How are people with liver mets doing?
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Bstein - I am sorry you are dealing with that. That is pretty subtle progression. If you are really talking about a 3mm lesion that became 6mm, it is within the range of error of scans. I am very wary of declaring progression too soon. It's not about false hope. We can't afford to burn through treatments unnecessarily because we don't have that many great options.
I am always pushing people to wait for confirmation in another scan, get a second opinion and don't assume progression from a single possibly faulty diagnostic. Of course, I am often wrong, but not always. Do be careful not to switch treatments until you are really sure are progressing.
The next thing is to get a biopsy if it is feasible. At a minimum you want to look at the hormonal status; however, genetic testing and functional testing can be also used to inform treatment decisions. You need a testing strategy before you biopsy because the tests have different sample requirements.
Sending you hugs and support as you deal with this transition. Progession is difficult but there are a lot of interesting trial drugs for HER2+... some interesting immunotherapies and vaccines. Local treatment RFA could be a good idea. TACE and Y90 should be researched and considered. You might request best bird's MBC guide, brew some tea, curl up in a comfy chair and read.
The fact that you feel good is a good sign. Take care of yourself.
>Z<
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Z - you are a plethora of great information. How do you know so much? I'm always curious how some of you are just so well-versed.
I think I'll start following this group as sadly and very fearfully, I learned in November that I have two small mets on my liver. Ibrance pretty much didn't do a thing for me except put me in the hospital for two weeks at two different times. Argg, I was hoping for another year or two of NED.
I started Xeloda in late-December 2016 and am on my third round of two on one off. I will have a scan in March.
Wishing you all a very good weekend with little to no side-effects and zero pain or complications.
Amy
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Well after meeting with the head of clinical trial at Sarah Cannon in Nashville, I have decided not to pursue a trial at this time. Most of the trials there are phase 1 dose escalation trials. I can't risk my life getting high amounts of a drug they don't even know what the side effects are. I just don't think I am a good candidate for that at a small 106 lbs!! If I had no options left, I would definitely go for it, but not at this time.
I do have renewed hope that the hormonals will work better for me now that my ovaries are gone. My tumor markers dropped 20 points just 12 days after having my ovaries out! They went from 65 to 45...lower than what I have been. I usually hover in the 50's, but when it progressed to my liver, marker went up to 65. I am on Letrozole now and we are going to add Ibrance next week. My MO will scan at 6 weeks to see if it's working. If not, then it looks like the AA combo, which scares me to death! My MO told me she has a patient hospitalized with a lung infection caused by the Affinitor. Yikes!! And the liver toxicity really scares me because of hep b infection in 2013 that had me hospitalized for 9 days with a failing liver.
Letmywife, Did you and your wife decide on Xeloda?
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Hello Robin,
Sorry I have been away from this forum for a few days and slowly catching up now. My wife is still waiting for the lab results to see if she has the mutation or not. It is proving to be extremely frustrating and delaying here start of treatment. She developed some aches on her right side recently. Scaring the living daylight out of me. Really really praying that the lab results come out next week.
You raise an interesting point about ovary removal. Were you taking Lupron shots before that to keep your estrogen at post menopause level ?
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Letmywife, I first noticed my estradiol levels were high in June but, I could not convince my MO... that it just wasn't right. Finally in August, after persistent nagging, she started me on monthly Zoladex injections to shut the ovaries down. I asked my MO to monitor my estradiol levels each month with bloodwork. She would never order it, so I would have to get the nurse to tell the lab to run estradiol levels. My estradiol levels were still high on the Zoladex after 5 months on the drug, so I said enough!! I took the initiative to demand my ovaries removed. I take the blame for not stepping up to the plate sooner, because I know all about being your own advocate! She was all to happy to refer me to someone. I like my MO's caring nature, but don't think she is on top of things. It is so frustrating!
I still do not have my Foundation One report back either.
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Robin - I am excited to read about your dropping tumor markers. That is a great sign. I think the ibrance/letrozol will work now that your estrogen levels are controlled.
