hello,
I was diagnosed in June 2022. Started Ibrance and Letrozole in July. First scan after treatment was started was in November and it showed no progression. My scan last week showed a slight progression in one area of bone Mets and one new lesion. Any ideas what may be next?
Hi! If your Mets are only in bones, they could consider radiation on the spots and keep you on current therapy. It depends on factors that can be analyzed only by oncologists, of course. 🤞🏻
I've had scans which have shown "new" mets in different vertebrae than previously shown. My oncologist was not concerned as Nuclear Bone Scan confirmed none of the "new" mets were active disease. They are still keeping an eye on the biggest met which was visible on my very first scans - I've had radiotherapy on this twice. It's not shrunk at all but isn't growing so, again, oncologist not concerned.
I am on Ibrance/Letrozole too. I'm also on Denosumab to strengthen my bones - are you on this?
I guess it's up to your oncologist as to whether they believe the current treatment is being effective or not. I've seen on this forum that there are alternative treatments so it's not necessarily the end of the road for you.
Best wishes!
Hi Wendle, So I had a bone scan in March and it showed good improvement and treatments were working. I just had the CT Scan because I can't do MRI due to bone stimulator from old back fusion surgery decades ago. So far the CT scan showed no progression to any organs and some tumors in lymph nodes continued to shrink in size or disappear. So I'm now going back to research the first bone scan to see if the new lesion is in fact a a new lesion or one that just wasn't visible in previous ct scan. I'm hearing it is possible for it to look like slight progression when Ibrance is working. I emailed my doc to see if she wants me to change anything or come in before my next scheduled visit in July... Waiting to hear back but really appreciate all the input. Wondering if anyone else has had great improvement with breast and Lymph node tumors shrinking or disappearing and had what appeared to be a slight bone progression after being on meds for 7 -8months.
I’ve been on a rollercoaster over past two years with reports of ‘new’ areas of possible concern that are ? possible early signs of progression that are then not reported on next time - ie stable or disappear. The docs will discuss different options with you depending on your unique tumour characteristics, radiation, change meds etc. Best wishes - I appreciate it’s very stressful.
Hi
I was on the same treatment for 8 mos.. A 6 mo. scan showed growing and spreading. Subsequent blood draws on mo. 7 showed a spike in my numbers, mo. 8 showed yet another spike. More extensive blood work showed exactly what my mets mutation was and I was set to begin Piqray w/ Fulv. inj. - I chickened out on the Piqray in the last hour and I currently just had my 5th weekly 1 hr. infusion (3 wks. on, 1 off) of Taxol 150mg.
I guess m I'm saying the scans and blood work keep a close watch on mets and there are quite a few treatment and trials options.
One caveat, when my onc ordered the more extensive blood work, he ordered a bone biopsy as soon as possible at the same time. I had the scan done w/in 4 days. He called me in for a consult - I thought is was about the biopsy? He told me the blood work showed the mutation I have, and don't worry about getting a biopsy. I replied, I already had the procedure (6 hrs. in hosp. total)? He has never discussed the biopsy w/ me and I forget to ask m+ don't want to stir things up. My question would be why order the biopsy asap when blood work may find what they're looking for?
Thanks for listening to me, I wish you all the best, you're not alone, Jim
Biopsy would confirm it is same as orig cancer. Not something with a different treatment option needed.
Thanks. I do what the onc tells me - ) Jim
What is the blood work done?
I don't know but will find out. At my onc visit, he ordered a biopsy and sent me down the hall for blood work. I recall the blood work was 3 more vials than normal. JHe was looking for something specific to attack and It found the mutation in the blood results. I do wonder why he ordered both labs and biopsy - perhaps coluda waited for blood work results. It is the mutation that 50% of mbc patients have.
I'm sorry I don't know more - I get so many print outs for weekly labs , I stopped scanning them. Best, Jim
If he found mutation, he must have done tests beyond tumor markers that look at genetics of your cancer. It is called a "blood biopsy." Much easier than a physical biopsy. Too bad you went through that when the blood biopsy had the info! (It could be one of several tests, including Foundation One or Guardiant.) You are much more trusting than I am. I have the illusion of control because I stay on top of my test results and ask many questions (often unanswered). In the end, I go with the oncologist's opinion, so wind up in the same place. Most of the time.
I am sure you are correct and I remeber 'Gaurdiant'. Thanks
Good morning lovnmycat,
To answer your question, I used to be on Ibrance and Letrozole when I was first diagnosed (2019), and for the first year, I was NEDS. Then, in 2021, there was a small lesion that showed up on my left iliac bone and I had 1 radiation treatment to zap it. I thought I was clear until it showed up in 3 spots surrounding the original lesion and was also in a destructive area (upper left femur neck). After 10 radiation treatments to that area, it weakened my bones even more and I ended up having a complete hip replacement, which included cutting into the bone and replacing me with a whole new artificial femur. Now, my breast cancer is ER/PR+ HER2_ and I found out that I developed a resistance to the therapy that I was on. Specifically, an ESR1 mutation, which is not uncommon and found in over 50% of women who are on hormonal treatments, which was what I was on. I had soft bones and am now on X-Geva and I also take other bone building supplements to make my bones strong. I have since then stopped the hormonal treatment and am now on Xeloda. Its scary because that is where breast cancer wants to go to. What type of cancer were you diagnosed with?
