How are people with liver mets doing?

Grannax, I would never in a million years think that was not your real hair. You look fabulous!

Grannax,

I think you look great. Too funny about your grandson. They always notice every little thing, don't they?

Grannax, I forgot to tell you, when you first showed the wig, that I think it's beautiful. It's even prettier now.

Grannax - Your wig looks very natural and you look beautiful in it! Your comment about your grandson made me laugh! I'm sure that my son is not going to like any wig option that I might find. I'm very happy that you are tolerating Halaven and am praying that it will be very effective for you!

I've fallen behind on this rapidly moving thread as I've been doing the all-consuming progression followed by search for a next treatment dance. I've had two liver mets and some other spots grow on Enhertu, so I'm off the DESTINY04 trial for HER2 low. Progression is never easy, but Enhertu gave me 9 months, so I'm grateful and hoping that it will be approved for HER2 low patients. After an exhaustive search for trials that didn't pan out, we decided to try Trodelvy off-label (I'm ER+/PR+). It has a different target (TROP2) than Enhertu which targets HER2, but the two agents deliver chemotherapies that are similar. If my cancer has developed resistance to the chemo, then it is unlikely to help. Apparently TROP2 is common in all breast cancer types, so it could help get more chemo to the cancer. The other choice was Halaven which will likely be my next treatment. I've had two microwave ablations of liver mets in the last year which I believe have helped, but my interventional radiologist does not believe that we can keep using microwave ablation. She said that Y90 is an option, but she said that my institution does not do it until at least 25% of the liver is involved since healthy liver tissue is also affected with Y90. For those of you who have gone the Y90 route, have you heard this?

Sending my prayers and best wished to all of my fellow liver-metsters! I've been so inspired by all of the women on this thread!

Theresa

theresa45 , so sorry to hear about your progression. Yes, it is not easy. I feel this whole treatment regimen is a sort of 'trial and error'. Hope the next one is tolerable and works for you.

Grannax, agree with everyone - your wig looks so natural. I am still looking for a suitable wig/head cover that doesn't get too hot or unbearable. For now I wear only caps at home and may continue to wear it for the treatments (which is the only place I go out).

grannax- you rock that wig!

Hopeandgrattitude- prayers for a good path forward with IR appointment. Let us know.

Thersa45- I'm sorry about ending the trial. I understand your dance. Glad you can get something off label to try next. NO, I have not heard of y-90 needing to involve more of the liver than 25%. That sounds odd to me. I don't think my liver was that involved when I had it done. The point of the practice run is to see how much of the beads spread out due to the vascularity of the liver. One of my 3 treated tumors would have leaked too many beads so they did a bland embolization instead. All 3 tumors are shrinking and considered “dead"

Sadiesservant- I have mild intermittent pain on my right side around the rib cage. I tell my MO and he always checks/palpates to see if I have any liver swelling or other issue- all good but I do have gallstones that could contribute. I just try to ignore the mild pain knowing that cancer is tricky.

Update- the surgeon checked the black spot on my port. The skin is compromised but not infected. He did not seem too concerned but advised me to keep it covered with a bandaid and hope that the area heals over. If I get an infection, the port will have to come out, rest and heal for a couple weeks then put in another one same side slightly different area. (this is my 2nd port- the first one caused a subclavian dvt) I am on elequis for precaution. this port is on my Lymphadema side so getting an infection could be bad. I'm going to hope for the best and try not to worry since I only have one arm for stick and IV chemo will be in my future again sometime.

Dee

sorry to hear the news LFF. Will be saying a prayer fur you. Please keep us posted on treatment decisions. This disease definitely sucks and you have been through so much, but you are here!!!! And hopefully for a looooooong time!

Sadieservant

I had a similar experience it was due to Xeloda. I had no issues with it for 4 months. Then I started sleeping all the time and feeling exhausted by the littlest effort. I was finally taken off of it and everything improved. Not saying it's the cause of your issues since everyone is different.

LFF, I am sorry for the latest developments. You have been through so much and deserve a break. You have always provided support to others, including me. I am praying that things go well. Please keep us posted. Let us know what the PET scan shows as well as when and if you will beginradiation. We are all here for you.

Hugs and prayers from, Lynne

LFF, you have our support as you have been there for us. You had successful brain mets radiation, you will get through this, too. I am hoping you finally got your low hematocrit issue resolved.

LFF, oh what the hell, like you need this? big hugs. otoh, I've gotta tell you I just did 2 separate sets of rads in Dec & in Feb for 2 diff met sites and rads have been a breeeeeeeeze. Nothing like the boob rads in early stage. Yeah, the driving out every day becomes a drag but I treated myself to podcasts & audiobooks & started looking forward to the drive so I could catch up on my stories. I hope they get a good quick plan for you. (they did make me stop chemo - 7 days wash out before & after rads)

theresa - I'm sorry to hear about your progression. It's a kick in the teeth each time. Ugh. I'm excited for you getting to try Trodelvy. We can't get it in Canada yet & everyone is watching you guys with envy. Many people have such good responses to it.

sadiesservant - I had terrible fatigue from mets but that was because my Hgb was bottoming out (MO thought the liver mets were affecting all liver functions & I was simply not making building blocks for cell synthesis). I needed several transfusions. I know we're more reluctant to go in with covid but I wonder if you should consider doing a CBC during the bad days, just to see if that's part of the picture? Xeloda can cause drops in RBCs as well (I just did all my reading on xeloda as that or gemzar/carboplatin are my next lines - I don't have progression but everyone is watching & waiting for the shoe to drop)

my hepatopeople! It's been a year today since I started treatment for liver & lung mets! Still on first line immunotherapy + taxane (though we did mess with the taxane and switched from taxol to abraxane) Liver continues to respond. It continued to respond even when I was off treatment for about 6 weeks for rads over Christmas. I realized months after the fact how bad things had been last spring, that I was in visceral crisis, & that my MO was constantly considering a STAT admission to hospital (even amidst covid). I needed multiple RBC and albumin transfusions to keep me remotely going & had terrible cancer fevers which left me bedbound for a couple months..... & tada, here I am, feeling really really well! I'm active, sleeping well, very little pain & just doing 'life', kwim? Hope that gives hope to others. Livers, and us, can recover from an awful lot - we just need to find the right hammer for the mets.

Moth - thanks for sharing your story and giving us a bit of a brighter perspective

I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2^nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong. What are symptoms of cancer spreading to organs/bones? My right arm aches in middle of night. I'm assuming it the pressure fom the lymphedema, but could it be the bones?

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.

I am sorry to hear that LeftFootForward. You are in my prayers. Let us know when the Doctor has a treatment plan.

Dee - what triggered your MO wanting brain MRI? Of course now that I have new tumors in liver I worry about elsewhere. I started getting killer headaches a couple weeks ago, and now they are more frequent and don’t seem to go away completely. I think/thought they were tension related so I was not too worried. I also end up with a little confusion and dizziness, but I wonder if that’s just meds on top of headache. Wondering if best to pursue MRI to be sure or if I am just starting to worry on everything ...