Ok, so I have not posted my situation for awhile because I was/am still waiting for tests. Quick review-Luminal A Hr Es+ 90-100% Pr+80-90%,ki67<10% HER2 neg(2+,sish neg) her2 low, I guess. This was the original in 2016. Had chemo, rads, anastrozle up to 2019 when dx mbc. Ibrance + fasoldex, then xeloda, vinoralbin, enhertu and now eribulin. No pi3kca. My markers on enhertu were ca87 and 15.3, nearly 5000, as sept to oct one blood test my markers increased by 2600. Dr. tried it because he thought it would help her2low people too. Had small tumors in July/August that could have been tested on my ribs. I had been asking for over a year to be tested to see if my dx had changed because nothing was working. Bone biopsy revealed Es+90-100%, Pr+50-60%, her2 still (2+ and sish) pending, ki67 now, 15-20%. Eribulin started in Oct, working great with markers down to ca 27Jan2 and 2588 for 15.3. This is what bothers me -bone scan on the 11th, poking around and causing havoc on my iliac, they took 3 samples. Blood test on the 19th to start next cycle. Test came back ca 34 and +490 for 15.3. I have pain, but not bad. Pet scan Feb 5th. Dr. says that will be a tell all. I think the bonescan is an issue. I am feeling much better than I have been in months. Enhertu is for HER2+ and it did not work, even being low, it did not work and was only on it for like 3 months because my number just kept rising and Sept. thru Dec, was a huge healing time as i was just in so much pain. He was quick to state that we will change meds again because my body has become resistant. I think it is too early to be stating this. I said, so, I will never be in remission and never be NED. He said no. Tears followed and I said so I need to get my things in order. He said you should have your things in order. Thanks for being positive. Enhertu is for her2+, I am hoping that the test still comes back neg. He told me that with the ki67 rising that now I am lum B, I checked this and it says if this number is high, I do not consider 15-20 to be high, perhaps I am wrong. He gave me 3 choices -cisplatin+gemcitabine, which also states it too will become resistant eventually, but in 4-5 months? 2nd, taxane (nab-pacitaxol) docetaxil (sp) and 3rd sacituzumabgovitecan-hziy, which is trodelvy and stated well, that one is going to need a lot of paperwork. It was only for TN, but has recently been approved for HR+, her2 neg. I use to like my Dr. but I just think he is grabbing at straws right now and I just do not understand. Yes, I am going to get an appt with the Chief of the department to figure out how to get a 2nd opinion. However, I have been checking Anne list of drugs that she was so kind to develop for us and verzenio for an example would be a choice perhaps and or many others. Sorry for the long post. Your wisdom would be grateful from those of you whom are in my category and or are just kind enough to give any feedback. It would be really appreciated as this all came down yesterday and I am also low in spirits. Blessings
Hello friends. It's me again. Bone Bi... - SHARE Metastatic ...
Hello friends. It's me again. Bone Biopsy + Dr. nonsense.
- Blood tests
- Cancer and tumours
- Biopsy
- Chemotherapy
- Breast cancer metastatic
- Eribulin
- Ibrance
- Xeloda
- Verzenio
- Trodelvy
I cannot give any advice, but I know others more knowledgeable than I will.
I just wanted to say, you asked your onc questions that I’m too chicken to ask, but none the less responses are a guide/guess??Ofcourse you’re feeling low - understatement, but on this forum we can see things can turnaround. Everyone should have their affairs in order with or without mbc… I still haven’t!
If you feel your dr is clutching at straws you defo need a second opinion asap! How does your onc know that your next line of med will not get you to remission? Could there be other factors he is taking into account. I hope pet scan gives you more detailed info and decisions re new treatment plan is ‘the one’.
Hope, I’m sending you a gentle hug and pray you get a few responses moving forward to give you clarity, in the meantime keep doing what you are doing to keep your body and mind strong x
Thanks Nat. Yeap, just trying to stay positive and anxious for the sish confirmation. However I would think that if it changed to positive than enhertu would have worked and I am considered low.
