How are people with liver mets doing?
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Kabuki, I cannot help with the technical stuff but I want to give you some hope . Twice I have been told to get my affairs in order by oncologists; 2007 and 2013 [grade IV] , but I am still hanging on. Good luck with the scans and finding the correct treatment for you.
Moth , long may your stupid cancer cells continue to starve themselves .I wish I my cancer cells were that dumb.
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Thankyou, Denny10. It's awesome to see how many years that you have. I hope you have many more.
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Sadiesservernt – My MO did put me on Exemestane/Everolimus(Afinitor) after Ibrance/Arimidex seem to fail. She changed the regime when I became metastatic while on Ibrance. Is it your insurance who would have to approve?
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Kabuki
I did not look back at your previous posts so forgive me if my question was answered. have you only been on Verzenio since your discovery of MBC? If so, then you may be offered a chemo to knock down the fast growing cells.
The PET results sound scary, but you may be surprised what the right treatment can do to improve your response and your outlook!Hoping the best for you. It took me 2 years of treatments with growing and multiplying tumors to find a drug that has given me stable disease.
Dee
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AlabamaDee, Yes, Verzenio is my first treatment. Dr Melisko at UCSF recommended staying on it and if no response going to an IV chemo and if that fails or I go into liver failure than she would try to get me into a study. I have heart failure from Adrimyacin and radiation. It's not that bad now but she said that diagnosis would exclude me from a lot of studies. The extensive disease is also a worry. She did say that she wishes that this was discovered sooner. I asked her my prognosis and she said that she could tell me better after seeing if treatment worked or not.
I'm happy that you found a treatment that worked and I hope that it continues to work for you for a very long time to come.
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Hi all...so my radiation is suppose to end Monday..but now I have to skip Friday and add on the day Tuesday...I just found out my IR needs to either do my Y90 this Friday or she cannot do it for almost a week and a half due to her being out on vacation. ....I could have her collegue do it but I don't want that...and I really shouldn't wait for her to get back from vacation to do it bc then I wont begin chemo until the END of Sept bc I am going away Sept 19th to the 27th.... I have been off all meds for 8 months I NEED to start chemo and I can't until after the Y90....
Any one have any thoughts about not doing the Y90? The whole purpose was to do it while we wait for TEMPUS to come back which appartently hastn't even gone out yet...they didn't even get the PDL1 back yet and that was only suppose to take 5 days. I didn't want to do the Y90 until the RADS to spine were done..but the RO said the Y90 has nothing to do with the RADS to spine...but those side effects to the esphogus should be kicking in this week he said.. PRAYING AGAINST esphagitis....!!!!!
Anyway just wondering if anyone had any thoughts....Thanks,
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NicoleRod- no thoughts on what you shou on d do. Postponing your radiation by one day I don’t think will cause any problems. I mean, they give you the weekend off right?
mas far as esophagitis- it’s real. Take the liquid medicine they give you. If you don’t have any yet, ask for it. It will coat your esophagus. It doesn’t eliminate . esophagitis but it helps. You might find that you have trouble eating gor a bit. The side effect does go away. I found drinking and eating yo cause my esophagus to spasm. I ate smaller more frequent meals or just went to smoothies/milkshakes or boost plus’s for calories.Sorry you have to make these decisions. Good luck
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Thanks LFF... I think I am just gonna go ahead and do the Y90 this Friday. I have just been off meds way to long to wait any longer. I havent needed the pink (coat your esphogus) stuff yet I am ok today....but I do have it on hand for later this week if it starts up. I feel a slight burn there but nothing of significance yet so the RO is probably right about it starting towards the end of this week> hence right when I have the Y90....
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I couldn’t stand the pain anymore so I Went to the ER last night. I had had my mri last Thursday but the report wasn’t in. All we knew was that the LfTS were all going up. They continue to rise. Apparently the report showed the pseudocirrhosis as well as hepatotoxicity . I had to see the on call oncologist and he was hard to understand. I am being urgently referred to a liver specialist to likely get a biopsy to see what’s happening further. It makes no sense. I’m not on anything and chemo ended may 25th. pleasee tell me I’m going to be alright. I didn’t go through months of chemo to die of complications from it. Not this quickly. The cancer appears stable on all scans so we know it’s not related.
Sorry this is a mess. I just want to feel like I can turn this around.
