Faslodex

[Maraki]

Hey guys... Posting for my mom.

How long have you been on faslodex? My mom has bone Mets only which they found by luck.. she wasn't in pain at all she got a scan of her stomach and they saw one spot on her rib.

[rpeacock]

I’ve taken it for a year and 5 months

[rpeacock]

I’m sorry,

[rpeacock]

I’m sorry, that’s not right. I take Ibrance and Femora

[MyMiracle13]

Hi. I have been on Faslodex since May 2018 but I’m taking Ibrance with it.

[Maraki in reply to MyMiracle13]

I have seen that others are on this combo as well. I wonder why he only has her on faslodex

[Maraki]

Thanks for your response!

Are you Mets to bone only?

[Hidden]

Hi Maraki -

It's so wonderful that you're researching and advocating for your Mom! She's lucky to have you!

I have bone mets only. Was on Letrezole + Ibrance for about 4 years and now Faslodex + Ibrance for 1 year. So the Faslodex combo is my "second line treatment". It sounds like your mom is on Faslo only, as a first line treatment. My vague understanding is that doing Faslo vs. Letrezole first vs. second is almost arbitrary...

...HOWEVER, I would definitely ask about the Ibrance because this has shown to nearly double the duration of effectiveness for both Letrezole and Faslodex, although it was initially tested & approved in combo w/ LET and was only more recently tested/approved in combo with Faslo. As far as I know, there is no reason to "hold off" on taking it....you can take the Ibrance with both companion drugs, sequentially....as I and many women on this site are doing/have done.

Have they radiated the one tumor? From what I understand, when you begin with just one tumor, they typically radiate it at full dose (i.e. to obliterate it, not just alleviate any related symptoms) in the 1:1,000,000 chance that it is the only cancer in the system. That's what they did for me and for my sister, at different hospitals.

I'll also mention that these treatments can provide a very good quality of life for years, especially if mets are limited to the bone. It sounds like you're doing all the right things, e.g. asking good questions, getting different points of view, etc. I'll mention the general advice that I always give: don't change treatments until results are screaming at you to do so; if you have options, seek second opinions (regularly), especially from the best cancer centers (e.g. "comprehensive cancer centers", as determined by the NCI, if you're in the U.S.); and consider supplements, diet changes, exercise (the more the better), and things like FIR sauna or heating pads (I use the heating pad for my spine mets), etc, just in case something can make a difference and like, why not?

My best to you and your Mom,

Lynn

[Maraki in reply to Hidden]

Lynn- youre awesome!

Thank you for all that info. No unfortunately the spots are in different places- I think about 6.

So she was going in for aasectomy because they found a small lump and she had breast cancer 10 years ago. The day she went in for the CT scan of her stomach so they would remove fat from there to add to the breast they saw the spot on the rib and after the biopsy and bone scan they saw that it was in her bones.

Last year was the worst year of my whole life and I had just found out I was pregnant. They started her on ibrance and femara last October and now in March there was a new spot on her femur so the oncologist decided to change the treatmemt to faslodex which she is tolerating way better but honestly just living in fear everyday it seems like.

The good news is they found this "luckily" and she has no pain. I'm just hoping that this doesn't fail... Her tumor markers started at 56 and now at 16. All blood work looks good too.

I just hate seeing my mom secretly scared and just different.

[Hidden in reply to Maraki]

Oh, gosh, Maraki, you are a gem of a daughter!

I'll mention that the fact that she lived with no evidence of cancer for 10 years is a major factor in a positive prognosis for her. There are about 6 things that are highly indicative - positively and negatively - of prognosis for longevity....elapsed time between initial and recurrent diagnosis is one of them.

I think this indicates that her body does a good job of fighting this, so it might be important to try to boost that trait as much as possible, through potentially "flaky" ways, e.g. diet, supplements, exercise, happiness (although studies refute this effect, but I refuse to accept them! ), etc.

I'll mention that, when I switched from Letrezole + Ibrance to Faslodex + Ibrance I was concerned, because the second line treatment seemed to have a shorter duration, but then I found women on this site who have been on Faslo + Ibrance for many, many years after "failing" in Letrezole + Ibrance after just a couple/few. This gives me optimism...for myself, AND for your Mom!

BTW, her tumor markers are extremely low....actually within the "normal" (no cancer") range...this too bodes well. Please just be sure that she does not switch treatments too quickly....I had new and extensive new mets 7 months into first line treatment, did not switch, and then remained on that for more than 3 more years. At the time, the doc said that those tumors were probably there all along, just took a while to show themselves. They all cooled off/went away about 2 years in...then increased again, at which point switching made sense, but I'm still building a case for going back!

