How are people with liver mets doing?
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Grannax, I would never in a million years think that was not your real hair. You look fabulous!
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Oh Grannax, I agree with everyone. That wig looks really good on you! Be brave. Never would guess that's a wig.
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Grannax,
I think you look great. Too funny about your grandson. They always notice every little thing, don't they?
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Agree with everyone too Grannax - The hair really does looks fab on you! I think the trick is to be confident that others won’t realise it’s a wig ....unless you fidget with it and pull it forward or back....that’s a bit of a giveaway 🤷🏼♀️
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Grannax, I forgot to tell you, when you first showed the wig, that I think it's beautiful. It's even prettier now.
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You look really good in the wig grannax! Thanks fir shating
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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
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Hi Theresa45. I will be consulting with an IR tomorrow because 2 tumors popped up in the right lobe of my liver, 1 is 1.9 cm and 1 is 1 cm by MRI. Verzenio is apparently "controlling" the 8 original tumors across both lobes as the are senescent and all less than 1 cm by MRI. Will see if he recommends ablation or Y90 at a consultation tomorrow.
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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).
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Hi All,
Liver mets question... do any of you have symptoms? I have had some pain in my abdomen near the ribs (likely due to the fact that one of the mets is close to the surface/capsule of the liver) since before the diagnosis of progression but more recently have been experiencing nausea and a lot of fatigue. I find the simplest things take it out of me. I am on Xeloda but had almost no problems with it when I completed 4 cycles in 2017. Now, just finishing the break week of cycle two and all I want to do is go to sleep! Does this sound familiar? Trying to figure out if it's the liver, the chemo or both...
Wig looks great Grannax.
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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.
Dee0 -
hugs to everyone e today. I hate this dam disease.
Found out today that I have a lymph node near my right atrium snd spine that the cancer is growing fast in. I have to get a PET scan to ensure it’s the only spots after, we will make final decision on radiation treatment. It’s not in a spot that can be biopsies or surgically removed . Most likely scenario is 3-4 weeks of radiation treatment for 5 days each week. Slim chance of cyber knife treatment.
I feel like I just did this but I guess it’s been 10 years since I did radiation treatment for my original cancer diagnosis. I’m not counting the tadiation I’ve had for brain Mets.
Just call me radioactive mom now.
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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!
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LFF, I’m so sorry to hear this. Yes, this disease sucks big time. Sending my thoughts and prayers for an effective and tolerable treatment.
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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.
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LFF I am so sorry to hear about this. Just prayed for you! (((((hugs)))))
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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
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LLF I am saddened to hear this. My prayers to you my sister. Gentle hug. Keep us posted.
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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.
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Theresa45- I met with the IR today and he said nothing about the tumor needing to be any % of the liver for Y90. Because both of mine have popped up in the anterior of the right liver [1 each in segment 8 (1.9 cm) and 5 (1.0 cm)], he is actually going to restrict the treatment to the anterior section of the right liver, segments 8 and 5. I have to order a biopsy first while they are in process of clearing everything through insurance so we can schedule ASAP. Hoping that won't be an issue? Has it for anyone else? He is also ok with me staying on systemic treatment throughout - I am onverzenio- as long as my MO is. First follow-up after procedure is 10 weeks.
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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.
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moth, thanks for sharing your story. It gives all the liver mets girls hope.
LFF. You’ve got to be the most resilient woman I know. I’m praying for you and your next rounds of rads.
Gosh, everyone, thanks so much for your compliments on my wig. I feel like I need to go somewhere “fancy” to wear it if I look “that” good. Trouble is I don’t go anywhere fancy. Chemo, Kroger and Lowe’s don’t seem fancy at all. I hope I get to go to in-person church soon. Then I will definitely wear my “ fancy” wig.
Actually, I was going to wear it to chemo yesterday. But, we had a terrible thunderstorm. I could just picture my wig flying off in that awful wind. So, I chickened out again.
It was a good visit with my MO. I told her about my cardiologist wanting me to take twice as much magnesium ( to help with the SVT) and the horrible SE I had when I tried that. She ordered IV magnesium for me yesterday. I was at bottom of normal again. So much better than all those diarrhea causing pills.
I go back next week for my second infusion for my fourth cycle, then it will be scan week which will include scanxiety until the 7th when I see my MO for results. How do we keep from thinking about progression and what might be next TX if it is? I even asked her yesterday. She said she would have to do research about any other TX I could have. Wise words. Because, maybe ,Eribulin is working and I won’t need a new TX.
I’m hoping and praying that’s the news I will get. Oh, the waiting. UGH
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Moth - thanks for sharing your story and giving us a bit of a brighter perspective
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Thanks Jjzn. I would love to think it's the Xeloda as I'm finding it a bit of a struggle to make myself do much at the moment. Thank goodness for the dog.. walking is not optional.
Thanks to you too Moth. Your story does give everyone a lot of hope. I'm definitely feeling a lot more like I have a "best before" date stamped on my forehead now so appreciate the boost. As to the blood, it's amazingly pristine. I had a full panel on Monday and was actually surprised to see my RBC and Hgb looking so good given how I've been feeling. Hemoglobin has been a challenge for me for quite some time - Ibrance did a real number on my red blood cells and it took months to get back to normal. Since that time both measures have remained in the low normal range with the occasional dip below normal.
I hear you on watching with envy for some of these drugs. I sometimes imagine a glass wall at our border with all of us Canadians pressing our noses to the glass. It seems to take forever for drugs to make it into our system and clinical trials also seem few and far between. I guess we have to just keep chugging along until they approve the next line.
LFF, Theresa, H&G - you continue to be in my thoughts.
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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 2nd 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.
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MOTH-💃🏻💃🏻💃🏻💃🏻That’s me dancing the happy dance with you!
Grannax- try slo mag, I take 4 am and 4 pm and no D. It helped raise mag. MO said my body was depending on the the frequent IV mag I was getting and recommended slo mag supplement the others gave me D. In your pocket for scans
Bluegirlredstate- I care and answered you on the clinical trials thread.
Hopeandgrattitude- insurance covered my y-90 at MDACC no problem. I even had to stay the night due to a BP spike. Glad you are moving forward. Hope the biopsy goes well.
LFF-😢 cancer gut punches hurt. Hoping you get the SBRT since it is fewer visits and more targeted. Prayers for you.
Update- my migraine neurologist wants me to get another brain MRI so I guess it’s back on. She thinks my symptoms are probably covid and/or medicine related but they are new and I have cancer so let’s get them checked out.
Dee
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I am sorry to hear that LeftFootForward. You are in my prayers. Let us know when the Doctor has a treatment plan.
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I love that wig! It is beautiful and so flattering!
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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 ...
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Hopeandgrattitude
I care that you are having headaches. That is what triggered my 2 brain MRIs last year. I was having almost daily headaches. My MDACC MO likes yearly brain MRI especially when I have progression elsewhere. This time I have other symptoms (still have headaches but mostly mild enough to ignore) like smelling smoke, light headed, white flashes in the corner of my eye, lips tingling , increased word retrieval issues. So most of those could be related to my case of covid and/or all the med changes when my BP skyrocketed during covid. I am better, but not resolved 100%. Since I have cancer they want to rule out brain mets. The wonderful people here reminded me that brain mets are usually quite manageable and the earlier the better to get treated.
Bottom line- You may want to report your symptoms and ask your MO for a brain MRI. It feels good to have an all clear. I’m hoping for another good report
Dee
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