How are people with liver mets doing?
Comments
-
Hi
So many thoughts. Im on a single treatment of xeloda.
Why do think a onc wouldn't pair it. They only mentioned pairing it with trial med. I would not be able to tell if I had a sugar pill instead of the medication.
The combination of medications and how they choice is the most confusing about treatment. Very frustrated.
I definitely am worried about my liver. Do any of you with liver mets have a gastroenterologist as well.
I also wonder if removing the axially lymph node is necessary as it was the start of my disease spread.
No nodes>skin mets>node>then node and liver mets.
Another confusing thing. For the skin mets they burned the crap out of with Rads. Now they keep saying lets see what the meds can do.
I need a precise plan sick of the wishy washy bs cancer brings.
0 -
Hello everyone. I have never posted on this thread before bc I have not had liver Mets as far as I know. I've been reading a bit bc I am having liver issues which is really confusing and scaring me a bit. I've had bone Mets for 6+ years. I had a scan recently where it said "worsenIng cirrhosis with small amt of ascite, extrhepatic and peritoneal" and also shrunken and atrophic R kidney. oncologist said about the cirrosis he wouldn't put too much weight on it and there is change in the texture of the liver but he doubts cirrosis. Well after that was when I read the report and saw the ascites. I have wondered for 3 months now why I am gaining weight and it seems to all be in the belly. Went up a size in pants. And he did not even mention the bad kidney! Not sure exactly what atrophy means but it sounds to me like the kidney is shot. The last scan before that was liver normal, kidneys normal. Granted that was year ago. I'm feeling urgent to get on a treatment because I want these ascites removed, but scared that anything I take will hurt my liver even more. Has anyone had ant similar experience or any thoughts at all? Also about 3-4 months ago I had BP of 200/120. Craved dill pickles and the juice like crazy. Still do. It's down now with meds but I really don't know how long it was high like that. All I can say is less than a month. Maybe that episode really did some damage. I've been loading up on milk thistle, ALA, NAC. Ascites seem to at least not be getting any worse but I'm obsessed with looking at it. Thanks for reading the long post! Wishing you all well with this emeffing sh#@ dz.
0 -
Im having trouble up dating my treatment info. I have been on letrozole, exemestane (alone, refused affinitor), ibrance/faslodex, Xeloda. XGEVA monthly since the beginning. Thanks.
0 -
Probably some of you remember about a month ago I was in a fashion show. During the day of the show I was interviewed. Now my interview is on u tube. I aim going tip try to type the link. If I get it wrong, you might try to find it by putting in my name Vicki Medlin or Say Yes to Hope, non profit founded by Suzanne
0 -
I got it to work on the liver mets local treatments y90 etc thread. But not on this one.
0 -
Grannax2-
I just viewed your video with the link you posted !!!! WONDERFUL !!!!! Thank you for doing this to educate others. I have liver mets, but have not had the Y90 treatment. When we first found the met in the liver my MO used Tamoxifen for a couple of months which shrunk the tumor considerably. Then we changed to the treatment I am on now- Letrozole and Ibrance with Lupron ovarian suppression. My scans are staying "stable". I knew nothing about Y90 at the beginning of all this and my MO did not mention that option. Would it have been an option in my case? I don't know.
You looked great and I am glad you got this opportunity.
Thanks again for representing all of us with MBC.
0 -
jfl- oh crud! Reading your last post and checking signs of low hemoglobin I am willing to bet that’s my issue today!
I did abraxane and it tanked all my blood cell counts. I had two bags of blood in one day. About five weeks later I started ac combo and day seven after the treatment I was in the hospital for low red and white blood cell counts. I did get another two bags of blood and a bag of platelets.
Tomorrow will again be 7 days after my second ac treatment and when I get up I get short of breath and cough.
I had the same deal with ice in the hospital. I hate ice and cold water too. All I wanted were cups of ice to suck on. I see odd cravings is on the side effects list like wanting to eat dirt, mud or charcoal so I’m glad I just want ice, lol!
Transfusions are easy Peasy but just take long by the time they match it and check it. It’s better to do lab the day before you go for the transfusion bc then the blood is there and stored and ready.
Glad Doxil is going pretty well for you. I follow along with you since I’m on ac and look at Doxil as an option.
Good luck and I know you will feel better afterwards.
Sara
0 -
jfl- oh crud! Reading your last post and checking signs of low hemoglobin I am willing to bet that's my issue today!
I did abraxane and it tanked all my blood cell counts. I had two bags of blood in one day. About five weeks later I started ac combo and day seven after the treatment I was in the hospital for low red and white blood cell counts. I did get another two bags of blood and a bag of platelets.
Tomorrow will again be 7 days after my second ac treatment and when I get up I get short of breath and cough.
