How are people with liver mets doing?
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Sandibeach thanks for the tips. I'm going to write them down and stick it on my fridge Right now I am trying to eat a little peanut butter sandwich and milk. Milk tastes good peanut butter does not, 3 bites is all I got down. I wish I had some cookies to go with my milk. I went to my PCP today. We both a agree to focus on what tastes good not my blood sugars. I think that will help. The cold chocolate Boost sounds good. I'm not inclined to make sure it's low sugar right now.
Kattysmith Yes I've been instructed to call for IV to rehydrate. But my MO is so concerned with BS she wouldn't even give me free boost. Grrr I am type 11 diabetes controlled..
I feel shaky and tired. I think a nap is next. 💞
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has anyone heard from zarovka? Just worried about her.
Tricia
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Grannax, Is this what you had?
Yttrium 90 radiation spheres delivered directly into the liver via the hepatic arteries done via a catheter.
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Yes it is. It was successful for about 18 months.
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Thanks Grannax. I'll take 18 months
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here is a new one we can hope for?
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Stitz, I read about that the other day. Would be amazing!
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BeautifulSunset, is your onc talking about Y90 for you?
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Abeautifulsunset. YES to eighteen months. I'll take another 18 if I'm a candidate. I don't know if it can be done twice.
JFL and stitz that sounds amazing.
I'm eating a little better this week on AA. I do like the rich chocolate shake by Glucerna. Milk still tastes good. So I think I'll live. If that study works, then they can kill the fat cells with AA. LOL LOL
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I also have to have a brain MRI on Friday. My daughter mentioned brain fog so my MO had to order test. Ugh. Did I mention my liver BX didn't change. It's still 100%ER + HER 2 -. Weird since I am ESR1, hormone resistant. But, my MO says "Two different tests". Go figure. 💞
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is there anyone here with Mets in liver who can share positive stories ? I am 42, first diagnosed in 2013 with stage 2A no lymph involved. currently have Mets in liver and infraclavicular area .while I am going to get 2nd and maybe 3rd opinion, I won't stop my treatments with my old medical team.plan is to do a hysterectomy then start fermara and Verzenio.(tumor is 95 percent hormone receptor) Anyone here similar to my situation? Btw beside fermara and verzenio I will be participating in a research with one more oral medication added to that regimen (don't know the name and have no idea yet that If it is a placebo base research or not) .would you please share your experience with verzenio? I heard about sever diarrhea and the bone pain and stiffness. (My Mo is against chemo at this point, unless she sees signs of liver failure).I do not mind any of that if it gives me the chance to be by my 10 years old and see her graduating from high school😉
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hi Ailurophile,
So sorry you are here. When I was diagnosed stage 4, my kids were 10 and 14. I just wanted to see my daughter's bat mitzvah and my son's HS graduation. Now my son is in his 4th yr of college and my daughter is soon to graduate HS. So there is plenty of hope and lots of options out there for you.
Your combo is a good, but def get at least one other opinion from major research facility.
Also, I am curious why are you having a hysterectomy? That would be unusual, unless there is something I don't know about you.
I just noticed your location. We are close. I'm going to PM you
Sunset
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JFL - How long were you on Doxil? I've done 3 doses but my tumor markers are still going up - now at 1632. I've heard that markers can be high with bone and liver mets, ever heard this? I'm seeing my oncologist in a couple days. Not sure if she'll take me off the Doxil since it is so expensive ($700 month with my insurance) I wouldn't be too sad if she did.
I've had so many different drugs, as it seems many of us have. None are really sticking well so far. Never heard of Halaven. As long as my doctor has something more to offer, I'm happy to keep on going.
Been dx since 2002 stage 3, 2006 stage 4 with bone mets and then 2015 liver mets. I've had a really long time to deal with this. It doesn't phase me much anymore - I do the treatments, get the scans, bloodwork, it's so routine, I hardly get anxious about it anymore.
Ailurophile - I was first dx at 37. My kids were 4, 6 and 7 years old. I just wanted time to grow them to adulthood. They are now 21, 23 and 24 years old. I accomplished my mission! I'm now on bonus time as far as I'm concerned. Really glad to be alive and have time to enjoy life. I feel pretty well once I'm into recovery days between chemo treatments. I really enjoy those good days.
