Anyone with advanced breast cancer er/pr+, her2 neg, asked to do this trial?
I am a bit concerned because I was dx with luminal A in 2016 and had a lumpdectumyin left breast. Found lymphnodes too. Had 12 rounds of chemo and 18 days of rads. Was on anastrozle until Dec of 2019 with progression, mets. Lite up all over, just bones in upper torso, etc. Took Ibrance and had fasoldex 2019 to current 4 of the same places came back. Oncologist transferred me to another doc for a clinical trial of the above drugs. However, I do not have triple negative bc and the doc said that he would have to do my biopsy again on my tissue and it would take 3 weeks. Tumor marker for bc, is under 100. Normal marker under 10. He said he is looking for the pd-l protein, well this will be interesting of my markers have changed. Anyhow, I have been trying to research these drugs and 2 pharmas withdrew Tecentriq use, Roche and Genentech in Au of 2021 and Dr, Susan Halabi, from Roche, said that she could not agree to continue the drug. Hmmm. I wonder why they would want me to do this trial, when there are many other options after Ibrance/fasoldex. I can't find any hard evidence or people with my dx. Nor any articles on any successful cases for my dx, let alone the chemo pill XL901. To me, something just is not right. Anyfeed back would be greatly appreciated, because this just does not make sense to me. I see the doc at the end of May, waiting for tissue results. Thank you all whom can chime in.
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Wow. Wonder why some treatments seem so invasive while others do not.
I am stage iv...it was found in lungs. Never did chemo, never had mastectomy, tried Ibrance but only lasted three months bc I did not want to deal with the side effects. It has went to my spine and last scan my liver, but I am still just taking verzenio 50 mgs. twice per day (after refusing higher dosage bc of side effects), and my monthly falsodex injections. That is it and here I am 5 and 1/2 years later. It did go to my spine and now my liver but my palliative care doctor gives me the right pain meds so my spine does not bother me and so far no pain from the liver.
Oh my cancer center in NY does not use tumor markers. Have no idea what they are and do not care if they are not relevant to my cancer as they are not a reflection of anything going on (so say the oncos at the cancer center I go to).
But not sure why they are asking you to do a trial. Remember it is your life, your body, so do not let them do anything you do not feel comfortable with. Sorry, I could not be more helpful but it seems your doctor uses tumor markers. I only ask my onco bc I read of them on this site and she said none of the oncologists in this cancer center use tumor markers.
Thank you for taking the time to respond. Yeah, I do not know why they would start me on a trial. Mets to hip, spine and a rib. Tumor markers show the progression w/o having to do a ct or petscan first, if those markers are high -outside the norm, then they do a petscan. I would think that I too would be on verzenio as it seems to be the next line after anastrozle and then ibrance and fasoldex, not a trial. I have lots of questions. Hopefully others will respond in time. Thanks again Kearnan. Stay safe.
I am on Verzenio (and for me it was so much better) but I also continue to get the falsodex injections. That started from day one and continued even to today. Good luck. I have alot of pain once it went to my spine. It was like almost overnight the pain level. I am now on fentanyl pain patch and oxycodone and that allows me to do feel much better without pain.
It seems to me that you need a second opinion asap (as soon as possible). It is good that you are doing your own research into the drugs to discover that something seems to be amiss. Is it possible that your oncologist is over-interested in recruiting for this clinical trial for some other reason unbeknown to you?
Luminal A breast cancer is usually regarded as most likely to benefit from hormonal therapy with/without a targeted drug. Many people posting on this site have that diagnosis so I hope you receive helpful replies.
I'm not sure I understood your post correctly, but think you said that you took anastrozle between 2016 and 2019. After you experienced progression to your upper torso in 2019, you were switched to Ibrance with Faslodex. Even if you now have had some progression in bone mets, it is possible that this may be a temporary setback. I hope you may hear from several knowledgeable respondents who have gone through something similar without changing their meds.
As you may well know, there are other targeted drugs to take. I am on ribociclib and letrozole which has brought down my CA 15-3 markers to a near normal level. I have both bone mets and organ mets. The side effects I experience are bad enough that I will be very reluctant to try any form of chemotherapy, much less to be a "guinea pig" in a clinical trial.
