Faslodex and next steps: Well, we were... - SHARE Metastatic ...

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Faslodex and next steps

Snowcone16 profile image
15 Replies

Well, we were debating between xeloda and faslodex for a week. But, 3 opinions say faslodex. The 3rd dr said “it probably won’t work but there is a small chance it may”. He explained that some tumors that are hormone driven have something like ESR1 protein that make it resistant to hormone therapies. He said faslodex works for those scenarios. Thanks ladies for your posts on making those shots easy. Didn’t hurt although it was intimidating to see 😯 But I asked nurse to warm the shot.

We also did an ultra sound of liver and I have to schedule biopsy. Then they will also send off for molecular sequencing to see if there is a targeted approach.

There was some discussion “of its TNBC..” but dr was very optimistic about it. Says there are lots of trials and advances for TNBC. Apparently, the tumor is now 50% ER and negative for estrogen. I was at 70% when I was stage 2 and think 50% for progesterone.

Between biopsy and sequencing, dr said with holidays we are probably looking at 2 months for next steps.

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Snowcone16 profile image
Snowcone16
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15 Replies
Snowcone16 profile image
Snowcone16

Correction..tumor is positive for estrogen at 50%, negative for progesterone

Hi Snowcone,

I hope that this treatment plan works for you. Keep us posted!

Take care,

Sophie x

mariootsi profile image
mariootsi

Thinking of you! Hope your new plan works. Sending prayers and hugs!

Tam-56 profile image
Tam-56

Snowcone

It sounds like you have a great medical team behind you and you are making well informed decisions. Sending you prayers and healing energy! ❤️❤️❤️

NPmary profile image
NPmary

You are going through a lot! Let us know how you do. Is this your second line of treatment? Were you on Ibrance to start with? I wish you many good days, happy holidays with your family and peace in the new year.

Snowcone16 profile image
Snowcone16 in reply toNPmary

Yes, in the metastatic setting this was my second. Ibrance/letrozole failed after 4 months. Afinitor and exemestane failed after 2.5 cycles. Happy holidays! ❤️

NPmary profile image
NPmary in reply toSnowcone16

I am so sorry you had these failed treatments. Praying that your next plan of care stops this ugly progression of cancer. Take care, Mary.

🎋♥️🎋

Snowcone16 profile image
Snowcone16 in reply toNPmary

My coworker told me it took them 18 months to find her combo. Now she is 2 years NED.

NPmary profile image
NPmary in reply toSnowcone16

That's great news, l hope to hear the same about you. Unless my chest ST shows something I'm doing pretty well with just bone Mets progression.

Magsue profile image
Magsue

Hi - I just saw this post and I think I’m in your boat! Ibrance/leteozl failed after 8 months, now Friday scans show a couple more spots on liver after 3 months Afinitor/Flaslodex — see Dr Tuesday been some discussion about Xeloda next... are you only on Flaslodex? How’s that working? Clearly I already failed w the combo - don’t think dumping Afinitor would help?? What were you on with Afinitor? All these drugs are so confusing! Super bummed had very good results in January with Afinitor...surprised to see a couple new small spots — but they never seem to wait and see. Love hearing sometimes it takes time to find the right cocktail - just sad as my Drs were convinced I would resoond well considering Stage 3 In 2011 — and got 7 cancer free years. Any input or advice is welcome! Thanks. 🙏 to us alll...

Snowcone16 profile image
Snowcone16 in reply toMagsue

I took afinitor w exemestane and it did not work. Then they sent my tumor for molecular sequencing. While that was going to be a few weeks for results, they started faslodex. Then the sequencing showed I wasn’t going to respond to faslodex either. At that point, I had the choice to enter trial or do xeloda. Onco suggested trial because I could always fall back on xeloda.

I only did trial a month...way too many side effects. My tumors grew...so they wanted a chemo lite combo but stronger than xeloda. I just started the IV chemo GemCarbo. Only had one treatment so far...wbc were too low so I have 3 weeks off to get them up. 🤗

Magsue profile image
Magsue in reply toSnowcone16

I’m sorry that it’s a rough road! I need to know more about that testing.. is that Foundations One? My came back 20% BRCA - which was not there on original diagnosis! But that all it showed. She said that will be down the road. Or did u have a different test? My Dr wanted to Xeloda after Ibrance - but 2nd opinion at UCSF said Afinitor was reasonable to try. Had a great reduction at first scan — but recent shows those buggers are back. I’m on Beta Glucan (better way health brand - lots of research I think best) and a Matake mushroom condensed drops for my WBC and overall immune. Oncology was had nothing for me regarding building those - my Naturapathic laughed and said yes.. lots to try to get those up! I also take a Zinc —All natural so no issues. You might check them out. And meditation builds immune so go to YouTube and check healing mediations. I listen at least twice a day and they have sleep ones when my mind won’t shut down!! Wishing u the best - thanks. Let me know the name of the test please!! 🙏

Snowcone16 profile image
Snowcone16 in reply toMagsue

It sounds like you had genetic testing. That’s where they checked by blood if I had BRCA or any other cancer genes. Came back negative but here I am...

Molecular sequencing is done on a new solid tumor. It will tell all the mutations and amplifications of genes in the cancer itself. Insurance paid for it. Mine was sent to Caris in AZ. It was supposed to take 2-3 weeks because of holidays but came back in 10. I have about 2 amplification (FGFR makes me hormone resistant) and 3 mutations. So, now we are taking a triple negative approach although I was 90% ER and last biopsy 50% ER.

❤️

Snowcone16 profile image
Snowcone16 in reply toSnowcone16

I’ve done healing hypnosis on YouTube. Just started my spirulina again.

Magsue profile image
Magsue in reply toSnowcone16

No- I did foundation one (for mutation) which was taken off the tumor I found on my scar on this last year. But nothing came back other than the 20% BRCA mutation. Which was not traced through blood 8 years ago. They said it can happen but rare or maybe technology better. Keeping the faith!!

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