There are so many new BC drugs coming out all the time. We have a lot more options then patients from 20 years ago. More are living with stage IV. Avoid life's drama and enjoy the moment, that's what I try to do.
Grateful to God every single day!
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Has anyone heard from Tennille76?
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sunshine, I sent you a pm.
neephee, your story inspires me! I want to accomplish my mission too!
Thank you both to share your stories. I wish you (and all of us) happiness and joy 💚
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NeePhee, I did Doxil for 9 months. I loved it - no hair loss and IV only every 4 weeks. My labs were wonky and my markers were up in the beginning. However, I also had Y90 liver radioembolization around the same time so it was unclear what was causing what. Definitely get a scan before departing from Doxil. Also, check with the manufacturer - many have programs to cover the patient copay. I never paid for Doxil because I had already hit my annual out of pocket max by the time I started it in April and then I finished in December. Halaven has a program to cover patient copays with no qualifications other than requiring that the patient has insurance. XGeva too.
Ailurophile, I was diagnosed with mets at 38 while pregnant. I am driven to see my son grow up or at least grow as old as possible. He just turned 4. I have had extensive liver mets since the beginning and was literally dying of bone mets / uncontrollable hypercalcemia when I was diagnosed (which I didn't know was possible at the time) - probably had less than a month without treatment, maybe less. There are new treatments coming out all the time and it really isn't over until it is over. I have had many ups and downs but have pretty much been living the same life over the last 4 years. No one really knows I have mets. I still work full time at a demanding job. After my bones healed, which took a good year or so, I am back to walking, lifting weights, doing some running although that has been harder on certain meds than others.
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JFL Thanks for your reply. Each and every one of you give me so much hope and pull me out of my dark place with your determination to live your life beautifully. I was diagnosed at 35. We are awfully young to go through this.
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hi everyone. Looking at this tonight after getting some rough news on Friday. Feeling better, more hopeful just reading some of the recent postings. I too am a young mom. 35 with 2 little girls - 2 and 5.
I think I've posted this here before, but I was diagnosed with 2 liver mets last January (tnbc after before 99% ER+ when I was diagnosed stage 3 in December of '16). Started GemCarbo and by April by pet was NED. PETs in July and October were NED too, a really miraculous response after an initially scary diagnosis. So I stopped chemo in October. I just had my first scan, an abdominal MRI, since stopping treatment and the findings are scary to me. Lots of findings in my liver - atrophy, hypoenhacement, arterial hyperenhancement... and much of it in a new part of my liver. My LFTs have been going up while I have been off chemo. Not sure if it's cancer, scar tissue, or what these new areas represent. The mri also picked up 4 new mets in my spine. Next step is to get a pet scan to learn more about what's going on in my liver.
I'm scared - about the progression in such a short time period and about the condition of my liver. It's good to read the stories from people who have been walking this journey for much longer and the recognition that there are ups and downs. Any words of wisdom or advice is always appreciated. I am thinking about finding a liver doctor to bring onto my medical team. Anyone else experience MRI results of the liver like this? Perhaps I should just be patient and see what we learn more a PET/CT.
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thrivingmama, I feel for you in all that you're going through. Could you go back on the chemo that was working so well for you? I hope your doctors find good treatments for you and things get better for you.
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Ladies I am sorry to ask but have any of you heard from Z ? I have not seen any post from her since october.
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Woodylb, it was posted a few months ago, that Z was taking a break from BCO to focus on her family and innovative cancer treatments.
I hope she does reconnect at some point to update us..but I guess for now, she is living out her life and devoting her energies to other purposes. Really miss her postings.
How are you?
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Thrivingmamma. I just went through a scary time, four months of conflicting mri/PET results. Now, through a BX I know that it is another return of my cancer. We're treating it with AA, a hateful TX that has hard SE. Hopefully I will be able to have another y90. Have you checked into this local TX? First ask for a BX of one of those puzzling places. Yes, would agree go back on the one that was working, sooner rather than later.
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thriving: when is your PET CT? Have you spoken to your MO yet? I would think going back on carbo/gemzar would be a good option for you since it worked so well for the first time. I would definitely do some type of genomic testing on your tumors to see if there are any targeted therapies/trails you might be eligible for. Please keep us in touch. PARPs have been a good drug for TNBC with BRAC mutations. Could not remember if you carry a BRAC mutation or not.
