How are people with liver mets doing?
Comments
-
Kattysmith- Woohoo!!!! Congratulations!!! Happy for ya.
0 -
Katty soooo soooo happy for you!!!! ((((hugs))))
0 -
Kattysmith - Congratulations that is AWESOME news!! I can't imagine waiting 5 months for a scan, but to have such great news is FANTASTIC. Do the happy dance!!!
On an interesting note....I have a new MO and she said "toss your tumor marker data". She told me she won't be making any treatment decisions based on tumor markers and she feels that they only cause anxiety for the patient. She had also worked at FDA for a few years and said FDA does not use data from tumor markers for the same reason. And pharma companies don't use tumor markers in clinical trials because they are not acceptable to FDA as surrogate endpoints and treatment decisions in trials will be made on imaging and patient health/deterioration, not tumor markers. I was pretty shocked as I was getting used to relying on them, but we will see. So, my take on this is BE HAPPY with your imaging data!!
Interested in what immunotherapy you were on. You had initial good response? How long was the response? THANKS!
0 -
My tumor marker Ca15.3 showed upward trend which alerted my MO to scan. I have fast growing liver mets and I am glad it was caught so my liver was not compromised.
My TM is an accurate reflection of my specific cancer. I cannot take the chance of waiting for other symptoms and therefore hindering response to treatment. I just cannot.
0 -
Kattysmith What great ideas you have. So creative. Your grandson will have good memories of the Pandemic, thanks to you. I haven't seen mine yet but it should be soon. I did get to have my daughter over for lunch. That was a first since the quarantine. We will make it through this.💞
0 -
Sandi- I posted on another Thread but I see you here in last couple of hours--- have you had your MRI? When? Results?
0 -
Katty, terrific news! Yay!
Sandi, I'm like you -- my TMs tell us when something's coming down the road. Other than fatigue from meds, I am completely asymptomatic and although I HATE TMs, I don't want to go to a point where symptoms are evident and it's too late to do anything.
0 -
Hi Candy-678.
In Jan 2020, I had an abdominal MRI which showed one questionable area in liver during the arteriole phase, (when contrast in fast injected). The arteriole phase is where you will see mets, off hepatic artery. I also had slowly rising TMs. This alerted my MO to take notice. Monthly labs showed steady TM increase, but no other abnorm lab results. We watched and repeated MRI in March which showed widespread mets in both lobes, along with abnorm liver enzymes for 1st time and TM greatly increased. I blame the fast progression on my FGFR1 amp mutation, which thumbs its nose at antiestrogens/CK 4/6 inhibitors. So I was put on Xeloda and labs, TMs quickly calmed down and liver enzymes normal. I only had a 2 day break between I/L and Xeloda.
I rescan in 2 weeks with MRI which is gold standard for liver mets. Hoping to get a good run on this drug.
0 -
Dear Kattysmith, I believe your courage to join clinical trial, and your MO's effort to keep you in it, is paying off. It really might be that Opdivo made cells try to escape by conventional/other pathways, and now Xeloda will kill them. Let's never loose hope. Stage IV is curable, it is just not yet understood why, when and how, and that is why just few hit the jack-pot. We call it luck but actually there's something obvious, genius and simple behind all of this. Saulius
0 -
I did get the results of my A1c and it is much higher, 8.1. I started on a higher dose of Trulicity yesterday. Any type 2 diabetics out there? I've begun to think almost any chemotherapy complicates life if you have diabetes. I am hoping this higher dose will help with the weight gain. It has an SE of a little weight loss, maybe it will counteract the SE of Faslodex. I sure want to stay on this easy TX, especially since its working. 💞
0 -
sorry I can’t remember names. My liver biopsy was sent to foundation one. I have the PIK3CA mutation.
Someone has to go with you for the biopsy and drive you home. I had ultrasound guided. Versed. Then you have to lay flat for several hours afterwards. I had one nurse assigned to me until I was sent home. He checked for bleeding every 15 min. I don’t remember any pain. But you can’t eat. Made for a very long day.
I turned down the trial that was using a lymphoma drug off label. I’m not comfortable waiting 5 weeks with nothing and no guarantee for getting the lymphoma drug. I don’t feel Verzenio and faslodex alone would work as I tried it with ibrance and failed it 2.5 years ago.
I had a successful run with ibrance for 18 months. Then I took a low dose of xeloda for 2.5 years. 1 pill twice a day, no breaks except vacation or side effects.
Rads to liver in dec and good scans in late February. Bad ones two weeks ago.
Thanks to whomever mentioned piqray. That’s what I’m going with along with metaformin, zometa and faslodex.
Good luck!
0 -
Zills4me, was this the first F1 report for you? Did you have a bx prior to going on Xeloda?
I am trying to understand when you PK3 mutation occurred. I guess before Xeloda?
0 -
I’m so very disorganized both mentally and physically.
My first biopsy was in 2013 when I had my BMX. Tamoxifen.
Sept 2015 BSO arimidex, xgeva
Jan 2016 ibrance arimidex
Spring 2017 ESR1 mutation while on ibrance and switched to faslodex.
Nov 2017 xeloda
Jan 2018 testing VUS in ATM gene
Feb 2020 testing ESR1, PK3, CCND1 mutations
June 2020 piqray, faslodex
I hope this answers your questions. I’ve stayed hormone positive and her2 negative.
0 -
Hi Zills, I think it is fascinating that you acquired the PK3 gene while on Xeloda.
Unless, it was always there and the F1 in 2018 was not testing for it..
Hoping your new treatment will give you a long run!
0 -
You are one smart cookie. I’d like to think they didn’t know to test for it. That would one big mama of a side effect.