Of course we have to be our own advocates, but it is ridiculous that they never addressed your high estrogen levels. I am asking more questions about my estrogen levels these days, even though they are not getting as high as yours. I'm on 3 month zoladex shots, but I have heard the 3 months shots don't work as well as one would like sometimes.
It doesn't look like you have done faslodex, so why would AA be the next option? Even if you had done faslodex, I'd like to pitch you some other ideas. Personally, I've already decided to skip Afinitor due to the side effects and the poor overall survival numbers.
PM if you get to that point, but I think the Ibrance is going to work this time. It is a smart move to try it again.
LMWL - I am sorry to hear about your wife's pain. I get gastric distress that scares the pants off me, but has turned out to be ... just gas. I hope it is the same for your wife. Thinking of you while you wait. I am not good at it myself, so no advice just sending you healing vibes and peace.
>Z<
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>Z<, I was on Faslodex, Ibrance, & Letrozole from February - May 2016. I had been prescribed Letrozole by my previous MO and about that time I switched to my current MO. She said since I failed Arimidex, that Letrozole wouldn't work because they are sister to each other. Well I disagreed and wanted to take the Letrozole until the Faslodex/Ibrance kicked in. So in May, I had an awesome scan!! My scattered lung mets had resolved and I only had one small bone met that was sclerotic and in the healing process. At that time I figured the great results were due to Faslodex & Ibrance, so I stopped taking the Letrozole. I hate taking too many pills and figured I didn't need the Letrozole, since my MO wasn't even aware I was taking it. I had seen a couple of ladies on the boards that were on this 3 combo treatment and it was prescribed by their MO's, so I felt it was safe. The next scan I had was in August and the bone met had increased in size and SUV. My MO wanted to stay the course with Faslodex/Ibrance, so I told her I wanted to see a radiologist about the bone met. I had the bone met radiated in Nov. My scan in November showed the liver met, so my MO switched me to Xeloda. The Xeloda didn't work but I don't think my MO gave it enough time.....7 weeks! It might be coincidence but things started going downhill when I took Letrozole out of the mix. I'm pretty sure Letrozole was helping lower the high levels of estradiol I had.
So actually I have never failed Letrozole. There are some studies now that show Letrozole, Faslodex, and Ibrance may be better than Faslodex and Ibrance alone. This really has me wondering if that combo worked for me because it was better controlling the estradiol.
My oncologist said Faslodex would not have mattered if I was pre or post menopausal because it works differently than the AI's. Yes I agree it works differently than AI's, but I strongly disagree that it matters that I was pre-menopausal with high estradiol levels. I found an article that states....Faslodex is for post menopausal women!!! The article went on to say that the dose of Faslodex was not high enough to control high estradiol levels, so would not work for pre menopausal women. I printed out the article and plan to show her. I hate doing this because she is the professional and I don't want to step on her toes. But I have had it with MO"S that ignore my concerns and just think we can move on to the next treatment!!
Sometimes I think I know more than my MO and that scares me!!!
You have me re-thinking the AA combo, but that is the last pill form of treatment I have left if Letrozole doesn't hold me awhile. I just don't want to go on chemo yet!
Thanks, >Z< Did anything of what I said make sense to you???
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>Z< One more thing....my treatments are all updated but they don't all show. I'm not sure why?
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Robin - If you feel like I know more than your onc about the standard of care, that is a bad situation. You can stay with your current onc, knowing and accepting their limitations, but you really need to add a second and maybe even third opinion onc to your team. I would work on that ASAP given the non-standard treatment history you have. Even the most proactive among us, those who intended from the beginning drive our own treatment plans, have one or two oncs who are highly competent in delivering the standard of care advising.
Are you on ibrance and letrozol now or ibrance, letrozol and faslodex?
The AA combo is NOT the last hormonal option you have and certainly not the last non-chemo option. You should read through the hormonal sequence in BestBird's guide. There are also trials that included various mTOR and PI3K and other targeted therapies with faslodex and exemestane. And there are immunotherapy options I will personally consider before chemo. There is SBRT and other local treatment options that also have a systemic effect that sometimes make sense.
