How are people with liver mets doing?
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Many- God sent angels and more to you..Happy for you and your family...Go enjoy every single day!
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I am thankful to everyone for there warm messages to me
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Just saw this, very big congrats and hugs Many!! I love hearing good news!!
Alissa
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many & others w/ good reports - - thanks for sharing the great news - y'all get the credit for the giant smile on my face! congrats & enjoy!
sending my best to everyone for a year filled with great reports! I'm not checking-in very regularly, but I do try to 'catch up' & so appreciate hearing about everyone's experiences - the good & the setbacks....
thank you for contributing here - you've made it a phenomenal resource!
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ct scan was all clear. Now onto my brain MRI
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If I may ...
leftfootforward, congratulations on your CT!
And good luck on your MRI! Let us know how it goes.
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left foot
Hope your MRI results are as good as your scan results or better!!!
Bab
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thanks everyone.
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Leftfoot, great news on your CT wishing you the same results for MRI . yayyyy!
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Thinking of you leftfoot, Best wishes and keep us posted!
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left foot great on liver. Woot. Now the brain. Yep.
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here is an interesting link from today's NY1,
http://www.ny1.com/nyc/all-boroughs/health-and-med...
I am a reader, not much of a poster, and do not miss any of your posts.
Pray for every sad and happy for every good news I see and wish we all see the day when Obama wins the war on cancer
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For those of you who knew Leah_S , i regret to inform you of her passing few days ago. May she rest in peace and may her family and friends find solace that she is at last at peace. God bless you all.
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Thanks Woody, So sad to hear this! Hugs to all of us and to her family especially!
alissa
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So sad to hear about Leah's passing. She was such a fighter, always positive about taking on new treatments and with a great sense of humour. She will be greatly missed but at least she has no more pain. Rest in peace Leah. Thoughts to family and friends x
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hi all. Had first ct scan Thursday hoping gut results Monday when i see Dr. I am nervous and scared, hoping for good news. Fingers crossed. Hope you all are well
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Good luck on your scan results Lvn i hope they are very good . Keep ys posted. Fingers crossed
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Lvn-hope you get good scan results!
Babs
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Good luck, Lvn, we'll be thinking of you.
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hi all. Well results are ad follows, one lung lesion is gone, the other one had shrunk x3. Liver had 40% disease now is at 10%. So Dr says that is good and I am doing better than average.
So why do I still feel like the walking dead? That's good news right? I guess i was hoping to be ned already. Thanks for the replies.
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Yes, LvinAZ, that is great news! It really, really is! I get how you feel, though. My liver went from over 50% to disease to a little less than 50% to stable, not less, just stable. This is great news my doctor says. Stable is what we strive for. I think yes, but I was hoping for better. So be so excited...gone and shrunk and 10% disease is superfab when the goal is stable. You overachiever you. I might have to be jealous.
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Hi, Livn. Glad to hear you got good scan results. Your chemo is working! My onc says a person doesn't have to be NED to be doing well.
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Livn,
Great news!! Really great. The disease is retrieving even if not gone ,this is really a good results. Stable with decrease this what every patient and doctor hope for. I hope you continue to shrink tomurs and keep doing well.
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thanks ladies. It's so good to have you all for support. I hope to are all well
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Lvin
So happy for you-decreases are great!!!! You need to do the happy dance now!!!
Babs
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Heck ya Lvin, that's GREAT news! Anything working backwards is fantastic! Happy happy dance!
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tldr: 1st change in therapy & could use some help… if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? (I travel a lot, so location is fairly open). THANK YOU!!!!
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I'm sure this is not rare, but my 1st tx change, so probably over-reacting & could use some help… why does it always feel like a sick-twisted-crap shoot? thank you for listening & helping if you can!!
great news 1st - awesome brain mri!!! near complete resolution of both lesions w/ no other anything!
ug news - last PET showed "suspicious" teeny portacaval lymph nodes w/ SUV 5.0. plan: watch & repeat PET & add MRI in 2 months.
2 months later...
PET: no significant change to "PRESUMED" metastatic lymph nodes: same SUV 5.0 & only mild enlargement in 2 months
MRI: "PROBABLE" lymph node metastases measuring 9mm correspond w/ PET & new "INDETERMINATE" 9mm hyper-enhancing lesion on liver
PLAN: as it's slow-growing, watch & wait w/ MRI at 3 month intervals
so, is it progression? small, slow-growing, SUV 5.0, asymptomatic - "presumed," "probable".... who knew there were shades of progression w/ HER2+ disease?
tdm1 is 2nd line therapy per standard-of-care. med onc says no tdm1 'til growth accelerates -- even it it grows slightly each scan, no change.
no biopsy - as it's so slow-growing it most likely hasn't changed receptor status.
name of the game is stall... manage disease while preserving best QOL - aka palliative, I get it. if I can get 3+ more months out of herceptin/perjeta, isn't that better than switching now? conservative, but perhaps wise.
OR, call it progression, switch to tdm1 & aim to get disease firmly controlled, asap? no promises it'll work, that I'll tolerate it (generally is well-tolerated) & likely increase SEs. I already have brain mets, so no worry about it 'spreading' to my brain.
I can build strong cases for both options. I'm looking for a 2nd opinion & will try for tumor board, if appropriate. anyone familiar w/ similar case? I realize there's no urgency, but I'd like to get informed asap. if you're willing to share & you have a favorite, HER2+ specializing med onc, would you please PM their name/hospital? (I travel a lot, so location is fairly open). THANK YOU!!!!ps -- also, anyone doing tdm1+perjeta?
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spicy- that's the frustrating thing with stage 4 isn't it. There is no right answer.
Tdm1/ perjeta probably my next line of treatment should my current one fail ( Xeloda and herceptin). If I stay stable long enough tykerb might become an option again ( likely not).
My MO ( all 2 of them) seem to be of the opinion once you have to change Meds the one you leave isn't viable in the future.
My MO also viewsany growth as progression and have been very proactive.
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thank you leftfoot, very much appreciate hearing your experience. sounds like you've got a good team going.
hate how luck-of-the-draw can make such a crucial difference in medical care. met with a super nice palliative care doc who may be able to help me more gracefully navigate 2nd opinion. I really freaking LOVE that specialty - always feel like they really are actually there to help find solutions. haven't more than a few times, but they've managed to find something they could help me with at each appt. such a tremendous relief. wished I'd known to ask for the referral earlier.
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Hi spicypetunia,
I too love the palliative care speciality and my palliative care doc of nearly 5 years. Well, now he's my hospice doc.
Anyway, he encouraged me to have surgery to get my lung linings sealed and his partner helped me get a drain installed for ascites from liver/peritoneal mets. Though these were expensive and invasive procedures, I am ever thankful to have not suffered outpatient draining for 44 months and 5 months respectively.
I like the both-and approach of palliative care that focuses on my ultimate well being and comfort.
Hospice is under the palliative care umbrella, but Medicare and medical insurance restrictions make hospice an either-or approach - not quite as friendly for the person who still wants to do every possible everything.
blessings for all, Stephanie
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