How are people with liver mets doing?
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Dear S3K5,
Have you looked at the Piqray thread? There isn't too much info there, but I think I recently read that someone who had had trouble at the beginning now thinks she has settled into the drug. That one was specifically released for the mutation that you have (I have it too). I would do almost anything not to go onto a combo chemo regimen, since I was on ACT when first diagnosed in 2003. My two cents' worth!
Bev
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S3K5, is your history shown here accurate? Have you been on Taxol and Fulvestrant for the past three years? Why not a single-agent chemo like Xeloda? Do you get the feeling your onc is simply comfortable with CMF rather than a new drug such as Piqray/alpelisib? Alpelisib is normally added to Faslodex; is that what he proposes? One thought about a targeted therapy: I had a mutation show up a few years ago, and a drug in mind that targets it, but my onc and I chose a standard chemo, and my more recent genomic testing no longer shows that mutation. So I feel like I missed the boat there and have one less drug in my toolbox. Apparently the mutational picture of the cancer changed. In other words, if you do Piqray now, CMF will still be there in the future, but I do not know if that would be so the other way around. Something to discuss with your onc, anyway.
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JFL. Very interesting about the Doxil,I I'll certainly ask. No he didn't mention a lifetime limit directly but he kind of inferred it when he said. I can't do as much as we did the first time. I really think that means he cannot use as much yitrium. I'll ask more detailed questions soon.
Meanwhile, his office has scheduled the mapping for November 13 , the first lobe on November 20. There are several more things that have to fall into place before I can be sure it's all going to happen .
Gumdoctor
Do your geese winter on that pond? Are they Canadian Geese? You might enjoy a movie a movie called Fly Away Home. It's based on an amazing TRUE story. The first part is sad but then the rest is just unbelievable. .
💞
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Grannax,
Very happy to see you are making good progress on your upcoming treatment.
I do not know as it was the first and only time I have been at that park. My husband said they probably stay all winter as they are obviously accustomed to getting fed.
I will look into that movie. Thank you for the suggestion.
Gumdoctor
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For those who carry ESR1 mutations, there is a new option.
"Lasofoxifene was granted a fast track designation by the FDA in May 2019 for use in the treatment of female patients with ER–positive, HER2-negative metastatic breast cancer whose tumors harbor ESR1 mutations. The drug falls into a similar class as tamoxifen (Soltamox) as an ER modulator, whereas fulvestrant (Faslodex) is a selective ER downregulator, explains Rugo."0 -
many thanks for that info, Bornfighter!!!
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Interesting Bornfighter. I will mention this to my MO on Monday.💞
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after 1 year of chemo pause, a 4 week break from weekly taxol treatment and my body thinks I need to be fertile again. You’ve got to be kidding me.
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JFL, I see you had Adria with your initial dx. Were you limited as to how much Doxil you could have due to cardiotoxicity? My MO mentioned Doxil as a future tx for me, but indicated it wouldn't be much due to my prior Adria usage.
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Jaylea, my MO said that the amount of Doxil is added to the Adriamycin lifetime limit. When I heard that, I was surprised I even qualified for it. He told me the formula but I cannot recall the exact details. However, the amount contributed by Doxil is a small fraction of that of Adriamycin. It is believed that to some extent the warnings are "CYA" and that Doxil is safer than the black box warnings would imply. When I was on Doxil, some people in the Doxil thread had been taking it for over one or over two years, until it stopped working. No one at was pulled off it for exceeding the limit.
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my oncologist said the liver will be sore from the biopsy I had due to progression twice this year it pains under ribs at front right side and right bac
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I dont know if I'm brave enough to have Doxil during my y90s like you did JFL. especially since its my second time around. But, I would like to try it after my recovery.
I'm feeling nervous about seeing my MO on Monday. At least my son will be with me. I guess I'm worried she will be unhappy that I took the bull by the horns and contacted my IR. I'm actually a people pleaser and don't enjoy making people mad. She is aware that I have contacted him so maybe that will buffer her response. I know I had every right to do it. I truly believe it's the next right thing for me to do. But, she might say, I'm not a doctor. UGH. I don't like confrontation.💞
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Grannax - You already know this...you have to do what is best for you...even when it's hard.
I have chemo Monday and will think of you and send you strong, positive, empowering thoughts.
YOU ARE FIERCE.
Gumdoctor
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Grannax, I know what you mean about being a bit more cautious the second time around. Chemo / treatment breaks spell bad news for me but I doubt I would be as aggressive if I get Y90 a second time. Our poor livers have been through so much. Don’t feel bad / worry about what your MO thinks. This is your life. She gets to go home at the end of the day, have dinner with her family and leave all the awful things her patients are going through behind. She is not living this and guaranteed if she was, she would be just as proactive as you
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Thank you Gumdoctor and JFL. Your words mean so much to me right now. I know I'll feel better once Monday is over, just to get one more thing behind me. I think I'll relax.
