How are people with liver mets doing?
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Karen, about 10 days ago I had awful pain in the liver area that I've never had. Took Tramadol for several days and the pain disappeared. When I saw MO a couple days later, she said my TMs were still increasing. I got the impression from the discussion she expects Verzenio has failed, but "that's why we scan" she said when I asked. I'm hoping it's gallbladder trouble, but I'm not that "lucky."
Grannax, I'm in your boat "of what's next." After years of bone only being stable, now it's treatment after treatment failing in the liver. I'm glad your daughter will be with you tomorrow. Hugs.
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Grannax and Bliss.... Bliss I see your comment about "years of being stable and now worrying about whats next..." I am sure there are treatments left I mean look at those of us... that have failed 4 treatments in under2 years...and I still believe there are treatments left... even if only a few. Try to stay positive about that....especially since you got years on a treatment chances are better for you guys that, that can happen again.
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Nicole, thanks for the positive pick-me-up! I don't usually throw a pity party, but this morning I did.
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grannax - sorry for the bad news. Maybe your MO will have an outstanding plan on how to move forward. In you pocket for Wednesday.
Bliss, pocket duty for your scans. I hope you are pleasantly surprised.
Pocket duty for anyone else with appointments this week.
Well, no garden fairy here to plant mine, so I have been busy getting my garden ready (late for my area). I'll have my basics planted today or tomorrow, at the latest. Now, for my aching back... lol.
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Bliss and Grannax- I hate to hear of your progressions. Pocket duty for your MO appointments that they would have some more options for both of you. I hate this for you.
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No, Nicole, third y90 is not an option for me my IR says Lifetime max if ittrium Actually, no local TX to liver is an option “100’s of diffuse” mets on last MRI I don’t have the new MRI yet I know from experience that I will never have another Microwave Ablation
Sorry, Bliss I hate that you are in our boat but we are good people and have lots to share
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Grannax and Bliss,
My thoughts and prayers are with you both. I know how scary this can all be. I hope your MOs have some more tricks up their sleeves for you guys that will provide some decent results.
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Everyone- my memory of who is getting what treatment is lost in the abyss. I don’t know why it’s so hard to keep it straight lately. Just know I care.
Bliss- Sometimes it is hard to hope, but I’m hoping for a good report for you! I can’t remember-have you considered a trial? Lots of her2 and many hormonal trials like mine out there that may be the thing that works.
Grannax- that report was a hard one. I care and I’m with you to grieve, process, and be ready to make a new plan. There must be something in your bucket. Maybe a trial. You are strong and resilient. Loved the family pics
Nicole- Sounds like your team is trying hard to help. If you get the samples, how soon will you know if that drug works?
Dee
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Grannax, In your pocket for your MO appt tomorrow. I'm glad you'll have there DD there to listen with you too.
Bliss, Have local liver treatments ever come up in discussions with MO or other providers? Maybe you would be a candidate for one of them. Thinking of you.
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Grannax - sending hope and prayers for treatment options.
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Grannax - I'm so sorry that Halaven didn't work better on your liver mets!!! Thinking about you and praying that your MO will have a good plan. Hugs! Theresa
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Grannax, I’m also terribly sorry about the progression. It’s always so difficult to hear this. My thoughts and prayers are with you as you search out a new treatment. Big hugs from Canada.
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Thanks all, I really feel your support.
Dee, MO said she is looking into trials for me. I know you've done a lot of research on them and I've copied the links you've provided beforr and I thank you for those.
Rosie, we have talked slightly about local tx, but my liver mets are numerous and diffuse. MO said systemic tx would have to beat back the mets first before seriously considering local tx.
Hugs and thoughts of you all.
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Bliss and Grannax, scary times but hopefully your MOs will do their bit and come up with plans. Bliss hang in there until results in. I too had a load of abdipain which turned out to be connected with pleural effusion. Once drained the pain improved massively, so your’s might not be cancer related.
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Grannax...do you have any of the PDL1 gene? If not...maybe that is why Eribulin didn't work well for you? I know it targets that gene and I have that. Thanks for the info about only being allowed to do Y90 in the liver 3 times...I never heard that.
Well going for Spinal MRI with sedation today...and probably now PET in 2 weeks and MRI of Liver...(talked to MO's office about that yesterday so it's being set up)....
I am still not 100% about the Afinitor...I feel like maybe we should go back to the Eribulin bc there is DEFINITELY growth in my spine..it was in pain all night the whole spine...and now i think the C7 got worse bc I had numbness 3 times in both arms
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Grannax and Bliss - you are both in my thoughts and hopes for treatments that will give you some peace of mind and stability of body.
Grannax, I loved your family pictures!
Nicole, I am thinking of you as always and hoping the spinal block will be something workable for your pain! Good RX is another drug discount company you should look into if the samples you try work well!
All the best to each and every one of you.
