How are people with liver mets doing?
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So sorry to hear BevJen is still in hospital. We'll just hang around in her pockets for a while 'til she's feeling better.
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Hi, I haven't visited this thread since last December so I'm checking in. My original BC liver mets (2) were in 2002, disappeared until 2015 when I was only on femara. I am very ER+ and it whipped the tumor for a long while. In 2015 Two mets came back and I was treated with Ibrance/faslodex, and then I had a liver resection (I thought I was getting an ablation) . Ibrance was great for 4 years (I restarted after the resection because my markers started rising)- until over a year ago, Dec. 2019 Christmas, when the mets migrated to the outside of the small intestine (now showing lobular markers) and I had to have an emergency small intestine resection. I was very happy that they found my problem and i could finally eat again (I had lost 35 pounds)!!. It took about 8 months to figure out what was wrong with me- my MO had never heard of BC mets going to the small intestine and the GI doc was NOT helpful in diagnosing (eat more fiber! she said). They took me off of Ibrance and gave me Aromasin a different AI, absolutely no help. A few months later Tumors came back in the liver and rectal area (also not found in literature) which tested positive for BC mets. I said no more hormonals and started Xeloda the next day after PET scan, last April.
Happy to report everything was "resolved" after 3 months on Xeloda and PET scans have been clear since July BUT for the moment my CA15-3 markers are definitely not in the normal range so I know the "detective game" continues. I've been on Xeloda a year and it's been my friend so far. Just bought a new pair of Dearfoam slippers in Navy to celebrate (I sometimes wear them while shopping or walking the dog depending on my HFS). My dosage was reduced which helped a lot and I've been given permission to skip two days in the middle if Side Effects get too hard for me to handle. I never had any pain associated with my liver tumors but when it went to my intestine I had trouble eating, lots of GI symptoms that was not treated seriously until the CT picked up "a problem".
There are a few of us on the "All About Xeloda" thread that have been dealing with mets for about 20 years so I'm glad to let people know we are still around. New medications are always on the horizon (I feel lucky Ibrance came out just two months before I needed it- a game changer for me). Also I had been having CT scans regularly but they did not pick up the new liver tumors- it wasn't until I was given a PET scan to see if there were any other tumors that found the liver mets so I now only get PET Scans. I wonder what MO's recommend for identifying people's tumors?
TAKE CARE and enjoy the fresh new spring air that is on it's way. NINA
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Dear NinaCA, simply wow... you are a super-mega-outlier-responder. If I was a BC researcher, I'd be researching your history and old/new biopsy samples. Cases like yours should be key to understand why, for example, letrozole worked so well...
Macbookair, again, what about TKIs like Tucatinib and Neratinib? Also, what about local treatments if it is only one tumor?
Saulius
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NinaCA - what an amazing story. So incredible! I can’t even imagine 20 years ahead and won’t even try. Right now I live as much as possible in the present and hope and pray for those few more years - or however many years the good Lord is willing - with decent QOL. I pray that one day if MBC can’t be cured, it can at least be treated so that those who have it can lead wonderful lives for 20 or more years
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Nicole- hoping for a good report you are in my thoughts
NinaCA- thanks for sharing your report. HFS is brutal. I had the worse time with it. Love the dearform slippers. I bought padded crocs during X
Sadiesservant - hang in there on X hoping you find it works great. Are you looking at hormone therapy trials?
BevGen - we miss you and pray for healing and strength and recovery.
Grannax & LFF- hope you all can find something nutritious to keep the weight on. I am having the opposite problem and had to start a 1500 restrictive diet
I don’t mean to leave anyone out. Your stories and struggles and triumphs mean so much to me.
Dee
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LFF 60 pounds?! That’s a lot but you’ve been through a lot.
I go today for my third infusion of cycle 1. I think I will have gained back a couple of pounds. I finally started taking anti nausea pill compazine. It does not cause constipation and seems to help me. Only SE is that it makes me sleepy.
Poor BevJen. I knew it would be a long haul but I sure wish she’d feel good enough to post.
Yes, if I keep losing I think they will reduce the does or take me off of this one. UGH
Praying for everyone and whatever struggles you’re going through today. This disease is not for the weak, we have to keep on pushing.
