How are people with liver mets doing?
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I am kind of with Hope, Candy. I feel like you need answers now..We are STAGE 4 not stage 1, 2 or 3...our stuff needs more attention...I get that your MO has other patients all of our MO's do but I do think that you have a lot of important questions and to put your mind at ease seems a bit much to have to wait over a month to discuss?
I LOVE LOVE LOVE my MO lol...as a matter of fact last night (Sunday) she sent me a message...Thursday or Friday of last week I sent her an article to read that Husband 11 posted about...and it was SOOO good about SARMS...and I sent it in the portal and said hey can you read this whenever and let me know what you think... Sunday night she messages me that she is reading it and its really good. Sometimes I send multiple messages a day...she always replies within a few days and if its something i am worried about or upset she usually calls me...either during the day or usually on her drive home in the car.
If you are ok though with waiting the month and it wont stress you out..than that is a different story..that would stress me out..lol... but if you are ok then thats good
I do hope you are not stressed and can get the answers you need
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Sorry ladies, I don’t necessarily agree. I understand what you are saying Shetland, and I don’t think that we need to be on the phone every day with our MO going over every nuance of our treatment or side effects etc. However, I’ve seen the messages here on the message board from candy and a number of these messages should have had her MO involved in this early. It really seemed that she was not getting her questions addressed. Yes I am in the US and, in Western North Carolina, so not near any big cancer facility (2-3 h away), which is a bit frightening. I would have to drive several hours. But I do have an oncologist and she is not a breast cancer specialist, but she has the IQ and the EQ to deal with cancer patients, especially those who have incurable disease. I’m not saying we should be racking up hours with them, but I think it’s ludicrous to think that they can’t afford a 15 minute phone call to address some key questions and then put the major decision making questions off until they have time for a formal visit or a telehealth visit. Many of these doctors are wonderful human beings and I will not take anything away from them, but let’s also understand that we are paying for our treatment, this is not necessarily a gift from them. In many cases I do feel like it is a gift when I have an excellent doctor doing everything she can to maximize my longevity and my quality of life. But it’s a team effort. I have apparently misunderstood some things that Candy had written in this blog and I no way want to upset her or a relationship she has with her MO. I’ve just been on both sides of the board. I had an excellent breast cancer specialist when I lived in PA and had access to MD Anderson Cooper. I no longer have that access and I’m dealing with what I have available to me. I had a terrible time with my first medical oncologist and got exceptionally sick and in essence had no access to her at all to let her know what was going on. That was unacceptable Knowing that, I kept my first MO on as my second opinion doctor that I can send test results to and a variety of questions. I can meet with him as needed, but generally every 3 to 6 month by telehealth. My new MO is aware of this relationship and these discussions. I would never do anything to override Her decisions. She actually welcomes additional input and thought. But she knows she is my primary MO and I work with her directly.
apparently, I have overspoken and may have hurt some feelings on the board here and I don’t want to do that. This is an amazing group of caring and loving people and some very brilliant people as well. My heart just broke when I was reading Candy’s messages and I felt that she really needs a doctor to sit down and listen to her and have her concerns addressed. I just wanted what was best for her. I’ll drop the topic. Hugs to you Candy0 -
Candy, I hope you find some answers soon. Being weakly PR+ is different to what I was (I think I was 0% ER+ but still something like 75% PR+, if I remember correctly) so what I said before about my situation may not be applicable to you.
As far as your MO and getting a response to your questions, I think that as long as your MO is attentive when it really matters, that is the most important thing. I lost a lot of trust in my first MO when he was nowhere to be found after I had a bad reaction to chemotherapy. I have since switched MOs and oncology centers and it's much better now. Yes, there are a lot of patients because I'm at a large research hospital, and my MO is very busy. But when something scary or urgent happens I am not left hanging. For me that is the most important thing, and I personally don't mind waiting to address things that are not as time-sensitive. That being said, and more specific to your current situation, I think if you are feeling like you want more clarity about this receptor change sooner than the end of June that is perfectly reasonable! None of us should be left hanging in suspense.
Regarding immunotherapy, I didn't realize that it wouldn't be an option for you because of your autoimmune disease, but there are still other treatment options for TNBC that are tolerable and effective. For example, I actually found Xeloda to be more tolerable than some hormone therapies, to be honest. In any case, I hope you get some answers soon.