I need to order some Zyrtec as a preventative for piqray. Anyone know the dosing?
0 -
PIK3CA has been on Foundation One's assay since at least 2014 when I had my first F1 testing at mbc diagnosis. At that time the tumor did not have that mutation. After Taxol then two years of Ibrance + letrozole, a PIK3CA mutation showed up on my Guardant 360 in 2017, and again on G360 and F1 in 2019. Also, the alteration I am currently targeting, ERBB2 was checked and not detected in 2014 but did show up in 2017 and 2019. The number of mutations has increased over the years, presumably in response to treatment pressure. Little bastards. Now my tumor mutational burden is high, but MSI is not.
Zills, nice to see you and wishing you lots and lots of time on Piqray with minimal side effects.
0 -
hey SP. how’s it going? Thanks for sharing. Good luck to you
2017 testing says DNA analysis.
2018 says genetic testing.
2020 was G360Ihave no idea what the original biopsy was.
At least that’s what my dr notes say.
0 -
hey SP. how's it going? Thanks for sharing. Good luck to you
2017 testing says DNA analysis.
2018 says genetic testing.
2020 was G360Ihave no idea what the original biopsy was.
At least that's what my dr notes say.
0 -
Hi Shetland, good to hear from you. I've only had two Genomic testing done. First was F1 and the second was whoever UTSW uses. They both turned out the same with ESR1. First was 2016 liver BX at DX of mets. The second was 2019, liver BX of new mets. I think some others showed up but weren't actionable.
How are you doing? 💞
0 -
Does anyone know if Best Bird is still around? I did a search and nothing came up. I have a question about something in her guide book... I want to know if this:
Pre-Testing a Tumor before Taxane Treatment: Testing a tumor for RNF5
is just something that was done on cells and not in human testing? The guide book doesn't say?
0 -
Hey Nicole. I did a search and she posted a little over a month ago, but checked in yesterday. You should PM her.
0 -
I actually tried emailing her..no reply I cannot find her on here to message her.... I did a member search for Best Bird and got nothing?
0 -
Nicole --
Look up Bestbird -- one word -- and she pops up.
0 -
Hi everyone
got my scan results yesterday. My bone mets are stable despite exterme hypercalcemia (mysterious, especially since my parathyroid is working fine) but nice to know I can stay mobile a while longer.
That's glas half full. Glas half empty--the two liver mets have morphed into a large tumor that covers a third of my liver. That was about a 25 perent increase after 3 months on Doxil. Unfortunately they don't have anytning left to give me so it's no treatment-quick downhill to the inevitale or continued Doxil--slower decline but no hope for improvement. We got as close as we have to "the talk" but no talk of months left etc.
However since I shelled out two thousand dollars for the FOundation One test we are hoping that wlll open some doors. One tose results come in (soon we hope) the tumor board will hopefully have some creative ideas. Good news is that my MO is now willing to confer with the doctor who does Y90 treatments--she is willing to review my scans and see if I am a candidate. the best you can hope for is that it buys you time, says MO. Well, you say the same about the Doxil say I.
Next three weeks--stay tuned. Processing, meditating, trying to keep spirits up.
love to all! AMY (stockholm)
0 -
aroisson- I hated to read your post. Praying the Foundation One test will give you some options. And good that your MO is considering Y90 now. How do you physically feel? You are in my prayers. Keep us updated.
0 -
Dear Amy,
Happy about your bone mets, but I am sorry to hear of your liver mets news. But happy that your MO is now willing to consult with a radiation oncologist. I'd shoot Foundation One an email -- from my experience they are pretty responsive -- and see if they can speed up your report. As you said, that may provide other thoughts. I also see that you are HER2+ -- have you done the typical HER2+ drugs -- perjeta and Herceptin? I don't see that in your profile, but you may have done them already?
Also for what it's worth -- here, an interventional radiologist (not a radiation oncologist) looks at and does possible treatments for the liver. Not sure how they do things in Sweden, but can your doc have either a tumor board or liver board look at your scans and see if they recommend anything? Y90 is one possible treatment. I had microwave ablation on my largest liver lesion (2 cm) and that's held me steady for a year -- liver is completely stable (knock on wood). There are so many other possible treatments, but it sound like your MO is finally coming around to this type of treatment. Good luck!!!!!
0 -
Arolsson, I am hoping JFL or Grannax2 will chime in about Y90..that targeted therapy worked for them.
Maybe this could give you the time to explore F1 recommendations and HER+ drugs. It is all about keeping us going from treatment to treatment, because there are always new drugs becoming available.
I am sorry you have this emotional distress. As soon as you have a plan, the better you will feel. They didn't give you "the talk" because they have not given up.
0 -
Also, have you looked at the Er-PR-HER2+ thread? If not, it's at https://community.breastcancer.org/forum/80/topics...
0 -
thank you all!
I started as ER+ PR- HER2-. THen morphed to a weak ER-PR-HER2+. But from the same biospy they get many results that are HER2-. I have been on Herceptin + Doxil now, but the targeted HER2+ drugs like Kadcyla were a complete disaster. So I am trying to get myself classified as triple negative which would make me qualified for immunotherapies. So far the tumor board is not convinced. But the F! results might show that some cells are masqueradingas HER2+, according to my MO. In any case he seems much more open and has promised to contakt the Y90 specialist at another hospital. I found her by searching for "Sweden" and "Y90 for breast cancer metastases to the liver"on google scholar. So she's published and also turns out to be nice.Am getting braver about being my own advocate. : ) Thanks all !
0 -
Amy - thinking of you dear girl and sending you good mojo from Texas.
Xoxo Katty
0