You need a second opinion ASAP. Why do you have to go to head of dep't to find out how to do it? Just get in touch with one of the best cancer centers (Dana Farber, Anderson, MSK) and find out how to get a second opinion.
My oncologist runs toward the negative, too. Like many oncologists, she won't use the term remission for metastatic, because it is incurable. It doesn't mean we are going to die right away. My onc doesn't use NEAD, either. It is always lurking in cells, she says, but I can see from my scans that I have had periods of NEAD.
Not sure what he is saying about resistance. I had a liquid biopsy that indicated what treatments would be best (there weren't any for me, other than the standard AI + CDK4/6 list). -- Dana Farber has some good pieces on line about resistance.
I didn't follow all the twists and turns of what he is recommending, but I agree with you that it seems you would have other options.
It is an important indicator that you are feeling well (my onc says scans and how I feel are the most important indicators). Ki-67 has different cut offs according to different experts or scales; 15-20 is not great, but it is not considered high by everyone.
I don't know how helpful this is, but I am sort of in your category ER+ but my PR is negative (not good), HER2 low, KI-67 in the same range, and I have been going through the combos of a SERD (fulvestrant and an oral SERD) or AI (anastrozole, etc) plus one of the CDK4/6 inhibitors (Ibrance, Verzenio and now Kisqali). I have been running through them too fast, I feel (3rd in five years), but when they work, I am NEAD, and when they fail, I get small tumors (bones and chest). Mostly, I feel fine, except for side effects of treatment. I hope that proves true for you, if you can find a second opinion doc who gives you better info or explains better.
I just got an appointment with the Department Head to discuss my options. I live abroad Tammy and it is not that easy. I might though just make a call and send information if I can find an option to do so. I so appreciate your reply, esp with last paragraph. I wasn't thinking stright because I am a mess. but I found on verywell.com that the ki67 difference between LA and B is less than 10 slow and more than 30% is aggressive and considered LB. I would just like to know how this changes and I am sure many of us in the same boat have the same question. Just trying to grasp all this once again. I really do not care about losing my hair, but I am on my second rodeo here and it is not fun. It just makes me feel rotten. Then to know that new meds will do the same and for a long time. It is so depressing. xo
I see, abroad, somewhere, so it is a different system and my recs and others about good hospitals in the US are not helpful.
My oncologist never talked about Luminal A and B (I wanted her to - I thought I was luminal A), nor about my Ki-67 score. It was 25% when I was first diagnosed and 25% when I had another biopsy after 3 years. Even so, my cancer is "indolent," slow.
This is what my initial report said about Ki-67 scores and cut offs:
"No current consensus exists as to the methodological evaluation, optimal cut off and algorithm of clinical usage of the Ki67 labeling index. Proposed cutoffs noted in the literature vary from: Unfavorable >10% or >14% or >20% or 30% (St.Gallen). Intermediate 10-14%, 10-20%, 16-30% (St. Gallen). "
I am not sure why you think the subsequent treatments will be hard. If you can get on the regular treatments, they are not that bad. I do care about losing my hair, but I haven't, just thinning, and I am so self-conscious about that I have invested in many stunning hats and a toupe (they call them toppers for women). Mostly, though, feeling well makes it easier.
Well that is interesting. I guess what ever works, works. I am just tired of going through them and wish that I would be given one that pairs with my pathology report. I find it odd that a tnbc drug or a her2+ is given to patients tha do not have that or even no hr+ at all. It is like throwing spaghetti at the wall to see if it sticks! And so what are you taking now?
How long did Ibrance + fulvestrant work for you? I was in really terrible shape when diagnosed -- bone mets, fluid in pleura, a huge met in my chest.. I was emaciated, weak and couldn't breathe. Within a few days of getting the fulvestrant injections, I could run uphill. NEAD. Lasted two years.
Went on an oral SERD monotherapy for one year, NEAD.
Went on anastrozole and Verzenio for one year. Was not NEAD during that year, just stable, and the side effects were the worst I had had. Not terrible, but somewhat incapacitating. Got three small tumors -- or they grew.