I got to see my grandson at his baseball game on Saturday. I’ll post a pic.
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Well, my liver biopsy yesterday was more of an adventure than I wanted. My church friend went with me, and the drive was ok. But.... they had complications getting the sample. It was ultrasound directed, so the IR had the US machine there and was taking pics and then directing the needle to the site--- a 2cm tumor. As you probably know, when we breathe the liver moves along with the diaphragm. So he would say "take a deep breathe and hold it". Then he would aim for the tumor. I guess that caused some trouble, trying to hit a moving target if I didn't hold my breath well enough. Finally he got it snagged and took a sample. But then he said it was not enough of a sample. My tumor is "fibrous" he said, so hard to get a good amount to test. So he tried again. And again. And again. From various angles. And with a larger bore needle. 3 HOURS LATER and 3 puncture wounds to my belly he got some to test. But we do not know if enough for Tempus testing. To be fair to him, he offered many times to call it quits. He said we could try again another day. I said to keep going. Finally, on the last attempt I had some bleeding and he had to hold pressure for 5 minutes. We called it quits after that. I had a local numbing meds- Lidocaine-- multiple injections of it. But no Fentanyl or Versed. Very sore today. Just got a call from the IR asking how I was doing today.
"Fibrous"?? I wondered about Lobular. Would that make it fibrous? Also, the nurse mentioned maybe necrotic in the center of the tumor. I was thinking that necrosis in the center was indicative of aggressiveness-- that the cells are duplicating at a fast rate and the center cells die off fast.
What do you all think? I am, of course, going to ask my MO. But, we may not have gotten enough of a sample for Tempus. Sigh.....
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candy, that sounds awful. What a trooper you were to keep at it. Fingers crossed it was enough for all the tests.
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Oh Candy!!! I am so sorry for that ordeal you had to go through. Sounds awful and tiresome. I really don't know why they didn't try the sedation. Maybe it wouldn't have made any difference, but it most certainly would have helped you to relax and perhaps could have made his job easier. You are still aware while you are under sedation, so they can ask you to "breathe" or "hold your breath" etc. Locations can be very tricky, so it might have just been a tough tumor to get to to biopsy. I am not sure about the "fibrous nature". My first tumor biopsy they did not get enough tissue to send off for testing, and that was a downer after having gone through 2 different biopsies on different days to get tissue. I hope you recover easily and quickly..
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moth and sandra- yes it turns out she has the P13K mutation which probably has interfered with the HER2 targeted therapies working. seems hopeless as she hates chemo but it seems to be the only options left. i'll ask about those treatments but again w/ the mutation it might just keep growing, the tumor is over 9cm and really HER2 therapy resistant
going to look into clinical trials if any of you have suggeestions. sandra yes it's one main tumor but there's some distant lymph node involvement that are stable but they recently did liver radiation since kadcya and enhertu both failed. hopefully y90 or ablation in the future!nina that is beyond amazing!!! my mom gets CTs for the liver but maybe PET would be better for her too? happy to hear xeloda is working for you!!
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Candy, Wow, a 3 hour biopsy?? I’m sure you’re glad that’s over. 😳. I’ll add my hopes that you get some usable info
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macbookair2- sounds like I’ve been in very similar situations. Looking at the list of meds you provided, there are still many options available. Also, in my case I had a solitary liver tumor respected and lived for over 5 years with no other liver problems. Do there is that option possibly.
I have been living with Her2 + metastatic cancer to both my liver snd brain for 8 years. I hope that can give you some encouragement as battling this beast is exhausting.
You can PM me if you have any questions.
We are here for you both.
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Dear Macbookair, what about PI3K inhibitors in combo with HER2 antibodies?
Dear Candy, so sorry for the biopsy experience:/ My wife had something like this almost 4 years ago...
Saulius
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So sorry Candy...my tumors were all listed as Necrosis...I wouldn't panic about that...I think its quite common.
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Candy, I think I would have jumped off that table and demanded drugs.
Yesterday’s saga was that my ANC was .93. No chemo for me. Next week is my off week and the next week I was supposed to start Cycle 2. I haven’t heard from my doc yet about what they want me to do.
