Hi everyone. I’m feeling kinda crappy today. I was on ibrance and fulvestrant for almost a year and a half. I had to switch after progression to Everolimus and Exemestane. It’s been almost 2 months and my tumor markers have continued to rise. I saw the oncologist today who was in agreement that there is a strong possibility that it’s not working. I have scans in 2 weeks so that will be the final decision. The oncologist wasn’t alarmed and said that there are many other things to try and that she thought we could get on a good path again. I’m sure she is right but this took the wind out of my sails. I know that all this up and down stuff is part of MBC but I feel so powerless and that feels awful. I’m going to try and reclaim my power by keeping my body healthy so that it can withstand many more treatments. I’m just so sad. Thanks for listening. Tomorrow will be better. ☀️☀️ Carla
Feeling scared : Hi everyone. I’m... - SHARE Metastatic ...
Feeling scared
Hi Carla, I can relate very much with you, Went for my treatment today, my bloods were low so no treatment and my markers have jumped, I have been on Ibrance and Fulvestrant for nearly a year. My markers are going up steadily. I am due to see the Oncologist in a couple of weeks and will surely be put on a different treatment. I have never had IV chemo and dread that in the future. Like you I feel so sad. I have hoped to get longer out of my current treatment.
Tomorrow will be better. Onwards and upwards.
Hi I’m sorry that you are having to go through this also. It sucks. I don’t know if this helps but my onc said that there are lots of different meds to try not even counting the trials. I haven’t had IV chemo either. It would be great to get a handle on all the emotional ups and downs involved in this process because hopefully we will be doing this for a long time. Take care Carla
Hello, Carla. I know it is very stressful and takes a lot to get a little bit of positive thoughts into your head at the moment. But the research and studies are improving manifold day by day and your onco has told you there are other options to try. So don't worry, once the scan is done, you will know what is the exact status and your doc will definitely know the best path to go. Right now, do the things which help you relax, eat, hydrate and sleep well so that you prep well for the next course of treatment. <3 Take care and update us. Much much prayers.
Oh Carla, you're so right. This up/down journey can be very challenging on the emotions.
I'm pleased you reached out to share your feelings yesterday. I believe today you will feel better.
The information you've been given is good. It's a matter of getting you on the drug that works best for you. Onwards and upwards
Louise x
Hi there, I get how you feel. I was diagnosed with MBC two years ago and my treatment then was Letrozole and Ibrance. After reducing the dosage of Ibrance twice and extra weeks off because of low bloods I continued on Letrozole until that stopped working a couple of months ago. I am now on Exemestane and fingers crossed this will work. It’s a rollercoaster but with supporting and positive vibes I’m sure you can make it. I’m sending some of those positive vibes now.
hi!
I just came across your message here as I was searching for any reports on Everolimus and Exemestane as I’ve just been switched to them from Ibrance & Letrozole.
Are you still on E&E - his are you doing?
Thanks ☺️
hope you get a good plan with your consultant and team to match your good plan with keeping yourself as well as possible. I was on ibrance letrozole for 18months then ibrance fulvestrant and with markers going higher and higher I'm starting my third week of xeloda (capecitabine) I'm on one week on\off so far not too bad... but I totally get your worry and fear, I'm sorry you and all of us on here have to deal with this disease. stay strong and take care. we're all here with you. kind regards from Ireland Joanna
Yep, we are all too familiar to how you feel. I am just waiting on my pet scan on the 12th of June. April 17th my 15-3 tm was 289, general marker 12, last time and vin was working great for like 3/4 months. 15-3 jumped to 820 and general to 77. NOT GOOD. That is just crazy. I don't feel bad and I do not have pain like I have had in the past. I badly injured my foot the Tuesday before my test on a Friday. Could trauma cause tm's to rise that much? It is just odd and that news too, snapped the wind out of my sail. We are going to wait for the pet scan and next blood test to confirm either it was a bad tech, faulty handling or really bad progression. If all is accurate and the pet scans shows progression than I will be doing enhertu because I have the her2 low. Not looking to iv chemo, but I want to live too. Hang in there Ticket123. Blessings
I’m in that same category. Diagnosed 1/2022 started w/Ibrance/Letrozole then switched Kisquali/faslodex and markers kept rising. Found a colon lesion. Now on Orserdu(elacestrant) hoping it works. The roller coaster ride of emotions wears you down. I’m back to feeling hopeful and trying to enjoy each day since I feel good. It’s a day to day thing. I hope you can find something to help get over this hump. We are there with you on what you are experiencing.
hi I’ve been on efinitor and axemastane and pet scan shows progression. My dr would like to put me in kisquali, but isn’t sure what to pair it with, I didn’t do well on first treatment if faslodex. He’s also waiting fir blood work to see if I’m a candidate for Elacestrant. I’m patiently waiting to find out. How are you doing on this treatment? Did they have to give you the blood test to see if you had the mutation to go on it. Hope this works well for you.