Switched to exemestane. Tumor markers dropped. Just started Kisqali. Too soon to tell, but the side effects are better. Hopeful for this combo.
My oncologist said the reason each of the treatments has stopped working is that there was a mutation. But when I am tested, there is no new mutation. Dana Farber says there are other reasons for resistance to develop. Some people have had success going back on Ibrance after a vacation. It can start working again.
I realize you asked only what I am on now, but I elaborated. I don't understand why he put you on meds that don't match your pathology. Hope you can get a 2nd opinion and go on less drastic treatments that are easier to take and do match. And don't get switched so quickly.
Ibrance alond with fasoldex worked for just about a year and a half. No, no, I am glad that you told me because although you are not pr+, you are a bit higher in the ki67, but same her2low. If your cancer is slow, and higher %'s in LB cases are considered to be a more aggressive type, well, then you are proof that that is not always the case. I just want to have options with the meds that you told me about IF after the pet and next cycle the tm's and the pet do not show any improvement than I need to make a decision. Obviously, we all want less side effects. You too have gone through many in the last year or so then, right? Again, what works for one may not work for another. I am a bit irritated that since my case is 90-100 estrogen still, I should have been given a blocker too over the last 2 years. Instead, I feel like I have been a science project and my progession for the last 4/pet scans and marker's are back up. I had hope since they had been going down. My ribs are feeling better and it does not hurt to cough or sneeze. I have only taken a few hundred mgs of ibubrophen in the last 2 weeks.
I am 100% estrogen, too. You were on fulvestrant, though. It is not an AI, but it blocks estrogen -- better than AIs for me. You don't need to be on a SERD and an AI at the same time -- but I guess you mean you should have been on an AI in the years since the Ibrance and fulvestrant stopped working. Sounds logical to me. It so not good when we don't trust our oncologists to help us live longer and to avoid putting us through hell.
I have had many switches in treatment, but so far was able to stay on each one for a year at least before progression.
Yes, indeed that is what I meant. He literally said he does not like "pairing". Well, since my original dr. switched to ovarian, I have had this dr., 2022. My tm's were 70 in spring of that year. Capecitabine, vinorelbine and enhertu and now Eribuline since Oct. 2023 and brought my tm's from 4800 down to 2800 more or less. Cap is normally paired with docetaxel or something else. I do not understand taxens, Aromastis inhibitors, etc.
What?! Doesn't like pairing? I am no MD but I can read the research to some extent, and it is clear that a CDK4/6 enhances the effectiveness, time to failure, of the AIs. The only reason not to use AIs is if you have ESR1 mutation. A nurse on the board always says that the estrogen blockers are the heavy hitters in our treatment if we are ER+/PR+. Depending on your scan, 4800 down to 2800 is not enough, if you were 70 before.
Do you have alternative oncologists within that department? You need more than a 2nd opinion. You need a new oncologist. This is somewhat scary.
Indeed it is and that I why I spent all weekend getting all my information together for my appt with the Chief this morning. Change of Dr. ,complaints in hand, errors noted and lists of meds that others in my same situation are taking and have been for years and in more or less the range for normal markers,
Sounds like you have it under control, great preparation. Now if only the Chief is someone who can listen and is willing to throw his (I assume?) weight into getting you in better hands.
It is troubling how much time and energy we have to put in to advocating for ourselves. What happens if/when we cannot?
