How are people with liver mets doing?
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Hi Julie,
Breast cancers with FGFR2 amplifications tend to be addicted to that pathway:
https://www.onclive.com/view/fgfr-alterations-emer...The FGFR2 signaling activates the PI3K kinase (even without a PI3K mutation), so Piqray-Fulvestrant, or everolimus-AI (mTOR inhibitor) may work. It turns out that FGFR2 amplification is a common way that HER2-positive cancers become resistant to HER2-based therapies, so there is a lot of research going on to find good treatments for FGFR2 in particular- they are looking at drugs to inhibit the FGFR2 kinase activity (pemigatinib, regorafenib, futibatinib, derazantinib- you'd want to look for trials with these kind of FGFR2-specific drugs rather than those that hit any FGFR1/2/3/4 kinase), and also using FGFR2 monoclonal antibodies as ADC-chemos to selectively kill FGFR2-expressing cells, and perhaps they will get around to using this for CAR-T. Aurora A kinase can be on in these cancers, and so Alisertib might work, PARPi might work, CDK7 inhibitors, etc. Your best possibilities lie in clinical trials, and OHSU is a great place..
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Cure-ious
Thank you for all that information. That gives me a lot to look into.
Julie
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Grannax2..was a bx and F1 performed on this new crop of tumors? My hope is that all avenues of potential tx are explored, esp if you are on the fence on what to do next.
Don"t forget the Right to Try and Compassionate Use. Someone in your family or MO office would have to help navigate with that. You have enough to bare on your own.
I sense your sadness. No matter your direction (and we all face these decisions when tx fails), please try to keep up your spirits each day. Every morning we wake up, it is another day to be with those who matter to us.
Love to you my liver metser friend.
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Hi. My CT results came in and my liver tumor returned after 3 years and 4 months after I got it ablated. It's in the same spot. A month ago, a biopsy of a lung nodule showed I had flipped from ER+ to triple negative. At the time we thought my liver was probably still ER+ because it's responded to hormonal treatment while my lung nodules have been more stubborn, but now I wonder if the liver met is triple negative too. Last month, I also tested positive for the pik3ca mutation, and my onc wants me to try piqray next. I don't know if that is a good idea if I am mostly triple negative. There doesn't seem to be studies on Piqray and triple negative. I wonder if that is a risky choice since my liver is taking off? My onc wants to avoid infusion chemo for as long as possible and she is stubborn about this. Taxotere 5 years ago gave me permanent peripheral neuropathy, which is one of her reasons. I see my onc on Thursday, so we will make a decision then. I have a crazy 2 weeks with work, and won't be able to travel for a second opinion.
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Kar...I am so sorry for the progression in your liver... I heard Piqray is very very rough drug...like...more hard than most all chemos...
. MO says she hates the drug and dreads when she has to put someone on it bc the side effects are really rough. I am not trying to scare you just think you should discuss that part of it in depth with your MO since she is not wanting chemo for you....Hope you get some clear defining answers from your MO!
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thanks Nicole. Gosh, I agree from my research that piqray is a harsh drug for many. I will bring that up to my onc.
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KarPC- I care that your report was not better. Can you get a liver biopsy to see if it comes back TNBC? If so then maybe you can qualify for the newer TNBC immunotherapy drugs.
Dee
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Hi all,
There may be a better place to post, but you here know me best. I have been dealing with some anxiety lately. Kids choices, granddaughter’s untreated speech issues, sweet step mom just dx with pancreatic cancer,I had a week of migraines, hubby may go back to the office soon, cancer-always cancer, etc.
I read this today and thought of our wonderful group.
“Today we are runners in a race none of us would have chosen, one whose finish line we can't see. We're also witnesses to the journeys of others. We can help each other. We can trust there is still joy ahead of us. We can, most of all and more than ever before, choose to cheer each other on.”
I look forward to this thread of encouragers and sharers of info. I learn so much here about treatments, life, hope and even despair.
I am going to my counselor today to get some insight, but I find coming here so helpful.
Dee
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Dee, I really like that quote, and so many people here epitomize it perfectly.
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Dee, that quote was really nice to read. I feel better already. After a bone scan yesterday, Zometa infusion today and zolidex shot today. Feeling a little extra today. I needed to read that.