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hey sandra, she has grade 3 poorly-differentiated with P13K mutation. not sure about ki67. she got a complete response from TCHP when she was first diagnosed which was great but the cancer has progressed extremely rapidly on targeted therapy/radiation since it came back in december so maybe the morphology of the cells has changed a lot?
i'm definitely with everyone who says that patients, esp stage 4 patients, deserve timely communication. i don't have much luck on the phone with my mom's MO since i'm too busy to pickup, but we communicate over email and he answers simple questions there. he always calls my mom directly to discuss scan results but mostly just emails me.
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HopeandGratitude, I am not disagreeing with you. I am not offended by anything you have said, and I am with you in concern for candy and others who have trouble getting timely discussions, answers, and care. My post was about my general approach to communicating with my onc, not commenting on what candy should or should not do right now. I just wanted you to have a bit more background if you did not know it already. I feel bad for doctors who have huge caseloads. Insurance is stingy, and I think there are not enough doctors. In order to be the compassionate and attentive doctor that she is, my onc makes phone calls and emails from home in the evening. I feel bad for her because she works very hard and deserves her time off. BUT, on the other hand, my job is to look out for myself and seek the care and communication I need, not to fix the system. In fact, sacrificing myself will not impact the system at all. So yeah, if I've got something going on, I become a high-need patient, no apologies. I have paid into the system and I intend to use it. My onc and I are in agreement that we are trying for the best quantity and quality of life possible. I will not view fighting for my life as bothering anyone. Again, the system could use improvement, but that is not my job.
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Hope I felt like you were fighting FOR Candy..I didnt find offense to anything that you said...and I need to add in...I think when we have a change in our BC status...like going from hormone receptor positive to TNBC that is a big deal..big deal and I personally couldn't sit with that for a month..but thats just me..I think Hope was thinking kind of like that...like this is a big deal its important..and to wait over a month to talk is a long time.
We are all here to help each other and its sweet in a way that we are passionate in sticking up for one another in our BC battle and with our MO's
love you guys!
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Agree, Nicole! We really do care for each other here, and one of the things we do is to encourage each other to advocate for ourselves. I also agree with everyone above who has pointed out that a change in bc status is a big deal and it is reasonable to need some discussion without a long wait.
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candy and others considering PARP inhibitors-a total game changer for me, olaparib (lynparza) as a monotherapy has shrunk that liver tumor from 11 cm (yep) to about 4. Only side effects are low Hb and over time its a little hard on your kidneys. I'm lucky Sweden will cover the cost. It might be worth contacting the company to see about discounts/free supply, especially if your MO will support that. I don't have the BRCA mutations but do have a PALB2 mutation.
Oncologist called to break my meditation listening to birdsong in the country. Slight progression in my lytic T10 lesion and when I started exercising the muscles around it was just enough nerve pinching to cause this practically unbearable pain. well into week 4 and waiting for radiation so Nicole, you are in my thoughts, let me know how it goes! I hear good things, that it will both help heal the vertabra and release the pinch. Stopped taking the tylenol+codeine since it doesn't seem to really work on the pain anymore and just makes me feel nauseous.
Nobody out there with a teenager willing to cut my lawn? How about if I cover airfare to Sweden? : )
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Ladies I have been off line for 3 hours watching a webinar about MBC-- that is what I do, research.
I do not take any offense from what has been said by anyone here. I know we care about each other. And are advocating for each other. Yes, I am a bit gobsmacked that I have flipped my ER status. I was thinking changing from Letrozole/ Lupron to Fulvestrant would be my next move, maybe with changing up CDK 4/6 inhibitor to another one. Or maybe A/A. But those may be off the table now. And a PARP or Xeloda or IV chemo may be my choices now.
And I still do not understand if I am considered hormone receptor positive or negative and if hormonals would still work for me now or in the future. Maybe it is not black and white. Yes, the liver lesion that was biopsied was ER-/ weak PR+, but I have 3 more liver lesions and the bone mets in several places. I do not know if ALL are ER- now. Does anyone really know???? How do we find out??? Or do we??
Anyway, we are not changing my treatment until after my next CT and MRI-- chest, abdomen, pelvis-- on June 25/ see MO June 28. So for the next month I will continue my treatment as is. So my questions I posed to my MO per the portal are not immediate because nothing is changing until after June 28.
