Yikes - progression! 😳

[suzi-mac]

Hi all - I am in need of suggestions. I have mets to my spine & been 2-1/2 years on Ibrance & Faslodex. After a recent jump in tumor markers I had a CT scan, which showed "disease progression". I do know it has NOT progressed to any internal organs, but that's all I know at this point. Appointment with my doc next week to go over in detail & discuss next steps. Aside from "what happened? " I don't know what I should ask. I've never really looked at other options, since my protocol was working. I would so appreciate your thoughts and suggestions. Thank you, ladies. 💕

[Barb5]

There are so many different options on medication now depending what you have already been on the doctor will suggest new meds you can ask about side effects of new meds and how effective it has seen it to be on others

Good luck to you let us know how you make out it’s always scary starting new meds but many times it can work out to be less side effects and feel better than previous meds

[Melpub]

I am on the same medications and waiting for the other shoe to drop. But one thing you can do: get genomic testing if you have not already done so. I have five or six wonky genes (including one of the ESR1 mutations) that are statistically connected to "poor prognosis"--but there are clinical trials on medications that (we hope) will dispatch problems caused by these genes.

Genomic testing is expensive--I crowdfunded for it and then my (German) insurance company agreed to pay. So now I have my "desperation oncology" fund in case rabbits need to be pulled from hats.

Also, if ever you feel your doctor's answer is incomplete, or just from interest, email other specialists. Preferably at a university hospital.

[8576]

You have already received some good advice. Especially, not making decisions to quickly. Take a few days or a week and do some research or get a second opinion if possible. Also, there are plenty of options for treatment if you decide to move to the next level. So not panic time yet. And take someone with you to your appointments. A second set of ears is so valuable.Wishing you all the best,

Cheers, June S.

[hurricaneheather]

keeping you in my thoughts.

[mariootsi]

I suggest just wait til you see your onc. I'm sure she will have a plan for you! So many meds available. Thank God.

[Bestbird]

I am sorry to hear you are dealing with a treatment change, but the good news is that there are many options.

Below from my book, "The Insider's Guide to Metastatic Breast Cancer" (which is also available as a complimentary .pdf) is a list of FDA-approved treatments for postmenopausal, HR+, HER- patients. For detailed information about treatments, cutting edge research, and more visit insidersguidembc.com

Hoping you respond well to your next treatment!

First Line Hormonal and Targeted Treatment Options:

• The combination of a CDK4/6 inhibitor such as Ibrance (Palbociclib), Kisqali (Ribociclib) or Verzenio (Abemaciclib) with either an Aromatase Inhibitor (Letrozole [Femara], Arimidex [Anastrozole], or Aromasin [Exemestane]) or with Faslodex (Fulvestrant) is the current standard-of-care as initial treatment.

• An Aromatase Inhibitor alone.

• Faslodex (Fulvestrant) with either Letrozole or Arimidex.

• Faslodex alone.

• Tamoxifen (Nolvadex) or Fareston (Toremifene) alone (rarely used as a first-line therapy).

Second Line Hormonal and Targeted Treatment Options depend upon what endocrine therapy you have previously taken:

• Possibly any of the above therapies.

• Piqray (Alpelisib) in combination with Faslodex if your cancer has a PI3K mutation (more about this below).

• Talzenna (Talazoparib) or Lynparza (Olaparib) if you have a germline (inherited) BRCA1 or BRCA2 mutation (more about this below).

• Afinitor (Everolimus) with either Aromasin, Faslodex, or Tamoxifen.

Third and Fourth Line Hormonal and Targeted Treatment Options depend upon what endocrine therapy you have previously taken:

• Possibly any of the above therapies (although not all options are widely used in a third- or later-line setting).

• Verzenio alone (after disease progression on endocrine therapy and prior chemotherapy for MBC).

• Either Ethinyl Estradiol, Megace (Megestrol Acetate), or Halotestin (Fluoxymesterone).

Chemotherapy is usually prescribed after 2 to 3 lines of endocrine-based therapies (and/or the targeted therapies above) have stopped working. A clinical trial may also be a consideration. Once the cancer has regressed or stabilized, it may be possible to go back on a previous therapy if sufficient time has elapsed and if the initial response to the therapy had been favorable.

If you have bone metastases, you should receive a bone-directed therapy such as Xgeva (Denosumab) or Zometa (Zoledronic acid) in addition to your other therapy.

If your cancer has progressed on first-line hormonal therapy and has a PI3K mutation, then you are eligible to take Piqray (Alpelisib) tablets along with Faslodex. Piqray is a PI3K inhibitor that has shown a clinically meaningful benefit in treating patients with this type of breast cancer. A diagnostic test called “Therascreen PI3KCA RGQ PCR Kit,” has been FDA-approved to detect the mutation in a tissue and/or a liquid biopsy.

If you have a germline BRCA mutation, you may want to speak with your doctor about taking a PARP inhibitor such as Talzenna (Talazoparib) or Lynparza (Olaparib), which are FDA-approved for HER2 negative MBC patients with a BRCA mutation. Talzenna or Lynparza is generally prescribed for hormone receptor positive, HER2 negative MBC patients with a BRCA mutation after first- or second-line therapy has failed.

Although very rare, if your cancer has microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) characteristics, or is Tumor Mutational Burden-High (TMB-H), and if you’ve progressed on prior therapy and have no satisfactory treatment options, then the PD-1 inhibitor Keytruda (Pembrolizumab) is an FDA-approved option. Dostarlimab-gxly (Jemperli) has also been FDA-approved for the treatment of adult patients with mismatch repair-deficient (dMMR) recurrent or advanced solid tumors who have progressed on or following previous treatment and who have no satisfactory alternative options.

If your cancer has a Neurotrophic Receptor Tyrosine Kinase (NTRK) gene fusion without a known acquired resistance mutation, and if you’ve progressed on prior therapy and have no satisfactory treatment options, Vitrakvi (Larotrectinib) and Rozlytrek (Entrectinib) – oral tyrosine kinase inhibitors that act as an "on" or "off" switch in many cellular functions – are FDA-approved options. NTRK fusions are extremely rare, occurring in only about 0.5–1% of common cancers.

[suzi-mac in reply to Bestbird]

Thank you for all of this!

[Hidden]

Hi Suzi-mac - I'll apologize upfront...I didn't fully read the responses and don't have time to write a fully cogent response, but let me mention this...

I've had bone-only mets for just shy of seven years. Three times I've had what has been called "progression", like you, just more bone. The first time I changed treatment, which I regret to this day. The next two times I asked my doc to let me remain and see how things go. The most recent was in March of this year. My subsequent two scans were stable or maybe better ("stable, sclerotic"). Even my doc has said that I was right to push her not to make a change. My progression was described as "numerous new bone mets" or similar.

I just get the sense that these new drugs maybe don't "fail" dramatically, like the IV treatments do. Not as precipitous a decline? And since changing treatment is often like walking down a step stone in a path -- i.e. it's hard to go back -- my approach re: riding each pony as long as she'll go has served me well...

Good luck with the decision!

Best,

Lynn

[suzi-mac in reply to Hidden]

That's so encouraging - thank you!