How are people with liver mets doing?
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Nicolerod - How I wish your outcome had been different. 😢 I'm a realist so I'm not going to blow sunshine up your butt. Have a good cry. Then move forward, pray for the best and live as large as this awful disease will allow you to. Have you considered looking into clinical trials? We don't always qualify and they aren't always located nearby but if you are open to a trial it's worth investigating on clinicaltrials.gov. I already have a trial picked out to discuss with my MO if/when I progress on xeloda. Hugs.
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Thank you RK.... yes I am looking at a trial for the CHEK2 mutation which I have/or had last Aug... I also am in touch with the NIH for the CAR-T trial...but they need a a tumor NEW that is 1-2 cm and mine in the lung (which is new) is 0.4cm.... so I don't think I will qualify.
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Nicole, Sorry for your result of progression. It’s crappy news as we all know, especially with dwindling options left. Possibly your MO won’t want to change treatment yet? I just started my first clinical trial this week. There was a lot of pretesting for me, and it was a very long first day, but I have some hope that maybe this will be helpful. That’s good that you’re already scouting out specific ones. I’m much less knowledgeable about trials and am limiting myself to my specific hospital at the moment. I went with one recommended by my MO that is only Phase 1 but fit my qualifications. I haven’t asked how many treatments I have left. Not ready to hear the answer. Best wishes to you on what happens next. 🌺
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Hi all...Rosie...you couldn't have been more right... Just got done talking to MO and she wants to stay the course. She said the new lung met is VERY VERY tiny too tiny to even biopsy or do anything with. She said there are 2 new bone mets in the like the hip area and pelvis but they are also VERY VERY tiny. She said that early in her career she was too quick to switch treatments and she doesn't want to do that now..and since the growth is so minimal she feels it is doing something. My liver had NO new growth..which is strange for me bc every single treatment I failed I always got new tumors in there (personally I think its the TUDCA) keeping things at bay in there.
BEV and those that have had liver ablation can you give me thoughts? My MO did speak to my IR and my IR apparently told her he thinks ablation might be better for this one (it was already previously Y90'd) but she would discuss with me. Does an IR do ablation or is that a RO?
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Nicole - 👍Carry on and kick butt!
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Dear Nicole, the news suck:/ But then it is really great you and your MO don't loose your cool and go to the battle field to fight further. You are an example to all of us here... Huuuge hugs, Saulius
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Nicolerod, oh my dear, sorry you have new mets. keep on keeping going. xx
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Nicole- I am joining the conversation late, but I was sorry to read of your progression. Then happier to read that your MO does not want to change treatment yet. Your MO sounds smart to not jump too early on changing treatments. I had small increases of my liver mets for 3 scans, while on Ibrance, that my MO wanted to "wait and watch". We later decided to change to Lynparza with as she called it "slow, but steady growth". We do not want to cross off a treatment too soon. Hoping your next scan shows stable.
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Ladies, I'm Stage IV, but with "only" bone mets, so if you don't want me posting here, I'll just lurk - mainly to check in on moth.
My question is, were you diagnosed with liver mets AFTER your bone mets? How long did it take to progress? Did you have symptoms? I'm just curious.
Carol
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Hi Sunshine,
I’m not sure if I am the best example as my cancer is slower growing (but determined). I progressed from bone and pleural mets to the liver after four years. I suspect yours is also a bit slower growing as I see you have ILC. I’ve now had liver mets for a year an a half and was grateful to learn this morning that they are stable after going back on Xeloda. Regression wouldhave been nice but I’ll take stable!
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Thank you, sadiesservant. I think I consider myself mostly IDC with a few ILC cells thrown in. At least that's how I remember it from reading my initial MBC reports. I'm glad your liver mets are stable, even though regression or NED would have been even better. Thanks so much for your response.
Carol
Edited to say I tried to take the ILC out of my diagnoses, since it's not the main component. Don't know if it matters.
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Hi Sunshine! I was dx MBC in late Feb 2020 and started meds in March. My liver mets were found via PET, then verified via MRI 22 months later. I did not think I was symptomatic but in hindsight sight, my Christmas glass of wine made me feel awful. A first for me. So far xeloda is working wonders on both my bone and liver mets.
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Thank you, rk! I was diagnosed MBC in March of 2020. I started Ibrance in June of 2020 and am about to start cycle 27. I'm glad the xeloda is working for you. O'm hoping the Ibrance continues to work for me. So far, it is.
Carol
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SS so happy you are stable.
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Hi ladies,
My CT scan on Monday showed little change from April. I’m happy to see words like “ not significantly altered” and “ mildly increased”. The takeaway is that I’m more or less stable in both the lungs and liver, the pleural mass is also stable. I completed 21 weeks of Doxorubicin and so need a break from chemo treatments. So the plan is to take the summer off, monitor the CA15-3 and do another CT scan late August.