HopeandGratitude and Nicole---- I am glad you have that rapport with your MO's. But I do not. I would never call or message her on a weekend, unless I was in an emergency situation. And then she would probably just say to go to my local ER--- as the MO nurse said when I had pain after my liver biopsy and messaged her--- ended up with a PE (blood clot in lung). I went to my local ER and was admitted to my local hospital for 3 days and my MO never called me. And really I didn't expect her to.
We are all good. And I still would appreciate any advise on what may be my future treatment plan.
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The onco/patient relationship is a tough one. Sometimes we get an onco that feels like a friend, and who feels fully invested in us. Other times we get a doc that you never feel close to, but are still comfortable with the level of care being received. I think the bigger cancer centers will have colder relationships than the smaller specialty offices. Doesn't mean the care and treatment is better in one or the other, I just think one allows for a closer relationship.
candy, I hope you get the answers to your questions soon because it is hard to research what the possibilities are if you are unsure what your treatment options are.
With that said, I saw my onco for the last time this morning, she is moving on to a bigger cancer center and I won't follow her. I have experienced a very good relationship with her, and feel she is a friend, though now I realize why I kinda slipped through the cracks the last few months. But, I talked to her about Y90 and she told me she thought my tumor burden would make me ineligible, but she got on the phone with an interventional radiologist who specializes in Y90, who reviewed my last CT scan and said I'm a candidate! My consult/set up appointment is in 2 weeks. I'll meet my new onco the day before the consult.
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Hi All,
Interesting discussion. I feel pretty fortunate as I have direct access to my MO. He gave me his email early on in my stage IV diagnosis indicating he did not want me to have to go through the nurse line or reception. While, like Shetland, I am judicious in my use, I am eternally grateful that I can reach out when I need to. He's amazingly responsive despite his heavy case load, typically getting back to me within 30 minutes or less. (I laugh - he's using the dictation application on his iPhone so, at times, the typos are quite something but I can usually figure it out.) I am also sensitive to avoid eating up too much of his time so keep things short and sweet with my questions. I've also taken to indicating it's not urgent in the subject line so that he doesn't feel the need to respond immediately but he still tends to get back to me right away.
He's, quite frankly, amazing. He's responded to me while on vacation (I don't know he's away until I get the out of office notice) and has called on Sunday mornings to answer more complex questions when things are less hectic for him. I normally save my more convoluted questions for our appointments but sometimes give him a heads up if there is something specific I wish to discuss, giving him time to prepare. But anything more urgent like increased symptoms/pain and I will let him know pronto.
I try to lighten his load where I can. I had my PCP do the paperwork for long term disability. The amount of effort required by physicians for the application is ridiculous.
And Candy, my PCP's office is the same - communication through the office staff but then, you can imagine how hard it would be with the number of patients that a PCP typically has if folks were writing to them directly. Having said that, I wouldn't be comfortable getting answers to my questions from a nurse or PA. I want it coming from the horse's mouth so to speak and find it challenging when those lacking qualifications speak out of turn....
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Sadiesservant, yes, sometimes nurses overstep, I'm sure in an effort to be helpful and/or to "protect" the doctor from the patients. When I first had intermittent URQ pain, my first call was to the cancer center, where a nurse -- who had not examined me -- told me it did not sound like mets and to call my PCP. It took me four or five months to get back to the cancer center, by which time the mets were large and extensive.
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Candy, I think that a cancer that started out ER+PR+Her2- and then loses the hormone receptors, is not the same as one that started out at triple negative. The underlying genomic landscape will be different. Also I think if you use chemo (like Xeloda) or targeted therapy (like a PARP inhibitor) now, it could certainly treat any disease that is still hormone-receptor positive as well. I think the only way to know for sure about the receptors is biopsies, and they won't biopsy every spot. However, your onc may be able to make an educated guess based on how the cancer is currently behaving as far as speed and location. (Obviously you'll want to ask your onc if I am right, or if I am full of prunes, as my grandma used to say!)
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I used Xeloda and was ER+ PR- HER2- and have 10%PDL1 and it did nothing for me....but everyone is different...
