How are people with liver mets doing?
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JFL. I simply do not know how you cope so well with all you have on your plate.
I was very interested in your post. On my recent abdominal MRI, pleural effusion showed up in the bottom part of my lung. No one has mentioned draining it. I do have some SOB issues but when I use my pulsox it shows oxygen at 98% but HR 150 to 160. My doc says I have SVT heart arrhythmia. I’m going to cardiologist to find out what to do about that.
No ascites showed up. I’m glad because it sounds miserable.
Yep, I’m not doing any exercise either. The SVT or whatever it is, happens when I just walk from my bedroom to my kitchen. They didn’t do a PET this time so I don’t know what my whole lung looks like. The abdominal MRI just happened to see the lower part of my right lung.
Meanwhile, I finished my first cycle of Eribulin last Thursday. I had a couple of bad days and two really good days. Yesterday was just okay. Today I’m supposed to plant 30 Pansies in my front flower beds. We’ll see how that goes. I start my second cycle on February 3.
You’re so right about electrolytes being delicate My MO put me on potassium pills two weeks ago 20 meq I think I know there’s risk if it gets too high I won’t have anymore labs until next week it’s going to be tricky to keep everything in balance The chemo knocks it down, the pills bring it up but what’s the happy balance?
I look forward to your posts but understand that you have to limit them
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Saulius, your little boy is adorable. I’m sure he keeps you on your toes. He looks like a happy guy, I’m sure he’s a joy to you.
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Just thought I'd update. Onc called with the Biopsy results and it's not bad, not great, just in the middle which is ok with me.
I'm still strongly ER+ (100%) but the progesterone went back to 0. At initial dx these were what the markers were as well. At my mastectomy, it was 100% ER+ and 50% PR+. Her 2 is still considered negative.
The letrozole still failed but I am happy that there are still options in my back pocket and hopefully one will stick for a while yet. I know Tamox and I think flaslodex is likely still an option of something that can work.
Still hoping to have the sample genetically tested which I'll have to discuss at our next visit.
I'll consider this a win, and hopefully this Abraxane is doing it's job for now.
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Dear Bev, Grannax, thank you so much. There are these darker days when you look back at your life and you think you achieved nothing, and the future looks bleak... and then you look at your child, your children, and you understand that, wow, you did so much, and when they smile, you know your future, your soul will go on with them. Through these very hard 4 years we managed to preserve him from all these "dark clouds", and he grows up a strong, happy, yet humble and emphatic boy. When we hug with Sandra, he always runs to us and embraces us both, our legs rather - that always makes my eyes tear:) I got so lucky to have both of them.
Dear BAP, uhh, I have noticed in many cases that PR is most likely to change. Maybe I am wrong but therefore targeted treatments are more directed towards ER. Glad you have options. Let's hold on, as many more options are coming, and let's hope science accelerates even more, although few past years have been quite spectacular. It is about time to end all this misery of "incurable"!
Saulius
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Grannax, my mother was originally dx with SVT. She had a heart ablation to treat it that really made a difference. A couple years later though, she was dx with afib and now takes Eliquis.
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Bliss. I had to reschedule my cardiologist appointment because it was on the same day I am supposed to get my second dose of vaccine. So, I have to wait until the 15th. I have a friend who had and ablation for SVT. I don’t know if mine will require that but it’s good to know it can work.
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husband- I can’t help you much when it comes to the criteria for gamma and cyber knife. I know there is a size limit for the tumors. There is also normally a number Limit on how many they will treat. I faught the insurance companies on two occasions to get them to cover the procedures. I had more than the number of tumors that they normally treat. I am not sure but would guess that location has some influence on if the procedure can be done. These procedures are used to shrink tumors before surgery when tumors are deemed inoperable to begin with. My latest tumors are 2 mm in size each so i know gamma knife snd cyber knife can treat very small tumors. I am also being told that cyber knife is almost as effective as gamma knife snd does not require the use of a halo.
Sorry I can’t be more specific. I can go back through my records if you like to see the varying sizes and locations of my tumors I have treated.
