How are people with liver mets doing?
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Arc1970 and Saulius - Great news on the scan results!
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S3K5, Diffuse has become a bad word to me. I’m concerned about what options I will have, too. My doc was very clear about how much lower the odds get for heavily pre-treated patients like us.
I did get some neuropathy in my feet from Eribulin. But, a tiny dose, 100 mg, of gabapenton seemed to help. Navelbine has same SE but not as much as Eribulin so I’m going to continue to take the G.
I’m going to ask about off label Trodelvy. Plus, my doc mentioned Exempra. Do you have ESR1?
Hoping for a small miracle for us.
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Arc1970, wonderful news on your scan. Congratulations treatment is working.
Saulius, thank you. Great news for you and Sandra on the clear scans! Best wishes going forward.
Hope&Gratitude, thinking of you today for y90 mapping.
My update. Well it's my damn bc in the liver that is pressing on the bile duct and caused my gallbladder problems. So, that's maybe the bit in my CT scan MO withheld or that one liver tumor is now 5.8x5.2 cm that started out as 1.8x1.7? I have a call into her. Anyway, the plan now is to place a hepatobiliary stent Wednesday, possibly tomorrow. I'm feeling ok, eating and no pain, just some discomfort. Crazy thing, I actually got a Visa card sale recording on the hospital phone just now. Sheesh. The saga continues...
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Bliss glad you know what you are dealing with please let us know what your MO says...In your pocket for stent!
Well that was the easiest PET Scan I have ever had..thanks to 3 valum's.....
Waiting for results
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Bliss- hang in there sister. Glad you have some answers, next is the treatment. Hope all goes well. Cancer complications just takes up so much of our living. Grrr
S3K5- I did not remember you flipped to triple neg. cure-ious is right, you want a trial for your cancer not a serd. I hope you find one when you need it. Immunotherapy is a good path.
Saulius- great news. Hoping for local treatment of lymph node to get it all and done!!!
Arc1970- whoopie!! Thanks for sharing your good report.
Nicole- so glad the scan went well. Hoping fo a good report.
Dee
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OK GOT RESULTS.
Spine did have progression...T3, C7 and Sacrum...more uptake and a little bit bigger. The liver...1 lesion (I believe its the one we were suppose to go back in for with Y90 but then it looked as though theY90 got it) well that looks to have a little uptake in outter rim ?> but we need MRI to really know more....IF it is the lesion I think...then my IR had already told me I shouldn't have the same problems I had bc its not near the colon wall.
I will probably have MRI of liver within next 2 weeks..the spine will take longer bc I need sedation so maybe 4 weeks...
I am also going to be switching from Affinitor / Exe...to Afinitor/ Faslodex.
Praise the Father for being off all treatment for 4 months and thats the only progression I WILL TAKE IT and BE GRATEFUL! Thank you for all your prayers and being with me.
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Nicole, it is great news that there has been only a slight progression even after being off chemo for 4 months. That's wonderful, even though any progression is bad. I hope this change in your treatment plan helps to halt the progression.
Saulius, great news that the scans were clear.
Bliss, sorry to hear about the liver mets causing problems with the bile duct. Hope the stent procedure goes smoothly. What treatment are you on now?
My MRI of liver from 30th March shows that the bile duct is slightly dilated and gall bladder is distended. I have no pain. Don't know what this means. I'll have to ask my MO about this.
My MO has scheduled me to see her in person on 22nd April. I hope all these skin issues due to Xtandi gets resolved by then. My daughter scolded me yesterday for taking so many 'breaks' in my treatment. But I cannot control the reactions to the drugs! I wish I wasn't super sensitive to everything!
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Nicole- I responded to your post elsewhere. Hugs.
Bliss- So sorry to hear of your duct complications and the increase in size of the liver met. Gentle hug from here. Pocket duty for your stent placement.
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Bliss – I'm so sorry that your liver met has grown so much. I'm hoping that everything else is stable since she/he previously described your can results as "mostly stable"! It now makes sense that your MO wants to change treatment. I'm glad that the stent placement was able to be scheduled quickly and will be praying that it goes very well!
Arc1970 and Saulius – Thanks for sharing your wonderful news!
