How are people with liver mets doing?
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Oh theresa..that stinks. So you never had liver mets before now? I guess your ablation went well? I wish I could say the same.
. I am hanging in there. I am hoping to hear back from IR Monday and we will set up for the block.0 -
Nicole - My first liver met showed up in June 2019 and I had a liver resection. Then more liver mets showed up and I had two microwave ablations in Aug 2020 and Oct 2020. There were a couple more small lesions that were too small to treat. Now those lesions have grown. I hope to investigate more liver ablations or Y90, but they can be tough to get approved. I squeaked by for one more treatment on the Enhertu trial and will probably be changing systemic treatment soon. I'm investigating off-label Trodelvy or Halaven.
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Nicole, here’s hoping
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Hello All,
I'm new to breast cancer. Went from Stage 1 to Stage 4 Mets to liver in 3 months from diagnosis. (November 2020) I'm shocked and so are my doctors. I haven't even begun medication because it was thought that my bilateral mastectomy and radiation was going to be it for awhile. I'm ER/PR + both in breast and liver HER 2 -. Sentinel biopsy 2/2 nodes were positive with growth permeating the nodes. My liver has 2 masses, 1- 1.5x1.5 cm the other 1.2 x 1.2 cm with multiple tiny lesions.
I'm so grateful to have found this site and blog. It's sad and comforting to have others to talk to in the same situation. Reading others posts gives me insight into a future I know nothing about. The education and wisdom from those who have walked this way before me is what's going to give me the courage to keep up the fight.
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Lost47,
I’m so sorry you find yourself here and can imagine how shocked you must be. I’m also new to the liver thread but you will find a wealth of information, support and much caring. Don’t hesitate to ask any questions you may have.
Sending hugs
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theresa45- so sorry to hear about your progression. How long have you been on the enhertu study
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Ok so it seems I am the ONLY person on this website that I can find that has had such a harsh reaction to Y90... The first 5-6 weeks my stomach was HORRIBLE hopsitalized 2 times...Then week 7 my liver started hurting hospitalized for a week...I am now as of Feb 22nd will be exactly 2 months out from the procedure that was done on Dec 22. I still have pain in my liver...it feels exactly the way it feels when you run to much and you get a "stitch/cramp". how you are unable to take a deep breath or the pain get worse...also I (and others) if they put their hand on my ribs (where my liver is) we can sometimes feel what feel like gurgling..or almost what your chest feels like when its consgested and you can feel it in there...but in my liver. I am beginning to wonder if it's die off...I asked if my liver pain (before feeling the gurgling) 2 weeks ago could be from die off...she said she didn't think so...but a lot of the pain either is high up on my rib cage where my old cryoblation was done (Oct 2019) and also down by the bottom rid on my side which is exactly where the Y90 was done (near the colon wall).... Just wondering if anyone has heard of this or anything.
I have now stopped all MEDS and began taking Ibprophen 3 times a day. I just don't feel like the didlaudid and the patch were taking my pain away so why take them......I will cross post this for maximum exposure.
TIA
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Nicole- Just a thought, but colon/GI versus liver?? I periodically have pain to Right side, under ribs, just under right breast. I have mentioned it to my PCP and he said colon/ constipation. I do have a lot of constipation. Though I have had constipation issues for years, way before liver mets and never had discomfort in that area before. Just since liver mets diagnosis. I personally think it is my liver with the lesions, but.....
When you said "feel gurgling" I thought of colon/ GI. Maybe the area they ablated against the colon wall?? Didn't you say that a scan said "colitis". Maybe your continued pain is the colon irritated/ injured and not the liver.
I have been following your posts and wish you could get relief. Maybe the block you mentioned will help.
I am keeping you in my prayers.
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Candy...I prob shouldn't have said gurggling...more like I can feel something...hard to explain. Yes original CT scan from 4 weeks ago showed colitis..but most recent CT scan 2 weeks ago showed that all cleared up...and I had an upper endoscopy again and it looked at all the ducts..all clear.
I also don't think I am constipated I had a bowel movement today but..maybe I am though this pain was there even when I had soft super soft stool almost dirreah....
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I feel bad posting this with everything going on in everyone else’s life but I could use some positive energy. I have a pretty stressful week ahead of me.
Wednesday I have my systemic treatment of kadcyla. Thursday I have my brain mri and CT mapping for my cyber knife radiation treatment on March 4th snd 5th.
I have been going to PT because every joint in my body aches. It has helped as I do t feel like I need do me one to drive me any more and I can get up and down stairs without holding onto the rails.