Rosemary
yes.. oddly in December I tested positive for ESR1 then did Guardant360 in April and the ESR1 mutation was gone and now PIK3ca dropped in.. but went on elacestrant anyway. Like many on the Facebook group my tumor markers doubled. But I feel ok, I have some fatigue.. which I normally have not gotten on the CDK4/6 drugs. I know some have bad joint pain. Check out the Facebook page
Goodmorning happy first day of June. I feel you its been a year this month that I had surgery andI have been on Letrozole right now I worry about the soreness I'm having under my arm and around scar tissue. But we have to think positive hold on to faith and Trust God is looking out for us. So don't give up. I will be praying for you. Have a wonderful day and month of June. Love you lots 💗
I am sad with youwhile knowing you already have the power to live you r life every day. Best, Mary. 🌺
I have been through two treatments that left me NEAD and minimal side effects. Now on something that has side effects that make me question the whole thing. Also it isn't working as well. What I am trying to get a handle on (my onc is no help) is resistance. Supposedly there are just random mutations, and then one of them suddenly is able to overcome the treatment and we get progression. Yet some people here are on the same treatment for years, even a decade. There are new theories about resistance. It is important to keep up with this research, because resistance is the key.
What you said is very interesting!! Please say more!! I had emergency spine surgery fir a tumor broken back and that is how I was disgnosed with MBC...nit previously disgnosed with BC at all. I was homeless when this happened, so after my surgery, I had to have radiation as an inpatient. Right befire radiation started 10 days after surgery, I started Tamoxifen. I have been on it for 4+ years with shrinking of breast tumor by 2/3 and keeping stable in my few bone mets. Thank God nowhere else!! My last scan in April is said to be showing progression in my tailbone, though my onc did not find it a problem at my last appointment, when I got the best report of doing "incredibly well for 3+ years and counting" as he said. He did not tell me anything about tailbone then. I don't believe that it is progression, as I broke my tailbone 7 years ago and reinjured it a month and a half before my recent scans. Trauma and injury, as well as related arthritis shows up on scans, too. Though my tumor markers are elevated, they are still much lower than people here day theirs are. They were last time too...said nothing...he was not concerned. I got new onc due to original one moving to Canada. Strange set of circumstances!! I am super thankful for my very long run of good stable reports on Tamoxifen, and I believe it is still working. New blood tests soon and scans in July to confirm what onc is saying, with consultation of tumor board, or show healing and stabilization. God is my healer!!
That is quite a story! Amazing you are doing so well, so far, just on Tamoxifen. You have many more things to try, if/when you have progression. Hope your new oncologist is a bit more proactive and attentive. Where are you in the world? I guess in the US?
Were you saying "Say more about resistance?" This wouldn't apply to you, but I am running through treatments. My cancer is "indolent" (not aggressive) and I have a "low cancer burden" (just a couple of small spots) and I am asymptomatic. The problem is that I am on my third line of treatment in 4-5 years. So the problem for me is that I keep developing resistance to treatments -- they are effective, and then they are not.
From what I have read (including an article someone posted here), resistance may not simply be a matter of mutations that get around a treatment. It may be more complicated than that, or simply something else, but treatment changes should be looking at the different mechanisms that can cause resistance. Certainly sometimes it is a mutation. For example, some people here have had a mutation to ESR1 -- and that means the treatments that go after estrogen won't work, and they have to have a different treatment. (And then one person posted her ESR1 mutation went away. Hard to keep up!) My FoundationOne test showed no mutations that would explain the resistance. So what is it? There is research showing other sources, other mechanisms, but my oncologist won't consider them because it is "not the standard of care."
