If Ibrance failed for you, what was next in line?
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Jack5ie, I think Xeloda seems like a logical next step for you. I found Xeloda to be very tolerable, personally, and I was on it for about eight months. I thought in some ways Xeloda was more tolerable than some hormone medicines.
Xeloda did not work for me in the metastatic setting (we briefly tried it again after Ibrance failed catastrophically), so I am back on IV chemo now (Gemcitabine/Carboplatin). However, some people here get a long time out of Xeloda and have good results.
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I was on A/A for almost 3 years and it was great. Then my TMs started going up so they did a pet scan and found some cancer in my spine. So, off the a/a and onto xeloda and nykerb. Lots of side effects. Diarrhea, dizzy, I fell 3 times, major fatigue and my legs are so weak and I’m always cold. Has anyone had any of these and, if so, any tips for me? Thanks!
I had a brain and spine mri last week and a cts scan. Everything was stable. And the TM had dropped from 375 to 185 so it’s working but I’m not having much fun.
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Eljay, when I first started Xeloda at 3300 mg, I had the diarrhea and horrible HFS in feet only. After a few adjustments, I am on 2150 mg and tolerable feet issues.
https://community.breastcancer.org/forum/8/topics/...
Attached link to Xeloda thread
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thanks. I’m on 2300 7/1. I find it hard to drink so much! I use a soda stream and adda little bit of lemonade.
the worst thing is feeling so unsteady. I can’t do any exercising.0 -
buttonsmachine have they suggested zykerb to you? It’s quite new.
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Hi Eljaywest. Just waving hello as a fellow Victorian! Looks like we are on the same dose of Xeloda as well but I'm still 14/7 in terms of my schedule. I also find I have a lot of fatigue and some lightheadedness. The HFS is an issue as well, particularly the pressure points on my feet (heels and toes mostly) and my finger tips. No peeling to speak of with the exception of the tips of my thumb. Hesitate to tell my MO as I want to make sure the liver mets shrink. First scan on Monday so here's hoping I see results!
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Eljaywest - hello fellow British Columbian!
I've never heard of Zykerb.. Could it be Tykerb / lapatinib? But that's not terribly new. BC approved it in 2011 her mets in HER2+. I don't think it's useful for HER2- ?
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Eljaywest, I did a quick search for Zykerb, but like moth said I came up with Tykerb. :-) I'm technically Her2 negative, so sadly the Her2 positive drugs are not really available to me for the most part.
However, my oncology team did recently point out that I am actually Her2-low (Her2 with a plus 1, to be exact). Usually to be considered Her2 positive I think you need to score plus 3 or higher, but there are a few clinical trials that are experimenting with drugs like Enhertu on Her2-low patients. So that could be an option if this chemo ever fails. The overall recommendation is that iv chemo will have the best result for me right now, and that I should stick with this regimen for as long as it works and for as long as I can tolerate it. I definitely feel like I can't do iv chemo forever, but my hope is that if the cancer gets into a better place, maybe I can go on an easier drug for maintenance. We'll see.
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The sequence of approved non-chemo treatments for postmenopausal patients (and men) with HR+/HER2- MBC tends not to be well-understood among patients. 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 therapies. For more information please visit https://www.insidersguidembc.com
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).
Did you know?
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.
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.
*The above hormonal treatment options are recommended for patients who are not experiencing "visceral crisis" (severe organ dysfunction and rapid progression of disease). For patients who have visceral crisis, chemotherapy may be used straightaway to control the disease, after which endocrine-based therapy may be a viable option.
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sorry I am on 14/7 of the xeloda and it’s not zykerb it’s nerlynx or nenatanib.
My brain some days!
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Bestbird - you are an angel! Thank you so much for your research and easy to read and understand summary!
I had 3 great years on ibrance/falsodex. Then last year had 2 small progressions in the hips. We radiated them and they continue to shrink. Though I fell like I am still healing from the radiation. A year later I just had another new met show up on the iliac. Primary Onc suggests to radiate it with the thought it is small and should allow me to stay on I/F longer. Second opinion onc says radiation only for pain. Let it grow and hopefully get a biopsy to plan next therapy.
Wondering if anyone else has used radiation this way? To stay on a therapy that has worked well?
