How are people with liver mets doing?
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hi kris_2000, what is happening with your liver? Is it not responding to treatment?
I'm off to what should be my last chemo of 2021 (still have 2 more immunotherapy infusions though). CT on Friday. I'm feeling fine but my LFTs are just a tad elevated across the board for past 6 weeks - so that niggling concern that we might not quite have this under control is ever present.
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Moth, I hope you find it's under control.
As far as my liver, that's how it all started with me. I had abdominal pain which became severe. It took a while after treatment started for it to ease up but I've continued to have this feeling of uncomfortable pressure right under my ribs. I assumed it was my liver but from reading what others have said it's probably more precisely ascites.
Does that feeling and bloating ever go completely away with successful treatment or not really?
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hey Kris ,
Sorry you’re dealing with this as well. If it is ascites , treatment should take care of it if it’s working. In my case, my MO just told me that I’d likely have it long term regardless. I have a lot of scarring in my liver due to the fast killing off of tiny Mets previously, but now having new tumours with it. Others here have successfully stopped and dried up their ascites. I think it’s different for everyone. I drain myself at home but have the bloated feeling pretty quickly when I eat or drink though it is lower down then my ribs. Think, 4/5 month pregnant belly and where that would sit on anyone. Hope that helps !
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Kris,
I have that kind of feeling of my liver pressing against my ribs and just below the ribs. I have several things going on in that area, liver tumors with the largest on the top of my liver under my rib, lung tumors at the bottom of my lung, loculated pleural effusion, and a deteriorating rib from the lung tumors. I don't have ascites (knock on wood). As BAP said, ascites would be lower in the torso. I'm hoping to get the deteriorating rib radiated before the end of the year since I will be on a trial from the first week of January.
Hugs, Susan
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kris, when ascites happens it's usually way lower in abdomen. It's free fluid in the cavity and gravity pulls it down, so even if it's caused by the liver (usually due to the liver failing to put enough proteins into the bloodstream. That higher concentration gradient is what pulls the fluid back into blood) it is seen quite a way from the liver.
You might be feeling your liver, lung or pleura. Definitely something to discuss with your MO.
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Others have already covered this Kris but I can also chime in to say that I have discomfort/pain under my right ribs and on that side of my abdomen. My MO was surprised that I have pain but, in my case, one of the lesions is close to the capsule which may be why I am more sensitive to it. More recently I have been having some abdominal pain which can last for days. I suspect it's the liver pressing on the stomach and/or intestines. Scan tomorrow night and then, once I can find someone to give me the results, I'll know if progression is causing my latest issues....
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Thanks everyone. I guess I'll have to add it to my list to ask my MO directly next time. I've seen ascites noted in past notes but I also have a pleural effusion, bone mets in my sternum, and "innumerable" lesions on my liver so it very well could be a combination of things.
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Has anyone heard from Alabama Dee? I need to get a message to her ? Does anyone email with her and can ask her to email me?
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Nicole - The mods may be able to help you.
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Yes they did thanks SeeQ
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NicoleRed...I have been on Trodelvy for exactly a year now. It has kept my liver mets in check for the entire time, some shrinkage, but also I have been off twice for a month to have surgery on my hip, and it still did not progress while I was off. My bone mets are ER/PR + in a big way, but have stayed stable. as far as new lesions. My liver mets are TNBC essentially. You will lose your hair.I feel crappy chemo days, mostly from premeds and antiemetics but am ok the next day. The Xarxio (WBC booster) are tough at first but got better after time. It's like Neupogen, just spread out over a few days. Trodelvy is my 5th chemo in 2 years, none of the others worked except one, for 9 months. I pray it keeps working as there is not a good choice for me to go to next; either clinical trial or try something that is more of a guess.
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WOW CWSTERLING that was a great positive post. You sound like me I was ER+ then now after 2 years TNBC.... I had my infusion Tuesday and just tonight I felt a little nauseous but too a mild Ativan and felt much better. I am so happy to hear your liver mets shrunk!! I already lost my hair with eribulin so there is just peach fuzz there...I am expecting it to all be out after next infusion...Tuesday. Thanks for the reply
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Anyone hear that Soy can be ok..by soy , I mean fresh organic edamame.... now that I am triple negative...there was an article on here...
https://www.breastcancer.org/research-news/soy-may-offer-benefits-for-hr-neg-disease
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Nicole ,
There are a lot of studies they show organic soy is okay for women with breast cancer , even hormone positive . Actually , many show a protective benefit , but biggest benefit was seen in those who consumed it regularly throughout their lives. All they being said , it should be organic.
