How are people with liver mets doing?
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BevJen. I've never had a blood BX or a CTC. What info did he give you about your results? Did you know that he is the one who "invented" CTC. I guess I should say was the main investigator who presented it when he was at MDA. I wonder if those results influenced him to suggest systematic vs local TX for right now for you. Is blood BX the same as liquid BX?💞
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Candy, thanks for remembering my MO appt. I think I posted elsewhere, but not here. I did see the MO and see wants me to finish this 4th cycle of Xeloda then have a chest CT to see if there's change in my new lung nodules. She listened to my lungs and said they sound fine. SUV in my liver went from 28 to 22, so the Xeloda seems to be working on it. If the lung nodules are growing, she wants to change tx to Piqray + Faslodex. My liver biopsy did show the PIK3 mutation, so we shall see.
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Grannax,
I knew that he was really involved in CellSearch development. So I had two tests. One was a Foundation 1 "blood biopsy" which is supposed to let you know mutations, treatments, etc -- like the tissue one if you've had that. The F1 blood biopsy (all they did was take my blood) reinforced a couple of my mutations, but was a limited test and it also didn't pick up on some others that the tissue biopsy picked up on. I also had a CTC test (also from blood) by a company named BioCept. Hopkins is testing both modalities. The CTC test tells you how many circulating tumor cells you have, which is supposed to be a measure of aggressiveness of your tumor (your tumor sheds these cells) at any given time. It can also pick up on some of the mutations. Mine said I had a total of 11 cells found, of which 2 Dr. C said were actual cancer shedding, and the other 9 were what he termed "more benign" -- they could eventually develop into something but we don't know. It also said that I had two copies of HER2 in one of the cells that they found, and that was what he was particularly interested in bc my F1 tissue biopsy has said that I have 2 ERBB2 mutations, and that can affect treatment. So all in all, it was quite interesting.
I think most MOs go with systemic treatment versus local treatment. BUT I just got off the phone with my IR from Hopkins and he wants to go after this lesion that they just saw on the MRI (which he said might have been there all along.) He wants to microwave ablate, or, if he can't see it, then he will do chemoembolization on that one tumor to kill it.
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Bev. I am so happy your IR at Hopkins said yes and will kill that sucker!!!
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bevgen
You seem at an uncomfortable place- choosing your next treatment from different options presented to you. Prayers for clear direction. I guess you could look at it like- I have a choice!!
Can you get the tissue biopsy done ASAP? I know it can take 2 weeks to get the report back on oncogene panels. It seems that would be a prudent step before changing course, since the blood biopsy came back with questions.
When you so no to whack-a-Mole do you mean no to local therapy? I can't remember, have you seen an IR?
My heart goes out to you and wishing you peace in the decision process.
Dee
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BevJen, very interesting info you've gotten on the various biopsies. I also think very promising that your IR wants to go after that lesion.
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Hi to all,
Dee, they will do the tissue biopsy if possible when I have the microwave ablation. My IR says that's IF he can see it and IF he can get it. He explained to me that he's got to get to the tumor directly to get a biopsy, but that even if he hits next to the tumor with the microwave ablation, that will be the end of the tumor. My MO from Hopkins has not yet weighed in -- it's not like her, but I suspect that she's talking with the molecular tumor board people. I will need at least a 2 week recoup time from the ablation anyway, so I feel okay with doing both at the same time -- so I don't think there is any reason to do things separately.
I am hoping that I hear from my MO soon so we can discuss all.
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bevgen
I just saw your post about getting local treatment. I was responding to your previous post. 😉
Awesome news! You have some interesting findings with even more potential treatments
Looking forward to your next treatment giving you good reports!!
Bliss
Glad you have a path forward and more options fir the future.
Dee
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Dear BevJen, yes to local treatment! Saulius
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Bev, A consideration if you want to join a trial is that the sponsor may require that there be a tumor that can be measured and then tracked with scans to show efficacy. If the drugs treat the tumor, then you are good.
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Hi, SP,
Thanks for the reminder and for thinking of me. Right now, I'm waiting for my MO to weigh in -- do not understand why she hasn't at least shot me a message back but may have to call up to my center today to see what's going on.
I don't think that any of the drugs being discussed are on trial. Dr. Cristofanilli said that I would be able to get neratinib commercially (but, as you know, at a huge cost). My other possibilities -- keytruda or piqray -- are both now commercially available. Realistically, the only trial that I'd be going into at this time would probably be the SUMMIT basket trial that you are on -- but, to my knowledge, that's not yet available at Hopkins. It's possible that that's what's causing the delay with my MO -- she had said months ago (early Covid times) that they were working with Puma to start that trial, so perhaps that's in the works.
But, I'm speculating here. I think because I'll have to go off of Ibrance for a short bit to even have the microwave ablation, she may just keep me on that after the procedure for at least a month in order to let me heal and for her to see if the procedure knocks down my slowly rising tumor markers.
Decisions, decisions!