Sailors- you have a beautiful son. I remind myself just how lucky I am to have seen my kids grow up over the past 8 years. I may not be the mother I wanted/wish I could be but I am still present in their world. It’s crazy that my oldest, who was 8 at my diagnosis, is now being accepted to colleges snd graduating. My youngest was just 3 months old and is now finishing elementary school. Totally worth all the struggles.
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LFF - such beautiful words from a mother's heart. I pray for peace, comfort, love and healing in your life. Your children are the luckiest children in the world.
Saulius - what a gorgeous boy! May God bless and keep your family for many years to come
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Thank you everyone, thank you HaG! And LFF... your children are extremely proud of you, I am sure. They are lucky to have such a mother, and yes, our beloved people... they keep us going in all adverse situations. Saulius
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Ahh, she's always on my mind - do we have any news from Nicole?:/ Saulius
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Saulius,
Nicole has not asked me to post for her again, but I can tell you that she's still having a tough time with pain. We have texted some. She has been mostly resting as much as she can. She had a pain doctor consult again, and I believe that the consensus was that they were going to continue to try to use the liquid pain med that she has been on and off. So I'm sure she would appreciate all of your prayers. I will text her in a few days and see how she's doing and ask if there's anything else to report here.
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BevJen, thanks for the update on Nicole. Always thinking of her.
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thanks BevJen - let her know we are praying 🙏
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trying to get up caught up with everyone. This board is such a place of understanding and encouragement.
sailius- adorable photo
Grannax- sorry you have to wait for heart dr apt.
LFF- You are amazing
Nicole- we miss you and hope you are getting that pain under controlI am having my 4th liver biopsy in 4 months on Thursday. I’m hoping for an easy go if it
On a happy note- since my 4 yo granddaughter has had covid (asymptomatic) and hubby and I have had it too, we are able to watch her a couple days to help her dad so he can go back to work. I’m so thrilled since it’s been almost a year since I have watched her.
Dee
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Dear Bev, thank you for the info on Nicole, we all pray for her.
Dee, oh, great you are over with Covid. And even greater (don't know if one can say this in English) that you can spend time with your 4 year old granddaughter. Best of luck for the biopsy. 4th in 4 months... wow, how come?
Saulius
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thanks for the update on Nicole. Healing thoughts coming her way from Seattle.
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Dee-
Good luck with the biopsy - 🙏 everything goes smoothly.
Out of the darkness a little light! ❤️ So happy you will have time to spend now watching your granddaughter!! Glad you are over Covid! Great news
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Dee I sure can’t wait to be with my grandkids. They lighten my load like no one else can. Fortunately, they will start outside sports soon, Hurdles, long jump for Aubrie and baseball for Blake. I think spectators will be allowed. Plus I will be immune by then.
I did get to see a video of Aubrie’s swim meet. I’ll try to post a pic.
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moth: I have not been posting or even lurking for some time. I hope your results tomorrow are positive for improvements.
saulius: You and your wife are blessed to have such a sweet child in your lives.
JFL: I am happy to hear your liver enzymes are dropping. We'll take any good signs, no matter how small. I hope your insurance will not be an issue.
To All: Depression hasn't been too big an issue with me. I do get bouts of anxiety. I'll be fine then suddenly - Holy Crap, I am Stage IV!! Then I fret. How long have I got? Feeling okay right now. For how long? tic toc tic toc. I need a padded sound proof room I can scream in. Cancer is a stalker. I try to run to keep distance between us.
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Hi Everyone,
I've been a lurker on this thread for some time, learning from all of you and cheering you on in the background but it appears that I am now joining you. Just received word that it's now in my liver. I'll be able to provide more details tomorrow (I believe the largest of numerous mets is 2 cm) when I see the scan results myself.
To be honest, not really that surprised. I had sudden onset of headaches in August/September that were clearly from my skull/c-spine mets despite scans coming back stable. Radiation took care of them but more recently I have been having worsening right side pain. It seemed to begin in the ribs and then progressed to pain in my abdomen, particularly when I walk my dog but now even when I sit or lie down at night. Surprising that I felt pain before other symptoms like nausea but my MO suspects it may be close to the capsule of my liver.
We're going to try Xeloda again (long story but not sure we gave it a full chance before) but if there is any worsening of symptoms we will move on after one cycle.
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Sadiesservant,
Sorry to hear this but you are in the right place. The folks on this thread are very supportive of one another.
