Just found this in the digest I get of medical journal articles (MD Edge):
Women with estrogen receptor (ER)–positive, human epidermal growth factor receptor 2 (HER2)–negative invasive lobular carcinoma who are treated with endocrine therapy do not derive any additional survival benefit from neoadjuvant or adjuvant chemotherapy.
Here is the author's conclusion: The authors “observed no evidence for added value of chemotherapy” for ER-positive, HER2-negative invasive lobular carcinoma who received endocrine therapy. “In view of the adverse effects of chemotherapy, our study takes an important step in answering a valuable question from the patient’s perspective,” the researchers wrote.
Here is the cite: The study, conducted by Bernadette A.M. Heemskerk-Gerritsen, PhD, from Erasmus Medical Center Cancer Institute, Rotterdam, the Netherlands, was published in Cancer on November 20, 2023.
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TammyCross
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very interesting … I am stage 4 to bones only. Refused targeted therapy. My onc first said a huge error on my part….then changed his mind following a new study. I am NEAd at present with just Letrozole treatment. Who knows…we can only listen to professionals and then make our own decisions. Sometimes, we are correct.
What study is that? The person I know with bones only who eschewed targeted (for a good reason, a propensity for interstitial for some reason) did have bad progression in bones. I found Xgeva extremely effective for bone mets except I was in the 5% who got ONJ -- but you are already NEAD. You can try other things if that grace period ends.
Thanks for this, Tammy! My guess is that this will also prove true of ductal breast cancer. I, for one, at the ripe old age of 78, will continue to avoid chemotherapy which I believe is simply too harsh for ancient cells to tolerate.
I changed oncologists several years ago when the young man refused to prescribe double tamoxifen which worked to contain my metastatic breast cancer the first year after it was diagnosed. (I foolishly told him that I was taking double, and he said I could not as it wasn't within his practice guidelines.) Single tamoxifen simply wasn't sufficient, and my cancer antigens continued to rise until I switched oncologists, and started taking ribociclib.
I found double tamoxifen easy to tolerate so I may discuss it with my current (much older & more senior) oncologist if my CT scan is looking good tomorrow. He may be interested to see whether it works for me.
I just realized that they were talking about adjuvant and neo-adjuvant chemo. Neo-adjuvant would be before the primary treatment, e.g., to shrink a tumor before surgery. Adjuvant is basically preventive, after the primary treatment to catch any cells that may have escaped, and to prevent metastasis. Most of us get an estrogen inhibitor for adjuvant.
I am not sure how this applies as treatment for metastatic bc. It might be the same, but it would take a different study to look at that.
Hi there, I’ve seen other studies with similar conclusions and have even heard doctors from Dana Farber speak of these same conclusions. My original doctor’s partner even told me, when I was first diagnosed, that chemotherapy treatments are ineffective for metastatic lobular carcinoma. However, none…..Tamoxifen, Letrozole, Anastrozole as well as Fulvestrant worked for me. I’m Er/PR +, HER 2 negative, lobular, ESR1 negative, PIK13 positive with the CDN1mutation (which all lobulars carry). I kept having continuous progression, even after adding 2 different CDK inhibitors, nothing worked. Yet, Xeloda has not only brought me to NED, it has brought my markers to normal after climbing and progressing for 3 1/2 years. Xeloda is a standard chemotherapy treatment. Cancer, and especially breast cancer is a divide by 0 game. While studies are exceptionally valuable and can be of great value in looking at statistics, they can also be very damaging in treating individuals because medical regulations are drawn up from them. Many people don’t receive beneficial treatments because of the stats drawn up from studies. Not all studies are created equally making the problem worse. While information and medical treatment has come a long way in cancer, science has a long way to go. Studies can lead to bad conclusions as well as good conclusions but I really believe the emphasis needs to be placed predominantly on each individual and treatments should not be marginalized to protocols made strictly from studies. I would no longer be here, as well as many other people that have lobular carcinoma in this group, if our doctors had followed the many studies and decided to not work outside the studies. I guess my point is, don’t put all one ‘s eggs in one basket.
Your comments really ring true for me. Er+ PR+ HER2- endometrial cancer research is 3 to 5 years behind bc research. Very few Gyn oncs pay attention to what’s going with bc and mbc. I’m a lucky one. I’ve been on Ibrance and anastrozole for 6 yrs. But I almost never find nd another endometrial cancer patient on the same or other cdk 4/6 inhibitor treatment. That is why I hang out in this forum.
Thanks for sharing and for all the discussion. Yes, it is about neo-adjuvant treatment for initial diagnosis of ILC and not a metastatic presentation. Not sure how applicable these findings would be in MBC setting.
ILC behaves very differently from ductal (IDC) that makes it difficult to compare these diseases, even though they are both cancers that arise in the breast tissue. The ILC pattern of metastasis is frequently to the GI areas, even the orbit of the eye, which makes the symptoms and diagnosis so challenging. Fortunately there is increasing research emphasis and funding to explore ILC specifically to better understand and treat it, whether in initial stages or in progression.