I have been on carbo/gem for 16 months and still have a little cancer in my liver. Always thought about what my MO would recommend as far as coming off chemo or not if I ever was NED. I will have to ask about her thoughts on this.
PRAYERS AND HUGS
Tricia
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Sandineach , thank you. I knew that she took a brake from bco but i thought it has been too long. I hope she is well and thriving.
I am ok so far , even though the cancer have been reoccurring for the last year but in a very small amount mainly on the spine . Till now my doctor is able to contain it . The liver is still NED thanks be to God. How are you doing?
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Hello to all you wonderful ladies. I've been reading through this site, and this thread in particular, and have learned so much.
I have just been diagnosed with a 5 cm indeterminate liver mass by an MRI. I have no symptoms the MRI was for something else. I do not have a history of breast cancer. I was wondering if any of you had your breast cancer initially diagnosed by first finding a liver tumor?
I have a three phase liver CT on Wednesday but I'm a nervous wreck. Scanxiety for sure. Dr. Google is not being very helpful.
Thanks and hugs to you all!
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Rowwellandlive, hopefully the CT will prove that the 5cm mass will just turn out to be a benign hemangioma.
Once the CT gives more information, you may or may not get a liver bx done to further diagnose if this is breast cancer metastatic disease. I am assuming you have had the laboratory tests ordered along with tumor markers.
Take deep breaths and stay off of Dr. Google, or at least until you get results from upcoming tests.
May I ask why you suspect breast cancer liver mets, therefore leading you to this thread? Did a physician mention anything that would alarm you to breast cancer?
If it turns out to be a large hemangioma, it does no harm..just live with it. Probably had it all your life!
My breast cancer liver mets were diagnosed with a liver biopsy and it correlated with labs, tumor marker and CT scans.
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Ailurophile and Thriving Mama, we are too young to be going through this! Thriving Mama, I hope your next treatment knocks back all the mets. It is a good sign that Gemzar and Carbo worked so well. I think some of us (or maybe all of us) just need to remain on some sort of treatment to keep things at bay.
Hi Woody, my friend! I also continue to think about Zarovka and hope she is doing well, enjoying life and immersing herself in the various complementary and/or alternative treatments. She is sorely missed by everyone who used to read her posts. It is hard to go from seeing such a large presence on here from someone when they step away suddenly. I felt the same way when Hope stopped coming to the boards, a bit farther back. It just shows how much Zarovka and also Hope were loved and valued here.
Sandibeach, I have not heard from Tennille and have been hoping she is okay as well.
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Hi Sandi Beach. The radiologist wrote it was inconsistent with a benign hemangioma and I almost certainly haven't had it my whole life. I had a CT with contrast last April and my liver was clear. I have a weird benign kidney tumor that's followed for growth because it could hemorraghe. That's what's so scary so much growth so fast.
No tumor markets done. I had a complete blood panel done Nov 27th and all was fine. Dr didn't mention more blood work yet.
I was blindsided by this. Primary liver cancer would be strange I would not seen to be a candidate but of course it's possible.I was looking at cancer sites that metastasize to the liver and breast was one. I know colon is another. I did have a colonoscopy 4 yrs ago.
I'm trying to stay off Google but can't find one thing to ease my mind. Thank you for responding!
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Sandi your "profile" says DCIS and then stage 4. I had two breast biopsies for suspected DCIS and they assured me that was stage 0 so not to worry too much even if it came back positive. All was benign but I see what they told me was false!
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Hi RowWellandLive, I am sorry you are suffering from not knowing what you are dealing with. Were any of the tumor markers elevated to indicate any potential culprit cancers? Please keep us posted. If it turns out you have breast cancer liver mets, you could not ask for a more supportive online group of women and men.
And the DCIS, my biggest pet peeve in the breast cancer world. Yes, it is considered Stage 0 or precancer. I think that is a terrible injustice for those who get this dx..makes them (or maybe just me) that their disease is not significant. So here I am..DCIS to stage IV in 10 years and I had annual monitoring thanks to my MO, who never considers DCIS as a non threat in the future.
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