Faslodex Girls Thread
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Diana, I have high hopes for the Faslodex working for you too. You deserve a big fat break woman! Ibrance worked well for me except for the liver enzymes elevated. They came straight back down after I quit Femara/Ibrance and started Faslodex. I hope the pneumonia clears up soon so you can start Ibrance too. Linda, 5 years is fantastic. May it continue indefinitely! Wow Kim, thanks for that explanation. Pretty complicated stuff to me. You ARE the Science Girl! Pam, your speculation about the ER status makes total sense to me. Question: Do all Onc's eventually check for change in ER status? Or do I have to DEMAND this? And yes, I have accumulated a thicker middle lately. Seems like my appetite has increased on this and I haven't been very vigilant about my diet. Although I eat my five a day I will also have a cookie or some ice cream if I feel like it....
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Diana, I'm crossing my fingers for you. I always enjoy reading your posts, your fighting spirit always makes me smile, as artist says, you deserve a break for sure!
I'm also wondering about re-checking ER and HER2 status. I have circulating tumor cells (CTC) - they should be able to check those instead of a biopsy? Anyone doing this? It would be so much easier and I imagine you could check it much more often.
LindaLou 5yrs - that's so awesome (a lot of shots, but worth it )
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Kim, I have heard of CTC here and there but don't know much about them. Can you give a dummied down explanation of what they are and how to check for them? Thanks!
Diana, Glad you got those first shots "behind" you. (Joke attempted.) I have looked at the needles too, but am glad I can't see them going in! Ibrance really clobbers the cell counts, so maybe it would be good to hold off on that for awhile. Fas alone can be very effective. I saw good results 3 months in before starting Ibrance. Fingers crossed for you.
Lindalou, Congrats on 5 years of good results with Faslodex, but oh, your poor behind!
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Hi
New to faslodex thank you.😊
Information helps.
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Diana, we are all pulling for you -- hoping that Faslodex (and eventually Ibrance) will be your magic bullet!
Funthing, what would you like to know? Have you had your first shots yet? Be absolutely sure whomever gives you your shots follows the protocol in the original post at the top of this page. Other than that, you really should be fine. For most of us, there are very few SEs other than the thicker middle some of us have been complaining about. I hope you will also find it a very tolerable med!
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Yes Kim, I am curious about CTC too as I do not like thinking about another needle biopsy....
It wasn't TERRIBLE but it wasn't pleasant either.Jobur, Hahaha! I found that pretty funny....I will endure 1000 shots if it does the trick. Although the last ones I feel I might have had a sciatic nerve punched or something as my hip and leg ached for almost 3 weeks. It is almost back to normal and I go again Monday.... Yikes... I am going on a very long walk today to prep the muscles!
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Circulating tumor cells (CTC) are cancer cells that have shed from a solid tumor and enter the blood stream. "CellSearch" is the only FDA approved test. Without insurance it costs ~$900, my insurance (Aetna) covered the test and I paid ~$45. It a simple blood test in which they take 7.5ml blood and isolate how many cancer cells are in that volume. 0 < 5 is considered 'favorable' and 5 and up is 'unfavorable' in the context of overall survival (mine were 14
) People with no cancer usually have 0 CTCs, only 3% of the control patients had 1 CTC. My cancer center never runs this test - they had to special order the tubes to draw the blood. My oncologist only ordered the test at my request and was not happy with my 'unfavorable' result and totally disagreed with the avg. 13 month overall survival. (I have bone only mets that have been stable from the beginning and I haven't even started any chemo yet).CTC's can monitor if your treatment is working; as soon as 3-4 weeks after initiation of treatment if your count was >5 and drops below 5, then the treatment is working. This is much sooner than imaging could show treatment efficacy. Also, one study I was reading said that imaging has a 15% variability between radiologists but the CTC test has only 1% variability. One con is that the test works using antibodies against a cell surface protein to identify the cell as a cancer cell - if your particular cancer doesn't have this protein your cancer cells won't be counted.
It seems like genetic testing of these CTCs is not ready for prime time. Foundation One is urging caution. Studies are ongoing to compare CTC genetics to that obtained from tumors. I guess I have to wait for genetic testing, but wouldn't that be great if we could skip biopsies.
