How are people with liver mets doing?
Comments
-
blainejenni- I see that you were on eribulin, was that for your liver mets? How did it work for you how many cycles did you have.
I am having alot of fatigue after first cycle and also some loose stools stomach upset. How long have you had liver mets?
Raven
0 -
Raven,
I've had liver mets for about 2.5 years now. Eribulin/Halaven was Fabulous for the liver mets! Knocked them back to NED and I got a full year out of the treatment. And, yes, my MO chose Halaven because Ibrance/Letrozole had failed and I had developed liver mets.
You do have to keep an eye on your red blood cells though - I struggled with anemia. Too many transfusions can cause antibody troubles and the red blood cell stimulators can/might cause tumor growth, so I managed it with careful diet and the odd iron supplement. But, I am paranoid about medical interventions, so another person might have gone for more anemia treatment.
0 -
NausaoyO I don't know what the I R will say about previous ablation. I didn't ask much about the sequence of procedures. I just wanted it done before I chickened out. It wasn't too bad. Lots of ladies here have had y90. Maybe ten. If you look on local treatment thread you can read every detail of our experiences. All different.
0 -
I had my second stay in the hospital for a bleeding ulcer, bloody nose that would not stop, bloody stools. I have not had chemo for several weeks and as of Thursday my platelets were 50. He wants me to go on a lower dose of carbogem-but I am scared. But it is in liver so I have no choice. My bowel movements were just getting normal-and I did not go today, so now I am totally freaking out. Is there any hope? I am on a soft food diet. Today I did go to lunch and a few stores. AND I bought myself diamond stud earrings. I am tired of not feeling like a woman.
0 -
Falsodex slammed my bone mets, but did not help liver mets. My husband asked about Y90 and my MO said '"great idea, with the bone mets stable, I will refer you to an IR." He was under the impression that Y90 was best for one stubborn met in cases of colon cancer. IR said yes, this is a "go". Blood work was fine and I definitely qualified. I had the right lobe done May 29th and will be scheduling the MRI to see how it went tomorrow; usually they wait at least 3 months before imaging. I may have something done with the left lobe in the future(depending on imaging) I have also been on Xeloda since March. Something has worked because my symptoms(right side pain) are gone and my tumor markers have gone down significantly. I recommend that anyone with liver mets consult with a good IR.
0 -
MJHMJAN1014,
Fantastic!
0 -
Blainejennifer, there is no issue having other systemic mets so long as they are stable. I have extensive, yet stable/ inactive bone mets. Make sure you see an IR who focuses on oncology and has done breast cancer Y90. I was told no by an uniformed IR generalist who does some Y90 on colon cancer and liver but not breast. He told me I was too heavily pretreated and would go into liver failure - a risk for colon and liver cancer but not breast due to differences in chemos available for each. I subsequently found a top oncology IR with extensive breast Y90 experience who told me I was a perfect candidate and met all three of the important criteria. Also, I remained on Doxil when I had Y90. No need for a long treatment break.
Nouzay, as someone who is repeatedly dealing with liver progression only, like you, I do think getting your liver in check could permit you to stay on a good combo that is helping your bone mets and gives good QOL. I am hoping I can stay on Doxil long-term following my Y90 for the same reason. Doxil is very tolerable. I would recommend moving quickly on the Y90 for that reason. Also, because you only have 4 liver mets, you may be a candidate for SBRT, which is limited to those with only a few mets. Have you looked into it previously? SBRT has been linked to an abscopal effect - where mets in other parts of the body spontaneously healed after the local therapy.
0 -
Hi,
Anyone else with good stories about liver mets and tried Halaven (eriprucin)?
Raven
0 -
serb4 Yes, you already know my good story. Inactive liver mets since y90 15 months ago. Shetland Pony is 3 years out, I think. Go to local treatments thread to see everyone and their recovery.
0 -
Raven, this is the link to the thread on which people discuss their local liver treatments.
https://community.breastcancer.org/forum/8/topics/832767?page=19#post_5246050
0 -
Hi,
I am not sure what the Y90 is I live in Europe so it may not be an option for me. I will try and find local treatments.
Raven
0 -
Serb, I have had extensive liver mets since mets diagnosis, 3 years and 8 months ago. Some on these boards have been living with liver mets 10 years or more.
0 -
Thank you so much for this encouragement. I am so anxious due to increase in tumors after Taxol, now awaiting Liver biopsy on the 20th and another CTscan in sept. I feel devastated. Like I will not be around for important milestones. My youngest is going to be 11in the fall and the older ones 26, 30 and 32. My daughter graduates med school in June 2019. I have waited 6 years to see that happen and have a big party for her.