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Terri-c
So glad you are eligible for local treatment y-90. It killed my original mets which were growing very fast
Dee
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MCbookair, I'd definitely talk to oncologist about possibility to re-introduce a taxane, if it was so effective first time. Actually even according to guidelines, if I recall correctly, a re-introduction of a taxane if >24 months has passed and if previous reaction was good, is highly recommended. For my wife docetaxel worked super well both times... Saulius
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Hi Saulius,
Question, have you read anything about effectiveness of taxanes if the first response was poor? I started out with Taxol but it didn’t do anything to reduce the fluid in my lungs so we switched to hormone therapy. I have always felt that I would circle back to Abraxane if things started to get out of control but perhaps there is little point. One of the reasons I wonder about the potential is that I am pretty sure the lengthy period of fluid in my lung was in part due to irritation from draining. I had home care nurses come twice a week to drain the PleurX catheter and often there was pain and lung irritation for a day.
Just curious as I’m always thinking ahead to what’s next. Hope you and your family are well.
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Candy-678
I was ER+ 100% in my original cancer 10 years ago, I became MBC last year with ER 50% to the bone and lymph node. One month later it progressed to the liver and the liver biopsy is TNBC. The two biopsies only 1month apart, my doctor couldn’t believe my tumor type changed so quickly. In fact I insisted to have a liver biopsy because I learned from this site that we should have biopsy for every new progress.
I still believe I have partially ER + in bone and partially ER- in liver. However, I didn’t response to Hormone therapy. My doctor treat me as TNBC.
There is a Facebook group just started one month ago called “receptor flipper”, there are a lot of people in the same boat.
I also have BRCA2 mutation. I saw a bigger chance for BRCA2 to flip after MBC, BRCA1 are mostly TNBC in original cancer.
There is also a clinical trial for Imprime PGG , showed extremely good response for our type.
For myself, I had multiple liver mets last year, after 12 weekly taxol + 8 cycles of Carboplatin, my old liver mets are gone, but one new liver met showed up in my recent scan. I don’t know if I should ask for another biopsy or not. My bone Mets are continue getting better, so I don’t know if my tumor are resistant to carboplatin or just this one new liver met doesn’t behave well. I am going to see a IR doctor and my MO for my next treatment plan.
Cyn
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sandra, yep a taxane would be the next step of doxil fails. we were choosing between doxil or taxol for this and since we are doing doxil then taxol would be the next option. hopefully this works though!!
my mom also has a pretty big liver tumor burden at this point but hopefully y90 will be possible in the near future!
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CynMD- Interesting. Good to hear from another one like me. I guess I am not TNBC yet, as I have a weak PR+ still. But I have not had that conversation yet with my MO. And I am unsure if I am "responding" to hormonal therapy still- small steady growth of liver tumors over the last 3 scans so responding some still, it seems. ?? My next scan is end of June, so we will see if more growth. Imprime PGG???? I will have to look that one up. Immunotherapy? I cannot do immunotherapy. Keep posting, or PM me, so I can keep track of your situation.
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I haven't experienced it but I've heard that going from ER+/HER2- to ER-/HER2- is not the same as being TNBC. You may still respond to hormone therapy. I have personally found that, though I'm still 90% ER+, I'm running out of hormone therapy options. I have been on Tamoxifen, Letrozole, Faslodex, and now on Exemestane. It's unclear that Exemestane is working since I have already been on Letrozole. I am taking it with Verzenio and have what looks like a new liver tumor. Perhaps an oral SERD will work, but I don't have access to them, and none are approved yet. Will an oral SERD work if I have been on Faslodex? Faslodex is also a SERD, just not an oral one. Also, most of the hormone therapies don't work as monotherapies so you still have to find a new complimentary treatment. Most of the trials are in combination with Ibrance but I have already been on that. I think the trial creators like to pair their drugs with Ibrance because it is so effective.
Hugs, Susan
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Hey Susan,
Good to hear from you. I also wonder how effective exemestane will be as I also failed on an AI, now failed on Faslodex and, while it was some time ago, was on Tamoxifen for five years. My MO wants to shift from Xeloda as he wants to hold it in his back pocket (not sure if this concept will hold - increasing right flank pain which may mean Madame X is also failing) and suggested Exemestane. Raised my eyebrows and will discuss possible addition of Everolimus - feel it might make the difference.
