Faslodex alone?

[Clair19]

Does anyone know if they can use Faslodex alone for mbc? The reason I ask is because I’m having a hard time with the class of drugs Ibrance and Verzenio. I want some quality of life at this point. I’m 63 and can’t even enjoy a dinner with my husband due to nausea and weakness. Any suggestions? I go back to Dr on the 11th. Thanks for listening to me complaining about everything.

[Mcap]

Claire, I'm so sorry you had to cancel your vacation. I wish you would have had better luck on the Verzenio. Is there a lower dose for the Verzenio? I've been on nothing but letrozole for a month now. The 100mg brought my neutrophils down to 4.75 after a month. I needed my neutrophils levels to come up so that I could have my surgical biopsy. Had the procedure done last Wednesday. They removed three wedge shape sections from my left lung and got three plus nodes. Haven't received results yet. Even if I get to return to the ibrance I will probably be put on the 75 mg. Not sure they will do that though because of the mixed results on my CT scan. I have an appointment on the 11th with my oncologist to discuss new treatment plans. And I won't be surprised if chemo is part of that treatment. So I understand when you say you're feeling a little down I'm kind of in the same place. Maybe your doctor will let you try the 75mg ibrance. Good luck and let me know how you're doing.

[Clair19 in reply to Mcap]

Thanks for that! I’m glad you finally got your biopsy done. I go on the 11th also, for more in-depth blood work. I’m thinking Verzenio has 50mg. I wish they would start lower dose and work up if needed. I have to take it twice daily. I understand it also can cause brain Mets due to it breaks blood barriers to brain, something else to worry about. I had no problems with 100 mg Ibrance just Neutrophils but he could have tried 75mg. I hear from him all the time I don’t look like a cancer pt, and he thinks I will go into NED. I know that’s positive and I love that but I would like some quality of life. I hate getting up due to feeling so sick and weak. I know I have cancer but I felt so much better before Verzenio. I did chemo for 6 months and felt better than this. Have you had chemo? I was expecting worse than it was. Very little nausea mostly dry skin. With Doxil it was only 1hr. and monthly so not to bad. I lost weight but I needed to. Please keep me posted on your new treatment, as I pray it will be easy as mine was. 💗

[Jerseygirl45 in reply to Clair19]

My doctor is trying to avoid chemo. Did you lose you hair?

[Jerseygirl45]

I think you need the two drugs. The first starves the cells second one shrinks them. I know I saw a commercial for about her new one on tv, but forget the name. I will watch for it.

[Clair19 in reply to Jerseygirl45]

Hey Linda, I’ve been meaning to write you. What happened was after the 6 straight months of chemo my immune system got drained. So when he put me on Ibrance my Neutrophils got below 5 hundred, then took almost 6 weeks just to reach 1.9. Then started me on Verzenio and I got really sick, almost landed in hospital, so he told me he was going to give my body about 6 weeks to rebuild everything. So I start in September along with Faslodex. I’m Her2 Negative, so far it has been stable. I have been feeling to good, and gained back all my weight from when I was diagnosed. My in-depth blood work came back excellent and I’m breathing better. Just shoulder pain but I’m packing so could explain. It’s in both my humors bones so I don’t need fx.Anyway just wanted to let you know that’s why I haven’t been on any targeted therapy. Hope you enjoyed your weekend. Yes Leslie middle name is Clair after my Grandfather.

[Goo-da-Goo]

Hi Clair19, I have been on faslodex for about six years now and nothing else. It is working great for me but I am a strange duck lol

Ask if you can try it alone for awhile and see what happens.

I think this is a game of trial and error most of the time kind of like let's try this and see if it works.

I wish you good luck and hope something will work better for your quality of life.

Best wishes

Becky

[SeattleMom in reply to Goo-da-Goo]

Hi, Becky!

Just curious as to whether you are still on Faslodex alone? I was on Ibrance/Letrozole for 34 months before progression. Now on Faslodex alone. Will be having 3-month scan next month to see if hot spots on iliac have shrunk.

God bless you! 🙏🏻🙏🏻💗💗

Linda

[Goo-da-Goo in reply to SeattleMom]

Hi Linda

Yes I am just on faslodex alone and i am ned as of now i will have scans in jan so we will see how that goes. I have been on this longer than anyone, the drug reps always ask about me lol. I pray and hope you have great results from this med, i no the shots suck but i'm still here been at this game since 2004 and the docs said i had 2-4 yrs well i showed them what god can do.

God bless you to

Becky

[SeattleMom in reply to Goo-da-Goo]

Hi, Becky!

That is so amazing! When were you first diagnosed with MBC and what meds were you on prior to Faslodex? You give me hope! I haven't found the shots so bad--I always ask that I be able to lie down and just roll from one side to the other. So far, so good!

