How are people with liver mets doing?
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I'm going to have the liver BX this week. My IR says we'll talk about options then. think that might mean y90 is not going to be a good option. Has anyone had chemoembolization ?
Yesterday was another down day for me. The "why am I going to put myself through all this" thoughts. This morning I'm better. The good old roller coaster ride.
Kate thanks for your kind words. My spirit has been sorely tested this week. It's still there but it hides from me some days.💞
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Grannax,
I replied on the other thread. For what it's worth, my IR explained this process to me when I originally met him, before we decided to go with microwave ablation on my first liver ablation. He said at that time that he could do several lesions at a time (confined to one lobe at a time) but that he wouldn't feel comfortable doing more than 2-3 at a time. He said that the downtime from this differed from patient to patient, but that he just plays off of what the patients tell about how they feel and what their liver function tests show.
Try to keep your spirits up. We all go through the "why am I doing this" stuff, as you've seen many times before on BCO. But you are so strong, and have been such a beacon of hope for all of us -- truly.
Hope the liver biopsy goes well. Make sure they drug you up enough -- I felt them coming out from the biopsy, as well as them coming out from the ablation. I was out, but I remember shouting out "ouch" both times -- probably peppered with a few expletives.
Bev
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Sandi...you just threw a monkey wrench...in my chance to thinking that cycling back to hormonal therapy could work... I too have FGFR1.......I wonder if we have NED...if that makes a difference in people with FGFR1 being able to maybe have a shot at the hormonal therapy being able to work.....probably not....
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NicoleRod
You still have other avenues besides ER therapy. Keep riding the wave of good reports🦋🦋🦋
Dee
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Hi again, everyone. Kate from Alabama here again. Nicollerod, I probably don't post very much because things have gone so well for me. I was diagnosed de novo, having had a normal mammogram just 5 months before diagnosis. It was found in my liver first, largest tumor over 11 cm. It took a biopsy to find out what kind of cancer it was. After that it took them forever to find the primary which was tiny. Anyway, long story short. I have been on my first line of treatment, Ibrance and letrozole, for over four years now. I know I am fortunate so I mostly participate as a reader and a prayer. I pray for all of us. Everyone on this board has touched me so. I feel the only thing I can contribute is to make God aware of our struggles. Love to you all, Kate
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Nicolerod, even if FGFR1 amp shows up on our genetic report, I think the general opinion is that we can't say 100% that is the driving mutated gene when we have progression.
All we can do is try to find the right possible treatment and see how it goes for our specific breast cancers. My MO wants me to try afinitor, aromasin next. I do not have the ESR1 or PK3 mutations. I am also interested in Verzenio. I am okay with IV chemos, too.
When I do progress, I want a tissue bx and a liquid bx. Hope my MO is on board with that request.
Right now Xeloda (capecitabine) is keeping me stable.
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SandiBeach57,
Regarding the liquid BX, I would just note that I don't really know that most clinicians really understand what those tests reveal -- for example, when I recently pushed for a liquid biopsy, I got back two reports -- one, from F1 that didn't have nearly as much info as my earlier tissue biopsy (could have been the parameters that the doc set) and another, from a company called Biocept, which was a circulating DNA test. With respect in particular to the circulating DNA test, neither my MO nor my consulting MO (who has written lots about circulating DNA) could exactly tell me what those test results meant. My takeaway was that yes, you have some circulating DNA (and that would be DNA from the tumor cells) but it's a very low number. I think (although I'm not really sure) that that meant that yes, you have metastatic disease (not a revelation) but that it's not a lot of disease. Not exactly that informative.
I was happy that I was able to have these tests (they were part of a study at Hopkins, my cancer center) but it was pretty clear to me that use of these in the clinic, while perhaps useful, is not as well understood as the tissue reports that come back and clearly state what the issues are with each person's cancer.
Just FYI. Hopefully you have better luck than I did with this next generation testing.