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I think you have some of the best docs in the country. You will come up with a plan based on what they have said and what your knowledge and instincts tell you.
I was on Ibrance when I had my first y90. Maybe it's different when you have microwave ablation, etc. I hope those TMs come down. 💞
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BevJen, I am so impressed by your knowledge, persistence and spirit as you advocate for yourself in a cancer treatment world that is almost impossible to navigate.
As some of you may remember it was in eary June I was told there was nothing left to do for me. My calcium levels were very high, my liver tumors has increased rapidly and I had blown through every chemo they had. Then a few weeks later my Foundation One results came back showing a PALB2 mutation and I got put on Olaparib/Lynparza (normally given to those with BRCA mutations but they are starting to include PALB2-ers. In less than 2 months my CA 15-3 has gone from 1320 to 206. Calcium is normal and my liver enzymes almost normal. With the exception of anemia I am doing really well. Next scan in October (though the COVID-backup makes the CT waiting list long). I want to know and also don't want to know. I don't dare hope, the crash when things turn is so hard...but it seems positive right? Don't know much about tumor markers.
Next question will be whether or not to keep pushing for Y90...
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Aroisson,
Thanks much. I am a researcher by training (but not scientific training at all) so I think I am like a dog with a bone when I want to solve a problem. You are right, though -- it is a VERY difficult world to manage. I am continually amazed that I have to be the one who connects the dots among the various docs who I have consulted -- why don't they just call each other? They are the experts.
Your TM drop is quite impressive, as are your other markers. It truly sounds like your drug regimen is working. So kudos to you, too, for getting that F1 report done. The Y90 question may be resolved through your CT scan and what shows up at that time -- your systemic treatment may be shrinking those little liver buggers very effectively.
Good luck.
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Arolsson- Woohoo for the good TM's and calcium and liver enzymes getting better. Happy for you.
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Arolsson AWESOME!!!!
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Arolsson, that is an impressive drop in TMs, so sounds like this treatment is working for you! Glad F1 found this mutation to treat. Congrats.
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arolsson, well done for managing to sort it and very happy it had been working up to now for you - sink or swim world eh..
Enjoy your borrowed time and may it work for long and by the time it stops working there is something else for you !
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arolsson! Great news. So happy you where such a strong and determined advocate for yourself. Praying this is truly working and for a very long time. Nice drop on the TMs!
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aroisson. I know what you mean, it's scary to hope and crushing to hear bad news. Your labs are sure looking like you'll greet good news, I sure hope so. You'll be on a high if CT confirms labs.
Do you feel better or is anemia still affecting your energy level?💞
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Arolsson- I love how the foundation one found a mutation that provides another treatment option! At one time not even an option for use! Wishing you success until another treatment comes along.
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Arroison- that is thrilling news! There is a podcast called Breast cancer Update with Neil Love which just had a new podcast about parp inhibitors for BRCA and PALB2 and the results have been stunning!
YAY!
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Arolsson! This is great news.
My F1 said to try a PARP inhibitor for my ATM inversion mutation from liver bx.
Treatments are targeting our mutations! Yes!
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Arollson, so happy to hear about your dramatic improvement!
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Arolsson, that was scary, hearing they did not have anything for you, but you worked hard and got to this point. Well-done. May the good results last a very very long time indeed.
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Hi all, I just wanted to post an update. Situation a bit critical for me right now. After starting Piqray / Faslodex a bit over a month ago, I have rapidly developed ascites. I am moving on to oral cyclosphosphamide metronomic therapy (constant low dose given, no days off). I am also going for a second opinion at an NCI-designated cancer center nearby, which my MO recommended, and my MO will be seeking to get my insurance company to approve Enhertu off-label for my HER2 low status. The NCI-designated cancer center has access to a lot more trials than my cancer center. My parents are coming out for a few weeks. Not sure if this is the beginning of the end. Praying for a miracle but very aware of the gravity of my situation. My purpose is being here for as long as possible for my 5 year old son so I will keep trying new options for now so long as my quality of life remains good or at least decent.
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Dear JFL, sorry you have to deal with all of this but no way it is beginning of the end. We also have a 5 year old, so I understand how you feel (if I may say this). If you get Enhertu approved it would be so good... also what about novel clinical trials with her3, bispecific antibodies, even TILs if it is an NCI center you can refer to? What about ShetlandPonny's clinical trial (maybe you have similar mutation situation)? I know you advocate for yourself but it would be so much easier if you could pass over some of the advocating tasks to someone you trust and someone who knows the matter? You have to heal and be with your boy... With all my heart, Saulius
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hugs , JFL
Hoping it is not - you have seen others to pull away from it.
Ln another hand I have a friend who has lost mother when she was 5 - she has a happy fulfilling life so can be done. Hope you do MIT kind me saying this.
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JFL...I am so sorry to hear about you having to move on to a new treatment and about the ascites. I just prayed for you. We are all here for you. Please try to keep us posted on treatment and if you need an ear we are here. (((((hugs)))))
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