Just some thoughts, I'm still learning about these myself.
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Hello, looks like I derailed this thread with the talk of CTC's. Let's get back to Faslodex: I had my third set of shots, same nurse each time, the shots were virtually painless. Honestly the Xgeva shot in my arm hurt more. Although I do feel sore for about a week in the shot area. I have myself convinced that this will work for a long time, let's hope that's true.
Diana, how are you doing?
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hi science girl and all faslodex gals
Praying that this faslodex will hold cancer stable or even knock it down. Still recovering from pneumonia. Very weak and my muscles hurt and joint too. From the three chemo I was on , levaquil the Antibiodic for pneumonia. Pet scan showed stuff still in my lungs. SUV was 2.1 and 2.3 in the two areas lung doc concerned about. And still junk in lungs in various areas but improved Another scan end of May
Basically I'm just trying to gain stamina and strength in my legs and arms. My muscles are gone from being incapacitated for 3,weeks. But I'm trying and know how to set up a fitness program. Lots of pain pretty much everywhere but not from faslodex
Sx from faslodex. ( I think) is constipation (prune juice works for me ) nausea. Pepto bismo works. Fatigue but that pneumonia knocked me. I don't know which SE is from what. 🙄😔😁 Ha ha. But will tell you praying this faslodex will work. I don't think I will be totally recovered from pneumonia for 3 months. Apparently I was very sick per lung doc. Scarey
I hope each and very one of you are feeling good and continued good results from faslodex. I still believe in miracles.
Hugs all
Diana
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Diana, thanks for the update, hang in there. Pneumonia can really knock you out. My husband had it in his 20's and knocked him on his butt. It is scary for sure. How's the weather in Palm Desert? (is it always the same?) Finally warming up here in NJ, I want to put my winter coat away.
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Kim, Thanks for the explanation of CTCs, even if it was off topic. Glad your shots have gone so well.
Diana, I had nausea when I 1st started Fas, but it went away after the first few doses. Hope it will for you too. Are you doing any kind of mild exercise at this point to get your strength back? Hope those lungs recover soon and allow you to do more of what ever you enjoy.
Welcome Funthing! How is Fas treating you so far?
Just realized I have now been a member of the Fanny Pack for a full year. Hope it will be as good to the rest of you as it has been to me.
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Jo, A year! Great. It sure seems that this drug has offered many of us longer treatment with fewer SE's.
Diana, Hoping your strength improves quickly now as you recover.
Thanks Kim for the info.
Good week to all
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it's funny the nausea comes pretty much at the same time every day. Pepto bismo calms it down. I have so many SE from chemo, pneuomnia the antibiotic ( levequil ) and mow faslodex I can't tell what's from what. I'm wearing runners compression socks and they help my legs hugely. I had edema in my ankles legs and that took care of that. Trying to walk. But but stamina isn't good. Better then a few weeks ago. Slow healing process. I thin by end of May I will really feel better. 👍
Thanks everyone. A year. Jobur. I love to hear how everyone is doing. Praying for response. I hope this stuff is working Now 💉💉
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diana, I am on my 5th round of Faslodex and it definitely causes constipation for me. I am trying to drink lots of fluids and I have found a banana or yes prunes are an amazing help. Today my Onc recommended magnesium supplements for extra help. Haven't had any nausea. I hope you are perking up day by day and feeling like your old self again soon. spring weather will make it easier to get up and around. I absolutely believe in miracles ! I know a few good stories regarding friends and miracles. I finally mentioned to Onc that I needed a different nurse to administer the shots, so got my 1st gal back who was virtually painless. (Although it is starting to sting now 2 hours later....) I thought my fav was on maternity leave already but is actually leaving soon for 4 months! I may have to go back to the "yucky nurse" when my favorite is gone for awhile. Waaaahhhh! Onc also says we can probably revisit a lower dose of Ibrance in the future. Yah! The more options the better! Finally warming up here too and cannot wait to spend a day just letting the sun warm my body. Best wishes ladies!
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Anyone here on Faslodex and Femara?