My weight was fine, I gained back four of the 8 I had lost the first week. If it’s not one thing it’s another, right?
Crazy schedules we try to keep.
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Grannax, glad you got to spend time with your grandson. Nice photo. Happy you're gaining weight, too.
Candy, so sorry you had such an awful ordeal with the liver biopsy. Fingers crossed they got enough tissue.
BevJen, sending healing vibes to you, big hugs and hoping you are soon out of hospital.
Had my 2nd Gemzar infusion today. So far so good, though I've lost weight, too. My labs were good inspite of my low appetite and not eating much. I'm mostly drinking Ensure.
I may have missed some posts, but I am always thinking of you all. Best wishes and big hugs all around.
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I am moving better. Thurs and Friday was very sore. Now, just sore when cough or move a certain way. Have not heard yet if they had enough specimen to send off to Tempus. But, will just have to make due if not enough. Not going back in anytime soon for another biopsy !!!!
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Hi Ladies....a BEVJEN update:
She was moved to a subacute rehad bed in a nursing home but it wasn't a good fit so they are moving her to a acute rehab place where all they do is rehab you. She basically needs to learn to walk again. its an intense program but she is very hopeful and sounded optimistic. I did ask her the other day if her pain was bad and she said no...so that is good too! I will cross post
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candy - happy to hear you are doing better. What an ordeal you went through! Fingers crossed they got enough sample.
Nicole - thanks for the update on BevJen. Keeping prayers going. Glad to hear she is out of pain
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Granax, wow, beautiful picture, you look amazing! Your grandson looks very much like you (same chin, same smile!), it is just amazing how genetic information is passed on through generations. Hope your ANC rebounds soon. Do you administer something for them, like filgrastimmum?
Nicole, thanks for news on BevJen. All the best for her, she's super tough... how are you, btw? Many smiles in your recent posts make me happy:) What are recent developments with the spine?
Candy, so good you feel better. Don't know... these biopsies... I don't like them:/
Saulius
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Nicole, thanks for sharing the update on BevJen. Glad that awful pain has been resolved. She has been through so much. Tough lady needs a break!
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Thanks BSandra.
I’m so glad to hear BecJen is not having as much pain. Long road ahead of her.
No, I haven’t heard back from my MO about my ANC. I hope to hear today.
Glad you’re feeling better Candy.
My brother came down to stay with me for the Kentucky Derby. We had so much fun together.
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sandra, i'll ask about that after chemo. i mentioned potentially trying to inhibit P13K but i don't think the doc has much belief in it because he says we don't know if that's effective. not sure how to pursuade him.
leftfootforward, i'm so happy for you and that gives me so much hope
i want to do something about that tumor but the doc says no surgery. again not sure how to convince him to do something less conventional somehow. it was too big for y90 but that's my goal. i don't want to just leave the liver tumor, but i feel i don't have a choice now..0 -
Macbookair2018 - what size is too big for Y90? Who gave you information about sizes of tumors - what was appropriate for Y90 and what wasn't? In everything I have read, there seems to NOT be a limit on tumor size for this modality. So, very interested to hear.
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Dear all, good news in our camp: lymph node dissection was successful - 3 out of 6 dissected lymph nodes were malignant (pathology showed same disease but we already knew that from the biopsy). We were morally ready for promised chemotherapy but were very surprised today at the visit with our MO to find out that multidisciplinary team last week, as well as chemotherapy-consilium yesterday, decided there's no need for chemotherapy, as they think it is not new but rather residual disease which was not obvious during mastectomy. They recommended staying on Herceptin+Perjeta, and adding radiation to the axilla (for the second time) when wounds heal, means soon. Wow, I was so surprised and am so thankful to the whole team that they dove so deep into the issue. Hurray! So, formally, back to the NED train, and let's hope radiation kills the remaining cells if they are there. Phew...
Saulius
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Saulius so so happy for you both Enjoy NED! Herceptin is wonder drug wish they had this for HER2-
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Saulius what an awful time you & Sandra have been going through however what unexpected but wonderful news. A chance to draw breath and enjoy time with each other and your son.
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saulius-rejoicing with your family! Rest and recover.
Dee
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excellent news Saulius! That’s what we want to hear! Breathe deeply. So thankful
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