Congratulations on the baby! Please take care of yourself...

Best,

Lynn

[Have-faith in reply to Maraki]

The fear we have can be terrible. Make sure your mom knows there are different lines of treatment and everyday new ones are being worked on. So....if one does stop working there will be other options. I was on Faslodex but it only worked for about 6 months. Now I am having great results with afinitor. Fantastic results infact and it is easier to take ( a pill) then the faslodex shot. I have a strong tolerance for pain but that darn shot was a lot to handle for me. When my treatment had to change I thought God is doing me a favor here because this afinitor treatment is the best I have been on but it took 16 months to get to it since DX and has the least impact with side effects. Of course in the moment when I heard faslodex wasnt working I thought, "oh no, now what?" Then I quickly refocused my thinking that the new med would be the answer and it appears to be. We cant predict where life this will take us, but neither can disease free people. My former husband who I was still very close to passed away suddenly on Monday. I had just spoken to him 2 days early and we were making a plan to see each other in the near future. He lives in another state. He has been such a positive motivator for me about managing my disease and in a blink of an eye he is gone. Many lessons s here and of course I miss him already. Faith

[Hidden in reply to Have-faith]

Have Faith - I'm so sorry about your close friend/former husband. Truly. And I think you must be a wonderful person to have maintained a good relationship. Take care, Lynn

[Red71]

Please have your mom join us here. If she isn’t computer oriented, show her our responses when you see her. She’s in good company with her feelings. We all start out scared to death, depressed, angry, grief stricken, and feeling all sorts of other feelings when we get that diagnosis. But when you spend time here with women who were diagnosed 10 years ago, Hope raises its head. We have come to look at this as a chronic disease and maybe we can’t do everything we could before but we are living with this disease, not dying with it. There are many others with chronic diseases that have as many problems or more than we do, so we count our blessings. One of your mother’s biggest blessings must be you and the new grandchild! Welcome to the group that no one wants to be in, but we grateful every day for the support we get here. Elaine

[Maraki]

I will, Elaine. Thank you so so much. I don't share what has happened with anyone not even my closest friends or family. Constant questions from people that don't necessarily understand the disease just make me worse for some reason if that makes sense.

I thank you guys so much for your support. She isn't very computer oriented but I will show her everything. She NEEDS you guys. ❤️

[mariootsi]

I have had Faslodex shots for 1 year 3 months and I have been taking Ibrance for the same amount of time.

[Nelsonyong]

Hi Maraki, my mom was on Faslodex alone for 12 months. To avoid pain during jabs, you may ask the nurse if she can use a finer needles. So far, my mom has mimimal pain! Hope Faslodex help your mom. Take good care!

[Maraki in reply to Nelsonyong]

Hi! Are you still on it? What type of Mets do you have?

[Maraki in reply to Maraki]

Sorry. Your mom *** we love our moms so much we neeeeed them!!!!!

[Nelsonyong in reply to Maraki]

It stop working since Aug. So currently on taxol. Do hope it works well for your mom. Easy to tolerate, just use smaller needle. If the nurse willing. Take good care of your mom n your self as care taker

[Lcranaudo]

Also ask them to heat up the Faslodex it flows much easier ..that’s the only way I take it or I give them a hard time...Faslodex is a thick serum and hurts like hell going In. Some times if not warm enough I put them under my armpit to heat up...because they try to tell you they only need to be room temperature......I have been on these shots for 5 years now...

[Maraki in reply to Lcranaudo]

Wow. I hope my mom gets that long in faslodex!!!! Are you Mets to bone only?

[Lcranaudo in reply to Maraki]

Yes an stable

[Nelsonyong in reply to Maraki]

I normally warm it up by holding it. My mom nurse allowed me to do so

[caw2630]

2 years and 8 months. Was determined no evidence of disease after 1 year

[Maraki in reply to caw2630]

Are you Mets to bone only?

[caw2630 in reply to Maraki]

Yes and let me mention that I was also on Ibrance for 2 years and my onc said if I wanted he thought that I could do faslodex only unless it comes back, I have been off of Ibrance since May this year and so far bone scans have been good. I also had radiation at the beginning because the tumor was in my femur and it broke.

[Mammyhen]

I just had for fourth cycle yesterday. Super sore hips n stinky pee. Tell your mom to take her weight of the side they inject, it helps. And if they warm it up and inject slowly.

[Livinthedream]

Since August 2019 but my oncologist sais she has patients on faslodex who have been on it over 7 years

[lynzer]

I’ve been on falsadex for 2 years and also ibrance. I’m almost cancer free, these drugs knocked it out of me along with a few months of radiation then chemo.

The shots hurt but way less than chemo!!!

Good luck! Lynn