How are people with liver mets doing?
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BAP, if the ibrance doesn't work as well as expected, try abemaciclib. It may work where ibrance doesn't. My wife made the switch owing to rising tumor markers, and it brought them back down.
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Husband,
Will definitely bring it up to my MO. I don’t get a Pet scan until mid January so we will see then depending if my body can handle the ibrance with my counts. I have a mid way blood draw this Friday. I might broach the subject with her at my next visit to see what her thoughts are on it. So I know what to expect if ibrance fails
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I just had the MRI we don't see any mets in the report are we right??? HISTORY: Frontal mass
COMPARISON: CT head from earlier the same day. Brain MRI 07/26/2021.
TECHNIQUE: MRI of the brain was performed with and without contrast
enhancement. Enhanced images were obtained following intravenous
administration4.6cc Gadavist.
FINDINGS:
There is no evidence of acute infarct, mass, hemorrhage, or
hydrocephalus. There is an approximately 2 cm area of abnormal T2
prolongation the right frontal white matter. This is unchanged compared
with prior MRI and is nonspecific, likely an area of leukomalacia from
prior insult. There is no associated mass effect, hemorrhage, or
abnormal enhancement.
There is a stable moderately extensive area of enhancement in the pons,
likely a developmental venous anomaly.
There is an unchanged 3 mm hypoenhancing area centrally within the
pituitary gland, is likely either a pars intermedia cyst or
microadenoma.
The paranasal sinuses and mastoid air cells are clear.
IMPRESSION :
1. No acute intracranial abnormality identified.
2. There is moderately extensive area of abnormal T2 prolongation the
right frontal white matter. This is long-standing and is nonspecific,
most likely an area of leukomalacia from prior insult.
3. There is moderately extensive area of venous enhancement in the pons,
likely developmental venous anomaly.
4. Unchanged 3 mm hypoenhancing area centrally within the pituitary
gland, likely either a pars intermedia cyst or a microadenoma.
David Mehfoud, MD
11/30/2021 7:27 PM
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This is good, whatever they are looking at has been seen before and is unchanged.
(gentle hugs) keeping you in my prayers Nicole!
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What Terri-C said -- so glad that you had this test done.
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praise God they came in and confirmed!!! NO CANCER there.
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What a relief. Bev was right; that fellow did not know as much as he thought he did. So sorry you had to go through the worry. I'm actually pretty ticked off that he would tell you it looked like a brain met without your even having an MRI and a fully qualified person interpret it. How careless of him to just say that and put you through hell.
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Yay Nicole ! What a fright ! I second what Bev said. He put you through such unnecessary worry
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Nicole- what a scare! So glad it was a false alarm. BTW, Verzenio is one that crosses the BBB. I remember my first MO mentioning it when he first started me on it. Here's a recent article that mentions it.
https://pipelinereview.com/index.php/2021101379411...
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Uh, Nicole, so much has happened overnight. No words can tell how happy I am that nothing was found. Phiu... Saulius
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Gee Nicole, I have just caught up on all the posts ,what a horrible time you had. I am glad this stressful incident has ended .
B.A.P. wishing you a long time on Ibrance and hope your port works safely.
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That is fantastic Nicole
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Nicole I am so very happy for you. I celebrate all these victories for all of you ladies.
I need a little help.. This might not be the best sub to post in but since my mum is in the same boat as all of you, I was thinking maybe someone had a word of advice for me.
She's currently stable on ibrance and her doctors are looking to use cyber knife on her two largest lesions since they're increasing just a bit. She lives symptom free and apart from knowing she has MBC she feels absolutely fine. However, she has entered a state of horrible anxiety and depression.. She cries and argues with me everyday, doesn't want to do anything, go anywhere, only speaks of dying and how it's all over.. Even though doctors are giving her great chances. I've tried being understanding, tried taking her to trips, suggested psychiatric help.. She won't hear it. We've come to a point where she cries and argues everyday almost all day.. Whatever I say she finds a way to make it seem like she's dying. I am honestly at a loss. I need to know how to help her without also killing myself because this situation has been incredibly hard.
Grateful in advance, a daughter who loves her mother.