That reminds me -- bad segue here -- of another troubling issue. I have never felt good about my oncologist, but when I wanted to switch, the nurse practitioners and research nurses tell me she is the best. The evidence is that all her patients are doing well, on very different treatments. So her skill is supposed to be matching treatments to patients. There is another oncologist in the department that I saw once when mine was on vacation, and I really liked her. She was so easy to talk to and really took her time and was very personal -- what I care about. I had the feeling that some of the things that have gone wrong for me, like ONJ, would not have happened if I had had an oncologist who talked to me and listened to me. Now two things have happened. One is that the one I liked is the only doc in the breast oncology department who made the list of "Super Docs" in all specialties. Does this list mean anything? Is it like the list of best colleges? The other is that I asked my oncologist a question, in an email, and she gave a patently stupid answer. It takes no medical skill or knowledge to realize that it was dumb. (I hope they don't read these!) -- Yet I can't get myself to switch. Somehow I feel I will pay for switching. (It is a small department; they all know each other, and my oncologist is supposed to be the best, or the second best -- the best does tons of research and has less time for patients.)
Thank you for sharing more!! Is Super Docs online?
I found it in the NY Times Magazine (Sunday). I get the hard copy. It should be easy to find. The docs on the list, or their hospitals, tend to advertise them. I think the list I have is just NYC. -- but not sure.
Looked it up. Turns out it is a commercial enterprise. This company compiles the list, then sells it, so what I saw in NY Times Mag was actually an advertisement paid for by the listed docs and hospitals. There is something similar in Texas and Minnesota. The list is compiled by asking docs which doctors they would refer a family member to, and that list is culled and rated by the doctors at the top of the list.
Then there is a national list put out by Castle Connolly. No idea if it is any good.
Thanks!! I looked it up too online and my state is not listed.
I may respond more later. Until then, have you heard that after menopause, when ovaries not producing much or any estrogen, that our fat starts making it?!! Ugh!! I was beginning menopause right before ER hospital stay, Tamoxifen accelerated it. Been done since prior to surgery. Lost 40 pounds in the hospital. Have gained all that back plus 20...not healthy especially when my estrogen was spiking in last blood test. Trying to eat a lot of fiber to flush the estrogen, literally, out!! And I read that Tamoxifen can possibly turn like a double aent and work against you, not just stop working. Yikes!!
Yes, I have always known that fat produces estrogen, and not just after menopause. I think it does it for men, too. When I was on an effective treatment, though, and accidentally got the FES, it showed I had no estrogen in my body. The medication doesn't care about the source of the estrogen. After menopause, we still have some, mostly from fat tissue. It is also in foods, but probably not enough to affect blood estrogen levels (soy, flax seed, dark chocolate, bourbon, wine and beer, garlic, vit D -- seems like a lot of overlap with anti-inflammatories).
Thank you for responding!! What is FES? How did you get it accidentally? I am adding a lot more fiber to my diet, which flushes out estrogen and hekps you lose weight. I think it is working. Eating as close to an avocado per dayas I can, as it is said to help you lose weight. Are you saying that dark chocolate, garlic, and Vit D have estrogen? Never heard that before!!
Most of the anti-inflammatory foods and supplements have "phytoestrogen." There is some controversy about whether that blocks the bad estrogen or encourages cancer like regular estrogen from our bodies. I studied up on this when a dentist recommended turmeric curcumin supplements to heal from the surgery for my ONJ. Then I read that turmeric is bad for ER+ breast cancer. People on this board had differing opinions from their oncologists. The MSK website that reviews supplements and herbs recommended against it. My oncologist, on the side of caution, said not to take it. The oncology nutritionist told me, basically, no supplements (except D3 and B12 and folic acid) -- no anti-inflammatory supplements. She said the amount of estrogen you get in foods, like soy and garlic, is not enough to make a difference with cancer, but supplements can. -- I imagine the anti-inflammatory properties in food are probably not enough to help with inflammation, either, but I don't know that. It seems like everything I have looked at that is natural to help with joint pain also encourages growth of breast cancer cells.
Other people know more about FES, but it is an alternative to the regular PET scan; it is a different radioactive isotope that is injected. It specifically targets breast cancer. I got it by accident because it is the new and preferred test for ER+ breast cancer, but I was in a clinical trial and had to continue with the same PET for comparison. FES is easier to take (no fasting, for example) and I think more diagnostic (I keep having things light up that are not bc, and FES doesn't make that confusion), but my oncologist wants me to continue with the regular PET. -- Looked it up: the regular PET is FDG; it looks at metabolism of glucose, and gives level of avidity or activity. FES looks specifically at estrogen receptors, so it wouldn't pick up ER- cancer.