You got that right. So, looks like I forgot to finish what I was writiting earlier. Tell me Tammy, have you ever been told about hormone resistance? This is what my Dr told me. Still I was on anatrozole and Ibrance and fasoldex. That is why he said he does not like pairing. So, I went through my notes from May 2022, when he had written everolimus + exestane, used when anatrozole and letrozole failed. Well, I have never been on letrozole nor the pair. He just put me on capecitbine. I have heard of women boing back to prior drugs years later and working. Again, sorry you are now taking what? I ask because we are very similar with type and numbers. After a year of not having zometa, although he stated in the information of every visit maintaining zometa, it is scheduled for this Friday. Had treatment yesterday after a week because of low neutrophils, but really irritated because I give myself the boosters and they had given me 3. I did all 3 for 3 days in a row and on Saturday my legs were in so much pain and Sunday too. Plus my neutrophils were really high above normal as were all my wbc. So, I thought I was going to see the Chief and I walk in and there is my Dr. I guess the chief is on some leave. So, my dr knows now that will be changing Dr.'s. The dr filling in for him is the one whom scheduled appt for zometa this Friday. See the Chief of the 14th of Feb. Markers will be ready, pet scan results, and confirmation on the sish either her2 neg still (low) or totally neg or pos. However, again, I think that if it changed to +, then enhertu would have worked. Mri is next Tuesday, finally after asking for months. I felt a relief after leaving his office and knowing I will have a new Dr. Hopefully I will be able to continue on Eribulin. Sorry for the novel. Blessings
I want to be supportive or at least bring whatever understanding I have of these meds and the downsides, but I have a little trouble following your novel. Maybe longer would have been easier! Partly also you are using language that is unfamiliar to me. I had to look up sish -- it is a test for HER2.
I also don't know about the boosters you were giving yourself. That is to boost your neutrophils? But they were high? Why were your legs hurting? Because of the boosters? (Not the treatment -- you had that on Tuesday and your legs hurt on the weekend before.)
You walked in and saw your doc that we don't trust but another doc, one who scheduled Zometa, is the one filling in for the Chief? You will see the Chief in two weeks. Good. Two weeks is not long, and you will have the info.
From what I have read, endocrine resistance is inevitable. -- Yet some people here have been able to stay on their initial treatment for 7, 10 years without developing resistance. He wanted to avoid that by not pairing? I don't understand his logic, or exactly what he gave you and why. You were on anastrozole and Ibrance? Or Ibrance and fulvestrant? I thought if you had resistance, it would show up as ESR1.
Maybe it would be easier if I just tell you my progression through the meds, and why they were changed.
I was on Ibrance (palbociclib) + fulvestrant (a SERD) for 2 years. The idea was to pair a CDK4/6 inhibitor (palbo) with an estrogen inhibitor or blocker (fulvestrant).
When that failed, I went into a clinical trial with an oral SERD. That was amazing. Just 2 little pills a day, no side effects, NEAD. (The oral SERD that has been approved only works if you have the ESR1 mutation. That's Orserdu, i.e., elacestrant. The one I was on is no longer being developed.) One arm of that trial had palbo + the oral SERD. I was in the arm that had just the oral SERD because Ibrance/palbo had already failed for me. After one year, I developed a peanut sized tumor in my chest.
Third, I went on Verzenio (abemaciclib) + letrozole. The letrozole caused terrible pain, so I switched to anastrozole, which I had been on before. The pain was less. This combo was less effective than the previous two treatments. The best I got was stable. Progression after a year.
I am now on Kisqali (ribociclib) and exemestane. Side effects are supposed to be easier on this combo, and they tend to have a longer period of effectiveness. I was on exemestane alone for 4 months, and it seemed to be working, no scans, though. Just started on Kisqali. From what I read, Kisqali helps exemestane last for 2 years -- or the combo is better than exemestane alone. My oncologist is pretty clear when she explains this stuff. -- Although her answers don't always make sense, and sometimes she says they really don't know, don't have good hard data, just it seems to work, let's try it. -- I see I have given my progression through meds before, but I have already written it and maybe this is clearer.
He didn't say you have hormone resistance, or did he? How did he know? You don't have ESR1 that you know of, right?
Cape is chemo. My oncologist is reserving that for after these fail. Oh, it is Xeloda. I think that might be next for me. Hoping this combo of ribo and exemestane can stave that off.
You will know more in two weeks. Are you off everything now? Well, you will get zometa, and you just had cape...I hope you can hold off until you get test results and see the Chief.