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Ok...what a relief that is to be over with. Thank you all for being here for me!!!! It means so much to me. So I had a long conversation with my MO... turns out the MRI of the liver I had on Monday... there are 2 tiny new lesions..so this is considered progression...we are gonna move to Trodlevy..... I welcome all prayers for minimal to no side effects... Thank you my dear sisters.
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Had an appointment with my MO yesterday. Most recent scan (October) was a good one -- bones stable, liver mets significantly tamped down, nothing else really going on. Have been on very reduced dose of xeloda combined with neratinib. Two sets of labs since most recent scan. Basically stable after a xeloda adjustment downward, but she wants another scan in early January. Talking now about enhertu as a possible next treatment, since I have Errb2 mutations (so technically low HER2, as I understood it). A bit scared about enhertu, since the list of side effects is long and includes a high degree of pneumonitis among users.
Still going to PT for my dual hip surgeries in April. Found out (shock to me) that I may have trouble getting into a trial since I am still having some issues with ambulation. Motivation to step it up in PT, I guess.
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I have been off the boards the last 12 hours. Good to come back here to good news !!!!
Nicole- Thank God no brain cancer !!!!! I am glad you stayed for the MRI and the doctor discussion about the results. I pray the new treatment for the liver mets is an easy one as far as side effects (I have not read about the med) and that you get some stability for once. BTW... what was the headache that took you to the ER? I was thinking maybe you had a stroke. Thank God it was not that either. Did they give you some meds for the headache? Your posts seemed like you were a little off---typos, etc. That could be a sign of a stroke too.
BevJen- Happy for you that your scans were good. Woohoo. I have not discussed the "next plan" with my MO. I have read that with Lynparza the median PFS is 7 months. I am 3 months in. Happy it is working and hoping it will for a long time, but we have not discussed what would be next.
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DaughterOf,
First of all, your mom is so lucky to have you. I'm so sorry that she is in a bad place and seems to be taking it out on you. I agree that psychiatric help of some kind and perhaps an antidepressant would be a good idea. Does your hospital have palliative care? My palliative care doctor has helped me a lot. Would she be responsive to you explaining to her that she needs to do these things because her psychological condition is taking a huge toll on you? No mom would want that.
I am reading a book called "Full Castrophe Living" that focuses on mindffulness based stress reduction (MBSR) for those who are facing serious conditions. There may even be MBSR workshops in your area.
Hugs, Susan
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DaughterOf, I think that's not an unusual way for your mother to feel. i was like that for months and that feeling still sometimes grabs me, just like that. I'm wondering if the winter holidays are making things worse for your mom? It's a lot to think about, is this the last one, how to make it special. It can make me very angry and depressed.
The other thing that can be really annoying for me is when people around me are all upbeat and positive. It makes me 100000000% worse and angry. Like they're minimizing what I'm going through & not understanding the tragedy I'm feeling.
Also, it takes 2 to argue
don't argue with her. Don't contradict her. When I'm angry or sad, I definitely do not want anyone saying 'oh but you're doing well now.! The dr says things are looking good! blah blah" (I don't know if that's happening so this is just examples). Let her feel what she feels and be how she is. Yes, she'd probably benefit from a support group and talking to other metastatic patients or joining this board or showing up at the BCO Zoom but if she doesn't want to go then you can't make her.
YOU should go to a counsellor and join a support group for caregivers. Control things you can control, & let go of the things you can't.
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Nicole, so glad the brain mets thing was just a whole bunch of stress that turned out to be nothing but bummed about your liver. I hope Trodelvy is very good for you. hugs
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BevJen, in the clinical trial exclusions sections they often mention ECOG score, and most seem to want 0-1. You can read about the scale here https://ecog-acrin.org/resources/ecog-performance-... I hope your PT continues to go well. I'm doing PT for my wrist and there are improvements but it's been slow...
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Bev, you said that there is a relationship between ERBB2 (Her2) mutation and Her2 low. Can you or anyone else explain/elaborate?
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ECOG performance status #notgrade5yet
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shetland 🤣🤣 . 'm gonna start using that hashtag
Have you broken out of hospital yet?
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SP,
No, I can't explain the mutations versus HER2 low stuff -- I am just parroting what my doc was saying yesterday and I didn't question her about it. I figured we'd have that talk if and when I was more likely headed for a drug change. I can only process so much at one time.
