How are people with liver mets doing?
Comments
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Bev that sucks...this is what I am nervous about with the Y90....which I am resceduling now as we speak...
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Bev - sorry about the news (AAARRRGGHHHH) but grateful they caught it and you can get back on the table asap and get this thing zapped completely. Praying next one is complete success and recovery is quick
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oh jeez Bev, that's disappointing news. All that pain and having to go through it again. I'm all grrrrrr about it on your behalf
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BevJen, UGH! I'm sorry that you have to repeat the procedure on the same spot! I would make the same decision and I'm glad that you can have it done quickly. I'm very impressed that your IR admitted the error and apologized. It tells me that he is confident and does NOT make these types of errors normally. Despite this very disappointing setback, it's great that the rest of your liver looks good! Hugs!!!
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Theresa45,
I suspect that it was not the IR who made the error, but the fellow who he was trying to teach. There were some words in the procedure room (which I heard despite being in and out) and so I'm guessing the IR fell on his sword for the fellow. I love this doc and I'm pretty sure he didn't make the mistake, but I also love the fact that he's not too proud to apologize for it.
At least I know what to expect and I am hoping that since they just have to do a little bit, it will be less taxing on the old body! Thanks for your hugs.
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sorry to hear bevjen. I can somewhat relate as the fellow who did my spinal for my second child put a hole in my spinal cloud giving me a spinal headache.
Ironically, she was there to do my blood patch to fix said hole and I politely declined her services: the doctors obliged and sent her away.
They are lucky you took it so well.
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Dear BevJen, I am very sad to read you have to go through ablation (in the same spot!) again... but your courage is unbelievable and your decision is very wise - no waiting with this disease, especially these times, when you don't know what and when you get. On the 9th and 11th we'll be thinking of you. Saulius
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I'm so glad you pursued this. Who would have thought? Now I'm hoping that doesn't happen on either of mine. I do think it's admirable that he owned up to the error.
What type of contrast does he use to mark the spot? I'm having the liopiodol procedure today. His PA told me that he uses it so that every bit of the tumor lights up so can get all of it.
I'm two weeks out from MW. I still hurt if I breathe deeply, I'm still sore and I'm weak from being in bed for seven days. If my doc said he had to do these two again, I'd probably burst into tears.💞
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Saulius,
Thanks much. Don't think there's much courage involved -- probably more fear about something spreading that can be controlled.
Grannax,
I didn't really pursue it -- I saw the MRI report, thought it looked a little quirky, and sent the IR an email, but he always schedules an appointment after MRI comes out anyway. I still trust him -- just not so sure about his Fellows at this point. And yes, the fact that he apologized and was sincere about it makes me like him even more. So many docs are so into their own egos that they would never have done that.
He doesn't use contrast to mark the lesions. I don't know why. My first one, in July 2019, was done using CT, and I think it's easier to spot them using that. This one was done with sonogram, and all along he had said that he didn't know if he would be able to see the lesion. But once they got the right area, even I could see it on the screen with magnification. So that wasn't the problem, I don't think (although I see that your IR uses the liopiodol so that it all lights up.)
I'm not happy about the re-do but as with all things breast cancer, I'm just sucking it up and telling myself that it will be better after the I get through the re-do. This time they are using both CT and sonogram, so I'm pretty sure he'll get the whole thing -- it was just the bottom where there was a teeny bit left. There couldn't have been much -- it was 1.2 cm, the ablation area was 1.6 cm, I think, and so they probably just didn't go deep enough with the probe.
Sorry you are still not feeling great, Grannax. I'm now 5 weeks out, and yesterday was the first day that I've been able to exercise without being really tired or sore. So it is a process, longer for some than for others, I guess.
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BevJen, so sorry to hear about the outcome of the ablation. I hope your IR will do the procedure next time and not trust any fellow. Good luck with your next one. It is scary to know that the tumor was already growing, did the MRI show the current size?
I know there was a fellow during my ablation procedure but he said he will be just watching my IR. Since I was under general anesthesia, I don't know who actually did the ablation! My CT scan for the liver is on 2nd Dec. I am hoping and praying that the ablated tumor is gone.