If you think ibrance/letrozol is failing, come back on the boards and engage everyone in a discussion of your options. There are quite a few ladies who are one or two steps ahead of you on the treatment protocols so we'll want to get their perspectives. But we'll cross that bridge if we get there. Let's focus on getting you stable on this protocol.
The work you did getting your screwed up treatment protocol back on track is really impressive. Amazing really. Your exceptional ability to problem solve and figure this out is going to be the single most important tool in the toolbox. You need to stay in the game, researching, analyzing and discussing ... and assembling a team of oncs to advice you.
Stay in charge, but I am going to be very concerned about your care until you have added a very solid MO to the team advising you.
>Z<
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>Z< Thanks for all your input. I am currently on just Letrozole and meet with my MO on Wednesday and she will add Ibrance. I was pulled off Faslodex & Ibrance on Nov 7th due to the liver lesion. Then 7 weeks of Xeloda that did not work, or was not given enough time to work.
How should I go about getting a 2nd MO. Do I have to ask my current MO? Or do I just find one and get my records to them? If I have a progression and my MO wants to change treatments, Do I also make an appointment with the other MO for their thoughts? I agree this is a great idea, but was wondering if insurance pays. The bad thing is......I have had sub-standard care with every MO I have had. My first MO is the one who told me I was post menopausal from the chemo and put me on Arimidex. Every MO after that just followed suit and assumed that I was. I have lost many nights of sleep over this whole estradiol thing and trying to get my MO to do something. I pushed but not too hard, as I was afraid of stepping on her toes. And then part of me was like....She was a researcher at Vanderbilt University Hospital, one of the best in Nashville, she has to know her stuff.
This is definitely another lesson learned for me! I need to stop being such a wimp about addressing my concerns to my MO. I basically have to grow a pair! LOL
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You can ask your current MO for doctors in your area. I did ask my MO what second opinion she would be interested in seeing. It is certainly a reasonable questions to ask, but gut is you want a second opinion outside of your MO's circle.
Remote Consultations
UCSF provides an online second opinion for $700. Online second opinions are generally not covered by insurance; however, when you consider the travel costs if you can't find a good local option, $700 might be reasonable. UCSF is on the top of my list for a second opinion. I had planned to fly there and do it in person. The UCSF costs will be covered by my insurance, but the travel will not be.
The Cleveland Clinic also provides an online Medical Management review fo $745. Again, not covered by insurance.
Johns Hopkins offers a remote second opinion on pathology only. Not directly relevant to your situation, but something to keep in mind. I've seen a lot of errors in pathology reports and that obviously can result in the wrong treatment decisions.
NCI Cancer Comprehensive Centers
It sounds like you are going to Vanderbuilt, which is an NCI Center. NCI centers are where you want to go, but you probably want to get your second opinion from a different center. Doctors will avoid throwing their close colleagues under a bus. There are three in North Carolina that are as close as Vanderbuilt:
The Comprehensive Cancer Center of Wake Forest
UNC Lineburger Comprehensive Cancer Center
Ask around and see which center does best with breast cancer, which one is easiest to deal with, etc. When you decide on a center, call their intake system. They will often have intake specialist that just work with breast cancer patients. These navigators will explain the process. They should be able to figure out the insurance covers, how you get them the medical records, etc. You don't have to go through your MO.
If I were you, I would get established with one of the NCI centers in North Carolina because it solves the long term problem. The remote consultation only solves the problem at hand and long term may be more expensive.
NIH Trials
As soon as I burn through a couple of hormonal treatments, I will be registering with the NIH so that I am on their radar for clinical trials. Some of their trials take months to get into, so you really need to be ahead of the game and talking to them well before you need to consider a trial. Here is the contact information coordinator for the NIH immunotherapy trials.