Thank you so much for your thoughts! Truly appreciate all of the love, support and wisdom in these groups!
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perky, yes, I have had radiation to a lung met and a bone met (a totally asymptomatic one) to enable me to stay on the treatment which is shrinking my liver mets. I call it the whackamole treatment plan. I'm TNBC and have very few lines open ahead so staying on 1st line is super important for me.
if you want to have a read on pubmed your keyword is "oligoprogression"
there are several trials investigating localized treatments for these small progressions and evaluating whether they confer pfs or os
also, I'd suggest reading through the bone mets thread for more people's experiences with progression and how they approached it
hth
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perky2020 and moth, there is a considerable amount of work being done on oligometastases, which is usually characterized by a solitary lesion (tumor) or a few detectable lesions. These lesions are generally limited to a single organ, in which local therapy (possibly along with systemic therapy) with curative intent could impact survival in a positive manner. This population of "potentially curable" MBC patients is estimated to represent 1% to-10% of newly diagnosed patients with MBC.
A multimodal approach is endorsed for this group. Patients with OM disease can be divided into 3 subtypes:
Those who initially present with Oligometastases
Those with residual Oligometastases after Systemic Therapy (ST)
Those with relapsed Oligometastases after curative locoregional therapy
My book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf, depicts studies that infer that locoregional treatment combined with systemic treatment may confer superior survival. For additional information, please visit https://www.insidersguidembc.com
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Hi Bestbird,
Thanks for the information. I’m wondering if you have any information or are aware of studies on oligoprogression which Moth referred to. I am aware of one study of SBRT here in Canada but am anxious to find more. There are many of us with extensive yet stable disease who have progression in a single organ. It helps to justify the whackamole approach.
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Would it still be considered oligometastases if there is random lymph node involvement as well?
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In terms of what comes after Ibrance-Femara, there are two ongoing clinical trials looking at response to Faslodex combined with either Ibrance or Ribociclib. One is a Phase II clinical trial looking to continue with Ibrance in combination with Faslodex in HR+/HER2- patients who got a clinical benefit from firstline endocrine Ibrance-Femara treatment (PALMIRA) (NCT03809988). The other is the MAINTAIN trial (NCT02632045) taking patients who had an AI plus Ibrance or ribociclib, and moving them to fulvestrant and ribociclib. The purpose of these trials is to determine whether there is continued benefit for patients to remain on a CDK4/6 inhibitor at the time of switching anti-estrogen therapy.
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In addition, the Triniti-1 trial is testing adding ribociclib to Everolimus-Exemestane. Clinical benefit rate of 41% at six months for those who progressed from Ibrance-Femara. For ESR1 mutant cancers the suggestion would be try Everolimus and Ribociclib with Faslodex instead of Exemestane. Not fully clear whether including the Ribociclib is helping the response to E-E, its still early days for the trial.
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Cure-ious,
I just looked up the Triniti-1 trial and on clinical trials.gov, it says that the study results have been submitted and have actually undergone their quality control review as well -- results back to trial people on March 15. So we may actually see some of that data sooner rather than later.
It made me happy to see the word "triplet" on the clinical trials page. Happy that they are finally looking at combos of these very powerful drugs.
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Sadiesservant, I haven't seen a study on oligoprogression, although there may be one out there. Recently a major survey was sent to medical oncologists about how they treat oligometastases, and perhaps we'll hear more then.
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Sadiesservant/ Bestbird - It does look like there is a bit of activity and interest in treating Oligoprogression differently. My primary Onc is recommending radiation for the one new bone met, second opinion says only use radiation for pain. That I should let the met grow and get a biopsy to plan next line of therapy. That she wants to save my bone marrow for potential future chemo. My gut says to do what I can to stay on the current Ibrance/Falsodex therapy - or is that fear....not sure!
I have an appointment with a RO on Tuesday to discuss further.
Sadiesservant - what is the name of the trial in Canada? or do you know how I could get additional info on it?