BTW, I acquired the liver tumours after being on Piqray for almost 2 years. I have no bone Mets however I am now seeing osteoporotic stress fractures in my spine probably made worse by/from the treatment drugs.Sadie, so happy to hear you are stable. Nicole, what a roller coaster and relieved you have a plan to stay the course. Thinking of you Moth with fingers and toes crossed that the Cisplatin is working. Be well, An
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Vent coming…ugh this platform is crazy making!!! Updating my profile is hopeless, bordering on useless. And my name continues to get miss spelled/autocorrected when I sign it. My first name only has Three letters for heavens sake..ANN
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Sunshine - I only have liver mets. Up until 6 mos before my dx I was definitely asymptomatic. At that point, I broke three ribs on my right side, so that muddies the waters about what caused any pain I was experiencing around that time. It resolved after a couple months. I never had any issues with food/alcohol making me feel bad.
Nicole - I'm glad your MO thinks it's worth giving your current treatment a little longer.
Pots - yay for stable, and that's a pretty tricky first name you have there, lol
Sadiesservant-i posted elsewhere congrats on stable
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Ann (aka An) I am thrilled to hear that you had such a great response to Doxil! I hope that you enjoy your chemo holiday and find good results in August!
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Ladies, I need help. A few days ago my mum was approved to continue Ibrance/Letrazole combo due to stable disease. Her spinal mets th6 and th11 are dead and encapsulated and her liver mets are stable and largest dying off from cyberknife. Yesterday she developed lumbar spine pain which is sharp upon movement (standing up and sitting down and turning in bed). When walking and resting she doesn't feel pain. Not radiating to legs.. I'm scared of lumbal spine mets. Could her abdominal MRI show lumbar spine? All is calm and stable and her spine mets showed best response to treatment. I'm so worried and sad for her.
Edit to add she does have osteoporosis in this part of her spine and is not taking any medication (save for vitamin D) due to liver toxicity and can't take injections due to dental issues and jaw necrosis as a possible side effect.
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What is the name of the chemo that starts with the letter "V" anyone know?? I cannot remember
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I'm so sorry Nicole.
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HI
Has anyone had a high ALK PHOS increase on a medication they just started only to have it decrease like a delayed response?
Mine went from 260 to now 301 over 3 wks. One of the 3 wks it did decrease once (start piqray) 260 - 235 - 265 - 301.
Reaching for hope to stay on a med longer then 6wks.
thank you
tigre
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vinorelbine?
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Vinorelbine (trade name Navelbine). Did nothing for me unfortunately but that’s a result of my indolent disease.
Daighterof, I think the abdominal MRI would show the lumbar spine. I haven’t had anything similar but it does sound like it should be checked out but it could be a variety of things. Hope she gets some relief.
Great to hear from you Ann and so pleased you have gotten so much mileage out of Doxil.
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thank you for the replies.
El_Tigre... go buy TUDCA your Alk Phos will drop mine went from 600 to 200's in 3 weeks and Moth is now doing great since she started it ..in only 1 week. You can order it on Amazon
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Nicole - the Scottish poster just recently started on this. Gah I can't think of her name right now.
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That’s me Sondra! Yes I’m on third cycle of Vinorelbine and have a scan due end of July. SEs are more tolerable for me than xeloda but fatigue is a biggie…I really have to pace myself. Everything else is dealable with.
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Thanks Sadie. She had abdominal MRI done a month ago and all was well but idk if they could see lumbar spine on it.. I'm super worried and we're on vacation in Spain so no testing can be done anytime soon.. I hate this disease.. just when things start looking up, something happens. Spending our days by the pool with mum in pain and both worrying sick. This sucks.
She never had pain with her other spine mets and they showed great response to let/ibr combo. What does spine mets pain even feel like ?
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For me the pain was rarely directly related to the bone but rather, pain from the lesions impinging nerves. In one case I had severe sciatica. In another case I had unbelievable headaches from lesions causing swelling in the area of the brain/c-spine. More recently, I had right shoulder pain, numbness and tingling in my right arm due to a new lesion in C7, T1-T3. I have bone mets all over but a lot in my spine which probably explains why my pain is primarily neurological. I have heard of some who experienced bone pain, particularly in the long bones such as the femur and also rib pain which they have described more as an ache.
Hopefully others will chime in.
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Ill just stick my head in here again re: the bone pain -
Its like a deep ache in a very specific part where the met is. Nothing touches the pain, it can lessen it, but you know its there. Mine hurt more on moving because the tumor was starting to impinge on whatever allowed me to lift my leg. And when it finally started touching on some of the nerves down there that was very painful. It also felt very 'heavy', which Im not sure how else to explain, and the pain developed over time.
Not all mets hurt, I only had the one that hurt and i had four, all in vertebrae and pelvis. I also had a fracture at L3 apparently I had no knowledge of happening as it didn't hurt.
It was a very different pain to the disc prolapse I had, which the disk fragments hit the nerve bundle in the L5 area and oh jesus the burning pain. It was horrific. I also have had degenerative lumbar pain in the past, and that was more a sharp pain in certain positions, similar to what your mother has. I would definitely flag with her team when you get home, but how are you managing the pain while away? Is it possible to get her heat/ice and at least alternate the ibuprofen/paracetemol to see if that helps?
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