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Susan, Well, one possible option is the clinical trial that Dee is on, for ARV-471, which is a bit different that a SERD (it is a PROTAC), but acts like Faslodex, to degrade the ER. It is more effective, where Fas can be shown to degrade half of the ERs on average at 6 mos, ARV-471 degrades 90%. Phase 1 has shown good efficacy, CBR (stable or better) of 42%, and this was for monotherapy on individuals who progressed on I-F and chemos (avg five prior treatments). Dee is doing well and will raise those numbers! That trial is still ongoing and now has an arm that allows Ibrance, but there is only one site in CA (Santa Monica).
So definitely they are getting good responses in people who previously failed Ibrance-Faslodex and even other SERDs
https://clinicaltrials.gov/ct2/show/NCT04072952#co...
https://ir.arvinas.com/news-releases/news-release-...
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Another possible option is combining Balixafortide (CXCR4 inhibitor) with Halaven. This has been studied in phase III Fortress trial that closed last November, and if the results are positive (supposed to be released soon) they plan to file for expedited approval from the FDA. This may be a good option opening up soon!
A new trial is also starting up in July that will combine Balixafortide with either Halaven or Nab-paclitaxel: https://clinicaltrials.gov/ct2/show/NCT04826016
PS Any immunotherapy or CAR-T trials? Hope will know best, will be very interested to learn what she suggests.
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Thanks, Cure-ious! Always so grateful for your knowledge and support. I wonder if I could get ARV-471 since the trial site is at UCLA, the same system as UCSF. It is a daily, oral medication so I could easily have it sent to me or I could pick it up. I am in SoCal once a month now to see my Chinese Traditional Medicine doctor and my kids are both living in LA. I will ask about it. Love that it's working for Dee. Maybe I could swap it for the Exemestane I'm on and stay on Verzenio.
I looked at the Fortress trial but I don't express any CXCR4. I assume that's necessary? Halaven is on my shortlist of possible next treatments along with Gem/Carbo.
Hugs, Susan
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Hi Susan, You could call them and see if they'd allow an Ibrance-to-Verzenio switch, or maybe start the trial with Ibrance and try to switch it over later due to problems with neutropenia? There will be a new ARV-471 trial soon, and apparently includes Stanford, but its probably going to exclude prior chemo so don't wait for it.
also, don't let the Ibrance-Verzenio part of this dissuade you in any way- the really good numbers they got in phase one was as monotherapy alone, heavily-treated patients. Also Dee is taking it as monotherapy, I think... For sure this would be better than the exemestane but they wouldn't let you sign on until the exemestane-verzenio fails.
PS Also, the same company that makes ARV-471 is making PROTACs that degrade several other proteins that are common drivers for late stage cancers of all kinds, and for which there currently are no good drugs. This seems very promising, for example maybe you could degrade proteins like c-Myc or KRAS or EGFR very completely and highly selectively, not like an inhibitor that hits all kinds of other proteins and gives too many side effects. They don't list any clinical trials yet but this technology could be a game-changer and give you other good options
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Dear Sadiesservant, uh, good question about going on taxane again when it did not work for the first time. I think question that should be asked here is if therapies used after taxane can unlock some mechanisms to make a taxane work. I found something here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26886... What I like is Figure 1, which clearly shows taxanes as option when you previously were exposed to taxanes but >1 year has passed. It is an old article though, so considerations could have changed... Saulius
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Shame anyone that has had Eribulin cannot do the Balixafortide with either Halaven or Nab-paclitaxel trial...also it looks like its only in Vermont or Spain???
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Nicole,
I assume you're talking about the new POLTER trial (NCT04826016)? It looks like it's not yet recruiting. No sites are listed at this point. I think they are excluding Eribulin because the FORTRESS trial has only Eribulin arms and the POLTER trials have Eribulin arms as well.
The real deal-breaker is this exclusion: "Concurrent malignancy or malignancy within five years of study enrollment". Seems to exclude anyone with Stage IV BC although the trial description says it's for Advanced or Metastatic Stage IV BC. Weird.
Hugs, Susan
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Susan, I think the "concurrent malignancy" exclusion is for a second cancer other than BC. They make exceptions for localized cervical cancers and melanoma, which are not likely to impact the OS.
Nicole, seems like the POLTER trial Susan mentioned only excludes prior eribulin treatment in the eribulin arm.
Looks pretty promising....
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