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Taking a moment to go off topic and to wish you and your families a Blessed and Happy Thanksgiving. With all this disease puts us through, looking beyond that to the things for which I am so grateful. I have been blessed in so many ways. My life has been rich and full....even if it may not be as long as I hoped for. Each day I fight this disease, I try to remember that. I know it’s not fair what we go through, we don’t deserve this, but I don’t have the power to change it, just the power to not let it take away all the goodness of this life.
I have the utmost gratitude for this group and all the caring, sharing, understanding and kindness that everyone brings. May God bless you all.
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S3K5,
There were measurements on the MRI, but I don't think those showed the actual tumor at this time but the full area that was ablated. I wish you luck on your CT next week -- hoping that you don't have any issues. As for me, I'll just be waiting for December 11th. I was a little bit down today thinking that I have to go through this again so soon. But I don't really think I have any choice.
HopeandGratitude,
Thanks for your lovely posting. Despite my gloomy mood today, that was beautiful and I think you for posting it.
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HopeandGratitude. Thank you.
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Thanks Hopeandgrat....that was so beautfiul
Happy Thanksgiving to all and thank you for being such good friends to me.
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Happy Thanksgiving, everyone. No matter how different it looks this year. I'm home alone but it's a beautiful day here in Texas. I may get to see my daughter and SIL later today. I'm still not able to eat meat or any strong flavors. So I've cooked a Mac and Cheese Casserole that tastes yummy. Has anyone else had their tastes change ? I'm not on chemo yet but it almost feels like that. Of course I was on liquids for almost a week after my MWA. I'm eating now but only certain things, mostly carbs. My smell is off too. Meat smells so bad to me I don't even want it near me.
The things we go through to try to fight this disease are just not easy. Somehow we keep on keeping on.💞
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Grannax- Hugs
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Hi, Grannax,
Thinking of you with your next procedure next week. Good luck with that.
I really do think that when they mess with your liver, your tastes change for a bit. Did you have that reaction when you had your Y90s? I remember it from my July 2019 liver ablation, and I'm experiencing the same thing now, too, even being 5 weeks out. I think these things can affect each of us differently. Last evening, I put in a small pork roast with chipotle-style sauce on it. It had looked good when I bought it, but when I put it in the oven, I told my husband that there was no way I was going to be able to eat it. I've been more on the "if I don't feel like something more substantial, then it's an ice cream day."
Hang in there, Grannax. And good luck on ablation #2!
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Hi everyone
I haven't checked in for a while and was saddened to see the trials and tribulations many of you have gone through. Looking back my time would have been better spent checking in with you guys instead of trying to follow the regular news!
Meanwhile, as I wrote before I wrangled myself a free patient advocate access to the San Antonio BC symposium --both the patient advocate program and also the real meaty academic symposium. Feel free to private message me if you have a particular topic you would like me to pay special attention to, I am going to see if I can also download working papers, etc for those of you who want to wade through them. There's a lot on COVID as you might imagine but also the usual coverage of both surgical and medical oncology topics.
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..Hi Ladies can you all give me your opinions....please... I know its just "guess work" but I am just CURIOUS....
So you all know I found out last month I seem to be responding well to Halaven. I asked my MO if we could now go from 2 week on 1 week off to 2 week on 2 week off..(since my tumor burden is not considered high) and since I am having Y90 on the remaining 3 tumors in my liver (which 2 of them shrunk tiny and show no up take anyway) if we get them all with Y90 I would essentially be "NED" in the liver for lack of a better term (of course not counting any microscopic stuff not seen).... she said yes to the 2 week on 2 off...but asked if I would rather dose reduce and stay 2 week on 1 off...I said no.
I am wondering though...which would you all choose and why? I know its just a personal preference thing but just want to hear your thoughts.
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Grannax, glad you're eating better. My smell is okay, but my taste buds aren't cuz of Piqray. I managed to eat quite a bit yesterday, but nothing was satisfying. Hoping both you & BevJen do well with the next ablations.
Arolosson, free patient advocate access to the San Antonio BC symposium is awesome! Good for you.
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I got my Genomic Sequencing Report from Tempus. I'm having a problem opening all seven pages of it but ill figure it out. My friend sent the first page to me.
Of course it says ESR1, already knew that. It says Actionable TX is Ibrance and Faslodex. Already knew that. Faslodex worked for about nine months on my lung mets and recently failed. Insurance I took as my first TX four years ago. Failed but it was with Femara back then. Never have tried both together but I doubt my MO will recommend that combo at this point. It's been FDA approved for over two years. Plus, I've read that most with ESR1 here it has failed.