I didn't know that fiber gets rid of estrogen and helps weight loss. I spoke to oncology nutritionist yesterday and she said fiber, fiber fiber -- because I still have some diarrhea from Verzenio, even at 50 mg. Oatmeal. She recommended mixing a teaspoon of Metamucil into apple sauce. (I tried it. I don't think so, but maybe others are more tolerant.)
Yes!! I am thankful to God!! My original onc was very good at listening and always taking what I wanted to do as most important, like he thought it would be good to drain and test the fluid from my pleural effusion around my right lung, that I had a couple years ago. I did not want to do the thoracentesis, if I could avoid. He said we could wait and watch...and as I knew for me, pray!! It lessened by next scan and continued to lessen until gone. Praise God!! I am in Oregon, USA.
With MBC, I really think we'd have to be pretty nuts not to be scared at times! Something to keep in mind is that some oncs don't use tumor markers at all because they can cause needless fear/anxiety/worry! Progression is just one od several things that can cause increased TMs. I hope June will be a better month for you!
My Onc does not find tumour markers usefull. Hope he is right
Carla, it is a Rollercoaster for sure. But your onc is right. So many more options, but I understand your fear! I will be thinking of you and your next scan.
Carla,
This sounds a lot like my path as well. Ibrance stopped working for me at about the year and a half mark, my second line worked for two months. But your doctor is right, there are so many other treatment that will get you back on track. I’m on my fifth line and I feel like we found the one that will give me some more longevity. It’s hard though, we all understand. Hang in there.
Allison T.
Five? My oncologist says there are three before chemo. What are the five you have had?
Fifth line of treatment, this includes chemo. I have been on: Ibrance, Piqray (two months), Xeloda (five months), Enhertu (two infusions), and now Gemcitabine.
I see, you moved pretty fast. But you feel the latest, Gemcitabine, is the one that is going to work for a while. I hope so!
Carla, I’m sorry, but keep up with your positive attitude!!! It’s a huge plus!! Everything happens for a reason and the next chapter can mean BETTER results !!! Always remember, you are never alone.
Best Wishes and LOTS of prayers. XO
Jody
Carla, I am so sorry you are dealing with this. Although I have not had to switch treatments yet, I'm sure it is very difficult to have to do so, especially when the second line one is not working and you have to move to something else. That must be very frustrating for you. I hope that the rising markers are related to something else and that your scans will provide good results for you. My marker had gone up recently and my doctor moved up my scan appointment as she was concerned. The scan was negative and when I had a follow up on bloodwork, the marker had gone down again. She suggested the other number was an error at the lab. I went through a lot of worry during the last few weeks. The MBC journey is definitely a roller coaster. Keeping yourself as healthy as you can, trying to be calm and stay positive and leaning on your support system is as important as the meds. I am sending you some hugs and prayers that everything will be okay.
Hi Ticket123, I'm so sorry that you are at this point in your journey, take heart, there are many other protocols which will work well for you. I understand how you feel, I was on Ibrance/Letrozole for almost three years, but it only worked a little over one year and the progression was not seen because it's lobular and it was in my stomach and colon which scans don't pick up. My markers went from 68 as the lowest on this protocol to almost 600 in a matter of months during the two years that followed the calm of the first year. I had switched to Verzenio/Fulvestrant, Fulvestrant/Anastrozole, and Piqray in a matter of 6 months and things just kept getting worse. I'm on Xeloda now and tolerating pretty well, and my markers are almost to normal hitting below that "high" mark, which we never saw before with any other protocol. Things will be o.k., your doctor and you will find that perfect medication that will work well for you, and there are many more available after that. Progression is disheartening and frustrating and scary......but you will find that new good place again. Take care, and I'll be hoping and praying for you to find your perfect new protocol.
Hope they find the right treatment for you soon Carla……..hang in there thinking of you, it sure is a tough journey. Theresa
I know what you’re going through. I was on Ibrance and fulvesant for 18 mo. I felt fine. It was dream drugs. Then my concern spread and I was on. The I was o. Affinitor and Aromasin with an allergic reaction. Horrible. Now I’m on Kisqali and I love it. I just hope it lasts!
Thank you everyone for all your support. I really appreciate it. It really helps being able to process things with people that understand. I am very grateful. ❤️
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