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So I just got the email from my MO they want me to complete cycle 6 of Halaven before I do the Y90...UGHHHH that means I have chemo 11/6 and 11/9 ...then 11/23 (week of Thanksgiving) the mapping and procedure 11/30..... I need to find out if the mapping will make me "out of commission" for thanksgiving....
We will not be able to get a tissue sample of the newest tumor (that is no longer FDG Avid).....
. I am disappointed... I know some of you mentioned to blast the ones that are not showing any uptake ...(which I want to anyway) but I can't remember why you all suggested it? Is it because they can come back alive right?0 -
BevJen, thank you for the feedback re liquid bx. That is exactly the info that I like to hear..folks who experienced that test.
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My take is that liquid biopsy is a nice option to have when you can’t safely get a tissue biopsy; or perhaps when you are pretty sure you are dealing with heterogeneous cancer, meaning clones with different profiles, and you can’t biopsy them all. Also, I have learned that if your tumor volume is low or you are on treatment, the circulating tumor DNA may be below the threshold of the liquid biopsy and you will get little information, with the report saying “no data” for the mutations they look for. This happened to me, and when I retested six weeks later having been off treatment, I got results. They agreed with the tissue biopsy results.
Hello, Kate, and welcome.
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Re liquid biopsy/tissue
Shetland Pony, I had 2 liquid biopsies at MDACC while on treatment. Both showed no data even though I was progressing on those treatments. I had the tissue biopsy and that gave me my amplifications and mutations.
Now I have my third Biopsy with TEMPUS results.
On both tests--somatic ESR1 mutation
-MRE11a Somatic mutation (not on tempus test)
-fgf3 amplification
-CCND1 amplification
-Fgf19 amplification
-FGF3 amplificationNew this time-amplifications
-FGF4
-AURKA
-FOXA1
-GNAS
-GSTP1
-NKX2-1
-TOP1
-ZNF217
-Gata3-Frameshift
No Microsatellite Instability, Tumor Burden 5.3m/MBNo PDL-1
It’s not much actionable news.
Dee
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Dee
Do those new amplification open up new medications for you? When I asked about the drug recommendations on my foundation 1 report I was told those were dirty drugs and that they would be used last. So curious to know if this gives you more drug options? And where they there before and just not reported or are they newly developed.
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Jjzn,
What is meant by "dirty drugs"? I've not heard that term before.
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Is this what you mean, Jjzn? From Wiki: “In pharmacology, a dirty drug is an informal term for drugs that may bind to many different molecular targets or receptors in the body, and so tend to have a wide range of effects and possibly adverse drug reactions." I have an idea that drugs that don't make it through safety trials are often too-broad drugs.
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My understanding are drugs that are meant for other tumor types. Something like a drug that would not be used for breast cancer but maybe prostate cancer. Thats how I took it when it was explained to me.
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For example on my foundation 1 report it listed the drug Triptorelin which is a prostate cancer drug.
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Leftfootforward-- Did I miss seeing your post about MO appt?
50'sgirl- any news on scan yet?
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Jjzn,
Interesting. Like Shetland, I looked it up after I sent that message and I found the same thing as she said.
I thought my F1 report had some interesting drugs listed and also, the clinical trials list was a good starting point. Plus, depending upon when someone has had their F1 report done, drugs are continually being tested for other types of cancers, plus some have now been approved by the FDA for multiple tumor types (e.g., keytruda now being used for many types of solid tumors with certain characteristics.)
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Candy, Thank you for asking about my scans. You are always so thoughtful. I expect to see the results posted to the patient portal later today. I think it will be good news since I feel so much better than I did,and my blood tests and TMs have improved. I will discuss the results with my MO on Monday.
Hugs and prayers from, Lynne
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50s girl- hoping for a good report.
TEMPUS did not list any suggested drugs, only a couple of clinical trials. I don’t think there is anything new that would result in a change of course if I fail the trial.Going to try gem-Carbo next in case the Neuroendocrine is driving the progression.
Good news is I have kept my hair so far- not even thinning. 🙌🏻 I may try cold caps for the gem-carbo.