I could endlessly cry. I feel like I will not get my 24 months... I want 10 years at least. I honestly did not see this coming. Thought they had gotten rid of this nasty cancer. My 5 year anniversary for 2A was supposed to be in november 2018, now metastatic....the worst is the anxiety and fear and complete saddness at this perdicament.
I need to take anxiety meds in the evening and sleeping pills to get a full nights sleep. I am watching my life fall apart. Going from fulltime work to disability. My job is too demanding for me to work and I fear will only increase risk of returns. I want to be a stay home mom for the rest of it and spend all the time I can with family. Too much of my life has been stress and building a career.
I am so thankful for these boards. I would still love to hear from all who had trouble with liver tumors growing while lung and bone stable.
I got alot of bone bain from my last Zometa dose. What are you taking or pain?
Raven
0 -
Serb, my heart goes out to you and your fear of not making it to milestones. I follow a blog / FB page by a woman who is 8 years past diagnosis for metastatic breast cancer. She has had an enormous amount of treatments - both chemo and surgeries, including on her liver and managed to survive a long bout of cahexia. She talks often about her fears in the beginning - and all of our fears are realistic - that she wouldn't see her youngest son graduate from high school. Not only did she see him graduate from high school, this summer, she saw him graduate from Cal Tech, a prestigious private university in California AND her older son and daughter-in-law had a baby, so she is a grandmother. I see many such stories on here, too, so try not to give up hope.
I'm glad that you will be able to spend time with your family and hoping that you find some reassurance and options after you get some more answers. I'm about to turn 66, so my *baby* is almost 37.
I have a 3 1/2 year old grandson and I hope he remembers me later on. I am one of the ones here whose bone and lung mets are stable, but suddenly presented with liver mets this spring. It rocked my world, but I'm an under-reactor, so I sleep well and keep whistling past the graveyard.
If you decide to find out more about Y90, get a referral to an Interventional Radiologist. I've read here that preferably it would be someone who has experience with breast cancer in the liver. I'm definitely keeping this treatment in my back pocket if Faslodex fails (although I think Xeloda is next up).
All the best from Texas to you -
Katty
0 -
serb4. It took about eight months for me to see that my treatments were working. Until then I felt like was on the first step, not knowing if any of my treatments would really work, would my tumors respond? Sometimes it takes a long time to get get answers. We live scan to scan, hoping and praying to eventually see the response we are working so hard for. Going through test, BX, painful procedures, all the time not really knowing if they will work. Of course, we are ridden with anxiety, who wouldn't be?
I do take anti anxiety meds and sleeping pills. But I can tell you it's so much easier now than it was during those eight months of DX, BX, TX and surgeries, all the time wondering if anything would work. Now I'm in a different place. I've seen the response, I'm done with procedures and I am tolerating treatment. I'm able to live in today, I've set my priorities, chosen the friends and family I spend my time with. I make plans with those people and follow through and enjoy it. I've missed out on very little.
You're just not there yet. You will be. Do what you can for today. Even if it includes tears, venting, asking a million questions. Gradually, you'll get a better handle on your circumstances. Remember, sometimes it's just not time yet to know the answers you're seeking.
0 -
Kattysmith
I see you are from Tx, my wife was just diagnosed with Mets to the liver and bones, we are looking for second opnions, was wondering where you are being treated ?
Thank you
0 -
Texans1 I am in the Dallas area. I went to MDA first but I have a local MO. She is continuing with the TX MDA prescribed. I have not been back to MDA since December 2016. When I have to change TX I may go back. The y90 was my local MO idea. We are fortunate to have one of the best IR in Texas, right here in Dallas. He specializes in y90.
0 -
katysmith if you do decide to check into y90, I can give you the name of my IR. He's here in Dallas and is well respected.
0 -
Muddling- How are your liver mets doing on the Taxol, do you have extensive liver mets?
Kattysmith- THank so good to hear from long time survivors!
JFL- What chemo treatments helped your liver mets? How many treatments before seeing NED and tumors shrink?
Girls since switching over to anthracyclines I findmy stomach and intestine are awful. I have pain and loose stools for a whole week after the treatment. How is this possible for 5 more cycles. They gave me antiemetics and steriods but the diarrhea wasnot good. Do I get a break befor my next dose on the 22 of august?
0 -
thank you JFL for your reply!! I wasn't familiar with SBRT but I looked into it some and sounds like a good option! I have four mets but they are large but still within the parameters I think .. I have to wait andconsult with IR to see what they recommend .. even though I sometimes feel they usually steer their patients towards what they know best and to the available technology in the hospital, not necessarily towards what's best for the patient.