Next was GATA 3. I think it showed up on my last report without an actionable TX. This time it's saying there's a phase 1 study at UTSW, here in Dallas where my MO is. Not to crazy about phase one study but I am curious. I'll write the numbers down. I'm technically challenged so I haven't been able to successfully research it. Help, please.
Does anyone know anything about GATA 3? If so, or if you have it, please share. My brain seems to not be able to concentrate on this stuff right now. I'd like to get as much information as possible before I go to see my MO on December 15. I want to have informed questions ready for her. The chemo she is considering is Halaven unless something interesting comes up on this report. She said we could go with an actionable TX instead of H if it looks promising. I just don't know what to think yet ..
Nicole, I guess I'd go with the option that equates to less trips to the chemo room.
I just realized Tempus sent me an old report instead of the new one done this month. Grrrrrr. I've requested the new one, again, and will let you know the results.💞
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Grannax...thank you so much for your input to my question.
I can also tell you I have GATA3...don't know what that means or what it does...but my F1 from April 2019 said I was also sensitive to Ibrance...etc... don't know if you remember but my first line of TX was Ibrance/Letrozole/Faslodex...worked and shrunk everything at 3 month scan..then failed month 4... I don't know if I have ESR1 but I didn't on that report in April 2019.
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It’s an older article, maybe newer info out there....
GATA-3 expression in breast cancer has a strong association with estrogen receptor but lacks independent prognostic value
David Voduc et al. Cancer Epidemiol Biomarkers Prev. 2008 Feb.Free articleShow details
Abstract PubMed PMID Full-text linksCiteAbstract
Background: GATA-3 is a transcription factor involved in human growth and differentiation. Gene expression profiling has shown that GATA-3 is highly expressed in the Luminal A subtype of breast cancer. A recent study found GATA-3 to be associated with favorable breast cancer pathologic features, including negative lymph node and positive estrogen receptor (ER) status. GATA-3 levels were also found to be an independent prognostic marker, with low expression predicting for breast cancer recurrence.
Materials and methods: Our case series consists of 3,119 cases of invasive breast cancer in which GATA-3 expression was assessed by immunohistochemistry on tissue microarrays. We considered >5% nuclear staining to be a positive result for GATA-3.
Results: Thirty-two percent of cases were GATA-3 positive. GATA-3 is almost exclusively expressed in ER+ patients and is also associated with lower tumor grade, older age at diagnosis, and the absence of Her2 overexpression. In univariate analysis, the presence of GATA-3 is a marker of good prognosis and predicted for superior breast cancer-specific survival, relapse-free survival, and overall survival. However, in multivariate models including patient age, tumor size, histologic grade, nodal status, ER status, and Her2 status, GATA-3 was not independently prognostic for these same outcomes. In the subgroups of ER+ patients treated with or without tamoxifen, GATA-3 was again nonprognostic for all outcomes.
Discussion: GATA-3 is a molecular marker that is highly associated with ER expression, but it does not seem to have prognostic value independent of ER, nor does it predict for response to tamoxifen among ER-positive patients.
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My last liver biopsy showed GATA-3, and it helped the pathologist and my onc determine that yes, we were looking at breast cancer and not bile duct cancer. As I interpret the article H&G posted above, GATA-3 is common in ER+ breast cancer, and does not really provide useful knowledge in other ways.
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NicoleRod
Could you change systemic Tx after the y-90 when the liver mets are treated? I would personally feel better with that because I have had quick growth in the liver. (FYI- My Y-90 mets are considered "treated disease" because they are not gone but shrinking and did not light up on PET)
My MO would quote the science. Is there a study that says Halaven shows equivalent efficacy at 2 on/2 off as good as dose reduction 2/1? How long can you stay on Halaven?
Bottom line is what Tx makes you feel at peace? Go with that to stay out of the anxiety zone. 😉
Dee
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Nicole,
I'm with Dee. I would ask your MO exactly what Dee says -- what is the efficacy of either treatment pattern? And that's what I would probably go with, especially because you had such a heavy lift finding "your" drug to beat it back. You wouldn't want to be back in the cone of uncertainty about whether a treatment is working.
Good luck with that decision.
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Dee... The schedule doesn't change until after the Y90 any way. I do this Monday and then I do Next Monday December 7th. Then the following Monday the 14th is my Mapping and then next week is the Y90...then chemo the next Monday 28th.