And, Moth, thanks for that link. I, like others here, am more than slightly amused that they had to have a number on the scale for dead. (I think it was also on the Karnofsky scale as well.) That's bizarre.
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I have not broken out yet, but we are making progress. In a few hours we should know just what gram negative bacterium infected the port, which antibiotic to use (currently on IV flagyl and cepafine), and have orders for a home health nurse. I will have them re-teach me how to do the daily IV antibiotics myself so hopefully they can come over just once. Because of covid I do not want a home health care worker visiting me after visiting other folks. The really good news is that the doctor who just came by says I will probably be able to keep my port because it is a gram negative and not gram positive bacterium. (The gram positives are sticky on ports.) My white blood cell counts and temperature have improved.
The nutritionist says I have moderate malnutrition and am underweight. No kidding, after chronic diarrhea from treatment followed by bowel problems, fasting, surgery, low fiber diet. Lol it feels like I have been told I need to improve my grade or I won't pass the class. I am supposed to add protein powder to food, eat a lot, etc. I had gotten my iron up a point but it is down again. Sigh. A nice thing about this hospital (!) is that the food is good and I can order what I want any time, whereas at home DH and I have to do all the work of getting ourselves fed.
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Of course, Bev. We can only process so much and often need to focus on the current situation. If I get a chance to ask my onc I will tell you what she says.
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Ha SP! Definitely a great hashtag although the Karnofsky scale makes more sense to me... dead = 0. LOL.
Daughter, Moth makes some excellent points. Your mom has not been stage IV for that long and it takes time to adapt to this reality. Hopefully, if she gets a good run on Ibrance she will get to a point where she recognizes she will have good days and she's not done yet. But even for the most determined among us, the feelings of despair can take hold, often when things shift, a treatment stops working, etc. but sometimes for no reason at all. This is a hard road which is difficult for others to understand.
I'm happy to hear the good news from others on scans. Nicole, so happy that the MRI debunked the notion of a brain met but sorry about the new lesions. I'm currently holding my breath, waiting for my next CT scan on December 17th. Pretty sure the Vinorelbine is failing given how I am feeling - lots of spine/hip pain, headaches and discomfort in my right quadrant all point to progression but I won't know until I get the results. Hopefully I can connect with the MO before Xmas to find out what the CT shows and what the plan is if I am right about progression. Timing is a bit tricky as folks start heading off on leave plus I'm still dealing with the MO stand in who has been very difficult to access ... my own MO is back from sabbatical on February 1st and I'm counting the days! This last few months has definitely made me realize how fortunate I am to have the MO I do - he's fabulous and super responsive.
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Dear Nicole, I am pretty confident about you and Trodelvy. Targeted drugs are coming into action!
Dear Shetland, isn't the ERBB2 mutation that lead you to start Neratinib? I mean... many human epithelium cells have HER2 expression but ERBB2 mutations can lead to "more" expression, which until some amount may be called "Her2 low". Or you might have no expression, i.e. proteins on the outer surface of the cell but mutation, so this is when TKIs become handy? I think if you score 0 for HER2 on IHC, you still might very well benefit from TKIs that work from "inside" of a cell, and not from outside like MABs. Am I right or wrong? So, let's say, if BevJen is Her20 but has many ERBB2 mutations, it would be better to get a TKI, like Neratinib/Poziotinib/Tucatinib? Why Enhertu then which primarily acts on outer surface expressions?
Saulius
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Saulius...I am confused a little about Trodlevy being a targeted drug...I just don't get it...bc its chemo...it makes all your hair fall out just like a taxane...so how really is it different from chemo by being a targeted therapy?
I am leary ONLY bc I think my cancer in spine..is still ER+....I say this bc there was no progression there on the Halaven..only the liver progressed....So it makes me wonder if the Trodlevy will work well....
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Hmm... I did not know Trodelvy causes hair-loss but when I looked up the target, hair follicles has cells expressing TROP2, that is why... Trastuzumab blocks HER2, so epithelium healing is difficult, also affects the heart and other HER2... ADCs is chemo, but at least it is a targeted chemo that can deliver extremely toxic payloads to these unfriendly cells. Nicole, did I miss something - I thought you treated the spine part? Saulius
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