I posted in March about an indeterminate liver nodule .8x.8 cm. Yesterday my scan showed the lesion has grown to 1.1x1.2 cm with several darkened areas elsewhere in my liver. My markers have doubled.
Even though 2 radiologists have said the location would be difficult to biopsy, they believe they can manage it at MDA. The doctor offered several possible scenarios once the biopsy is complete. There is a clinical trial for a "super Ibrance" that accepts not only hormone receptor positive tumors but HER2+ and TNC as well. She also mentioned Y90 radioembolization, everolimus if still ER+ and Xeloda if no longer positive. Even though I've done the Gaurdant 360 liquid biopsy which was negative for the P13K mutation, she said a tissue biopsy may have different results....glad I'm being billed that $10,000!
I'm trying to find the super Ibrance trial online without much luck. I have no idea how I could manage getting back and forth to Houston as often as necessary. It's just so expensive. It's 14 hours one way to drive it. Hotels. Cars. Dog sitters. Ugh. But, I'll figure it out. If the trial doesn't work, maybe the radioembolization.?.?.?
On top of the liver lesion, we went over all these little bits and pieces they see inside of me....lung, spleen, and bone She said although they are not currently considered malignant, they may likely be one day. Oh joy!
The doctor kept pushing my hair out of my eyes and holding my hand as if Iwere a child. Mind you, I had almost no emotional reaction. No tears. No trembling. She's this little tiny whisp of a woman. Probably 20 years younger. She was being kind but it seemed so ominous. I asked her about prognosis, and she quoted the 5 year data. My oncologist at home says 10 to 20. I think he's full of it.
Sorry for the gloominess. I'll suck it up in a day or two. Thank you all for listening and being strong shoulders when you have so much to deal with yourselves.
Love and hugs, Andi
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Arisgram
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I'm so sorry about the results and treatment challenges. It sounds like you've gotten some really good info (I guess you go to MDA for good reasons!) and I'm also interested in learning about this "super Ibrance" trial, especially for my sis, who has has TN MBC (TNC in your post = triple negative?).
And thank you for sharing that valuable info re: tissue biopsy possibly showing something different from the liquid biopsy...That sort of info is so helpful to all of us...**Yet another example of why this site is so valuable.
I really do have to google to understand alot of the options you reference but I will say that I found it encouraging that there ARE good options...
But still, I know any progression can be discouraging. I wish you the best and please do keep us posted.
Thank you for the encouragement, Lynn. I thought of you while I was being stuck!
I have asked them to send me a link to the study which I will definitely share. I was so stunned by what was being said, I retained very little of it....but what I remember sounded good. Especially that the treatment was not receptor dependent.
I was at first leaning toward the radioembolization, but my local oncologist warned me that it might kick me out of any clinical trials.
I'm trying to schedule my biopsy this morning. The thought of the needles...
My sentiment exactly!! I keep reading about my path from here. Unless this Ibrance thing works, it looks like a myriad of unpleasant choices. Fingers crossed, and I'll definitely let you know what happens.
Have a good one! Andi
Hi Andi,
It sounds like you have been given a lot of information to take in. Your oncologist sounds so kind and compassionate, holding your hand and being so tactile.
With all the options ahead of you it sounds like you will soon be able to get started. Please don’t get discouraged about the prognosis. I don’t think doctors should predict that sort of thing, because it’s mostly guesswork. Who is to say that a cure will not soon be found? Then we can all look forward to living out our lives just like everyone else who does not have this metastatic diagnosis hanging over them.
Hey Sophie, it was my fault for cornering her on a prognosis. I have an adult autistic son and grandchild. I am doing my best to provide some security for them when I'm gone as well as insure I don't get to a point I need outside help. She was gentle with her delivery, but she wasn't going to shoot the moon like my local oncologist. She said the right thing. I know there's just no way to know.
I hope you are doing well and finding some joy every day! Thank you for responding!
I can understand your situation, because both of my brothers have autism too. I worry about what may happen if I die, as I became the matriarch in my family after my mum died. My middle brother still lives at home with our dad, and my oldest lives in a nearby village in assisted living accommodation. I help out where I can. I can certainly understand wanting to make provision for your son and grandson. I am still hopeful that we may see a cure, or at least gain access to newer and better drugs that will turn this disease more into a long term, chronic, manageable condition, rather than a death sentence.
Whenever I look up survival data online, the only thing that ever comes up is five year data. There must be more info somewhere. I have heard that lobular carcinoma is slow growing. But what does it mean that the spots aren’t cancerous now? Either the cancer cells have migrated and started to make something grow, or they have not, right? Good luck!
Sounds like they have given you lots of options which is great. I’ve heard good things about Y90, but it’s not an option for me because I’ve had too much spread. If you go to Breastcancer.org and do a search, you can find some good info about patients experience With that, if you are interested. Sorry MDA is so far away. I used to live in Austin and thought about going there but didn’t want to drive three hours, so I can’t imagine 14. They are the best, though. Best of luck to you.
Yes for “Super Ibrance “ ! You sound as if you are in great hands ... and I hope you find a way to get to your great hospital ! Good luck ! Will be thinking of you ! x
Thank you for the tip. I love the idea of just zapping the thing, but my local guy says no. He said it would eliminate systemic trials.
If I may ask, how long have you been dealing with "active" liver mets? What treatments have you been through and what is your quality of life?
I work full time and live alone. I'm worried about what's in store. My side is already in a constant state of "ache" and the Ibrance fatigue is pretty tough.
Thank you for your help, and I hope you have a great day today!
Vent all you like. We’re right there with ya. That’s a lot to process so one baby step at a time will get you where you need to go and keep the faith that God is in control and will guide you.
Hope you don’t think I ignored your private message but I’ve messed up the email thing so can’t reply to ladies who have sent me messages....not sure how to do it...it’s not my proper email address ☹️
Of course not, Barb. I just thought you had too much going on. I'm there now, and I'm nothing but anxiety and depression.
I hope you're feeling some better. You have a cheerleader in me....and everyone on this board! If I learn anything more about liver mets, I'll be sure to get you the info.
Why don't you call or email your doc and ask her for the official name of the super ibrance trial and the actual link to it so you can stop searching. If you have the energy share the link here.
Just wondering if you should get second opinion about your scan results? Do you absolutely require another biopsy prior to beginning an alternative treatment?
I also wonder if you might investigate a new oncologist. Sometimes the tone and manner of a doctor can make such a difference. I’m sure your doc means well but her behavior sounds as if it’s adding to your stress.
Thank you for your kind message. I've actually had 5 different oncs take a look. All agree. I need a biopsy. I held out some hope for the "super" Ibrance trial because it wasn't dependent on pathology. Unfortunately, I didn't qualify.
So, off to Houston Monday for procedure on Tuesday and consult Wednesday. The oncologist there is brilliant, communicative and a little too "warm and fuzzy" for my taste, but now that I know that, maybe it won't unsettle me. I'm used to my grumpy old "run some dirt on it" doctors!
Thanks again for your kindness! Have some fun today!!
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