Plus, I have the SMGlobal Catwalk to look forward to on Saturday. My gown came today. It is truly stunning. It's called silver because of the lace and sequins on the top. It actually has a train. I hope I don't trip on it. But, my handsome escort will catch me. LOL I will be queen for a day when I walk the runway with th other Survivor Models. I get my hair, makeup and nails done prior to the event. My sister is coming on Friday. My family loves to cheer me on. I love to see my survivor friends, all have stage IV cancer. Quite a few have had y90. Representatives from SIR Spheres resin microspheres will be there. Also, my IR may be there. Sadly, several of my closest survivor friends have passed away this year. I will miss them.
After that event, the mapping will only be three more days. Time is flying.💞
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Grannax, you Supermodel, you! I saw they were having the Catwalk in Dallas, but didn't know you were participating again! What a bright, happy spot and I can't wait to see the photos! Woo Hoo!!!
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Katty Come on up and watch the show.I'd love to meet you .,💞
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Wish I could! I'm sure it's going to be tons of fun , and I'd love to meet you, too, but I'll just have to settle for lots of pictures!
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Liver metsers...PLEASE READ THIS>... I found this on the Stage IV BC .. FB page. This women says she has been living with liver mets for 13 YEARS!!!!! Here is her post and my response...
For those of you not working does it bother you when people ask you where you work and you say nowhere and then even when you tell them why they look at you with this look like they think you should be working. It happened again to me this morning. I went this morning for my echo and the tech says where do you work? I said I don't work. I got that look from her and she then says what do you do with your time and what are your hobbies. I then told her I have been living with Stage IV breast cancer with liver mets since 2006 and never really feel all that great so I don't do a lot and that I have lost the capability to do most of my hobbies so I just try to do what I can and find little things to bring me joy each day rather than doing big things. She then just gives me that look again and acts like I did not even say anything and then asks where my husband works. I have made peace with the fact that I am not working and live life in a limited capacity compared to before but whenever this happens I always feel less than. People just don't understand that just surviving and making it through day to day life is such a huge undertaking and I feel they think I should be capable of more than I really am. Sorry for the long post this just really bothers me.
I Said:
WAIT...you have had liver mets since 2006????!!! What treatment are you on?
She Responded this:
Currently I am on no treatment. I previously did 1 year of Taxol, Carbo, Herceptin, Lupron shot and Femara. Then stopped and did L. Mastectomy then just continued on with Herceptin, Lupron and Femara for another 6 years then had a hysterectomy due to Lupron not working anymore and stopped Herceptin due to what had become extreme side effects. After that I just did Femara by itself up until this past January. We had to stop it due to side effects of having taken it for 12 years. I am currently remaining NED while not taking anything.
I then said:
So you have had the liver mets confirmed in 2006 in you liver and those same mets are still there13 years later and have never grown or shrunk in 13 years...is that correct??? Or did it sometime some year after 2006 spread to your liver?? Also what GRADE is your cancer?? I am assuming it is grade 1.... Either way if you have had liver mets for 13 years..you are THE longest known surviving person to I know to have mets in the liver that long...Can you guys believe this???
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Nicole -
I saw her original post on Facebook too.
Yes it is very amazing. HER2+ tumors seem to be responding better than those of us with HR+.
Thank you for reaching out to her and sharing with us here. Her story is very inspiring.
Gumdoctor
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Forgive me if I have shared this already...I have been dealing with SO MUCH...I probably did not share this yet. This is a tiny tiny tiny bit of good news...
I developed a horrible rash on both arms while on Xeloda in July 2019. I had to stop Xeloda after 10 days due to a toxic reaction and largest liver met grew from 4 cm to 9 cm in 2 weeks WHILE ON XELODA.
I then moved to IV chemo Abraxane and am still on it every week for 3 weeks, then off 1 week.
The rash never went away. Sometimes it looked much worse and it started on my face too. Dr Angel sent me to dermatology for biopsies. They came back negative for anything but chemo-induced side effect. But they never went away.
After stopping daily Zantac and having Abraxane reduced from 90 to 80% 2 weeks ago, the rashes on my arms and face are finally starting to go away.
That's my tiny tiny tiny bit of good news. Sometimes a little good news goes a long way...
Gumdoctor
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that is nice. We are in a so crappy situation we are easily pleased, eh ..
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Gumdoctor, we take positive news where we can get it! Glad the rash has improved!
Nicole, amazing about the woman having liver mets for 13 years! HER2 is not typically low grade - it may always be grade 3 but not certain about that - but it can produce long-term, durable response and sometimes what is considered to be “cured” due to herceptin and the HER2 drugs coming afterward. Herceptin used to be described as immunotherapy. I don’t hear that so much anymore but believe it still is immunotherapy.
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Nicole- Thank you for sharing that lady's amazing story. We can all hope for a response like hers. I have come to realize that there are a few that can live for a "long time" with organ mets, but that is not the norm. Unfortunately, there are so many more that cannot claim that success.
