Topic: How are people with liver mets doing?

Dec 1, 2021 07:50AM NicoleRod wrote:

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.

Dec 1, 2021 08:50AM candy-678 wrote:

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.

Dec 1, 2021 01:23PM - edited Dec 1, 2021 02:53PM by moth

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.

Dec 1, 2021 01:42PM moth wrote:

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...

Dec 1, 2021 01:47PM ShetlandPony wrote:

ECOG performance status #notgrade5yet

Dec 1, 2021 02:14PM BevJen wrote:

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.

Dec 1, 2021 02:29PM ShetlandPony wrote:

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.

Dec 2, 2021 02:17AM BSandra wrote:

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

Dec 6, 2021 01:41AM BSandra wrote:

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

Dec 6, 2021 10:17AM S3K5 wrote:

Nicole, I am so happy and relieved that there is no brain met. I can imagine the stress you and your family must have gone through. There is a thread on Trodelvy, but I don't think it is very active. I was on Trodelvy for less than 3 months. Unfortunately it didn't do much for my spine or liver mets. I lost what little hair I had after Doxil treatment. Other than that, the side effects were tolerable. I did not have diarrhea on this drug but had to take anti-nausea medicines. I hope this drug works for you.

Daughterof, I can understand what your mom and you are going through. As others have pointed out, it takes time to come to terms with MBC. Looking back, I think I felt almost normal when I was on Ibrance. It did keep my spine mets stable for 1.5 years. I think your mom probably needs assurance. The fact that many of us have been okay for such a long time should give her assurance that it is not the end. I was diagnosed with spine mets in 2013 (YES, almost 9 years!). Please tell your mom that there are many women living with bone mets for a long, long time.

Dec 6, 2021 11:33AM moth wrote:

nicole i think I wrote before my analogy that it's a drug that combines a key to unlock a cell, and a package of chemo. The key only unlocks certain lock. - TROP2. So it is targetted.

Trop2 is present in many healthy cells but there is way more of it in breast cancer cells so they suck up more of the chemo package.

Dec 6, 2021 10:18PM S3K5 wrote:

NicoleRod, you are right. Trodelvy is for TNBC.

I have been diagnosed as TNBC in Oct 2020, after they did a liver biopsy. Till then, I was treated as if I was ER+/PR+ since that was my original diagnosis. After Doxil, I started on Trodelvy. Now I am on immunotherapy/Chemo combo, which is also for TNBC.

Since one year, none of the treatments have really worked to halt the progression of the mets in liver and spine. I am reaching the end of available treatment regimens. Immunotherapy + carbo is my only hope. I will find out in about a month if this treatment is working.

Dec 7, 2021 09:46AM NicoleRod wrote:

Thanks you Saulius.

S3K5....are you or your oncologist looking into clinical trials? I just messaged one in MN where they inject measles into the tumors to create an immune response.... but since you are now TNBC you should be eligible for some trials? I wonder why the Trodelvy didnt work being you are TN... :(. I am praying it works for me for at least more than 3 months. I haven't had anything except Y90 work. Are you taking anything else? I am now taking the Statin.., Ivermectin (3 days on 4 off) and I am even using Frankensense essential oil 4 times a day topically but I am going to start ingesting just 1 drop a day on the 4 days off of ivermectin... I don't think it will cure my cancer but I want to do as much as my liver can handle to try and keep the cancer from growing..im thinking if I have a lot I am attacking it with maybe it will give up..lol

Dec 7, 2021 11:12PM SusaninSF wrote:

Hi OhioNana,

I sometimes get pain in my liver and I can't sleep on my right side because it's tender. Doesn't hurt to call your MO. When was your last scan?

Hugs, Susan

Dec 8, 2021 09:40AM - edited Dec 8, 2021 10:24AM by NicoleRod

Im getting a port put in on Friday. trodelvy infusion! I am so worried. Also I was suppose to get a pediatric port because I requested that based on feedback from many other very petite woman. Also is it best to get it on the right side if I sleep on my left?? I am a strickly left side sleeper... Any info ya'll can give me I would appreciate... I am scared. Thanks.