Ellen Bodurian, RN, BSN
Research Nurse Specialist
NIH/NCI Surgery Branch
Immunotherapy
Phone: 301-594-2644
fax: 301-480-4420ellen.bodurian@nih.gov
My current favorite NIH trial is the tumor infiltrating lymphocyte trial. I think you might be eligible for it now. There are several promising trials. Certainly you should be considering these trials if ibrance fails you. You really need to be screened and in their system now for that to happen. Immunotherapy works best when your tumor load is low. It's not a great last ditch Hail Mary.
>Z<
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>Z< Thanks for all the helpful information. I am not at Vanderbilt because they will not accept my insurance. My current MO came from Vandy (the reason I am so shocked at the sub par treatment) and is now at Tennessee Oncology. Sorry for the confusion. I will definitely call the coordinator at NIH tomorrow and get on the radar. Are you referring to the tumor infiltrating trial Judy (adventureswithcancer) did? I am scared of that trial because someone died on that trial that is on the Inspire boards. I don't know what the patients background was so I am really just scared of it.
Robin
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Robin - That is the trial, indeed. Two very late stage patients have died on the tumor infiltrating lymphocytes trial. The trial doctors have learned that you need to be in basically good shape to do immunotherapy. Immunotherapy is not a good last ditch hail mary. That is why I have it on my radar now. I believe that the TIL trial no longer accepts very late stage patients so even if I want to roll the dice with immunotherapy late in the game, I don't think it will be an option.
You've been doing very well following your gut, fighting for what you want, so you know what you do. I would not do anything that frightens you ... that is your intuition telling you BAD IDEA. But decide after you do the research. You won't know what to think (really) until you have talked to them. AdventuresWithCancer sometimes answers email on inspire.
Insurance can be an issue in getting a second opinion. Perhaps the place to start is your insurance company ... see what docs are in their system. Find someone who is, at least, outside the practice where your current onc is working. You shoudn't need anyone's permission (except the insurance company if you want them to pay). Just make an appointment, send in your medical records.
>Z<
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>z< thank you for your kind words, they really helped me put things in perspective. The subtle change on my scan really can be a variation of normal/same as before. My MO is keeping the treatment the same. I will return to the interventional radiologist to see if they kind see anything. Last year they couldn't see anything on ultrasound and MRI didn't show enhancement. I thought those three dots were scar tissue. They really maybe, fingers crossed.
Thanks bestbird for your book. It is super helpful when teasing out all the different types of intervenal radiology. Thank you from the bottom of my heart! You have helped educate so many of us!
Scrunch, I'll be having number 28 as planned. You are my rock! We will be fine!
Robin, it's too soon for a trial
good decision. There will always be a trial somewhere if you need it.Hugs and healing vibes through the universe to everyone.
Barb
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Thanks Barb! I think RFA is a great way to go. I was all set to have microwave ablation but my 2 liver mets turned into 4 liver mets, so I was disqualified. I still have SIRT as an option, but I'm going to wait and see what Letrozole can do to them.
Keep us updated!
Hugs,
Robin
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I was diagnosed with bone mets in 2014 which progressed to liver this September. I was on letrozole for bone mets but onc switched to tac chemo The taxol did not work. The AC was ok the first three times but the fourth my red blood cell count dropped to 71. Had to have transfusion. Have refused further AC chemo as it does not appear to be working and I have absolutely no quality of life. Have said will have no more chemo if no quality of life. I think there are lots of other options
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Leonarsu, There are lots of option. Have you had Xeloda or Ibrance? There is also ablation for liver tumors. I too had 4 liver lesions pop up in November. There were going to do microwave ablation when they thought there were only 2 but since I have 4, they said I am a good candidate for SIRT. You should also get a second opinion!
Have a great night.