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Thanks everyone for thinking of me, praying for me and my MO. I had a good day yesterday, in spite of the worries of today. But this morning my nerve has left me. I don’t want to go to my MO. I haven’t even started getting ready yet. Ugh.
I will go. But my strong spirit is not in me this morning. I feel like a weakling. I feel like I need a break from all this. Just for today can I stay in my cozy bed? Nope, I have to go and face this terrible disease head on, AGAIN. I’ve been living this BC and MBC life for 30 years. Ugh. I’m tired of it. So, that’s MY pity party for today.
Rant over. I must at least put clothes on, first things first. Maybe my good attitude will appear by the time I see my doc. Maybe.........
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Oh Grannax praying for strength for you. We with MBC have to have a lot of strength. We have to deal with so much. God must think we are strong to give us this cross to bear. Prayers.
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grannax you got this. Just think about your grandkids that make you so happy.
Thanks Katty at MRI now waiting to be called it. I already know I have progression just hoping it's not a lot. My MO appt is tomorrow
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I know this probably isn’t the right board to put this on but can y’all tell me how y’all found your liver Mets? I had an X-ray at the chiropractor yesterday and it showed an enlarged spleen. I’m worried it might be liver Mets. Waiting to hear back from my oncologist. I had triple negative and was cancer free august 2020 but now I’m afraid it’s back
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hray
Please call your oncologist to get peace of mind. He can order a quick CT of the abdomen and that will determine if you have mets in that area. Hoping it’s nothing.
My mets showed up incidentally on a low back MRI.
Dee
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well all the way to the hospital fasting since last night fir MRI of C Spine and T spine with sedation only to find out the order and authorization was wrong it said only c spine I'm furious right now. The anesthesiologist recommended waiting to do all together so I do not have anesthesia 2 times...I am so mad right now. That could literally take weeks ...weeks to get that scheduled bc its a huge time slot.
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Nicole- That’s just too much. 😢 Hoping you can get it worked out soon. I know it’s rough, but try to let it go and focus on something positive right now. The anxiety and bad mood won’t do you any good. Maybe your new puppy can bring you some joy. Hugs
Dee
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Nicole, that is terrible. So enfuriating.
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oh Nicole, how infuriating! I hope your MO can get an expedited scan organized for you.
hray, you want the "not diagnosed with mets but have questions" thread
https://community.breastcancer.org/forum/8/topics/...0 -
Grannax - Praying for strength today! I so appreciate your post because lately I've felt the same way when heading to appointments, scans, etc. Just put one foot in front of the other and be gentle with yourself. It's impossible to have a good attitude 100% of the time with this awful disease. You have such beautiful grandchildren... think about happy times with them.
Bliss - I hope that scans will show that Verzenio is working. Since you are HER2+, Enhertu could be an option. I was on it for 10 months on the DESTINY04 trial for HER2 low patients. It is a miracle drug for HER2+ ladies.
Nicole - Very frustrated for you! It's great that you caught the error before you had the MRI. Good job! Hopefully the MRI can be rescheduled very soon.
hray1993 - My first liver met was found on a CT scan and confirmed with a liver MRI. I had mets in other locations at the time, hence the CT scan. Thankfully, I have not had symptoms from my liver mets... other than liver function blood tests being a bit off.
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Thanks Ladies...
. Thanks Dee I really am in a bad mood...I need to get out of it.... Also the nurse I don't know at my MO's office tried to tell me (we were arguing) that this test was ordered back in DEC!!!!!! Can you believe that...well just now I went though the MY CHART and found it was ordered on March 19th!!!! I knew I wasn't crazy...and she was wondering why I was (what she called) >>> YELLING at her...well maybe bc you are trying to tell me that this scan was ordered back in DEC and it took 4 months to schedule??? LOOK AGAIN... I was right ...March 19th I sent a note to her in my chart
I am so SICK of having to do other peoples jobs isn't anyone competent today???? UGHHHH
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OH NO!!!! I don’t get it! Don’t they call you a couple days before before procedures??? They should have confirmed cervical and thoracic before your appt. I am so sorry. Once it’s approved and they schedule you, you can call daily to see if cancellations and generally get in a lot faster. I did that. They scheduled my MRI almost 3 weeks out and I couldn’t believe it! That was on a Friday. I called Monday and there were 2 cancellations so I got in that Friday night. I know it’s a longer time slot, but worth a try. Mine was thoracic and abdominal Praying!!!!
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I have found that all of my appointments ( times and days) have been moving without my knowledge. I spoke to someone at one of my visits lately and they said they had noticed it as well. I have no idea what is up. My radiation treatment times changed on an hourly basis. I yelled, told them it was unacceptable ( I work), and I would be showin up at the time they write on the card they gave me at treatment.,
they forget we are people. I am so sorry everyone is experiencing this. Scheduling is certainly something we all don’t need to be a problem.0 -
Thanks Hope
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