I had the same deal with ice in the hospital. I hate ice and cold water too. All I wanted were cups of ice to suck on. I see odd cravings is on the side effects list like wanting to eat dirt, ice or clayso I'm glad I just want ice, lol!
Transfusions are easy Peasy but just take long by the time they match it and check it. It's better to do lab the day before you go for the transfusion bc then the blood is there and stored and ready.
Glad Doxil is going pretty well for you. I follow along with you since I'm on ac and look at Doxil as an option.
Good luck and I know you will feel better afterwards.
Sarah
0 -
Thank you Candy. It feels very gratifying to share it as much as possible. If it impacts only one person or doctor, that would be a blessing to me.💞
0 -
Thank you Grannax2 for your story and stepping out of your comfort zone. This video is so well done.
0 -
Grannax,congratulations! That was a great video! Thank you for going out of your comfort zone and sharing your story! It’s a big deal! You have blessed all of us💜
0 -
Funthing42, there are trials where Xeloda was combined with Taxotere or something else but in practice, it is nearly always given alone. It is a powerful medicine and no need to worry you are not on something else. Not only is it powerful, but I found the side effects very tolerable and had a great quality of life on Xeloda.
HLB, your instincts seem right to investigate the liver findings further. I am surprised the MO was so nonchalant about the results. The liver changes you describe could be caused by cancer in liver or somewhere in abdomen, treatments for cancer such as chemo or an unrelated issue such as nonalcoholic fatty liver disease, etc. It may be nothing to worry about but is worthy of further investigation. Some of the side effects - ascites, high blood pressure and/or kidney atrophy, could be caused by something being blocked - hepatic portal vein, gallbladder duct, bile duct, kidney blockage, etc. Can you get a second opinion or speak to the radiologist who actually performed the scan?
Skitz/Sara, thanks for your email re your transfusion experience. My MO also mentioned it might be a good idea to do the testing the day before to avoid an extra few hours of waiting. I think I will do that!
0 -
Thank you Bella and Sandi.
0 -
Thank you Bella and Sandi.
0 -
grannax, that was beautiful. YOU are beautiful.
Sunset
0 -
JFL thanks for the response. I think you are right about all of it.. I am going to get another opinion. The oncologist said no cancer in the liver at our appointment. Then when I saw the report I called him and said I was concerned about the ascites. He called back 6 days later and I said if they're wrong about cirrosis then why do I have fluid. He said cancer pts get it. So I said well then where is the cancer? He said maybe ovary, did I have a brca test. No it wasn't recommenede at the time. I said why didn't report say cancer in ovary or somewhere. He said you have to be looking for it. I said maybe you could look at it again. He said "I didn't see anything" . Lol ok bye. It just goes round and round with him! Whether it's cancer or cirrosis that is my main concern right now. His main concern is progression in bones which I've never had any symptoms from and seems like the usual for me. It's annoying that he's brushing it off but if he doesn't think it's cancer he doesn't care it seems.
0 -
hlb what type of scan did I you have? I think MRI shows more details in the liver. Sound like you need clearer answers for sure.
0 -
Hi grannax I had a PET/CT. I agree. Meanwhile the new treatment is going at a snails pace as usual. Some guru came in to do a conference about endocrine resistance Thurs, so he wanted to see if he could get any ideas from that. Or I could do tamoxifen or abraxane. His nurse coordinator has been off with a fam emergency, so I guess no one is capable of setting up appts?? It was 9 days ago we talked on phone and I said ok let's do abraxane and get a port scheduled. He said she wasn't there that day but he was repeating everything and writing it down. Never heard from her so Thurs I left vm saying I thought doctor told you I needed things scheduled. Secretary calls me back and says she's been off all week but she will see that someone calls me. That's when he called and talked in nonsense gibberish and won't make port appointment til sees what guru says. I stressed that I was feeling urgent because I want this fluid resolved. He just made his hmmyea sound like yeah ok. This kind of nonsense happens every time I have to change treatment for one reason or another. Last time I went 2 months bc they sent script to specialty pharm who said my copay was $1190 for 3 week cycle. Oh no problem. After multiple run around I find out they have it right there at the hosp Pharmacy for $200 copay. Geesh! Thank you for the response grannax and to everyone for putting up with my venting.
0 -
Oh grann that video was AWESOMESAUCE! And all the family pics were great. I'm so sorry about the loss of your husband. Pancreatic cancer is so evil. Just makes me so mad sometimes. My mom gets esp mad when someone calls asking for money for any kind of cancer. She almost screams at them where's the cure!! After all this $ year after year! I feel bad for her and my dad.