Robin
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Has anyone had liver mets increase greatly in size - and they recovered from it? I have 'extensive' liver mets throughout all segments of the liver now, per the latest CT scan (just finished reading it - ugh). Part of it states "...5.2 x 3.9 cm (previously 3.3 x 2.4 cm). A more discrete metastasis in segment 3 (image 133, series 2) measures 4.1 x 2.8 cm (previously approximately 1.6 x 1.4 cm). Multiple other metastases are new or larger in the interval. The liver outline is irregular from previously treated metastases...". I was on an immunotherapy trial for the past three months - obviously did not work for me. Prior to the trial, I was on Xeloda for about 10 months, and prior to that Taxol for about 5 months...hormonals did nothing for me. Hoping to hear some good news, while I try to peel myself off the ceiling. Meeting with the trials oncologist at noon - yes, I know, only about 90 mins, but this result really scared my big girl panties off. Sniff, yuck, stupid disease, I wish I could kick it into oblivion.
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nothing but hugs to add Juskeepgoing.
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Andkeepgoing -- I am sorry you are dealing with this. There are any number of chemos that will take care of fast growing mets like that. It's what they do best.
I would get a biopsy ASAP to make sure you know what you are dealing with. I would consider chemo sensitivity testing to increase the odds that the cancer is susceptible to the treatment you choose. This summary of Cytometric Profiling is copied from BestBird's MBC guide. Keep in mind if you decide to do this, the biopsy sample has to be large and handled in a very specific way to keep to cells alive.
Cytometric Profiling ("Chemo Sensitivity Testing") uses tens of thousands of whole, living cancer cells and surrounding (microenvironment) tissues which are obtained from the patient. In this process, sections of cancerous tissue (or malignant liquid, called ascites or effusion) are separately exposed to many different candidate chemotherapy drugs so that the cell killing ability of each drug can be observed and measured.
In cytometric profiling, the tumor or malignant ascites or effusion are tested against different chemotherapy drugs and combinations thereof to see what the cancer cells may be susceptible to and what they may be resistant to. This is still considered controversial and many doctors are not convinced of its value. Furthermore, the test may not be covered by insurance. However, several people have indicated that it has helped them and feel that it was superior to the hit-or-miss approach to chemotherapy that is used today.
This is a link to a meta-analysis study that concluded that there is a two-fold overall tumor response for a chemo assay-guided therapy versus standard of care therapy. Additionally, patients who received assay-guided therapy compared to those who received standard of care or physician's choice had a significantly higher 1-year survival rate: From: http://meetinglibrary.asco.org/content/118466-132
Two viable organizations that conduct chemo sensitivity testing are Rational Therapeutics (RT) at http://www.rationaltherapeutics.com/and the Weisenthal Cancer Group at http://weisenthalcancer.com/Home.html Dr. Weisenthal mentored Dr. Nagourney, who leads RT, so Dr. Weisenthal has even more experience although both doctors are highly regarded in their field.I would also consider local treatment of the liver tumors like Y90 or TACE. I think TACE is better than others for extensive mets but you need to work with a specialist to decide among the options. The treatments involve feeding chemo or a radioactive material into the main blood vessels of your liver and somehow gets the treatment directly to the mets. These treatment options are also summarized in BestBird's MBC guide. You need a copy of ASAP.
I am thinking you may end up with a combination of systemic chemo and local treatment.
In sum, tear yourself off the ceiling, pull up your big girl panties and get to work. This is beatable but the process is not for sissies. If you are in an immunotherapy trial, you are no sissy and you have access to excellent care. I expect to hear about the miraculous reduction of your liver tumor load in a few months.
I do think you need to have a second opinion doc at hand through this. I would be considering Dr. Weisenthal or Dr. Nagourney ... they do testing but they are both oncologists.
Hugs. Take exceptionally good care of yourself as you deal with this. Lots of sleep, walks, friends and TLC. There are 10's of people on this thread ready to talk you down off the roof and discuss treatment options. Please keep checking in. We want to know how you are doing.
>Z<
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Andkeepgoing - Can you tell us what immunotherapy trial you are on? Do you know how it is working for everyone else?
>Z<
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Thanks Leftfootforward.
