Faslodex Girls Thread
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p.s. I will remain a member of the Fanny Pack until the "art" says it is time to switch. Nº 60 is next week. You guys aren't done with me, just yet. And thank you for your thoughts.
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Aw Susan, I'm so sorry. That sucks major league. Insert many expletives here.
Maybe palbociclib will come on the market before you need to switch to chemo? (That's what I'm hoping for for myself)
Did you already do A/A? I guess that's sort of chemo.
Hugs and many more hugs,
Pam
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Danishgirl and RosesToeses, I'm so happy for your good news!
And I hate to hear of your progression, Susan. You're a rock on this forum... truly... and I don't believe you've seen the last of NED. I just hope that the chemo experience is swift and effective. Lean on us here...
Rose.
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Thank you, Steel Rose
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Susan,
Hoping for a successful solution for you. We have to be so patient waiting for something else that may work.
Terri
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Susan, I was recently told by my onco that there are a couple of new treatments being released early this year for hormone positive mets. I'm truly hoping that they are released before you have to go the chemo route.
Don't lose hope, we still have reason to keep hope alive!
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Dear, dear Susan ,
I'm really sorry to hear about that but I know women who have returned to the land of NED after leaving they did return! I don't pray but I try to connect on a compassionate level and will reach out.
Just asking but has anyone heard of this place in Texas, Houston I believe, where people have had some amazing stories of recovery? I always thought I'd go if things took a bad turn. It's the Burzynski Center and I only bring it up because I spoke to a woman with stage 4 , looking bad and had treatment 14 years ago with no recurrence . I KNOW she is legit (is a high profile gal in my field). Do any of you think of these things or poo-poo them?
Thank you for showing such care for me about my eye. My onc said I have to see an opthamologist as well. Just got mapped for radiation today to hopefully rid myself of a couple of stubborn spots. I have now gone down to 91 (tumor markers) from over 800. Thank you Faslodex!
Congrats Danish girl!
Have a good weekend all!
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Susan- So sorry to hear of your progression. We all know it will happen at some point, but that doesn't make it any easier, really, when it actually happens. {{{hugs}}}
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Valerie, Dr. Burzynski is very controversial. USA Today did a series on him about a year ago here:
http://www.usatoday.com/topic/68a3147f-f33a-4db3-a0c9-792c559da370/burzynski-cancer-controversy/
I'm glad the person you met had a good experience, but from what I gather there are lots of things that people see as red flags about what he does.
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Curious if Faslodex thins the hair? I am on the thin side and find the shots painful for about a week. Any suggestions to decrease the pain.
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Susan,
Sorry to hear that you are having to leave this pack! You are the one who has been on Faslodex the longest, if I remember right? I know someone who has been on it longer, but not from this thread. I wish you the very best as you enter chemo land. I have only had my mets for a little over a year yet I've already had 2 lines of chemo treatments. So the good news for you is that you have many chemo treatment options available! And who knows, whatever in your system gave you NED the first time may show up again!
Please let us know where you will be posting so we can keep track of you!
Brenda
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Hindsfeet, I haven't heard that it thins the hair. The trick with the Faslodex is to get it warmed up as much as possible before they inject. I have heated seats in my car and turn the seats on for the ride home and then sit against a heating pad when I get home. I also take motrin 1 hour before the shots and again before I go to bed. I'm usually sore for 1 or 2 days after treatment if they warm it good, will be sore for a week if it isn't warmed up enough.
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Hindsfeet, yes Faslodex will thin your hair. At least it did mine. I was freaked for a while, but after it reached a certain point it stopped coming out.
As for preventing pain: Warm the shots (hand temp -- I put them up against my belly for 5 minutes), inject sllllooooowwwwly. Label says one minute per shot. Most nurses will take 30 seconds if you ask. Lastly, go for a walk after the shots. Take the long way back to the car.
It could also be you're thin. I have plenty of padding :-)
Pam
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Tina 2, I don't know if I am reading your post correctly.....are your lung mets stable on Faslodex since 2011? That is so encouraging if true! I was dx with lung mets and have been on Faslodex since a yr ago.....and also Herceptin. The pleura has thickened but no new nodules or further pleural effusion. I hope that we both continue to do well on the Faslodex. All the best. Peggy
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I haven't noticed my hair thinning, which could mean it isn't or may just mean I haven't noticed? As for the pain, for me the first few month were worst and painful on and off for about a week, but it got better over time and now (month 11) it hurts a little less at the time and stops hurting much faster. Hope you find it gets better for you, too, Hindsfeet, and hope you have many, many good months on it to find out
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Peggy,
Yes, it's true.