Yes, they gave me boosters Accofil for Neutrophils and 3 for 3 days in a row and because of too much, my legs were in pain and the wbc's were really high. After a few days no more throbbing leg pain. Treatment on Tuesday and ll is well. Ha, ha, I saw old Dr. told him my plans and Chief was out but sub was there and saw me and I told her that I needed zometa because i had not had it for a year, yet old dr, said it was being maintained, which it was not. OMG, I did not know that the test for that was the ESR1. I was on anastrozole first then 2019 with mbc, ibrance/fasoldex which lasted 1.5 years. When I said I have not been on any hormone blocker and my tm's are just going up, we did the bone biopsy to check if dx has changed since xeloda, vinorbine and enhertu has not worked and you siad you don't like pairing, he did say something aobut being hormone resistent, but I am estroger 90-100 and pr 50-60. Right, and that is what I am going to ask the chief, why state that and not give me a blocker IF I have not been tested. Makes no sense. Oh, no. When my original dr changed areas, this new(old) started me on Cap/xeloda in May 2022, then vinoralbin, enhertu and now eribulin, which brought my 4800 tm's down to almost half and then I had the bone biopsy and they went up a bit more than 400 and he was ready to change me to cisplatin+gemcitab. Hold the phone, I thought. I truly think that the rise is from the bone biopsy OR what some people say dead cells. I look forward to my treatment with eribulin, because there really aren't any side effects that I have and it is working. We started in Oct and I was in bad shape. My ribs are better, groin area, chest and I am slowly gaining strength. I lost a lot of muscle mass and nearly 10 pounds/5kilos. I had to roll out of bed I hurt so bad. Tammy, I can not express how much I appreciate your reply. You have indeed given me a lot of information, especially about the ESR1. It is so important that we advocate and be proactive. I feel like a bull right now because I am so irritated that my health has been compromised. Plus with enhertu, patients are suppose to have heart prior, during and after. I only had it prior and found a valve was only at 57%. I have been asking to be checked again and he has denied me, plus delaying the mri and not taking a tissue biopsy in july and Aug when the bumps on my ribs were clearly visable. Instead they did an xray, well would not a ultrasound be best? Thank goodness eribulin took care of those quickly. But then I had to do the bone biopsy. Still waiting on the results, but again, I believe that if her2 changed to +, then enhertu would have worked on my her2low and it did not. Ok then. Thanks a mil 
Yes, definitely the new old doc was weird. You like Eribulin? It is chemo again. It is great that you have no side effects, and chemo can be more effective, but it sounds like your tumor markers are still high. This is certainly unorthodox.
You don't need a bone biopsy: you can do a liquid biopsy to find out whether you have a mutation, like ESR1. It is just a blood test. It is expensive and maybe not covered where you are. (Where are you?) I had FoundationOne. So much easier on the body.
X-ray vs. ultrasound? I am sure one of the nurses on here can correct me if I am wrong, but my understanding is that ultrasound is good for soft tissue and x-ray for bones. -- On the other hand, my mbc was detected with an x-ray, which showed a large mass in my chest, a lymph node. I have regular PET/CTs. Combination PET scan and CT scan with contrast. The PET shows metabolic activity, so can detect probable cancer cells. The CT shows size and location. (I think.) I have only had a couple of MRIs. They seem to use those to look at head and neck, for me. -- Just looked it up. MD Anderson said CT scans and MRIs are both good, but different. They suggest that CT scans are better for bony metastases.
You really have been through the mill. I hope you can get on an even keel with the Chief, in terms of appropriate testing and treatment. It is the worst when we suspect the doctors that are supposed to help us are hurting us. There is so much we have to learn to be able to question them and push for something different.
Just to clarify I had the bone biopsy because the Dr kept delaying a blood or soft tissue biopsy to determine if the DX changed. He us obviously assuming I am hormone resistant without doing the darn test. Right, as I stated they should have fine an ultrasound on those bumps instead of an xray. My healthcare in Europe is universal. I have paid in yo the system. It it now obvious that I must demand tests. I gave already submitted complaints to the equivalent consumer protection agency here as in the US. Glad I do not live in the States with my condition and beefing everything approved by greedy insurance companies. So many things/tests should have happened in the last 2 years that haven't. I am better informed. Dr. Can't assume without a test, whether it is expensive or not. He has compromised my health. Period.