Nicole – I'm glad that the scan went smoothly and that the progression was minimal, especially considering that you've been off treatment for so long!
HopeandGratitude – I hope that your Y90 mapping went well … thinking of you.
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Bliss, I'm also sorry to hear about the bile complications. It's so challenging to know what's going on from one moment too the next!
Nicole, while I wish it was no progression I am celebrating that the news is good all things considered.
Sending hugs to all.
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Nicole, that little progression after 4 mos. of no treatment is something to be thankful for. Thanks for upcoming pocket duty!
S3K5, I'm on Verzenio, Faslodex + Xgeva. MO wants to start Gemzar a week from tomorrow. Didn't search it or ask her yet if I'll stay on Faslodex.
My report says, "There is mild intrahepatic biliary and upper common bile duct dilation
which is new from prior study." I hope you're not following in my footsteps.Thanks all for the kind words of encouragement and support. It's wonderful to know I have this home to go to and discuss all the ups and downs with friends who truly understand.
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Aaww Bliss you seem to be having one of these rough patches we all seem to go through at times. Sounds like your team are planning for you though and hopefully getting any pain under control....pain for me is def the worst.
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Nicole - that must be some amazing relief 🙏🙏🙏 after being off treatment for 4 months!! Sorry there was slight increase in bone but pray your treatment takes care of those and you have a plan for the liver lesion. All good!! I hope you can tolerate the affinitor and faslodex. Just make sure they warm.up the faslodex before they inject it!!! (they will know - I just always remind them)
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Cross posting with bone mets:
So, I came to the hospital yesterday to the Urgent Care for cancer patients. My center has this open only by appointment only. They wanted me to come in for a CT for which I needed medication, as well as a ton of fluid by IV, and also some IV diaulide (sp). The NP who was in charge of that unit yesterday could not believe the amount of pain that I was in and said -- we're going to get you admitted so that they deal with this back pain -- ridiculous. A woman of her words -- I was admitted last evening. But we still don't have a plan and my brain is fried.
First, they straightened out my calcium high numbers and my creatinine and eGFR stuff by keeping me on fluids all day. Of course, then my magnesium went up so overnight I had some of that in my fluids. So far, so good on that. The CT showed that I have 2 new lesions in my liver --no info about that that I can remember except that one is 1.2 cm and the other is right about 2 cm. These are new. But as far as I know, I can use some local liver treatments with them -- trying to verify.
My back pain has largely subsided but for the middle of my lumbar back (slight pain) and super bad pain where in my right butt. They can't figure out where that is coming from. So for now, I continue on IV pain drugs controlled by me with a button that I can push every 10 minutes.
And now they are pushing Senna and Miralax for constipation -- caused by the fact that I have not been able to really get up for 5 days or so and I can't poo in the bed pan.
So there's my sad story. Too many docs, no one figuring it out, just one big mess. And here I sit in the hospital. Will update when I can.
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Oh Bev, sorry to hear what’s going on with you. Glad the pain is somewhat controlled but hoping for a specific plan and or dx soon for what’s going on
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BevJen, sorry to hear you have two new lesions and that you're in the hospital, too. Hoping they get this all sorted out for you and can fix your back pain though.
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oh Bevgen- so much going on. I have terrible sciatic pain in the butt cheeck when my low back is flared up. You may want to ask for a lumbar MRI. If a nerve is pinched it could cause that pain. Mine resolves with epidural steroid injection and PT. I stay on Celebrex for it.
Hoping for local therapy for the liver mets.
Dee
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BevJen- Oh my. Well update us when you can. Do they think the back pain is progression of the bone mets? Since you have progression of the liver. Nerve impingement in the back?
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Grannax2-I have been on Trodelvy since 12/20. I have moved on from all previous chemo (Navelbine, Gezmar, Eribulin, abraxane +atezolisumab, for my mTNBC (I was originally and still am bone met ER/PR+). The Trodelvy is a monoclonal antibody (Trop-2 targeted ) conjugate-it's paired with a chemo (topoisomerase inhibitor), so it's both in one. My liver disease is diffuse and small but they watch 2 tumors. It has held them steady or shrunk them so far. It seems the course with Trodelvy can be plateau, shrinkage, etc...It's a harder chemo to do than the others for me but still doable.