I did what you said and tried to find research showing efficacy with 2 on 2 off and I do not see anything like that. My MO didn't mention anything about any studies or knowing of anyone changing schedule...we just discussed reducing dose ...or 2 week on 2 off...I asked about reducing either schedule or dose...just because my response is so well and the chemo is cumulative so you can start to see more side effects the longer on it...and I have now been starting to see some sporatic muscle weakness in my legs...so I don't want it do get worse...I will scan in Feb...
I guess I can re-iterate with her after the my Mapping appt on the 14th...I see her on the 16th...I can ask again if she prefers I shouldn't reduce at all...?
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Thanks for the info on GATA3.
Now that I realize I got the wrong report, I know that my MO has been aware of this for almost two years. It didn't change my TX plan at all. It certainly has not indicated a good prognosis. As you know, my liver mets are very aggressive and stubborn.
So, I wait for the new report. Of course I know that Tempus will not respond to my messages until tomorrow at the earliest. I just hope I get my report quickly so that I have time to absorb it before December 15.
Meanwhile, I'm having another COVID test today. No symptoms, this one is in preparation for our early family Christmas/birthday weekend on December 5/6. I'm so excited to be with my family for a whole weekend. First time since covid hit. All of us are getting a test, just to be as safe as possible.
I've had fun getting all the gifts wrapped even though my TG decor is still up. Lol. I'm lucky that I already had almost all of my gifts stashed away because whenever I'm shopping I buy things that I know my grandchildren will like.
Wednesday is my MWA on right lobe. I just cannot get postablatin syndrome this time. That would ruin our weekend plan. I am finally feeling normal from my first MW. PTL. Thinking of you Bev Jen.
Praying that no one in my family will test positive, that would mean we would have to cancel our weekend plans. Both my grandchildren have been exposed to classmates who tested positive. It's been two weeks and they have not shown symptoms. Also, they have been doing school remotely. Both my son and daughter are not working this week in preparation.
I should be able to tell you some fun, family stories on December 7. Meanwhile, pray me through the MW on Wednesday.💞
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So it literally PAINS me to tell you all this.what I am about to say..... but I am on the verge of crying so I need to vent. Do you remember me telling you all about my "bites"?...what I call bites?? My itchy skin condition that I had for a year before diagnosis...and then it went away when I went on Ibrance/Let/Faslodex for the 3 months that it worked...then at month 4 I got a "bite" on my elbow (itchy bump like thing) they scanned month 4 everything (tumors) grew back and we knew Ibrance failed....then while on Xeloda and Doxil that skin condition (my "bites") came back BAD...then I start Eribulin and they all COMPLETELY WENT AWAY!!!!!! f for the first time in a year I had ZERO BITES!!!!!! NO ITCHY SKIN!!!!!! NOTHING!!!!! .......... we almost felt like those are my "tumor markers" since my TM's don't work and never have.... well...last night I got a "BITE" on my elbow...
. I havent' gotten another one yet so of course I am praying I am wrong in thinking that the Halaven is now failing...but with all the SEVERE STRESS and ARGUING last few weeks with family over this situation with my mother and I have been eating sugar every day...(I do not think sugar causes cancer or that eliminating it cures cancer) but I do think that having it regularly everyday can feed it a bit.... I think all these things are stopping or making the Halaven stop working. I seriously want to just scream and cry right now... The only time my skin was ever "NORMAL" was when a treatment was working. Also in case you all forgot a Dermatologist in NY last year was the one that finally told me when patients present...the way I was presenting it usually means they have cancer somewhere in there body that he has seen this commonly in that. That was after a year and 6 dermatologists could not diagnosis the skin condition...sure enough like I said any time a treatment worked it went away...now ...last night I get one . This will be just like the Ibrance fail...worked for 3 months failed month 4... If that is the case I am freaking doomed I am definitely down to not many options left. Especially since Halaven targets PDL1....that would mean that if it fails doing abraxane with tecentriq wont be much use.... that doesn't leave me any REAL options... Im crushed right now. Please pray.
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oh Nicole, I'm really hoping this skin thing is something completely different.
And so sorry to hear your mother's health has led to arguments. That is very difficult. Can you get a mediator or counsellor involved, or a spiritual leader? You don't need this extra stress
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