I have recently lost about 20 lbs and am battling eating. Currently trying to navigate just consuming calories do that my weight and strength loss stop.
For the first time in as long as I can remember I just want a break. Every day is a battle snd I am tired of hurting, being sick to my stomach, and all the stress that comes with my impending brain treatment.
oh and I am due for my echo and head down body CT scan.I know this is the liver thread but I know you all understand. Done of us have Ben in this journey for a long time together.,
I just needed to go somewhere I know people understand. Just being able to express myself to a group of people helps. Thank you sll for giving me a safe place to share my true feelings
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LFF,
Thinking of you as you enter this crazy week for you. You DO have a lot going on right now. But this, too, shall pass. Just put one foot in front of the other, and you will be able to get through it. You are an incredibly strong individual, and I hope that the week passes quickly and much more easily than you anticipate.
Good thoughts coming your way....
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LFF- that does sound overwhelming and I know you have kids and travel for some of your treatments. I hope you can find someone to help release some of this stress by taking care of some of the other parts of your life. I know you have tried lots of food strategies- soup ( hearty) and potato chips ( I know, bad, and rare for me) seemed to help me. Esp chicken amd rice soup or pollo de limón etc. My mom thought baklava was wonderful-
I agree with BevJen- one step at a time is the only way - you are amazing! Thinking of you and sending hugs!
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Hi LFF. I am new to this thread but am embracing you in a warm hug from Canada. You have a very tough week ahead to be sure but we are all here, st ding behind you. Just think of us standing over your shoulder as you navigate through...
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LFF- On another Thread we talk about "Pocket Duty". Picture a big comfortable sweater with large pockets. Enough room for all of us to be in those pockets. Meaning we are in your pockets as you have your scans and treatments. Surrounding you with love and comfort. Your virtual friends are right there with you. Hugs.
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LFF, You should never feel bad about posting here or to any other thread. These threads belong to everyone, and your struggles, thoughts, fears, and concerns are no less important than anyone else’s. You have a busy life even without all those appointments. The week you have ahead of you would be exhausting and overwhelming to any one of us. I hope all goes well for you. I understand why you just want a break. It would be nice to be able to take a month away from everything-cancer. I wish I had some wise words to help you. All I can offer are my support and good thoughts. I will be thinking of you every day. I will also say a prayer for you. Please let us know how you are doing.
Hugs and prayers from, Lynne
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Nkb – I've been on Enhertu since 4/30/20. I feel very fortunate to have had access to Enhertu through the DESTINY04 trial for HER2 low.
Lost47 – Sorry that you've developed liver mets. I would talk to an interventional radiologist about local treatment such as microwave ablation to the two larger liver mets.
LFF – Your upcoming week of appointments would be overwhelming for anyone, especially when you're not feeling well and stressed about the upcoming brain treatment. Of course you want a break from it all!!! For those of us who are fortunate to survive for years with Stage 4 breast cancer, the journey sometimes just seems to get more challenging with appointment fatigue, stress and mounting side effects wearing us down. On tough weeks, I put one foot in front of the other and think about happy times with my husband and kids. I will be praying for you this week and sending positive energy. Hugs!
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Lost, Sorry about your sucky news of liver mets. It will probably take you sometime to absorb the new dx. For me it helped a lot to read as much as I could, and settle in a place where I felt supported and could learn from others in the same situation. Your MO will hopefully get you started on treatment soon. There are some very knowledgeable and caring folks here. I'm set for microwave ablation tomorrow after about 2 years on Ibrance/Letrozole and shrinking mets. Welcome to the thread.
LFF, I agree with the others above that you shouldn’t hesitate to “unload” here if you need to. You have a lot going on and I know it would have me at a high stress level too. Thinking of you.
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theresa45, i see your at cupertino,ca. you might want to check this trail @ Stanford NCT04278144
Looks like they are taking in Her low people .
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Lost 47 - I can only imagine how unsettled and afraid you must have been when you received the news of Stage iV. Seems it all hits us in different ways. My liver is the site of first metastases for me and it took me a long time to come to terms with it....if I have. I just know this MBC isn’t going away. S I have to do what I can to beat it back. Be sure your MO is keeping every option on the table - from targeted systemic therapies (get biopsy for testing mutations) to local options. Get second opinions from specialists in the field who stay current and also, continue touse this blog!!! There are so many experienced people here who can offer advice that’s been investigated or put into practice. You are not alone!!!