Serb don't give up .. you'll have time to witness many more milestones and cherish the ones you already were there for .. that counts too!! I totally feel you .. I have a little boy who'll be two in a couple of months and I look at his beautiful, unknowing face with endless questions about the future and how much of it I'll be around in "good" health to share with him and enjoy. We have no choice but to live scan to scan, hoping and praying that something works, believing that we can get the longest run possible out of each treatment we take... one day at a time.. that's all we can do. Thank you Grannax for your inspirational words .. touched me to the core
0 -
Raven, I finished my Taxol at the end of March. At that time my liver mets had gotten a bit smaller. My breathing troubles had gotten better and my "innumerable" bone mets were slightly improved or stable. I've been on Ibrance/Letrozole since then with generally good results but a possible new spot on bones and a possible compression fracture on T-11 (from previous damage) as of scans this month. Ouch. I have uncomfortable side effects from the Letrozole but I'm trying to deal with them since I hope and pray this treatment will work for a long time. I have four liver mets that the doctor mentioned and that are in the scan reports.
I hope you and your doctors will get the right treatment in place and that they can help lessen your side effects right away. Keep us posted.
0 -
Serb, I should clarify, my liver has never been NED (no evidence of disease) but does go into NEAD status (no evidence of active disease), meaning there are lesions but they are metabolically inactive and dormant or dying. One would need to use PET scans to show metabolic activity.
All but one of my treatments worked well. I had large shrinkage from Aromasin/Faslodex combo with Ibrance added after the first 7 or so months (worked for 15 months), Xeloda (worked for 14 months) and Abraxane (took for 7 months and moved on due to side effects and possible but not confirmed resistance slowly creeping in) and now good results on Doxil (5 months and going strong) + recent Y90 radioembolization. After I became resistant to my initial hormone treatment, I tried Afinitor/Aromasin for 3 months which did not do enough to overcome the hormone resistance.
The most effective of all treatments on my liver mets was Xeloda (pill form of chemo, no hair loss). It is known to work well on liver mets. I also found Xeloda the most tolerable for quality of life and preferred it to even hormone therapy. When I started Xeloda, my liver was at its worst and was 70% mets. Xeloda shrunk the tumor load down to 10% that remained metabolically inactive for over a year. Xeloda is a second generation, targeted (much less harm to healthy cells), pill form of 5-FU that is inactive when taken and is then activated in the liver itself by the body's liver enzymes. My liver has never gone above 25-35% or so tumor load and my progressions have never been as aggressive or explosive since then. My treatments have worked really well - until they don't, if that makes sense.
Also note that I was working full time at a demanding job, raising my infant, eating normally and running 3 times per week when my liver was 70% mets. I had no idea I was progressing. The liver is a very tough and resilient organ and one only needs 10% or so of the liver to function. The liver also regenerates itself.
0 -
Great reply JFL! I am copying and pasting these comments for future reference.
0 -
JFL- Thank you so much for this info very detailed and so informative. I will be speaking to my ocl abou this. You also Eripuicin. Did you have a liver biopsy done to assess the. liver?
Raven
0 -
Grannax2, I would like to know who your IR was, for possible future reference.
0 -
Thank you to all of you who have sent your experience and stories to me. They are so prescious and can only be real and so powerful because we all carry the same burden, stage IV breastcancer.
It´s often hard to answer everyone, but I do read everything and hope you all know you have helped me tremendously going through this, I am only 3 months in the game and we still don´t have all the answers to my liver puzzle.
But I played in a 9 hole golf tournment yesterday, had a blast. And ate a bowl of mexican chicken soup with sour cream, nachos and shreaded cheese. I had a blast and it did me a world of good!! At the club with everyone else.
Receipe available for for those wo dare, it´s a little spicy. I was a week out of chemo. Had no stomach issues so I ate it and it was fine! We are more than bodies we also have mind and spirit and we need to remember be part of the world we live in and interact with our friends and family.
Have a great day ladies,
Raven
0 -
Lulubee. His name is Dr. Van Meter, he's in Dallas. Ill look up his number.
0 -
Travis Van Meter, MD. mtvir.com/drtravis. He has his main office in DeSoto, Tx, Dallas suburb. But, practices in several Dallas hospitals. He specializes in oncology.
0 -
Thanks, Grannax2!
0 -
Raven, yes I had a liver biopsy a year ago to determine whether I was no longer ER+. Despite being resistant to hormone therapy, I am still ER/PR+ and was also HER2 equivocal (++2,exactly the same as my early stage BC profile in 2006). My sample was then sent for a FISH test which came out negative for HER2. I had planned to send some of the sample off for Caris molecular genetic testing but the pathologist botched the sample and there was nothing left for Caris. When I was diagnosed with mets in 2014, I had a lymph node biopsy only.
0