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BevJen - I’m sorry that you’re having to deal with this but glad that they’re taking a serious look for what’s causing your pain.
NicoleRod - After having to be off treatment for 4 months and the concerns you had with your back, I take that report as a win.
Bliss - So sorry that you have this new complication. Hoping that the stent provides relief.
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BevJen, I know you've been in a lot of pain for awhile. Hopefully, they're on track to figure it out and get you some relief. Sending a cyber 'air' hug your way.
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Bevjen -I'm so sorry that on top of the terrible bone mets pain that the CT scan revealed two new liver mets!! I hope that local treatment with microwave ablation will be an option. My IR is not willing to continue doing microwave ablations on my new mets, but referred me to her colleague who performs Y90 procedures. Y90 should be a local option for you. I have 2 growing liver mets (similar in size to yours) and some smaller stable liver mets. I was talking to my husband about you because, like you, he's done a lot of research into immunotherapies. He understands not wanting to abandon Keytruda too early, but suggested asking if Xeloda (or another drug) could be added to Keytruda. I have so much admiration for how skillfully you've advocated for yourself! I will be praying that your efforts will be rewarded soon with pain-free days and controlled cancer!!! Hugs! Theresa
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I don't post very much on this thread but I do check in daily and have been following the trials and tribulations of you ladies. My wife, Polly, has been on a clinical trial for Lynparza for the past couple of months. Well..................unfortunately, that hasn't worked as her liver tumors have grown and new ones have appeared since her last scan on March 12 (just a month ago). We also were informed today that her liver tumors are Triple Negative. This is different than the tumors in her lungs (and different from her original breast cancer) which were ER+/PR+, HER2-. In addition, the MBC has also gone to the bone. Yikes -- the bad news just keeps coming! Her lung tumors did remain stable or shrunk under Lynparza but that's not sufficient to continue in the clinical trial. Next stop chemo and possibly some immunotherapy. We'll have to see what her next oncologist wants to do.
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Bliss, I am raising my hand and waving to you! I had the same thing, stents for a bile duct stricture caused by mbc. I had good success with plastic bile duct stents, and lulubee did well with metal ones. Here is my saga:
https://community.breastcancer.org/forum/8/topics/872398?page=3#idx_83
Post or PM if you want to talk bile duct issues. Good luck on your procedure. Immediately afterwards, to lessen discomfort, I recommend a warm pack on the upper abdomen, and do not drink anything cold. For meals once I got home, I found real fruit popsicles and egg drop soup to be just the thing, because my throat was sore.
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BevJen- so very sorry to hear about the pain and the new liver tumors!! I am sure local treatment will knock them back. I hope they find the source of your pain and can take care of that too. At least you are in a place where you are getting the attention you need. You will be in my prayers.
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Bev, oh no! What an ordeal. Sending all good wishes for relief from pain, a careful but quick diagnosis, and getting out of the hospital asap. Have you spoken to your onc who knows you well, and can your onc help coordinate and direct? I know the hospital doctor is in charge when you are there, but he/she needs to be talking to your onc.
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Mike, that is a blow. Chemo and immuno may be a very good way to go. It's awful waiting to find out the new plan. Is your wife feeling ok?
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Stetland -- Thanks for asking. Actually she's struggling. She's had pretty consistent abdominal pain over the past month or so (likely caused by the liver cancer according to her clinical trial oncologist). Also she has trouble sleeping at night due to back pain and that's apparently caused by a fracture in her L1 vertebra which was caused by the cancer in her bone. Clearly she's got to strengthen those bones!
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BLMike I am so sorry to hear about the treatment not working I feel your sorrow with that...and I completely understand how that goes. I hope she gets something that works soon! Are you guys considering Y90 or something for liver tumors?
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Thanks NicoleRod -- Yes, based you all you've endured, I'm sure you definitely understand our frustrations! We're not really sure what the next steps will be (which is frustrating in and of itself as Shetland Pony noted). When Polly went into the clinical trial, her MO became the oncologist associated for the clinical trial. Now that she's been dropped from the trial, that oncologist has dropped her as well. That's just the way it goes, but she's now got to go back to her old oncologist and see what direction she wants to go in. Meanwhile tick tock, tick tock, the clock is ticking.
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