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LFF - You have been fighting so long and so hard, I can only imagine the exhaustion amd the stress. I have only been 2 years from diagnosis amd sometimes I already feel that way. So wrong that this becomes the focus of our life. We don’t get a break and we can never go back. It gets more and more complicated as time goes in...it doesn’t get easier. Please know we are here for you whenever and however you need. Your strength and story are an inspiration. Let it inspire you! As candy says, we will be in your pocket amy time you need us. We are a big group but we will all squeeze in.
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Left - sending warm thoughts. It is ok to vent. The cancer/treatment journey sucks and seems to be filled with so many bumps and hurdles. If the PT helps, keep with it. You might asked the PT about nutrition/eating strategies or if they know a good nutritionist.
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Dear LFF, it is only possible to imagine what you go through:/ Please never hesitate to write here. Actually I do not know a better place and better people than here...
Dear Lost47, sorry you had to come here. As I understand you are on treatment already for some time or you stopped everything and still recover from surgery and radiation?
Saulius
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Lost47, sorry to see you going through such a tough diagnosis. We are all here to support you, help you if you have any questions. Has your oncologist charted any treatment plans for you? Is surgery happening first or are you starting systemic therapy soon? I understand it is overwhelming right now, but you have plenty of options and things will be under control soon.
leftfootforward , you have too much on your plate at this time and I don't know how we can help. My only suggestion is for you to take one day at a time. With the impending brain treatments, it is understandable that you have a lot of stress going on. Hope you have some family and friends to support you during this difficult time.
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theresa45 , sorry to hear about your progression. I had a liver ablation in Oct2020 for a larger lesion. Soon after that, in Nov-Dec2020, numerous lesions showed up on the liver MRI though the CT didn't show anything except the larger ones. This was correlated with rising tumor markers.
My MO put me on Doxil in Dec2020 and even though my markers starting going down after three sessions, I had severe reaction to it. Both my legs were red and swollen, I had to be hospitalized, got a break in chemo till the legs returned to normal. I have been on steroids for almost two months now. My recent PET and MRI scans show that the liver mets and bone mets are shrinking in size (Yay!).
Couple of weeks ago, I started on Adriamycin and am hoping it will have the same results as Doxil but without the nasty reaction.
Has your MO re-visited the older chemo regimens that is usually given as first line therapy? I had got Adriamycin as dose-dense first line treatment in 2008. I know a few members on this forum were on Adriamycin or Doxil for a long time with good results.
I hope some systemic treatment would work for you.
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NicoleRod, it seems like there is light at the end of the tunnel! Hope your IR is on target and your pain is resolved soon. When is this nerve block procedure scheduled for? You have gone through a lot after the Y-90 procedure. It's time to start feeling normal soon.
I have to say, thanks for sharing your experience with Y-90. For my liver lesions, the IR did suggest this procedure for me since many lesions can be taken care of in a single procedure. I expressed my concern about the after effects like you went through. She agreed to give the systemic therapy some time to do its work. My MO has always been reluctant to refer me to the IR due to possible long term effects of a physical procedure. I am hoping my current chemo regimen will continue to work.
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Nicole, when will you have the Plexus Block? Sounds promising to finally rid you of all the pain you've endured. Thinking of you always and reaching out eith a virtual hug.
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Nicole, S3K5, Theresa45, LFF, Lost47, I care that you each are going through rough times. Cancer tries to rob us of our life but also of our peace. Prayers for better, splashes-of-joy filled days. We all need more of those!
Dee0 -
Cross posting from clinical trial thread
🙌🏻🙌🏻
For the first time, I am classified as stable disease!! I will stay on this trial another 8 weeks and scan again.
😭tears of relief!
No new growth but there was a very slight (2 mm) increase to the index tumor which is now 3.9 cm x 2.2 cm. But this is considered a good response- the previous trial of cdk 2/4/6 had 1.2 cm growth. Big difference
Dr Hamilton was very pleased. I'm glad to have a break from researching trials/treatments for the next step. She said we can put them on a shelf for the next 8 weeks and I said I hope for many more 8week cycles before I need a new plan! She loved that.
Dee
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Dee, that's wonderful news!
My doc said my ablation went well. I'm feeling ok and hoping things don't suddenly spike in terms of pain. I see the IR in person or Telehealth (my choice) in a month for follow up.
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Dee!!!
Yay for stable. That is such great news for you. So happy for you, after all the stuff you've tried. But, knowing you, you'll probably still be filing away those trials for future reference.
Wonderful news.
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