Thanks a mil Cindy. Yes, I do hope others respond because it just does not make sense to me either. Yes, you are correct with the drugs I had taken prior. Plus that trial w/ drug is for people with a protein of PD-L, which is normally for triple neg bc. I have a list of questions and again, I will have to wait for the testing to be done on my tissue. it takes 3 weeks. Next appt end of May. I am in europe, they may do things a bit differently here, like including TM's wehn we get a blood work, but you are right, why put me in a trial, especially when 2 pharma companies pulled their support of Atezo. I am 57, no pain, taking no other drugs and never took pain meds for this for the last 6 years, because I know the damaged it could do to my liver and kidneys. Another note, I forget where I saw it, maybe here, about a study of ErSO, which had super promising results for people with MBC and poof! It was stopped. Why? Because it would have been a game changer for millions of people saying alive? THe investors and pharma companies would lose $ and people would lose their jobs because that drug worked? I think it was from Bayer.
First Tumor markers should never be used to determine progression. Tumor markers in some not all can let them know ,along with other factors blood and scans and how you are feeling if there is something going on. So if I where you I'd get on the phone and find someone to give you a second opinion!! There is so much dis information out there on everything. I truly WANT to believe that no doctor or pharmaceutical company deliberately let people suffer and die for a profit. That said ( the following I don't know is accurate could be dis information) I recently read an article about a Dr. Sanja Gupta. He was regularly on CNN here in the states during the pandemic. Supposedly he started marketing a CBG (again not sure of the letters but CB some other letter) .It is said to be flying off the shelves cause it works for pain ,insomnia, I forget what all else. So now according to the article two pharmaceutical companies are suing him because there sales for drugs that would work on these issues have plummeted . So IF this article is TRUE????? Then ErSO is in trouble because Bayer is listed as one of the companies suing. This would seem to suggest that the companies are worried more with profit than the quality of life for all people. I don't have any idea how to find out what articles are legit and what is garbage. And neither do a lot of people. So we are left wondering what to believe and not believe!!! I do believe in freedom of speech but that speech should also have penalties if you say or post un truths that you can not back up with facts. I'm against censoring people who just have a different opinion then someone else. But we are in this mess in our country because no one bats an eye at deliberately lying and no one seems to be held accountable for there lies!! Sorry sort of went off on a tangent ! Just wish we who need to be able to find truthful information to help us make decisions about our lives could do it with out worring if what we are reading or being told is simply a doctor or pharmaceutical company who is corrupt and worshipping the almighty dollar!!!
I am not one of those who believe they are hiding the cure for cancer. Thousands of people would have to be "in on it." Of course, pharmaceutical companies, like other companies, are all about profit. I assume that they use the profits to do research. Money is just not handed out for research.
I know my onco always look stressed. I had an appt. with her one day at 12:30 pm and when she came into the room, she told me that she had seen 30 patients already that day.
I read ONE interesting online article that stated oncologists are expected to see a patient every 12 minutes in US. They are held to powers that be also. I actually felt bad for her bc I could see she was stressed out. I remember that she is ONLY my oncologist and I do not expect anymore from her than that.
You got that right and I totally agree. That is my point. Profits over patients. As I was researching this, all I could find were Bloomberg reports and other financials about how much these companies are making on these drugs, but yet when we try to find legit infor on the success of any and all these drugs, there is nothing. CBG, I think is another cannabis form like CBD and or the rso thing. Right, all these companies want to patent a natural plant!?! But was such a journey for just CBD to get approved to use as a natural pain killer. My cancer is suppose to be the least progressive, easiest to treat and has the best prognosis. It just boggles my mind when people are dying and there are loads of drugs that are suppose to help, not chemo, had that and would never do it again. Rads too. Long term issues after the fact, yeah, I guess, because it did not work, not once, but twice and short lived at that. I hope others will reply too. Thank you for your response. It is greatly appreciated.
I would definitely look into a further explanation for the clinical trial and get a second opinion . As mentioned in previous post you can say no . Advocate for yourself and find out all your options for treatment . Luann
Thank you for your post. I have a list of other therapies that people like me are taking for the same dx. I just wrote them all down from women on the bc.org forum. NONE were taking what they want me to take and I could not find any information on any others sites, like this one for an example.
I don't know if my experience can be helpful because the Ibrance and Letrozole combination I am taking has been very helpful for me. I am after two and a bit years on those drug in remission. I have had very few side effects - mostly hair loss but for that I take the gummies I buy at Costco and it is helping my hair.
I still take the Ibrance (Palbociclib) and Letrozole but they have now put me on a lower dose. The reason for the lower dose is because lately my neutrophils don't recover on my 7 day rest periods. I originally had a lumpectomy of my right breast but didn't have any spread to my lymph nodes. That was in around May of 2016. After three years I went to a chiropractor because I had some back pain. His rough treatment resulted in 5 compression fractures. He is lucky I didn't sue him and the reason I didn't was because when I went for x-rays they discovered that my breast cancer HER2 neg had metastisized. So I felt sort of grateful. If I didn't have so much pain after the chiropractor treatments my cancer would likely have become much more advanced.