Tina
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I was. For three years. After which we added Ibrance. Now I take them all. . . . . . . . . .
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good to know pajim. Going to ask onc about adding letrozole. I have to wait for Ibrance until pneuomnia is 100 %. cleared up and I've recovered. Thanks for info. 👍
My ER+ is only 40%. Any body know how effective hormone tx is with low %?
Thanks.
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Diana,
I am less than 5% ER+ and got five years of NED with Faslodex.
*susan*
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Susan
Oh how I need to hear this. That is fantastic. Powerful medicine that little (big) shot. Thank you and so happy for you.
Diana
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Pam, How have the results been of taking all three of those at once? Do they think it will work twice as well to really kick the mets down? I seem to hear of this more often and am just wondering....
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Jo,
Sorry for the lack of response.
Fasoldex is fine x 2 250mg . So far. Nauseated the first night. Flash back to chemo.
The ibrance came in the mail. I've been itching it seems as if my arm has tiny bumps. And a sun burn.
The fasoldex cleared the tiny pink marks on my arm now they are hive like. Right sided pain like I ran a marathon.
I've already expressed this to my oncs.
But that's it.
I'm no quitter. So bring it Cancer.
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Do others find in the week before shots are due you feel more achy, night sweats....I'm wondering if it is wearing off...or it is the point in the Ibrance cycle...
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keetmom, I've noticed that -- not every month, but there have been months where I start to hurt noticeably more a few days before my shots are due. I've mentioned it to my hubby -- that it feels like it's wearing off just before it's time for my next round, which is why I'm always happy to get my shots!
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Not yet I feel nothing.
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keetmom, I notice that too, though not every month. More trouble maintaining body temperature, particularly at night.
artistatheart, I started Femara plus Faslodex three years ago (after diagnosis). Over the last year my scans got a little worse and tumor markers started to take off. We decided to add on Ibrance, sort of as a booster. We wanted to add it while the other drugs were still [sort of] working. I'm guessing I could have stopped the Femara, but it's cheap and I'm used to it and what the heck.
It's too early to tell how it's working (week 3 of cycle 2). Or is it? Does anyone know how long it takes to tell? They measured my tumor markers today and they are even. That beats what was happening before I started Ibrance, but it's not exactly a cure, if you know what I mean.
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I got my first injection today. My left side feels fine but the right side is definitely sore and feels like nerve pain . I will deal as long as it works. Getting my ovaries out next week too. So much excitement! Thanks for all the info
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I've noticed I get the pounding heart and breathlessness back a little under a week before next shots are due and yes more hot flashes. Got shots on Monday and it stopped?? So I am like Deanna, glad to get to the next round. Pam, interesting that they paired them up right away. I think the Ibrance is supposed to take 3 months or so to really kick in. It was working for me for 3 months but then had to quit. But Onc says we may be able to revisit a lower dose up the road. I hope it kicks in big time for you Pam! Welcome Suefit! Got the gloves on, you're ready to rock and roll.....
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Funthing, I had the bumps and itchy hives thing too the first couple of months but it seems to have gone away. Were you able to walk after your Fas shots? That has been most helpful to me. Longtermsurvivor's post on page 13 of the Fas & Ibrance thread has other good suggestions, especially as to making sure you have the side that is getting the shot as relaxed as possible.
Amie, Yes, just like Deanna and Pam said, sometimes, but not every month. But never enough to make me look forward to those shots! LOL!
Pam, You're right, it might be a tad early to know if Ibrance is working, but still seems like a good sign. Quite a few on the Ibrance thread had their markers continue to rise for several months before starting to come down. Hope the fact that yours have evened out already means you're a super duper responder.
Welcome Suefit! Sorry you are having so damn much excitement. Does your right side feel like a sore muscle? Any pain down your leg or just in your cheek? Hope it's not nerve pain. The sore muscle feeling goes away in a few days in my experience. Hope all goes well for you next week. Love the gloves!
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Glad others are feeling the same things and I'm not just crazy, well I know I made crazy just that I'm not imaging stuff.
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Amie, That's one of the things I love about this forum, it helps me keep what is left of my sanity! Even if we are a bit crazy at least we are in good company.
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