everything I do--from getting dressed in the morning to accomplishing the most simple of tasks or errands-- is taking two or three times as long as it should. I get tired earlier in the evening, too, but push hard to get through whatever I've committed to socially, even though I'd rather be home reading or sleeping.

    Is it the Faslodex, the dreary weather, my ostensibly quiescent cancer, my increasing weight and age or all of those combined?

    I seem to be steadily losing my energy and drive---or perhaps what I'm losing is simply the ability or desire to keep faking it.

    Tina


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2015

    Carla, you are getting the "big guns" from your arsenal. It works. You should have some sort of cardiac test before you start infusion. A/C gave me four years of remission.

    Tina, it could be a mix of all the things you mentioned. For myself - I attribute all my loss of motivation and energy to the Faslodex. Any type of anti hormonal makes me feel this way. And none of them has worked. I'm hoping at least this Faslodex is. I will find out mid-February after CT scan.

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  • freebird53
    freebird53 Member Posts: 166
    edited January 2015

    Adnerb...yes they gave me a ECHO scan...My heart is very strong...and I'm having 6 to 8 treatments and will be giving weekly...low doses...OC said so he can monitor me closer...going to scan after 6th treatment...Thanks Carla

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  • QueenOfHope
    QueenOfHope Member Posts: 61
    edited January 2015

    I just learned that my tumor markers are going down! On Dec. 2nd, they were 118, and now on the Jan. 13th report, they're 69.6. I know there's debate about how useful tumor markers are, but my Onc. uses them in her tool bag. I feel encouraged!

    I've only been on Faslodex since mid-November, so I think we're still at least a month away from new CT scans, but I'm breathing a little easier.

    I continue to feel fine-- no side effects to speak of, expect a few joint aches which I'm used to, anyway, having been on Arimidex in the past.

    In a couple days I leave for a 6-day business trip where I'll be working close to 12-hour days, so this news is giving me a nice lift!

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  • Gina7
    Gina7 Member Posts: 8
    edited January 2015

    Tina, it's probably just a blip on your psyche. I feel like that all the time, so I'm used to it. It always passes when I laugh really hard or have a luncheon date to share some wine and gossip. Pamper yourself for a couple of days to see if that helps.

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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    Tina, I find that winter does it to me.  By March I'm just dragging.  Feel depressed, the whole works.  Never had that before the big C. What you're describing is much more like fatigue.  I just get down.

    It could also be the effect the meds have on our minds.  It take me a lot longer to get a piece of work done than it did before.  I feel very slow sometimes.  This week happens to be one of those times.

    You need sunshine.  Trip to Florida??  Trip to the spa?  Do something fun that makes you feel good?  If none of the above, maybe simply exercise.

    Pam

    P.S.  Increasing weight (which I also have) can really get you down.  Makes one feel inadequate, guilty, etc. etc.

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  • Valerie5746
    Valerie5746 Member Posts: 111
    edited January 2015

    I like meditation and self-acceptance during these times. Been around doing it for years but there is a new app that is pretty self explanatory and on all smart phones. First one I would suggest is "simply being" by meditation oasis. Listen to it three to four time a day if you can. Life saver when I don't like or cannot be kind to myself! ❤️ much love!

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  • Myra1211
    Myra1211 Member Posts: 541
    edited January 2015

    just had my shots again on Tuesday. Feeling very tired also. Was just complaining to my husband about it. Decided NOT ro look at TMs. Giving it it's 3 months to work and then will deal. Took all my might not to look, but also very freeing.......Tina feel better...free bird had adriamyacin 17 years ago as first course at dx. Drink loads of water, take your zofran and hopefully you will be fine. Kicked ass for 16 years! Good luck

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  • freebird53
    freebird53 Member Posts: 166
    edited January 2015

    Myra1211 Who just made me have ***TEARS**** 16 yrs ago you had adriamyacin This just gave me a up lifting spirit for today....Thank you Carla

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  • Valerie5746
    Valerie5746 Member Posts: 111
    edited January 2015

    Thanks pajim....I got comparing also which helps with Zofran. I had two days no back pain but now it's back......haven't had enough yet I guess ? Who the heck knows. Enjoy each day as it comes AND a huge snow storm is coming so I know I'm gonna miss another day anyway! I think I'm gonna enjoy two feet of snow and try and let this go for a couple of days 😊 be well friends!

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  • Myra1211
    Myra1211 Member Posts: 541
    edited January 2015

    just got the dreaded call from the onc office. After four doses of fasolodes my TMs are rising still. Need a PET scan again next week. Don't know if it's too early or should we wait more time. Everything I read says it takes 12 weeks to see if it works. So confused and upset. So lost. So lost.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited January 2015

    I just started on Faslodex a week ago so I'm no expert but my onc said we'd treat for three months, then scan and do TM's - think you might need more time but like I said "I'm no expert" what does your onc say?

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited January 2015

    Four doses is what, two months? Three months? Three months doesn't seem too soon if your TM's have gone up significantly. Two months feels a bit premature, but I don't have an MD at the end of my name. My onc does chuckle when she tells me that I have a doctorate in breast cancer though.

    *susan*

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  • Megc
    Megc Member Posts: 21
    edited January 2015

    Myra 1211,

    I've had three sets of shot. I'm in the same boat you are. My TMs up 100 since right before I started Fas. I searched the Internet and only read stuff from reliable places. Basically, TM going up for the first 4, yes 4 months means nothing. Doesn't mean a thing about if the stuff is working or not. Some gals are lucky enough to have the TMs go down right away. Some not. If they don't go down right away, we need to wait for a scan. I guess we get to find out how much we are willing to gamble on the unknown.

    To all of you north of DC, I hope this storm turns out to kinder than they are forecasting.

    Mary

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  • Myra1211
    Myra1211 Member Posts: 541
    edited January 2015

    it has been 9 weeks. Thank you for your replies

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited January 2015

    Is the nurse supposed to give the shot high or low in the hip.  What if you have little muscle or fat?


     

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  • Myra1211
    Myra1211 Member Posts: 541
    edited January 2015

    thank you Mary. It is very frustrating. I wish my TMs would go down. Guess another round of scans.

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  • melbourne
    melbourne Member Posts: 1
    edited January 2015

    Hi ladies. ....just found this site.   I have been on faslodex for 5 months now.  My CEA keeps going up, scans clear but my personality has changed.   I start fights with my sister, have become negative and care to do nothing.....I stay in my room.

    Has this happened to anyone? 

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  • Myra1211
    Myra1211 Member Posts: 541
    edited January 2015

    sometimes I have to force myself out of bed and now that you mention it my threshold for angry responses has lowered. Perhaps some depression and why me syndrome going on.

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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    Hi Hindsfeet, my nurse gives the shot pretty high on the hip, angling the needle downwards.  The med is supposed to go into the gluteous maximus.

    I have plenty of padding in that area.  Not sure what we would do if I didn't have much.

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