In the US, it depends where you go. Rural hospitals or those outside major cities result in stories like yours, wrong treatment, not enough testing, delays. Also depends on your insurance. I am on Medicare (costs a couple hundred) and a supplemental insurance (another couple) and all my cancer care has been free. The idea of paying into a system from the time you are born and then having access to all kinds of care and services sounds great. I think it usually works well. I guess, like here, it depends where you are.
Hi Hopeful4Cure. I am sorry you are feeling so frustrated with your care. I had some difficulty following the story in this particular post but the one thing that sticks out for me is the fact that you think you should be on an estrogen blocker...forgive me if I have misinterpreted what you meant. Anyway with the progression of drugs that you listed above Anastrozole (pre-MBC)then Ibrance/Fulvestrant and then Xeloda, Vinorelbine, Enhertu and now Eribulin.
So according to American Society of Clinical Oncology (ASCO) guidelines "If treatment with hormonal therapy with or without targeted therapy no longer works, ASCO recommends chemotherapy regimens using 1 drug for people with metastatic hormone-receptor positive breast cancer. Chemotherapy combined with hormonal therapy is not recommended.
I can't speak to many of the other concerns you have but in this particular case after you switched to your first Chemotherapy agent which was Xeloda, everything that followed was also chemotherapy and has such regardless of your hormone receptor status did not require you taking an AI.
Also trying to compare healthcare choices between an insurance based healthcare system like the US to a Government sponsored universal healthcare system like Europe is just not apples to apples unfortunately. I live in Canada and keep up to date on most new things that come across from the FDA but realistically most will not be available to me in a timely matter. Is it frustrating, yes of course but we always have to realize that unless you have unlimited money and can afford to pay the mostly out of reach monthly costs of these new drugs, which I certainly can't...then I just have to stay positive with the options I have.
Thank you for your POV. I should have been tested prior to xeloda for the ers1 and some people have gone back to ibrance OR anastrozle and it worked. I would have done that instead of the list of chemo pills.
When I was diagnosed de novo in mid 2015 the oncologist was very sure that my cancer was easy to treat and didn’t rush to start treatment because they wanted me to go on to a trial. I’d had a skull mri in May and there were no lesions s there at all but in about August or maybe September a head and neck MRI revealed mets everywhere in my skull. I was started on Abraxane within a week for six months. Then I started Exemestane and Afinitor. That was the end of the first year. I’d had radiation therapy twice plus multiple scans and I was on the third line. I had to stop Afinitor after ten months. I’m still on Exemestane.
I know a lot of people don’t like the IV chemotherapy but I’m a fan. I was facing an uncertain future back in 2015 and although the oncologist thought that Exemestane would be okay for a couple of years I’ve outdone their expectations by a long way. No one knows why Exemestane has done so well for me but they’ve suggested it could be the Abraxane. Or maybe it’s the Afinitor but Afinitor didn’t trial that well and doctors didn’t expect the result I achieved.
No one knows but apart from the hair loss I didn’t have much to complain about. Whether you choose to go that route is your decision but I would say that there’s nothing to fear about it. That was my experience at any rate.
Whatever you choose I hope it goes well for you.
All the best
Kerry
Thanks Kerry, I appreciate you taking the time and have it listed on my list to discuss on Monday. Pros/cons, etc. However, it would be ideal if the rise in tm's was the issue with the bone biopsy and I will just have to see with the next pet on the 5th and tm's. 
Just a quick update. I changed dr's and the chief of the department agreed that the chemo pills and in particular enhertu and euribulin were not working. He put me on everolimus and exemestane. I have been on it for a week now w/o issues. He is doing the ers1 test and I see him next week. I think that you being on just exemestane is great. I do not have any issues with chemo pills or iv, I just want to live and get my numbers down. I just felt that all these drugs i have been given with cont. rise in markers and constant progression showing after nearly two years and 6 pet scans is way too long without doing testing. Not doing testing and just giving me these drugs is like throwing spaghetti at the wall to see if it sticks. I feel for others whom are in the same situation, but do not complain or get a second opinion.