In the mean time here is what I have found:
Seems there is a stage 2 trial but I am not sure how to access additional information on where it is being conducted or if it is still open,
Stereotactic radiotherapy for oligoprogressive ER-positive breast cancer (AVATAR)
From <https://bmccancer.biomedcentral.com/articles/10.1186/s12885-021-08042-w>
AVATAR is a multicentre phase II registry-based study designed to assess the time to change in systemic therapy in patients with oligoprogressive breast cancer receiving an AI in combination with a CDK 4/6 inhibitor, after SRT to all oligoprogressive lesions. Secondary aims include overall survival, progression free survival and treatment-related toxicity.
Exclusion:
Previous radiotherapy in which the treated area planned to receive treatment is greater or equal to EQD2 40 Gy.
Additional articles seem to point to using local ablative SDRT/SBRT for oligoprogression. I am not sure if my insurance would cover that?
https://pubmed.ncbi.nlm.nih.gov/32846945/
https://pubmed.ncbi.nlm.nih.gov/29147583/
https://pubmed.ncbi.nlm.nih.gov/31182289/
https://pubmed.ncbi.nlm.nih.gov/29735409/
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Sorry Perky. I’ve looked for it but can’t find the title. Moth mentioned it in one of her posts. I see Comet listed on the Canadian trials site but that’s for oligometastasis.
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perky, it's the STOP trial https://clinicaltrials.gov/ct2/show/NCT02756793
I enrolled in it & was randomized to standard of care instead of SBRT//SABR & then my RO suggested I pull out as he would do a higher dose of traditional rads than what the trial allowed. So that's what I did...
I hope they publish some data soon.
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Thank you very much Moth! Will send to my RO. Maybe she can get some early results?
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Can you have withdrawal symptoms from Ibrance/Faslodex? I've been so achy throughout my body. A little nauseous too.
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I personally did not have withdrawal symptoms from Ibrance/Faslodex, but maybe others will chime in. I did have worsening symptoms around the time I stopped Ibrance/Faslodex, but in my case it was due to cancer progression. Hopefully that is not the case for you. Have you decided on a new treatment?
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buttonsmachine...I don't think it's from the cancer progression because as of now it's only progressed to a couple of lymph nodes and small areas in a couple bones. According to my doctor it's minimal progression. Maybe it's from getting the Xgeva as usual, but on it's own. Or maybe stress. I don't know. I just feel achy, tired.
No I still don't have a treatment plan. I'm hoping it's soon though.
Thanks for replying.
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It doesn't sound like your symptoms are from progression, fortunately. I wonder if it could be the Xgeva. Or stress, as you said, which can also make us feel terrible. MBC is just rough. Whatever the cause, I hope you feel better soon.
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Thank you buttons.
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Update on the 4/7 PET. We have mixed results. We will stay on Abraxane for at least one more cycle, hopefully two, stretch goal is three. We will monitor tumor markers every couple of weeks instead of once a month. If markers start heading up, we move up our quarterly PET and see what is going on. We are also paying attention to those tumors that don't seem phased by the chemo. We discussed possible biopsy of one of these resistant suckers and see if the hormone status has changed or if the chemistry in these suckers is different in any way.
So stay the course for now. We still have lots of tricks in the bag, including Piqray.
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Hello Bestbird,
I need someone to give me a listening ear. You have a lot of research and so I am reaching out to you.
I have been a stage IV ILC ( Denovo) since 2018. Left Mastectomy Aug.2018. Extensive Mets to bone & Bone Marrow.
2 rounds of chemo in 2018 put me in hospital with typhlitis...that is when Stage IV was discovered!
Tried Ibrance 125mg March 2019 in 2 weeks ended up in hospital again with severe infection.
Off Ibrance and started Anastrozole. Stayed on that until March of this year when I started having intestinal issues. On April 4th I ended
up in hospital with severe Rt. intestinal pain. 5 days on NG tube and then Intestinal bypass. Cancer scattered throughout colon & intestine.
The reality is it has been showing on Pet Scans since 2018 after the typhlitis Infection and reports always stated inflammation or colitis and always stable.
After recovery from surgery ( May 24th will be 6 weeks) my MO wants me to start Ibrance 100mg and Faslodex. Start them both on same day.
I am still having some recovery issues with Intestine and I don't think I am ready to start but also know there is an urgency to get treatment started.
My gut says start low 75mg and see if I tolerate that first. I am trying to protect Intestine and fight the progression.
I appreciate any thoughts!
Thank you,
Bootsie
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