Take a deep breath, and let us know more details when you feel that you want to.
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Sadie- Keep us informed. How about a liver biopsy to check stats and see if there are changes? Just wondering.
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Thanks ladies. Funny, I was pretty sure before getting the CT results from my MO but to have it confirmed... well as you know it’s a bit of a gut punch. I’m doing okay though, thinking through next steps and once again thinking about work. I am in awe of JFL but consistently worry that I will lose all my time and energy working. And yet, darn I love that pay check (and the work to be honest) that allows me to satisfy my whims. LOL.
I did ask about a biopsy and genetic testing. He’s not a huge fan but will take it to the tumour group to discuss. Stay tuned.
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Sadiesservant,
Yes, hearing the liver stuff is an absolute gut punch. There's no way around that.
Re work, not to insert my opinion here, but I wouldn't make any sudden decisions re that. I am of retirement age and so at the end of my spring semester, I retired. I think that has been as much of a shock to my system as getting my diagnosis and worrying about treatments. I probably did the right thing, but first, there was the financial adjustment and second, there's been the "what's my purpose in life" adjustment. I'd say the second has been more difficult than the first. And to be honest, work provided a definite respite from focusing solely upon my cancer and my treatments and what's up next. Just my feeling.
Hang in there.
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Hi Sadiesservant! Welcome. Nice to still talk with you but the reason why sucks. Unfortunately for me, as you know, my liver was the first site of metastases, so for me it was the double gut punch. As I said in other thread, there are so many knowledgeable people on this thread with a ton of experience. Strong advocates for themselves and allthose with MBC.
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I agree with Bev about stopping work. I find it a very welcome distraction. As long as work is not negatively impacting your condition, causing stress or making treatment difficult, I’d hang in as long as you want to / can.
Best wishes
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Hey Sadie,
I agree with the work. As long as it isn't stressful and gives you purpose, I'd keep going. I'm currently working from home. I go into the office occasionally, but I come into contact with a lot of people so with COVID on the go, I do try to distance myself if I can. Sometimes there isn't a whole lot of work to do at home and then I feel bad that I'm being paid for it, so then I offer myself upon basically for anything. They're so good to me so I know they'll pay me regardless, but I don't want to seem redundant and get put on unemployment sick benefits. My husband is currently unemployed thanks to covid so I feel like I gotta keep us going. But in saying that, work is a welcome distraction. My son is in school so I can either sit here and wallow, or I can be productive and keep my mind busy.
Elderberry, I get that that way too. A little more recently I've been having waves of anger and sadness. I'm in this position of stage 4 because my cries were unheard by many doctors, that something was wrong with my breast. Being 28 at the time which what was considered a weak family history ( That is super strong now) , I was unable to access diagnostic imaging or biopsies because they didn't think I needed it . SO I was denied the opportunity to have early detection. I wax and wane between positivity that I can be a long hauler and sadness with my current reality.
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Sadiesservant - sorry to hear you're joining us on the hepato hammock (I just totally made that up lol....) Hope you get detailed info today and a plan.
Elderberry - hi & thank you for remembering! Yes, I get my CT scan results late this afternoon. I really have no intuition about it. I feel good - better than I have in many months so I hope that means something good is happening inside as well but I know it doesn't really work like that.
Saulius - oh little munchkins grow so fast! When they're little it seems like they're just little for ages but then suddenly they're not. In my parenting/homeschooling groups we had a saying about 'the days are long but the years gallop' My oldest is an RN and will be getting her 1st covid vaccine this Friday. So glad for her. I'm still down for April - June. Oh well. At least she will be protected.
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Good morning!
Saulius, your boy is just too cute!
Moth, glad your daughter's getting her vaccine. I'm still trying to get one for my 88 yo mother.
Sadie, sorry you're joining us, but welcome!
I had a PET Monday with mixed results. Stable in lungs, but new nodes and increasing liver mets. Ugh! I was hoping for good news there, but no. I see my MO Friday. Don't think Faslodex/Verzenio are working either, so I'll be curious where she thinks we go from here. I'm ready to try Piqray again or just go for the IV chemo again. One good thing is my bones remain inhospitable to mets, now if only my liver would follow suit.
Hate this disease!
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