At the time I was diagnosed with mbc stage 4 I had it mostly in my bones but also somewhere in my chest. There was a little bit in my lungs too - I think. I don't know if they were ever sure about that though because the nodules in my lungs could have been benign. At that time they put me on the Ibrance and Letrozole and I have been taking it ever since. I had scans every three months and then every four months and now every six months. I hope that one day I can get off the drugs but I don't know if that is ever going to be possible. I am 79 years old and feel grateful for all the help I have received from my doctors. I did have one oncologist that was very negative and seemed to enjoy scaring me. So I asked for another doctor and the woman I have now is wonderful and I think her warm, positive treatment is helping me heal. All the best to you Hopeful. Hugs Marlene
Thanks Marlene. Yeah, I just do not know why Ibrance + fasoldex did not work for me. I got almost 2 years out of it and the majority of women that were taking it too and then switched, are taking what you are taking or verzenio/riboclib with other therapies like exemesteme. Appt is at the end of May. Have done lots of research to no avail really and decided to post here and I sure am glad I did, as all you the posts support my thoughts. Thanks everyone.
Not to confuse you even more, but I have had a different experience from the rest of the ladies that may be helpful to you. To give you a little background I was diagnosed in 01/2018 with early stage(stage 1) breast cancer, ductal, ER+/HER2-. Fast forward to 6/2020 -That’s when I was diagnosed with MBC. After a battery of scans it was found to be in my sternum, couple of lymph nodes and liver. I was on Ibrance/Faslodex for a year, as my 1st line of treatment. I had genomic testing done, still ER+/HER2-. After about 9 months, ibrance/faslodex stopped working and I had progression. My oncologist gave me 3 options for my 2nd line of treatment: Piqray with tamoxifen,(I have the PIK3 mutation ), Xeloda or IV chemo with immunotherapy. She said the IV chemo/immunotherapy would be the best option for me. I was shocked as I did not think that I should be going on IV chemo as a 2nd line of treatment. I knew I would be on IV chemo eventually but I thought that was way down the road. When the genomic testing was done it was found that I have a high tumor mutational burden (TMB, numerous mutations -I’m in the 90th percentile). Also, my PDL-1 is in the 50th percentile. Because of these, my oncologist felt that the IV chemo/immunotherapy would be the best option. Insurance did not want to cover this treatment because I don’t have triple negative breast cancer and the immunotherapy it’s only used for triple negative when it comes to breast cancer. My oncologist had to fight with the insurance company to get me on this treatment. She won the fight and I was put on Abraxane for the IV chemo and Keytruda for the immunotherapy. That was back on 7/2021. I have had 3-PET SCAN‘s since being on treatment, (my fourth one will be coming up in a couple weeks), and in her notes on MyChart, she has stated that I am in remission! Praise be to God!!!
I tell you this not to confuse you but to maybe suggest a reason of why your oncologist wants to put you in this clinical trial. Tecentriq is an immunotherapy drug, and maybe your oncologist knows that this is an uphill battle with getting insurance approval, because you are not triple negative and this is one way of getting you on an immunotherapy drug. Just a thought…..Sorry for my lengthy post. I hope this has helped you in someway….if you have any questions please don’t hesitate to ask, as I am happy to help!
Super interesting and a good read. I really appreciate the information. I live in Spain and do not have to worry about insurance covering anything or being approved. Knowing that you did so well on the IV chemo is great, but it just worries me to do chemo again and not knowing others whom have been treated with it, except you. So, did you have any bad side effects? Did you do it every three weeks? Did your Doc tell you if you were in remission that you can take something else now to keep it at bay or what? I greatly appreciate knowing what worked for you. Plus, down the road, we don't know any lasting issues that may arise. However, being er/pr+ and her2neg, the doc is testing my orginal tissue for PD-L, and I will surely ask for genetic testing. I do know that our biomarkers can change and I need to know too if I have an mutations. I wish there were patients on this med or in a trial that could reply on any issues they may have. One more thing is that Roche and Genentech withdrew the use on Aug 27, 2021 - stating that the withdrawl only applies to breast cancer treatments and does not affect other approved indications for Tencentriq, but now I see that it is now authorized for use in the EU, but I do not have TNBC. Still, where are the initial results from 2014ish to present? Are any of these people still with us? ema.europa.eu/en/medicines/.... With no updated safety information, I really do not want to be a guinea pig and where is the information on this XL092 stellar-001 medication?
Right now I am just taking quercitine and CBD to keep my estrogen down until I see the doc at the end of May. Thanks for taking the time to reply. Everyone is just so great on this site!