Gumdoctor- In your pocket for chemo treatment Monday. And YES we must celebrate the good news where we can get it and no matter how tiny it is.
Grannax- You go girl !!!!! Waiting for those pics!!!! In your pocket Monday also for your MO appt.
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She just told me when she was diagnosed in 2006 DeNovo...she had 20 tumors in liver!!!! OMGOSH I am almost hoping my cancer is now HER2+.....
What ever it is ...I know the Lords GOT THIS!!!! Wednesday get results.
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Nicole, I think many can relate to your last post. Many of us at times, including me, wished we were HER2 + for that same reason!
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Nicole, about wishing you were HER2+, Herceptin has been a great drug for people who are getting many years on the drug (there are several on this forum) and it's exciting to look at the outliers, but it's important to keep in mind that a large percentage of metastatic HER2+ have primary resistance to Herceptin. This article gives two sources that state the rate of resistance in metastatic women is around 70% (that number may be combined primary and secondary resistance, Deadline2020 org puts primary resistance at 50%) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3045786/
and this article states that in the metastatic setting most patients progress within a year https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0132-3I have/had primary resistance to Herceptin and have never been able to get stable on it, not even for a couple of months. If you have primary resistance, all you're left with is a very aggressive cancer, a 50% chance of developing brain mets, and chemo for the rest of your life. There are many days when I get jealous of those who are able to remain on hormonal therapy for years before moving on to IV chemo (mostly those bone-only metsters haha!). The grass is always greener...
On the plus side, being HER2+ does open up more drug options to try, so there's that. And one can hope to be one of the fortunate ones who do get many years on Herceptin alone (or Herceptin and Perjeta).
What I find most interesting about her story is that Herceptin plus an AI is not standard of care. There are a couple trials going on that look very promising (https://www.ascopost.com/issues/april-25-2018/2018-treatment-algorithm-for-metastatic-her2-positive-breast-cancer/) but it would be interesting to hear how she managed to get on a non-standard drug combo so many years ago.
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Hi All, I was diagnosed de novo and have not had any surgery at this point. I/L have shrunk my primary tumor almost completely and my liver mets to 5 mm and 2 mm. I’m being considered for more aggressive treatment and have a consult with a breast surgeon tomorrow and radiologist (liver treatment) next week. Does anyone have any experience with surgery after other treatment first? At first my MO said no surgery, there wasn’t any benefit for MBC but now she’s saying it may be worth being aggressive.
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Dear Nicole, there are outliers on both sides, ER+ and HER2+, there's even a thread (there are several similar) where there are women who are 10 years out and have not been using drugs anymore. It is not "unheard" to live 10 years with mbc. In fact, with computer databases evolving and meta-analysis possible, this is what they know now: https://www.consumerreports.org/breast-cancer/wome... 11 % of women with mbc live more than 10 years! And just few years or so ago they claimed that survivals for mbc were 1-2% at 10 years...These figures will grow with every year, I am sure. There is also some very interesting (and hopeful) data for some mbc populations, like this one: https://www.ncbi.nlm.nih.gov/pubmed/30139836
Ah, dear Lori, for the first time I'll disagree with you that HER2+ people (especially those ER-/PR-) have many options :> At least now we know THP -> T-DM1 -> Lapatinib+Xeloda. No real known options for 4th line, and even 3rd line is very debatable... all the other are very new drugs that all are more or less "trastuzumab based"... everything else is chemotherapy, and even 2nd and 3rd line is chemo... and then your mentioned her2 resistance, that is almost certain... so, uhh, no, please, nobody wish to be her2+...
Someone asked if Trastuzmab and the like are immunotherapies? Well, they are monoclonal antibodies, and real immunotherapies are cell based therapies. But Trastuzumab when it binds to HER2 receptor, makes it easier to recognize that cell to the immune system and to kill, so it is also acting on immune level...
Dear Rosie24, my wife had almost 7 cm tumor in the breast, and liver full of mets. She reacted to treatment so well, that everything was gone, and everyone thought, oh, pCR! I asked if we need to do something else, and doctors said "no". But then she relapsed in her same breast, and we had to go for 6 more rounds of Taxotere, then asked ourselves for mastectomy, and then radiation. We'll see how it works in the future but in your case, if you have power and will, I'd for sure go for surgery, radiation, and everything most aggressive. I think if you have just few spots in liver/lungs, you might be oligo-metastatic (a definition that changes now a bit), and they should approach you with curative intent!
Saulius
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Wow thanks all for schooling me up on that. I always want to learn. Lori..."grass is greener"...yea it sure did look that way. Lori I did not realize that high percentage of people that do not respond to herceptin....and in my excitement of "wow I could live 13 more years"...I forgot (because I did know) about the brain mets..
Saulius...I know you mention about the statistics looking better for MBC...but I am wondering how many of those have organ mets and not just bone mets??
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