I feel for you in this situation but there are options still, a 2nd opinion is necessary and you can do this yourself by calling other cancer centers, even can even call your insurance company to help you. I am getting a second opinion myself. I called another center and explained my situation. I also called my insurance company to make sure the center I chose was covered. I too have both luminal B, Ki67 36%(under left armpit - large tumor very visible) and luminal A - Ki67 10% (in left breast near the nipple) with prominent signet ring cells. I am ER+PR+, HER2 negative. I know that I have an aggressive cancer. I want to make sure for myself I am doing the best I can and getting the right treatment. I understand your feelings of being down right now 😔 and it's normal after such a negative experience with the oncologist. Question though how does he know it's luminal B now? Was there a new biopsy on the primary tumor or other tumors? Prayers 🙏 and hugs.
My original was dx as luminal A as stated above. Because of the higher ki67 now, this is what he is stating. It went from <10% to now 15-20. I find it interesting that you are saying you have two types now and I would think that others here too are in awe. So what are you taking now? How can you dr determine the best treatment with regards to treating both? Thank you so much for explaning your situation.
Yeah it sucks to have two different types of tumors. When I had breast cancer at 36 years old I had two different types of breast cancer then in the same left breast. Currently I am just on the standard Ibrance and letrozole first line of treatment. I want to make sure it's the right course of treatment since the oncologist said that it would only last like a year. It was a wtf moment for my son and me. He goes with me to all my appointments.
Thanks for the reply. I was on Ibrance and fasoldex and it only lasted about a year and a half. With my estrogen at 90 to 100% I just do not get why my dr is not pairing a blocker too. I have an appt with the chief on Monday and my doc on Tuesday and still waiting on the her2 confirmation, but again, if I am her2+ and already tried enhertu and it did not work, than I would think the test would come back the same her2 neg (low).
I am an MSK oncology nurse and just want to share with my knowledge luminal B isn’t necessarily bad because although you could have a more aggressive tumor, it may respond better to treatment than a luminal A tumor. Luminal B is more chemo sensitive
I do appreciate your input and really, I am not in the loop yet to understand all of this especially since I am still waiting for the sish confirmation. I do not have any tumors, like lumps, just lesions on my bones from head to toe, like most of us here. I am doing a lot of checking and I can't express enough how happy it makes me feel that all of you have taken the time to reply. So happy, I found this site. Wish I would have found it sooner.
You have bone only mets? That is supposed to be a very good thing. (I asked above how long you were on Ibrance+fulvestrant -- I see you said 1.5 years. The median is two years, so half the recipients got more time to failure, and half got less. One and a half is not bad.)
Yes, so far. Someone called to schedule the mri for head last night but I missed the call. The pet will show what's going on and I hope I am still bones only.
That is good to know. Thank you for that information. I have been a bit worried.
I don't have wisdom to share only love and support. Yes, get the 2cd opinion and get another if you need to. You deserve quality medical care that you can understand and agree with. Of course, we should all have 'affairs in order' we have an incurable disease. - but this can be introduced in a kind, compassionate way and if our docs can't be kind and considerate or hire someone who is - then they should be Fired. Wishing you peace, comfort and love, Mary.🌺❤️🌺
Aw Mary, you are a peach. My exact thoughts indeed. I thought he must have been having a bad day AND to think he said it while training a resident in my appt. I wonder a lot these days why some people are in the healthcare industry, especially onocology. xo Thank you for taking the time.
I’m sorry I don’t have any wisdom to share but please know I’m praying for you. Some of these doctors can really make us lose hope. I know I have that experience with mine and it can be devastating. But there is a higher power than the oncologists and we can all keep believing that new drugs can give us hope.
Praying for peace and strength for you and for all of us.
Well written and thank you for taking the time. I pray all the time and give thanks for another day. Blessings
best treatment after Xeloda?
Liver Biopsy - (cont)
Does anyone have experience with Enhertu? I was HER2 - low in 2019 and my last liver biopsy was HER2 - 0. Planning to start Enhertu next. 