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The nutritionist at UCSF told me that soy is fine even for ER+ patients. Lots of protein.
Anyone else having trouble keeping weight on? I'm now down to 100 lbs, about 10 lbs underweight. My Oncologist put me on Megestrol. It's an appetite stimulator that was original given to AIDS patients. Strangely enough, it was also used as a breast cancer treatment way back when there weren't many options.
Hugs, Susan
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Dear SusanSF, yes, I also read several serious sources where soy is fine. As much as I was interested in diet, I don't think diet impacts mbc course so much. For bc prevention maybe diet is important, but for mbc... you sometimes have to eat what you can, not what "is good" in popular-media, especially when you loose weight, as therapies go on and on.
Ahm... latest news from our front: Sandra has just come back from 5 days of Cyberknife to II level LNs (13th-17th of December). Let's hope these suckers were killed and we can continue marching on. She feels absolutely no side effects so far, as all these 3 LNs were very small (<7 mm) and in one place, so they got the very high dose in 5 fractions, which is ~90-110 Gy if measured in 2 Gy fractions. No time to rest - HP infusion on Wednesday:/ But we are happy to be home.
Saulius
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Saulius,
So happy that Sandra's treatment went well. As you say, I hope that worked to eliminate that issue.
Also happy that she's having no side effects from this. That's wonderful.
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Saulius thanks for the update on Sandra so happy for no side effects!! YES lets hope those suckers are dead and gone!!
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Well done Sandra wishing you and your team all the best
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There is really no movement in the Trodelvy thread so I am gonna ask here...does anyone have or had an issue with blood when they blow their nose? Not like. "bloody-nose- tilt your head back etc" but like I blow and there is bright red blood or like a stringy piece sometimes of blood...ever since I started this new treatment... I know that with winter/heat being on can dry out nose but this is different..when I have that its usually a little pinkish etc..this is a little more than that and mostly the left nostril...I messaged my MO but just wondering if anyone has had this with a treatment I am starting to get concerned bc its been happening 2-3 times a day now...
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Nicole, I had what you described on Ibrance sometimes, even a true drippy bloody nose now and then. The week off between cycles helped a lot and then nothing would happen for quite a while. My MO eventually reduced my dose which helped a lot. I know the drugs are not the same, but yes, I’ve had that. (I wondered if it was a sinus infection but never really figured it out.) I hope your MO has something to say that’s helpful.
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Hi Nicole,
I have also had something similar - can't recall if it was Ibrance or Verzenio. I suspect the nasal membranes are impacted by treatment and that, combined with the effects of central heating and cold, dry air outside, causes thinning/bleeding. I don't think you need to worry about it unless there are signs of infection, pain or if the bleeding is excessive (particularly if your platelets are down). However, your MO will know best.
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Nicole,
I had this a lot when I was on Ibrance, and I have also experienced it on Xeloda/neratinib. For me, it happens more in the morning when I get up, but can also occur later in the day. I did find with Ibrance that if I ran one of those little portable humidifiers close to my bed, it helped somewhat. Lately, I've taken to putting a dab of Vick's Vaporub at the opening to my nostrils just before bed, and that also helps me a bit.
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I've had the bleeding nose thing off and on since starting treatment in March 2020. I use Ayr saline nasal gel when it happens. Apply liberally with q tip. Also didn't you say you sleep on your left ? For me my left nostril is worse too and I tend to sleep on the left as well...so I suspect it's somehow related
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Thanks all!!!! I really appreciate it!! Yes I believe its just from the chemo..(didn't hear back from MO yet) I am going to try the Humidifier (bev) and the nasal gel (Moth) hey Moth..wow that you remembered I sleep on my left!! gosh no chemo brain for you!!! lol Some in the Trodelevy FB group mentioned it happens to them on this and on other chemos...some say has to do with losing your nose hairs and the membranes becoming dry or something.
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Is Cisplatin chemo Carbo???
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Dear Nicole, I know this "bloody nose" happens with T-DM1, there was discussion, not even one, on T-DM1 boards, if I remember well. This definitely happens because PLT drop in the blood. Mouth sores and more bruising was also mentioned.
Dear Everyone, thanks so much for best wishes! Hugs to everyone, Saulius
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susan- I have lost over 10 lbs in a month too. Total weight loss of 70 lbs in a little over a year. I had some to spare but not that much. MO just put me on sane appetite stimulant you are on . Let’s hope it works for us. If I know you, you have very little reserves. Thinking of you.
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saulius- great news about Sandra.
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Nicole- I have horrible nose bleed issues. Seeen ENT. Not much can be done currently for me. Just affrin to stop them snd a whole lots of patience.
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