0 -
HLB, it can be so frustrating getting the runaround. I have learned I can't trust anyone at the end of the day and must advocate for myself. It shouldn't be that way. When I get the run around waiting for insurance preclearance or something else, I will call all parties involved at least once a day, maybe more, until someone finally does their job - doctor's office, insurance, specialty pharmacy. I try to annoy them into taking action
While they go to lunch and they go home at the end of the day with their families, we still have cancer. Our cancer day doesn't end when we are off work. It sounds crazy that no one other than a nurse who is out on leave can schedule an appointment for you. If need be, you can start Abraxane without a port and have one put in later to avoid further delay. It is a short infusion - mine was 45 minutes, plus 15 minutes of premeds. I believe I stopped taking premeds after a few sessions and then it was only 45 minutes. I did it every 3 weeks. If you do it weekly, the infusion may be even shorter. I did Abraxane for 7 months and didn't get a port. I still haven't had a port put in and have been on Doxil the last 7 months after I stopped Abraxane. Ascites would usually be treated with chemo, especially if you have already progressed on hormone therapy. Not something to wait around to treat. I sometimes feel that the medical staff see us as a number and believe we are going to die anyway so don't see each individual decision and the urgency of those decisions as that important at the end of the day. Sadly, some medical staff write us off. It is not their place to do that.0 -
I had SIRT (Y90) on Friday. The radiologist said I may feel crappy for a week. That was the understatement of the century! Not even chemo made me feel this bad so it better be working. My whole liver was treated plus a third dose for the extra artery my liver has. Onc had then suggested Carboplatin on it's on then possibly adding Abraxane. Anyone else had this regime?
0 -
HLB... How incredibly frustrating for you! At my last doctor's appointment I almost checked out not feeling comfortable with our plan. She wanted to wait 5 weeks to start my AI because she needed follow up blood work or some crap... When I expressed that I was not comfortable waiting 5 more weeks to start treatment she gave me the same "It will be fine", "OK", "yeah", "I understand how that's frustrating" crap. I just could not imagine going home and sitting around for 5 weeks stressing and doing nothing.I had a moment of clarity and sat down near the check out and told them I wasn't gonna leave until I talked to the doctor again. I talked to her about 15 minutes later and miraculously I started my AI already ( I'm on my 3rd day, she let me start at the same day that I put my foot down) and I'm just waiting for the pharmacy to acquire my Ibrance.
Like JFL said, you really have to be your own advocate. This forum has taught me so much in just a few weeks. I had never heard of Y90 before coming here because nobody ever brought it up to me before. Google can be so incredibly confusing. Anyway, I hope you get it sorted out. I agree with the call until you're in annoyance Tactic.
0 -
HLB, I noted you are doing milk thistle. I too was using milk thistle until I found out that it makes our livers metabolise treatments too quickly. I am now on glutiathone instead as recommended by my pharmacist.
0 -
Tennille. Are you saying they did both lobes of your liver at the same time? That is just wrong. It goes against protocol and research. You need to be closely watched and I wouldn't even consider taking any chemo for a month or so. Your liver needs to heal. It might be wise to go to another IR for an opinion and to ask if there's anything that can be done to help you heal. Please let us know how you're doing.💞
0 -
Thanks HLB. I hope it can be shared to help other patients advocate for themselves.💞
0 -
Grannax2, Yes they did both loves at once. Larger dose for the left lobe as it holds the majority of the mets and a smaller dose for the right as it only had a few tiny ones. Then a third dose for the extra artery I have in my liver. All scans post treatment showed SIRT went where it was meant to. They want to start chemo again in 2 weeks if bloods are good.
0 -
I'm not a doctor, but everything I read and was told says that it's not safe to do do it like that. You know why, because a large percentage of patients DIED that's why they stopped doing both lobes at once. I'm not just writing scary words it the truth and you can read it for yourself. No wonder you're having trouble. Please reconsider starting chemo so soon. Where is your IR?
0 -
I echo Grannax’s concern. I didn’t think both lobes were done together anymore due to its risks. I like to push the envelope and didn’t take time off chemo for Y90. That worked out fine for left lobe but caused me some major issues with my chemo side effects for the right lobe, which was performed first. Be careful about chemo in 2 weeks. Our livers can take a lot but there are limits. Were they able to do both sides at the same time due to how few mets you have?
0 -
Wow Ladies you knock my socks off.
JFL Thank you for the response it means alot.
Grannax gorgeous and brave. Thank you.
What I have had the most regret is not following my instincts. Which become heighten when our bodies have disease. Do not let doctors drag their feet or pat you on the back. If you do not get what you want go elsewhere quick.
I was extremely trusting even when my body told me something else.
0 -
Thank you funthing. I agree with the instinct thing.💞
0
