How are people with liver mets doing?
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Amazing development, Miao!!
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Grannax, if your MO doesn't respect you, how can you respect her? A rhetorical question, but one patients often push aside because we're taught not to question authority and who has more authority in our lives right now?
My first oncologist was an SO but I didn't know that because she designed my chemo treatment plan with major mistakes - primarily leaving out a neoadjuvant drug considered protocol for triple negs. Everything happened so fast I didn't know about SOs vs. MOs vs. ROs ... When I had a consultation months after surgery, the consultant couldn't figure out why I hadn't had many more lymph nodes removed, why the MSOPITA insisted on X during radiation or why she left that drug out. So, with my permission (!) he called her. He later told me it was a phone call he'd never forget. But her rationale was she didn't like the drug's cardiac SE profile. I have no heart probs and a history of normal echos. She believes X enhances rads and for some cancers, it does. Breast cancer isn't one of them. No known benefits with an almost guaranteed increase in severity of SE.
The consultant recommended I change to an MO - the MSOPITA also was trying to dictate my rads. But she seemed so friendly and so many people liked her! Their lives weren't in her hands. Mine was.
MSOPITA = Medical surgical oncologist Pai
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Grannax, if your MO doesn't respect you, how can you respect her? A rhetorical question, but one patients often ignore because we're taught not to question authority and who has more authority in our lives right now?
My first oncologist was an SO but I didn't know that because she designed my chemo treatment plan -- with major errors. Primarily leaving out a neoadjuvant drug considered protocol for triple negs. Everything happened so fast I didn't know about SOs vs. MOs vs. ROs ... When I had a consultation months after surgery, the consultant couldn't figure out why I hadn't had many more lymph nodes removed, why the MSROPITA insisted on X during radiation or why she left the red devil out. So, with my permission (!) he called her. He later told me it was a phone call he'd never forget. But her rationale was she didn't like the red devil's cardiac SE profile. I have no heart probs and a history of normal echos. She believes X enhances rads and for some cancers, it does. Breast cancer isn't one of them. No known benefits with an almost guaranteed increase in severity of SE. And she felt I only needed the sentinels removed because my only known positive node was a sentinel. Guess what's positive now?
The consultant recommended I change to an MO - the MSROPITA also was trying to dictate my rads. I put my foot down and refused to start them until the rads w/ or w/o X issue was resolved.
But she seemed so friendly and so many people like her! Their lives weren't in her hands. Mine was. She's still winning popularity contests at her employer and likely still telling the patients rude enough to ask questions that their questions are a time-consuming nuisance and demanding apologies when they exceed some imaginary monthly quota of things asked but never answered.
MSROPITA = Medical surgical radiation oncologist Pain in the A..
If you're not comfortable. If you can't ask questions or get answers. If a doctor of any type dislikes well-informed patients or literate ones, well, the first phrase matters most, IMHO.
My story? It's true. I look back now and want to tell the woman I was then how naive, stupid and pathetic I was. But I also know those things aren't really true. I trusted my oncologist but I still asked questions. Her attitude about that and attempts to shut me down led to more questions. I ignored my gut. That's where I get mad at myself.
I hope you had a wonderful weekend and can enjoy some much deserved bliss for awhile. When it wears off, don't forget to take care of you.
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Feline mom. I'm back and wil post lots of pics. Or you can lookup SMGLOBAL CATWALK NYC 2019. There are lots of pics on there of the Fashion Show. Also, Say Yes to Hope has some of the Survivor Models "ME" on the runway. The seamstress, hairdresser, makeup artist and jewelry lady dolled me up pretty good.
You're right, I don't trust her. I feel your pain. Thanks to this site and my own experience I am knowledgeable and literate. I will continue you stand up to her and trust my instincts. My reluctance to change is because she agreed to put me on the TX I wanted. Who knows what a new MO would do?
I started X on Monday. On the X thread I've gotten a lot of encouraging examples from many who have had years of this TX and even liver mets responded. Plus lots of tips on how to manage SE.
I pray it works for me. Next scan April.
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There are hundreds more but I don’t know how to share more than one at a time
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Grannax, that second photo of you is great. I hope you really enjoyed the catwalk.
I'm glad you're having the treatment you wanted and I pray the Xeloda really works for you.
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Grannax you look faboulous! Congratulations
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Grannax you are glowing! Wish you the best💄📿💗
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grannax you are gorgeous!! Also, nice eye candy on your arm.
Sunset
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Grannax! The photos we've been waiting for! You do indeed look MAHVELOUS! Thank you, thank you for representing ALL of us!
Saw MO today. First step is PET scan to check on tumor activity other than liver. If no new organs involved and bones don't light up like a Christmas tree, will have Y90 on left lobe of liver. Will also be starting Doxil. No more Xeloda; I did get almost a year out of it. Wanting to fit all of that in before Disney trip on April 9th.
Sending hubby off to New Zealand for the month of March. Have lots of friends here who can help with rides to procedures, etc.
Adjusting to yet another new normal. This will be my first IV chemo since Stage I in 2014. Not thrilled, but it's once a month and hair sparing.
Hope everyone is soldiering on with minimal aggravations. Love MJ
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Grannax,
OO LA LA! Gorgeous!!!
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You look beautiful, Grannax!