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Dee,
So sorry about your anxiety. My anxiety has been high too. I was referred by palliative care to onco psychotherapy. Well, they don't have an available appointment until October. Guess I will continue to rely on CBD oil at night if I can't sleep because of anxiety. And, like you, I rely on and am grateful for the support from this group of amazing women!
Hugs, Susan
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Thanks Dee for the inspiration and the info. I will have to push hard for a liver biopsy. Only with months and months of convincing was I able to get the recent lung biopsy. My onc is so cautious, so I have to choose my battles wisely - ha! I do have the PDL1 mutation which qualifies me for immunotherapy but it needs to be given with a chemotherapy I believe.
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Kar - from my biopsy in 2019 I had 10% PDL1 as well... if I do iummotherapy i would like abraxane and tecentriq....
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KarPC
I was told that lung biopsies are more dangerous than liver biopsies. That's why we decided not to biopsy mylung met that lit up on the PET scan but to zap it with SBRT.
I have had 6 liver biopsies in 2 years because of trials and exhausted tissue samples. Not fun but doable. Of course it depends on the location. Hope my experience helps.
Dee
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I was able to read the PER scan report from Tuesday in my chart. I don’t see the NO for 2 weeks.
Good news is my liver had nothing to report. Yay.
Bad news is that thing in my chest that I had radiation to for 10 days is basically the same as it was 3 months ago and might be slightly larger. My worry is that it should be dead after treatment. Why isn’t it? Do we just continue to watch it?
My thyroid continues to light up on so as n as well. I already have a biopsy scheduled for tgat in the 19th. Not too worried about it. I can live without my thyroid snd take replacement horm in es if needed.
My lungs still have uptake and the radiologists continue to say it is possibly infectious/ inflammation. There was one new spot, but they attest that to treatment I just received.
I guess if I digest everything, it’s a good scan. I just worry about that chest nodule. But when do we ever stop worrying.
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LFF- It sounds like you did have a good report.
My experience was my SBRT to the lung caused strange readings on X-ray and scans for many months. One radiologist said covid😳 because it was in my chart that I had it. My RO told me to give it at least 8 weeks and preferably 6 months to see the long lasting results. Now a year later it says “radiation effect" . Being slightly larger right afterward was not considered abnormal.
Be patient on the lung and talk to your RO if you have more questions is my thought.Dee
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AlabamaDee,
What a lovely quote. Must be something in the air because I've been having anxiety too. More than normal. I've never had a depressive episode ever, but I think I had one the last two weeks. I was just so sad and irritable. I'm thinking the whole cancer situation plus re starting tamoxifen has messed with my emotions. My next scans are in 4 weeks ( and then a 3 week wait for results *uuuughhh*) and I'm already just shit baked over them. I've restarted digital art, which has helped me focus on other things and it's been so helpful
LFF, In my opinion as a non Medical person lol , is that radiation can cause funky readings. We had a little girl in our mom group have a brain tumour that was treated with Rads. Her scan has showed that it was still there and bigger, to which they told her the radiation didn't work. They ended up getting a second opinion, and that Dr had said it was inflammation ( and he was right). I hope that it's the case for you
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Ok, my peeps, update coming on my situation. Just so you know. So if you want to skip this post, that is ok.
I got a call from my MO just now. Posting while fresh in my mind. I was not put on the Liver Tumor Board agenda. But my MO called her colleagues that work with GI cancers and deal with liver cancers. There are 2 of these specialists in my cancer center---not at my satellite center, but the main campus.
SBRT is not an option for me. Y90 is. Or a liver resection. She did not mention the ablations--cryo, microwave, etc as being options.
We are going to set up a consult with an RO and I guess a surgeon to discuss--- risks/benefits, pros/cons. My MO really wants me to have a resection. I mentioned being on a blood thinner with the PE episode 2 months ago and my hesitancy of coming off thinners and having another clot. Also I mentioned living alone with no support system to take care of me after major surgery.
After I decide what, if any, local therapy I want, then we will discuss systemic treatments---maybe keeping me on I/L or changing it up some. Maybe Verzenio. Maybe an AI alone and off Ibrance---??!!. Maybe a PARP. We will decide later.