are you saying the mutation develops as a result of hormonal treatment? And also weakens bones? Which it does
Here is information on it: Cited Article: ESR1 mutation as an emerging clinical biomarker in metastatic hormone receptor-positive breast cancer
Jamie O. Brett, Laura M. Spring, Aditya Bardia & Seth A. Wander
Breast Cancer Research volume 23, Article number: 85 (2021) Cite this article
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Abstract
In metastatic hormone receptor-positive breast cancer, ESR1 mutations are a common cause of acquired resistance to the backbone of therapy, estrogen deprivation by aromatase inhibition. How these mutations affect tumor sensitivity to established and novel therapies are active areas of research. These therapies include estrogen receptor-targeting agents, such as selective estrogen receptor modulators, covalent antagonists, and degraders (including tamoxifen, fulvestrant, and novel agents), and combination therapies, such as endocrine therapy plus CDK4/6, PI3K, or mTORC1 inhibition. In this review, we summarize existing knowledge surrounding the mechanisms of action of ESR1 mutations and roles in resistance to aromatase inhibition. We then analyze the recent literature on how ESR1 mutations affect outcomes in estrogen receptor-targeting and combination therapies. For estrogen receptor-targeting therapies such as tamoxifen and fulvestrant, ESR1 mutations cause relative resistance in vitro but do not clearly lead to resistance in patients, making novel agents in this category promising. Regarding combination therapies, ESR1 mutations nullify any aromatase inhibitor component of the combination. Thus, combinations using endocrine alternatives to aromatase inhibition, or combinations where the non-endocrine component is efficacious as monotherapy, are still effective against ESR1 mutations.
I just attached a cited article on the ESR1 Mutation developed from hormonal treatments. I also want to add that I was taken off of Ibrance, Letrozole & Exemestane, all of which I developed a resistance to and was put on Faslodex (Fulfrestrant) because of the mutation, and the mass in my breast doubled in size, which indicated that Faslodex did not work as well. I am now on Xeloda, which is a chemo pill and non-hormonal.
Why not go on the recently approved oral SERD that works best on ESR1? The oral SERDs are easy to take, just one pill, little side effects.
My doctor is considering it. I was put on Xeloda because it had metastasized to my liver with 3 small lesions. If Xeloda is successful in shrinking those lesions, I will be put on a SERD.
should I be tested for this?
thank you. I didn’t know this. Did your dr tell you? I’m on exemestane.
I don't believe the doctors feel that everyone they put on an "hormonal blocker" will result in either a resistance or mutation. When I started on Ibrance/Letrozole & Lupron injection to suppress my ovaries, I was NED in 2020. I continued on the treatment, but switched from Letrozole to Exemestane because of the side effects, then eventually stayed on Exemestane/Lupron and stopped the Ibrance. In 2021, it came back (small lesion in my left Iliac hip) and eventually came back in my left breast where it started. The doctor monitored what was in my breast, and as it grew, put me back on Ibrance. In addition, I ended up having a biopsy done of the tissue in my breast for 2 things. 1-to see if it was the same type of cancer and 2-test for mutations. I had another test done (Foundations One) and it was confirmed I developed an ESR1 Mutation but also M-tor as a secondary mutation. In the meantime, I had a choice of either going on Faslodex or having my ovaries removed. I elected to have my ovaries removed. The caveat was when the results came back for the mutation, they suggested I go on Faslodex because of its ability to target the ESR1 mutation. Well, it resisted that treatment as well and ended up advancing to my liver with 3 small lesions. A little disappointing and now the doctor was convinced that I have a resistance to all hormonal treatment. I was put on Xeloda (chemo pill) which I am tolerating quite well until I get this disease under control.
So, to answer your question, the only way to find out about mutations is to take the Foundations One test. I believe there is the Guardant test as well. I hope this helps.
I was diagnosed with ER+ HR2-. Diagnosed with mets to bone only in June/July of 2022. At that time the bone biopsy confirmed it was the same cancer as the breast cancer.
It seems that there are so many women diagnosed with the same type of breast cancer and around the time they start menopause. Ironically, removing ovaries, etc is always secondary. So instead, we are put on hormonal blockers to suppress our hormones and ovaries-when instead, we should have them removed after child-bearing years.
I was thinking about asking to have my ovaries removed. If anyone has had complications etc?
TammyCross and AvidBooklover sparked my memory and I did happen to save the results. Blood draw from the cancer center, results from Garudiant360. This is the title of pg. 1 (of 40). 'Summary of Detected Somatic Alterations, Immunotherapy Biomarkers & Associated Treatment Options' My mutation: PIK3CA N345K
Best, Jim
most likely they will change the med after if the tumor marker is elevated. There are a lot of good meds out there. I was on ibrance with letrozole for 3 years then tumor markers rose with small progression. I wish you the best. 🙏✝️
Slight Progession - abandon Ibrance?
Scan Results on Bone mets
New Bone Met
Liver lesion 
Bone Mets