PB
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MJH How did you find out about y90 so quickly? Will that be done prior to starting Doxil? My doc said Abraxane for fourth line, I'd think I'd rather take Doxil. But, first, I'd like to get a year out of X. Thanks everyone for your compliments.
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Grannax-this all started with a routine follow up liver MRI ordered by my IR. (right lobe Y90 done May2018). I had the recent MRI on Wednesday Feb 13th. The results were in my online chart on Friday the 15th. I called my IR on Tuesday of this week and she consulted with my MO. She told me that she would like to go ahead with the left lobe treatment. MO just wants PET to make sure mets are not going nuts in the bones, or have started up elsewhere.
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Got the call today from MO, definitely in my liver. Had biopsy yesterday preliminary findings are positive. Also had 4.75 liters drained from abdomen. No it wasn’t constipation, it was ascites 😡 AST is 50, ALT is 35 bilirubin is 1.6. Nothing crazy off the charts but it’s there. Also mets are diffuse. Lesions per se weren’t showing up on scans. Kept coming up as cirrhotic on scans but enlarged spleen told another story. Still highly ER+ PR+. Waiting on HER2. Onc can’t understand why endocrine therapy isn’t working with such a highly hormone driven cancer. Starting Eribulin (Halaven) on Tuesday. Liver sample off to FoundationOne for testing. Scated
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Grannax you look great! Love the pics. I bet & hope it was lots of fun.
Hello to all. I scanned a few pages trying to catch up a bit. I pop in every once in a while. Doing ok but waiting on some scan results which is nerve wracking.
A member of our local stage 4 group passed away this week. She was young and so full of life. Those are tough losses.
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MJH IR moved fast on this for you. I'm so glad to know it's even possible to have a second y90. You go girl.
Hi Lumpie glad to hear from you. Scanxiety
Griff Grrr I hate hearing about more mets in your liver. It's scary to think such a small rise in ALT can mean progression. Maybe you are ESIR. Genome testing should tell you. If your tumor is resistant to estrogen blockers, you won't respond to them. Mine is too.
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Grannax- I was just wondering about you this morning as I ate breakfast. Then I logged on and saw the pics. WONDERFUL AND GORGEOUS !!!!!! Thank you for representing all of us.
Grriff and Lumpie--Prayers go up for you both.
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Grannax2-do you have the ESR1 mutation? What treatments have worked for you? My head is spinning. I have three teenagers that I want to see get old-Jill
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griff Yes, I do. Ibrance/femara worked on my lung and chest mets for almost two years. My MO said it was only Ibrance that worked, not AI. But.,FDA requires that docs have to prescribe both. Go figure.
Then I had five horrible weeks of insurmountable SE from Afinitor /aromisin. So, I'm sure that didn't work on my growing mets.
Y90 is the only TX that worked on my liver mets. Liver mets are stubborn, mine did not respond to systematic treatment.
I'm on my third line TX since I was. DX with MBC in 2017 .
M
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griff Yes, I do. Ibrance/femara worked on my lung and chest mets for almost two years. My MO said it was only Ibrance that worked, not AI. But.,FDA requires that docs have to prescribe both. Go figure.
Then I had five horrible weeks of insurmountable SE from Afinitor /aromisin. So, I'm sure that didn't work on my growing mets.
Y90 is the only TX that worked on my liver mets. Liver mets are stubborn, mine did not respond to systematic treatment.
I'm on my third line TX since I was. DX with MBC in 2017 .
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for what is worth....I have the ESR1 mutation and Letrozole, taken without ibrance, got rid of a 2.5 cm tumor in less than 3 months. To this date it has not come back. Letrazole worked for 18 months before I moved on to Faslodex and ibrance.....
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Does Y90 work on diffuse mets or does it have to be a lesion they can see on imaging? Last time I mentioned liver ablation/local liver treatment he said no because I have bone also so it had to be treated systematically-Jill
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Does Y90 work on diffuse mets or does it have to be a lesion they can see on imaging? Last time I mentioned liver ablation/local liver treatment he said no because I have bone also do it had to be treated systematically-Jill
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mia, happy it worked for you. Genomic testing is not the standard of care, yet. I hope it will help eventually. Everyone's tumor is slightly different even if pathology looks exactly the same. You responded I didn't.
Griff I think your MO is treating you very aggressively. I see you had AC and that she has changed you to Faslodex w Ibrance. That's what my report said to do, my MO did not do that because of her opinion that Ibrance alone was working. That is unfounded, she doesn't consider genomic testing to be real science yet. However, you don't have your results yet , The wait and see stress.
Y90 can and is done throughout the USA on those of us that have active disease in other organs. It is only a local treatment. My experience has shown me that both systemic and local treatments at the same time have worked for me. I stayed on IL when I had both y90.
You may not be a candidate, you don't know that part yet . More waiting. But, your bone Mets, and your TX should not keep you from having y90 from an experienced IR.
Mia I'm not as well educated in the science of all of this as you are. All I can do is share my experience and the knowledge I do have.
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Where do you find out if you have the ESR1 mutation??? On Foundation One studies?? I looked at my F1 report and it doesn't say anything about ESR1. My report just says BRCA2, CKDN1B, and MAP3K1. Whatever that means. No one has really discussed my results with me. I got a copy from the Foundation One company.
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