I understand your concerns and your hesitation about going on chemo again. I would not want to be a guinea pig either and I would definitely have a long conversation with your oncologist to get all of your questions answered and your concerns addressed. This is your body and your life -your decision on treatment. Going into a clinical trial vs. another line of treatment is a big decision. Remember, it’s your decision. You’ve done your homework, and you know there’s other lines of treatment out there. Talk to your oncologist and get your answers about these lines of treatment. When my oncologist laid out my options for my second line of treatment, I didn’t give her a decision that day. I went home and thought about it, did my homework. To answer your questions, -I was only on the chemo for 6 cycles, (4 months), 2 weeks on, 1week off, (12 infusions). I had the immunotherapy at the same time, once every 3 weeks, at the beginning of a cycle. So a cycle would consist of the first week chemo and immunotherapy, the second week chemo only and then the third week off. I had never had IV chemo before, so I didn’t know what to expect. I handled it quite well. I did lose all my hair, had little more fatigue, little more body aches, and had diarrhea issues. I was able to control the bowel with medication. My experience was not that bad, and if I had to do it again, I would. My last chemo treatment was right before Thanksgiving. Since then, I am now on the immunotherapy only, once every 6 weeks, and I get a Zometa infusion once every 6 months, (Zometa used to be once every 3 months). I will stay on the immunotherapy until another line of treatment is needed. I had genomic testing, not genetic testing done. The genomic testing was quite informative as it opened up more lines of treatment for me. Whatever you decide, may your treatment be manageable and may you have continued success on it for a long long time!
Again you are super helpful, just needed to hear again that i am in charge of my body, but itis hard when you are alone and living by yourself and no one else helps, like family, for an example. I am just amazed at the level of communication by my family. So, I resort to these forums. Sad, yes, but I have to be the one to follow through with my research and oh, yes, a long list of questions. I absorb all the info, and when it comes time to speak with the doc, I always feel like I am the pain in the ass of a patient for asking questions and that is my right. It will be interesting to see what the new doc for the trial has to say after testing my tissue from 2016 and yes, I meant genomic testing. I too have been receiving the Zolenic/Zometa calcium treatments, but every 3 months, not 6. Oh, I will be back to let you all know what in the world is going on, as I have no one else to talk about this too. People, say, I understand, but if you have never had cancer, you DO NOT know.
I have the same family situation, and I think those of us who go it alone do a damned good job. We just handle it. Like you, I do research. Some of my docs think I am a pain; some respect me. This does sound like an odd choice for you; maybe the genomic testing will rule it out. I got on a clinical trial after Ibrance/Faslodex failed, but it was exactly right for ER+, HER2-. Just a capsule once a day. A trial is not a bad idea -- but this one? They should be able to answer your questions about why they think this is appropriate for you.
Thank you for being honest about doing your clinical trial. Yeah, it does indeed seem odd for this trial with my er/pr+, her2 neg status, assuming it isthe same, however, again, know those biomarkers can change. Instead of the doc's finding out WHY the last treatment did not work, they give the next "protocol", without any additional testing. So ww will see. Please tell me what you are taking as just a pill now? Ibrance/fasoldex for you too failed. Did they do any extra testing prior to the clinical trial that was specific to your dx? That could help me a lot to know. Why? Because prior to the trial they DO, DO that extra testing (genomic), etc. Thank you in advance for your response.
Exactly what my oncologist did or does: she has a list of treatments and she just goes down the list; this one fails, on to the next. When I asked why she thought the next would work better, "sometimes just changing works." I was surprised she didn't retest, since mutation is possible. The last treatment, an oral SERD in a clinical trial, wiped out all estrogen and wiped out all tumors -- until this new one popped up. Seems to me it must not need estrogen to survive, but she said as I quoted above, so I am now on Letrozole. In your case, it sounds like they will test and will find out if you are eligible, appropriate for the trial.
What I was taking as just a pill was this oral SERD made by Zeno in Phase 2 trial. No testing prior to putting me in it, but apparently I am or was ER+, little progesterone, HER2 negative, so pretty standard. No mutations. This is all based on the biopsy I had when I was first diagnosed three years ago. That it worked so well indicates that it was a good match. The oral SERDs have short terms of efficacy.
I am getting a second opinion at Sloan Kettering because I have the same questions you do. Why not test again? Why did those treatments fail? I was on Ibrance/Fulvestrant for 2 years, worked remarkably well, then two new lesions. Then the Zeno pills. Worked for 1 year. On to Verzenio and Letrozole. She has one more on her list. I would like to get a longer ride out of these.
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