Dee
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50's Best wishes for you!!! keep us posted
Dee... I see people doing those cold caps when I go to chemo and I am happy that I shaved my head...lol
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Well, I read the report from my latest scans. Things are not as good as I had hoped and expected. Liver has anincreased number of lesions, and prior ones have grown. My spleen is enlarged again although there was no mention of mets there this time. They might only show up on MRI. My common bile duct is inflamed ( could be from gallstone that I have had for at least 5 1/2 years). All-in-all, it is disappointing news. I am tolerating current treatment well, and I had hoped to remain on it for much longer. We shall see what MO says on Monday. In the meantime, life goes on, and I intend to enjoy every minute of it.
Hugs and prayers from, Lynne
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50s girl...I am sorry it looks like progression...when do you talk to MO? Which treatment are you currently on and how long have you been on it?
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50sgirl, seems you many tx options to go forward..like Halavan. Or Verzenio ... Now is a good time to look at currently updated Bestbird's book so you can have a good discussion with MO.
Is it possible to get fresh liver bx, for hormone receptors and F1? You could have drastically changed and the new drugs out can be a good option. You might be TNBC or have high mutation burden and the immunotherapies might work.
I am sorry for your disappointing news, especially when you feel good. Strange how the body can mess with your mind.
You will get thru this.
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Thank you, Nicole. I will meet with my MO on Monday. I am currently on Adriamycin, and I have been on it since early March. I reached the max lifetime dosage a couple of months ago, so I also receive dexrazoxane with each infusion (to protect my heart). I was in really bad shape in February, I cannot believe how much better I am now. I did see improvement in previous scans.
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50'sgirl- So sorry to read your news. And MO appt not till Monday? But, that gives you time to do some research and formulate your questions for your MO. Like Sandi said, read Bestbirds' guide for some options for next treatment. And ask about a new biopsy. From your profile it appears you are on Adriamycin since March? Is that an updated profile? You had spleen issues before? The profile cannot show all our history and I forget everyone's history.
I am giving you a hug from here. Please keep us updated and feel free to PM me anytime.
Edited- See your last post---we were posting at same time.
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SandiBeach, I did not see your message before I posted. Thank you for your great suggestions. I already have my list of questions and discussion points for Monday’s appointment. I have been with this same MO for 5 1/2 years, so he knows I will have lots of questions. A biopsy is definitely a good idea. My MO and I had discussed Halaven as a possibility after Adriamycin. I have to admit to being a bit weary of all this. I was thinking about it the other day. In the past 5 1/2 years, I have had blood tests and doctor’s appointments at least once a month. For the past year and a half I have had them virtually every week. Add scans and echocardiograms, kidney surgeries, and so forth, and things can be overwhelming. I could use a little break. Wouldn’t it be nice if cancer would take a holiday for a few months so we could feel normal for a little while? I don’t mean to give you the wrong impression. I will move forward. I guess I am used to this. I am not screaming, crying, or climbing into a hole. It would be really nice to fly away to a nice warm beach for a week or two. If only COVID wasn’t here!
Candy, Thank you for your message. I will be well-armed for Monday’s appointment. My profile is up-to-date. My spleen was full of lesions in late February. My liver was also full of innumerable mets. I am much better off than I was then. Unfortunately, this week’s scans show progression since August scans.
Hugs and prayers from, Lynne
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50sgirl
Hoping you can find the right Next Tx. <<<<Hugs>>>>
I understand you being tired of it all but willing to keep going at it. Hand in there!!
Dee
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Dee I didn't lose my hair on Gem Carb. It thinned some but still looked good.
I had my liver BX yesterday. It was pain free and I'm not even sore. PTL
We did discuss my options. He saw four lesions he wants to kill with microwave ablation. I think it will be two separate procedures. He said y90 wouldn't be a good option because I have diffuse mets.
I understand what he's saying and agree. He also hopes I can start Halaven soon. He's calling my MO to coordinate with her.
Waiting to find out what the next first thing is. 💞
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Grannax,
Good luck. I replied to this on the other thread where you posted.
Bev
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