And you are so RIGHT about the grace of God! May He bless you always, Becky!

Linda XXOO

[Goo-da-Goo in reply to SeattleMom]

2009 was when I found about the mets. I have been on femara, xgevia, zometa and i lost all my teeth and some of my jaw on this,some others that i dont remember and the faslodex. I have about three days after were i dont feel to hot but thats it. I hope and pray you have good result with this med.

God bless

Becky

[SeattleMom in reply to Goo-da-Goo]

Thank you, Becky! So sorry about loss of teeth and jaw! I take the Xgeva every three months, but so far no problems with jaw (although I have read that it can cause problems). Thanks so much for your prayers! I wish all the same for you, dear sister!

Love, Linda XXOO

[diamags]

Clair, I would listen closely to your oncologist, and if you don't trust what he says, get a second opinion. You're dealing with your life here and there are no do-overs. Go with those who study this and deal with it. But please, don't search the internet and make these important decisions with anecdotal evidence. We are all unique with different genetic make ups which react differently to these meds.

I wish you well on your appointment on the 11th.

[MaryJ-S]

Have you had progression while using Faslodex with Ibrance and Faslodex with Verzenio?

Did your Dr. give you a prescription for Nausea? Normally Faslodex is not given alone with MBC. But let your Dr. know how you are feeling. There are other drugs that may be easier on you. Both Ibrance and Verzenio are 4/6 CDK inhibitors. A mTOR drug may work better for you. All of these newer drugs can take a few months to get use to so try and be patience. But if you have been on them for a few months then it may be time to try something different. My husband usually brings me dinner from some of my favorite restaurants. Sometimes the food tastes different and other times it is OK. But it is important to eat, as I am sure you know.

Hoping things get better....

[Clair19 in reply to MaryJ-S]

After the Doxil I took Faslodex and my blood work was so bad I could have died. The Other did not work either. Im finally not nauseous as he put me on medicine. Im feeling much better thank you!

[Clair19 in reply to MaryJ-S]

Sorry meant to say Ibrance. It took my Neutrophils almost 2 months to get just to 2.3. So right now we are making sure scans and blood work are okay until September, then something else I will try.

[MaryJ-S]

Glad you are feeling better!!!

[Clair19 in reply to MaryJ-S]

Thanks much better, I have gained my weight back to where I was when diagnosed. I’m eating everything and anything. Thanks Just my left arm is bothering me.

[Klamato]

I do think that the combination of Faslodex and Ibrance is the standard treatment. Did your doctor prescribe Zofran for nausea? It works wonders for me. Try it!

[Jerseygirl45]

Clair19

I am on Faslodex and Afinitor and so far there are no side effects from the Afinitor. So maybe ask your doctor about it.

[Jerseygirl45 in reply to Jerseygirl45]

Well let me update you all on no side effects on Afinitor. Started the second week. Chills, headache, nausea, mouthsores, acne spots on my neck, itching on back of neck, weakness no appetite, lost 9 lbs.Doctor felt so bad gave me 6 prescriptions. Zofran, mouth paste, antibiotic cream cortisone for itching. She would like to give it 2 mo and see blood work. May get better with time. My 2nd month of meds is being held up until Tuesday. Today is second day without it and I feel a lot better.If it proves to work. I guess I will have to get by.I only had thinning hair on Ibrance, but it stopped working after two years. I sure hope it gets better!

[Jerseygirl45]

Thanks. We really don't have a choice.

[quetzali1262]

dear Claire I am in France, and tomorrow I have that same question for my Oncologist

can I used Faslodex alone? because I been having the shotsm

for the past 2 1/2 years with Palbociclib (Ibrance), but my marquers are way Up. I am 72 and have mbc (after 14 years surgery). Will get back to yuo tomorrow to let you know what my Oncologist said.

This is my first time on this chat and hope I am doing this right. But seems to me that we have the same problem.

Best regards.

[Clair19 in reply to quetzali1262]

Greetings to you, seems your doing things correctly. I’m sure your oncologist will say you need targeted therapy along with the Faslodex. I just can’t take it Ibrance due to low CBC and Neutrophils. I have my first scan tomorrow so I’m very worried. Mostly because I have not had one for 5 months. I’m praying for stable. May I ask what your markers are at? Mine are 413, where 817 last summer. I went 17 years until last summer, I’m thankful for that. Now rt lung and spine. I hope you get what you want with Faslodex. Good luck!

[Nelsonyong]

Hi Clair, which marker you were tested? Pray that you will have a great scan result tomorrow. Don't worry and take care.

[Clair19 in reply to Nelsonyong]

Ca 2729. My scan was changed from last week to today. I’m so nervous making my self sick. How silly for a grown woman. Thanks for asking.❤️