I was diagnosed Stage 4 ILC in 2017 and after three different treatment regimens (1. ibrance/letrozole; 2. piqray/fulvestrant; 3. keytruda/fulvestrant) have now been NEAD for over a year. I thank God for science every day! Tami
Here is the full citation to the article.
Öztekin, S., Hooning, M. J., Van Deurzen, C. H. M., Dietvorst, A. M. H. P., Drooger, J. C., Kitzen, J. J. E. M., Martens, J. W. M., Van Der Padt‐Pruijsten, A., Vastbinder, M. B., Zuetenhorst, H., Heemskerk‐Gerritsen, B. A. M., & Jager, A. (2023). The effect of (neo)adjuvant chemotherapy on long‐term survival outcomes in patients with invasive lobular breast cancer treated with endocrine therapy: A retrospective cohort study. Cancer. doi.org/10.1002/cncr.35125
Tammy, interesting conclusion; thanks for sharing! I had a BMX for ER & PR+, HER2 - ILC. Surprise! I had 8 positive nodes out of 18 removed. I wanted to throw everything at it science could offer, so I chose 4 rounds of TC, 33 rounds of rad and am doing 2 years of Verzenio & 10 years of Letrozole. So far, so good. Blessings on all my pink sisters.
Hi Smiling Sue, how would you say your treatments are affecting you physically? I have stage 3 ILC and about to begin 28 treatments of radiation. Not sure what is next post rad. Thanks in advance
Hi- and happy Saturday! Each breast cancer is different and the treatment recommendations are too. My chemo came 4 weeks after my BMX. 4 TC, 3 weeks apart. No nausea or vomiting! My last chemo was postponed due to low lab numbers. (anemia) A bit short of breath and only 1 day of extreme fatigue. Not very hungry, most everything tasted "off". Corn on the cob was my go-to fav chemo food- it tasted just as good as ever!
I lost my hair-everywhere; I sure miss my eyebrows, eyelashes & nose hair! My hair is almost the same color, but it's thin and frizzy/curly and 17 months later, it's only a couple inches long. (I take Verzenio which probably doesn't help any)
Two weeks after chemo, I started 33 rounds of radiation. It was hard for me because by the last 10 I was badly burned. I'm a natural red head with fair 'n freckled skin thats always burned easily. Follow your team's advise about product recommendations! Stay hydrated. I had NO fatigue! None. I did get short of breath with exertion. Grateful my burns healed FAST and beautifully!
This is a club that nobody wants to join. But you're not alone! Speak up when you need help. This was a hard lesson for me! There are many groups you can join on Facebook. I've learned so much from them and even made some great pink sister friendships!
I'm here for you. Be optimistic! A sense of humor and laughter helps tremendously! Your treatment will pass. Life goes on. Breast cancer research is exploding- most of the statistics are from 10-20 years ago! They don't include the benefits of today's treatments! Heck, treatment today is better than even 5 years ago! YOU are NOT a statistic! Strive to be happy. We have lots of living to do! Reach out anytime 💗 Sue
My Oncotype showed Chemo to effective at less than 3%. I have ILC ER/PR+ HER2-. However I received a Chemo recommendation from 2 different ONC hospital boards to leave "no stone uncovered" which I did. Currently on Verzenio and Exemestane.
I started on a dosage of 150mg then to 100mg and now down to 50mg. The reduction in dosage had to do with white blood count number being low. My blood numbers were boarder line at 100mg but decided in the long run it was best to drop down to 50mg. From my research and understanding the efficacy is the same whether taking 150mg or 50mg but they always start with the highest dosage to determine how your body metabolizes the medication. An overwhelming amount of patients have gastric issues or incontrollable diarrhea. Fortunately I have not had that issue to date at any dosage. I will say I do my best to eat a low-glycemic diet (but not diabetic). I also take off label medications (CDC Protocol) along with Claritin, Curcumin, Turkey Tail, Lion's Mane, Vitamin D, Vitamin C, Omega-3, Black Seed Oil, Melatonin, Akkermansia, Magnesium glycinate, drink green tea with ginger and lemon daily. I'm not sure if any of these help or not but want to provide any other variables that might contribute.
I will say radiation was very difficult for me. It caused a lot of acid reflux for a period that lasted about 5 months after radiation was completed and occasionally flairs up today. Due to where I received positive margins the radiologist wanted to hit that area with more rad. I also had radiation on both side which might have contributed to the reflux. If anything came of it I did have an endoscopy and colonoscopy and it did not show any abnormalities.
Of the treatments I have been on, I found Verzenio the least pleasant -- of the CDK4/6 inhibitors. (Letrozole was perhaps the worst of all; switched to anastrozole.) It wasn't terrible, just fatigue and diarrhea that was manageable for me. I went down to 100 and then to 50 (twice a day, so actually 300 to 200 t 100). My white blood count was fine. It was just the diarrhea my oncologist wanted to get reduced. The fatigue was more of a problem for me. It also was less effective than anything else I have been on. Took it for only a year.
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Are there any members of this group that currently have metastatic breast cancer that has spread to the abdomen/stomach area?"
Good News re: CDK4/6 Inhibitors & Overall Survival 
My 84 year old mom who has MBC (metastasized to lungs and liver) has Tested Positive for Covid