My MO said I have time to decide all this. I have to get on the RO schedule for a consult. Decide. Do the procedure, if I decide to do that. So, it sounds like my MO is not really in any hurry about all this. I wish I had her confidence that the small, steady increases the last 4 scans are really ok.
Thoughts?? I know I am not as bad as some on here and I am sorry to take up your time when things could be worse.
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Hi everyone - A friend of a friend told me that JFL is not doing well. I do not have any details. Please send positive energy to her and her family.
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Thanks for posting Scrunch. I having been thinking about JFL a lot lately. Things sounded so positive after she started Enhertu. I'm so sorry that things have taken a bad turn for her. She's in my thoughts and prayers.
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scrunch, thank you for updating. JFL, thinking of you
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in my thoughts JF
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Thinking of you JFL. You have shared so much helpful information over the years and have been a huge inspiration.
Dee - I agree that a liver biopsy is easier. They found a small blood clot on my CT last Friday in my lungs. I had to start blood thinners. The clot is likely from my lung biopsy last month. My onc and I agreed that this is not a good time for a biopsy. I need to take care of the clot first.
Nicole - Being PDL1 positive may give you more options for treatment and there are so many immunotherapy trials.
I am starting Piqray tomorrow. It's my last treatment option before I start infusion chemo and immunotherapy unless I find another trial. It may be risky about how it will work on triple negative and I am worried about the side effects, but I am going to march on forward and hope for the best.
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my doctor doesn’t seem concerned, so I guess I shouldn’t be. Of course we all know that sometimes we know something isn’t right before our doctors are concerned.
i Liza - there is no evidence of progressive cancer here. The lung changes are more likely related to the recent radiation you had at Evergreen. We can talk about it when we get together later this month, but certainly nothing that you need to do anything about. Sincerely, Tanya Wahl, MD
2:38 PM PDT 7/8/2021Study Result
Impression
1. Persistent hypermetabolic, centrally photopenic/necrotic right paravertebral mass/node posterior to the right atrium.
2. New medial right lower lobe consolidation with nonfocal mild uptake may be inflammatory and/or treatment-related.
3. Other somewhat increased areas of mildly FDG avid patchy peripheral interstitial opacity in the lungs bilaterally may be infectious/inflammatory.
4. Persistent focal left thyroid gland uptake.
5. Other findings as noted above.0 -
LFF. I like your MO.
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Scrunchthecat, it means a lot to me that you gave an update on JFL. I miss her posts. I know she will do everything possible to keep going for her DH and her little DS.
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Candy - adding on to my response on another board... when you meet with the RO, you should be able to discuss the ablation options, right? I thought IRs did y90? A year ago, I would have jumped at resection, but due to size and number, I was not eligible. Now, I'm not so sure.. I'd worry about going through major surgery only to have a new crop of tumors show up.
Hopefully, there are others that can chime in with their experience.
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SeeQ- I have no idea who I am even consulting with yet. Fun fun. RO, IR, or surgery.
To me resection seems the last choice. Another poster on another Thread had liver resection done and she posted it was MAJOR surgery, with 20 staples, lots of pain, and harsh recovery. I will hear what they say for my case. But I do not want cut stem to stern as they say. And then not guaranteed that more tumors would not crop up elsewhere in the liver later.
We shall see.
Thought..... why is mastectomy not indicated after the Stage 4 diagnosis, but a major liver resection is???? And I have a shoulder issue--- torn labrum-- and ortho does not feel I am a surgical candidate for that and I live with decreased ROM of that shoulder and pain in that shoulder. But, liver resection is an option????
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LFF I was told when i just had my radiation to sacrum that if it remained unchanged or I still have pain with no relief it means the tumor is immune to radiation....? But that may not be the case for you since that isn't bone mets?
scrunch thank you so much I have been asking about JFL...I thought she was doing great on the enhertu?? If you find out any details can you please keep us informed...I am going to pray for her right now...
Kar...thank you for that info.
ALL***** I just had my C & T spine scans this morning...Tuesday is my PET and Liver MRI...please hold me in your prayers...as you all know I am on treatment number 5 in 2 years and I have not had anything work for more than 4 months
. Thank you,
Nicole
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Thoughts are with JFL. Scrunch- Thanks for letting us know. Pass along more info if you get it.
Nicole- Thoughts with you too. Praying for good results for you. You have had it rough.
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