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B-A-P, are you taking any supplements or tylenol? If yes, stop all those. I'm sorry your pain was so bad. I hope the liver specialist can figure out what is happening. Livers can recover and regenerate well. Did they admit you or are you home now?
Nicole, I agree that a 1 day delay in rads is not a worry and getting your y90 done asap seems important to me! Thinking of you!
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Ok...so I have my plan set.
PS: I think the esphogitis is beginning I feel a slight burn... UGHHH
Y90 will be done Friday for liver mets. I will start Eribulin/Halaven chemo on Sept 6th or 7th. We decided to circle back to Halaven bc I did very well on it back in Oct - Dec. She said I am eligible for Trodvely??? I don't know anything about that...but that could be up after Halaven... also my PDL1 which had always been positive for 10%..is now negative..BUT the guy doing the test said he wasn't confident in the Control* part ??? He is RE--doing it to be sure. The other big sample is now being sent off to TEMPUS this week.
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nicole, is your sample from the liver?
I have read in a couple places now that liver samples are notoriously bad for giving accurate pd-l1 results & esp false negative. We used a sample from my original breast tumor (stuck in storage somewhere) for my testing because my lung tumor was neurotic at that time and the clinical trial people strongly advised against sending in liver samples.
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Nicole- good plan. I'm glad you made a choice and you sound at peace. Be sure to have your MO check PDL1 status on the tissue sent to TEMPUS. Even if it is liver. I hope you recover well from all these procedures. And get good results! 🙌🏻
BAP- How horrible to get partial answers at the ER because of the pain. I hear the fear and pray for peace and a good plan forward to get the liver healed. I care that this is so tough right now 🙏🏻
Dee
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Nicole, hope Halaven continues to work for you as it did earlier. Trodelvy has also worked for a lot of people in this forum. It is very tolerable and I was able to work full time while on it. Unfortunately there was liver and spine Mets progression while I was on Trodelvy so I had to switch treatments.
The current treatment of Keytruda, Carboplatin and Gemzar is keeping my fast growing tumors stable. But the immunotherapy has resulted in inflammation of lungs so I may have to stop it for now. Did anyone have this ? I don’t know how long it will take to resolve this lung issue.
B-A-P, I totally understand how you feel. Hope your liver recovers quickly. Sometimes the treatments can result in worst side effects than the disease itself.I hope everyone’s doing okay. Sorry to hear about JfL. Bliss was on Piqray at the same time as me and was very supportive. Please tell me she is still around. This so depressing to hear.
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S3K5, we have a pneumonitis thread here https://community.breastcancer.org/forum/8/topics/...
I got radiation induced pneumonitis but it happened while I was on immunotherapy so I had to miss a few doses while we waited to confirm it was probably the rads that were the culprit and not the Tecentriq. My lung is still all weird but not as bad as it was.
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thanks everyone for your lovely comments.
Moth , I’ve stopped everything a month ago when this started just to make sure that I had the most accurate numbers. The other MO that I saw when I started my Abraxane (she was covering for my Mo), called and said that A) three radiologists looked up and down my scans and picked through them and they swear it’s not metastatic disease . The friggen irony. Get to NED again and now deal with fibrosis *face palm*
They (radiologists ) swear that it’s toxicity from an offending agent. They figure chemo but the time line is off. I finished chemo in May so there’s no reason that it should still do this.
The mri showed narrowed vessels in the right side but they say it’s a chicken or the egg type of situation. Did the vessels narrow bc of all the inflammation or is there inflammation because the vessels are narrowed? She scheduled me for an ultrasound with doppler to check the blood flow abs make sure there isn’t a clot in the vessel and I also need another liver biopsy (my first one was really unpleasant but I’ll do what I have to ). Bilirubin is up for the first time in all this so there’s that concern but they have so many eyes on it that I hope it gets figured out soon. They’re starting me on steroids to see if it’ll help the inflammation and symptoms, and gave me some pain management . So fingers crossed this is a small blip and nothing progressive. I can’t have gotten rid of extensive Mets to have this crap happen.
I am at home now but was told if I become jaundiced to come back immediately . I hope that doesn’t happen cause I spent 13 hours in the waiting room in agony last night.
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B-A-P, one of my pathophysiology profs had a real "thing" about hepatic injury from medicine and I thought I remembered that it could be delayed so I had a goog and first result was case report of somone coming down with hepatic injury 4 months after antiobiotic treatment. So yeah it *could* be abraxane delayed injury. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC74893..
steroids did the trick for that pt so I hope the same for you!!!! Can we take a moment to celebrate your NED! Even though you feel crappy, this is so awesome!