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Thanks for the info Zarovka. I will keep your info in my back pocket. I am - ahem - 'was' on the Metadur trial at Princess Margaret Cancer Centre in Toronto, Canada. It is a phase I trial to determine whether the hypomethylating agent 'azacitidine' and 'durvalumab' work on breast cancer, as well as a few other solid tumour cancers. I believe ovarian and colorectal cancers. Not sure how it is working for everyone else, as I am one of two BC patients on the trial, 4 people when I registered in November. Possibly a few more patients added since then. Durvalumab is a PD-L1 inhibitor (i.e. it targets PD-L1). It has been having great success with lung and bladder cancers, from what I read last year; therefore AstraZeneca is expanding the trials to other types of cancers. They received breakthrough therapy status from the US FDA for treatment of patients with PD-L1 positive urothelial bladder cancer about a year ago. Didn't work for me - crashed and burned. By the time I arrived at the hospital, the trials oncologist had already contacted my regular medical oncologist to set up an appointment with her to start on a new chemo. She did not want to consider another trial, due to the washout period required, and they want to pull the big guns out again, which means chemo. Awaiting that appt - they are pushing for meeting with her and starting chemo next week. I expect it may take a bit longer than that, but they are on the ball. My regular oncologist gave me the option of Eribulin or immunotherapy last Nov. I jumped on the immunotherapy trial, as I had high hopes for that new option. I had asked her about Gemzar as well - she said she would go with Eribulin first - they have seen better results. So...I guess I am back to losing my hair and shopping for a new wig. Anyways, I am back at work and have meetings to attend and enough to keep me busy, which will keep my mind off things. Ha. the trials nurse asked me if I was going home after meeting with them. "No, I am going back to work. What am I going to do at home - sit and think about the latest developments?". For all I know, I could get hit by a bus before cancer ends me. I will post once I am on the new chemo regimen - or I have a decent update.
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You are all amazing, so now Wendy is joining the liver mets train. Was told five minutes ago that I have a one cm tumour in my liver. So off the trial (which were sugar pills anyway) and now Letrezol . I'm petrified but this is the ire I'm on so now I need info. You ladies are a god send I can't tell you. Is this a death sentence in short order or will I have some time. So many question...
Wendy
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((((Wendy)))) RAAATS. But you are in good company. Including me. For the moment I will just say, sorry, no death sentence. The saga continues. You have to get up and deal with this tomorrow and for many many more tomorrows.
Just as soon as you get over the recent hard punch to the gut, remind me what you were on ... from your signature line it looks like just faslodex and tamoxifen correct? Is that correct (given that you got sugar pills on the trial)?
Are they going to biopsy? The plan is letrozol?
hugs. prayers coming your way. we'll get you through this as soon as you are ready to deal. in the meantime, cry with your son, hide under a rock, and do what you need to do because it does totally s@#Ks. one would like to get a good long break from dealing with this.
>Z<
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Wendy, the right treatment could make that one lousy liver met disappear. Breathe.
Ok, I really want to keep up with this thread, so next time I will read and post here first! Too tired right now. I'll be back!
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I just spoke to my MO, the results of the liver biopsy are positive for liver mets. In my case it is not a mass, more a web like structure growing all through the liver. I have an appointment with her on Monday, so will know more details then. It is a bit of a bummer, but I did have a good run of 6.5 years with just bone mets.
Just another bump on the cancer road to deal with. Thanks to those who fill this thread with so much information, lots to learn.
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Freya - sorry you had to join us. let us know the details, your treatment plan and you how you feel about all this. we do pretty well over here, so hang in there. things will get back to normal once you have a plan.
>Z<
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Hello ladies. I am back on the thread after a short break waiting for my wife's genetic panel test results.
She was planning to participate in SOLAR1 but unfortunately she does not have the PI3KA mutation.
Next step is Xeloda. Not sure what after that since she never got fantastic results from hormonals.
Freya - not to worry. Seems that you responded well to your last line of treatment: I am sure you you get a great response from your next treatment as well.
Wendy - my wife is in a similar situation as your with progression to liver. Let us know what your next line of treatment is. Can they just surgically take it out since it's just one tumor ?
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LMWL - so good to hear form you. You and your wife are always in my thoughts. Xeloda packs a punch and will work well.
>Z<
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