I was diagnosed with Stage I in 1985, then 1995, and had modified radical mastectomy with immediate reconstruction in both instances. Since I was node negative, no other treatment was thought necessary. (The accepted protocol has changed since.) A series of lung issues (see my profile bio for details) led to my Stage IV diagnosis in 2011. I returned to the oncologist I'd seen in the past and he put me on Faslodex. The first scan three months into treatment showed no growth of my lung mets, the next scans indicated diminishing growth and activity. Subsequent scans at three months, then every six months showed more of the same good results. My most recent PET-CT scans show no metabolic activity.
I am a lucky and grateful gal.
Tina
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so sorry to hear of the progression, you have given me so much hope for the future. My best wishes for you.
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Tina 2....Thanks for your reply. Since. I had a pleural effusion at diagnosis, a VATS procedure with Talc pleurodesis was done. That was in Dec 2013....essentially now feeling really good over all. Here's to another successful year for us! Hoping TMs continue to show some decline.. Still in the 50s. Maybe that is stable for me
Peggy.
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I know Rosestoeses , I just wander how far I'd go
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Ah, now Iunderstand, Valerie, sorry for restating the obvious!
Personally, I wouldn't go to him as my "Hail Mary" because I feel like the travel, cost, and pain and suffering that it would entail with a benefit that's iffy at best wouldn't be worth it. If/when it comes to that, I'd rather be in my familiar places with my family, leaving them in the best possible position to go on, and with access to my familiar and compassionate docs and good pain meds.
For me, if there was a phase I trial or other longshot that might help (however unlikely),, I'd probably do that, but not something like Dr. Bryzinski.
But that's just me. I can totally understand other people looking at it completely differently and going a different direction, and goodness knows, I don't come close to having all the answers.
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I've been having some more pain lately in my back and my hips, so I was really surprised this morning to read my bone scan report which, fortunately, had dispelled my fear that I might have to say goodbye to Faslodex. Findings consistent with stable metastatic disease with no substantial change from 2013. I'll take it. There was even regression in my skull mets, as they were not seen on this scan.
I'm feeling very grateful. I hope my good luck is encouraging to those new to this medication. I've had 3 1/2 years with this drug and it's been very good to me.
My thoughts and heart go out to our dear sister, raro, and all who are facing a tough time right now.
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I go in for month 60 tomorrow, but with a bit less enthusiasm than previous months.
Sandi, wonderful to hear that you are still stable.
*susan*
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I'm so sorry Susan but you clearly have a strong constitution and hopefully treatment tweaking will bring back the stability you got used to and liked! It is such a shock when things go poorly but here's to hoping it's just a phase ! Much love, Valerie
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Good luck to you Susan.
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Susan, Fellow Cheeky One,
I'll be thinking of you tomorrow, even though now our schedules are a week apart.
Hydrate!
Bottoms up, hon.
Tina
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sandilee: My first shot was on 11/7/2014. That was also my last chemo infusion. Already I hurt when I sneeze or cough. This is not a good sign. I'm glad that in your case your pain did not mean progression! My next scan is mid-February. Maybe it won't be so bad?
susan: Maybe you can try the palbo/faslo combo? Is there such a combo?
Brenda
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There is a Pablo/Faslodex combination. I was gonna take it but I can't cuz I take Celexa. But I have a great success story on letrazole and faslodex!
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That was funny.! Autocorrect said Pablo instead of Palbo. Huh! Anyway, there is one
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Val, I take Celexa too. Is that contraindicated with Palbo?
Thanks.
Brenda
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My onc who is running the study up in Boston said it would have been just fine but , I think it's Pfizer, said no because they thought there might be cardiac complications. He pushed as did my NP but did not work. I'm having good results so I didn't sweat it but if I could have avoided this rads business I would have been happy. I had rads six years ago to my breast with no problem but my whole spine is a different story. Hiccups, nausea, sciatica....ugh. I will get through it though as everyone I've read so far is happy about the end result. Anyway, once it's no longer a trial, I can take it when and if it becomes necessary. 😊 (Palbo)
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