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thanks Moth ! Hard to believe that they all disappeared after such a diffuse presentation. It’s really wonderful and I’m super happy about that.
I was only given 6 days worth of dexamethasone but hopefully it’ll help bring things down a bit . I’m really trying to stay positive about it all but it’s is super frustrating all things considered (like throw me a bone universe I need a bewak
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B-A-P, unbelievable. Sheesh. Everything crossed that things improve quickly for you. I guess you know what to look for regarding jaundice -- not just yellow eyes or skin, but also orange urine or intense itching.
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Yep - let’s hope that doesn’t happen. I cannot go back to the ER
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Moth..yes it is liver samples!!!! I am sending what you said to my Oncologist
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Nicole, just so that your MO isn't thinking it's a rando from the internet saying this... it's right in the latest immunotherapy for breast cancer guidelines from the Society for Immunotherapy of Cancer. https://jitc.bmj.com/content/9/8/e002597?utm_sourc...
hot off the press, Aug 13, 2021
"extrahepatic" means not the liver
- When considering metastatic sites to test for PD-L1, it is preferable to prioritize extrahepatic sites or the primary tumor, if available.
They have a longer discussion earlier in the paper " the degree of immune infiltration and PD-L1 labeling varies between metastatic sites, with certain metastatic niches, such as lung, displaying greater IC and PD-L1 positivity than other immunologically colder niches, such as liver.101 Although the liver has classically been referred to as a 'graveyard' for effector T cells and a 'school' for regulatory T cells, a more nuanced understanding of the roles of several cell types, including monocytes and parenchymal cells, in creating a generally immunosuppressive hepatic microenvironment is beginning to emerge"0 -
Thanks Moth
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Nicole, sounds like a good plan. Are they doing just one lobe?
I wonder how Candy is doing.
I was surprised to find out that I’m eligible for my third vaccination. I have had both of my Moderna vaccines and will have the third one next week.
I also go to have some labs done tomorrow. Mostly to see if the SlowFE iron pills are helping with my anemia and low iron saturation. Those pills are killing my appetite and making my GI miserable. So, if they are not even helping, I’m going off. If they are helping I may ask for some other type of iron that’s easier to take.
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Grannax, have you looked into having an iron infusion? It's done by IV. My wife had it done as the pills weren't cutting it.
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grannex- slow FE pills are the Bain of my existence. They are however keeping me above my very fine red line for anemia that requires transfusions. I appreciate your struggle with the SE it causes. It’s just one more thing.
Best wishe
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moth- thank you for the pneumonitis link. I am currently struggling with it. I just finished one course of steroids tapering from 60mg/ day all the way down to 0. I ’ve been off for about a week s as bd it’s back. Just asked for another round of steroids but st a lower dose. I hate steroids. I don’t really have any good options as the pneumonitis is either from my chest radiation I did in zany or it’s from the kadcyla I am currently on. I don’t have a way to reverse the radiation effect snd the option of changing chemo is being driven by the fact I have to pair it with my brain Mets treatment. That limits my choices of chemo. My priority is to stay in the brain Mets medicine. So i deal with the effects of chest radiation and the chemo.
it was nice to read others stories and I am grateful that my pneumonitis is so low grade compared to others.0 -
LFF I am not sure about lobes...lol. I just know there was 3 new tumors and she is going for all 3....and that they are not near the colon wall like the last time.
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Wow LFF. 60 mg? I had such severe insomnia when I had a steroid series, at a fraction of that dose, to deal with inflammation from skull mets that I swear I didn’t sleep for a month! I did get through quite a few books. LOL.
Question for the group. Have any of you had trouble with itching from the liver mets? If yes, what did your liver function tests look like? Mine are completely in the normal range but I’m starting to have twinges again (currently off treatment) and have been having trouble with my skin itching all over but particularly my thighs. I woke last night and the tops of both thighs looked like the had been scalded. It’s less now but still looks somewhat rashy. What the heck? Not sure if I managed to get into something or if it’s just one more gift from MBC.
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Moth, thanks for the pneumonitis link. I guess things could have been worse. I am glad that my MO ordered the PET scan and this pneumonitis was caught early. Waiting for the pulmonologist to call me back. Most likely he will put me on higher dose of steroids. Hope you are feeling better and have no symptoms of pneumonitis.
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