How are people with liver mets doing?
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Sandi, how did your taxol infusion go? I having been thinking of you. The posts here remind me that we are all so different in our response to treatments and side effects. I continue to hold out hope that we can find a little magic to extend our lives without suffering more from the treatments than the disease.
Candy, you are getting some really good advice from wise women. I have nothing to add at this point as my liver has been behaving for now
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To the posters living in the United States (our healthcare system)---- do you meet with an RO or IR? How did you get their names and set up appointments? Meaning, if my hospital staffs 5 IR's, lets say, and they are hospital staff that does the procedures in the hospital each day, with no office or office hours seeing patients, then how do you meet with them???
Or did you go thru your MO to plan your procedure?
For example, I had a liver biopsy in April. It was done by an IR. My MO and I discussed the need for a tissue biopsy. She scheduled it. I went to the hospital and the IR did the procedure. I followed up with my MO for the results. I did not meet, in an office, with the IR before (to discuss the biopsy) or after (to discuss the results) of the biopsy. The IR did the procedure and I never saw him again.
So, if I have an ablation, Y90, or radiation should I meet with the one doing the procedure OR go thru my MO???
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Hi Teedoff.
2nd low dose Taxol infusion went fine. Day 4 was my worst day with nerve, bone and muscle pain. WBCs and ANC dropping. I am icing scalp, hands and feet, but already experiencing periiodiic numb big toe. Constipation big issue but really doing okay. I guess I will know in a few weeks if working.
If my F1 shows high TMB, then switch to Abraxane and immunotherapy.
I probably should post this on weekly Taxol group, too!
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Day 4 is usually my “crash” day after losing my steroid energy. I get a red warm face the second day, which goes away the following day. Don’t be surprised if constipation turns into loose stools towards the end of the week. I’ve been spared mouth stores so far. My prevent defense is to swish Peroxil before bed if I feel anything coming on, and it seems to work. Blood work fluctuates but never fallen enough to postpone infusion.Starting to grow some hair fuzz but really miss my brows and lashes, especially since I’m not very artistic. Just another cancer indignity. See you on the weekly Taxol for Mets thread.
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Hi, Teedoff. I see your "stats" say liver and bone mets. Did you have liver mets in 2015 at the time of mbc diagnosis, or did you start with bone, and the liver mets appeared later?
To answer your question candy, in my case (NCCN center which is a step above NCI in their scheme) my onc sent me to meet with "her liver guy" who is an IR in the same institution, to discuss Y90. A couple years later, I had another appointment with him to discuss local treatment options. Also I have had two appointments with a liver/biliary surgical oncologist there. The first time my onc sent me there to get his opinion on my bile duct issue. The second time I made an appointment to get his input on local treatment options, since he had mentioned some in our previous meeting. It seems that where I am, once you have seen a particular doctor, you are established as a patient and can easily make a follow-up appointment. I don't remember for sure if my onc had to refer me or if I just called after discussing the idea with her. Bottom line, I would not have had to schedule a local liver treatment (resection, Y90, microwave, SBRT) without first consulting in person with the doctor who would do it. But for liver biopsies, my onc simply ordered it and I did not meet the IR before or after, though I did talk to them a lot the day of, before the procedures, to make sure everyone was on the same page. Good luck, my friend. This should not be so hard. I am hoping your onc will sing a different tune than the nurse did on the portal.
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Sandi, do keep your onc informed about any developing neuropathy. It could be that a dose reduction would enable you to safely continue. Please researach thoroughly the latest data on immunotherapy for ER+ breast cancer. My impression is that it is not showing super results even with high TMB. But of course worth trying if it is your best available option.
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Shetland, my 2015 diagnosis was bone only from skull to pelvis. Worst spot was T11. So had radiation to prevent compression fracture. Liver at that time had a large hemangioma which never changed. When liver mets appeared, we changed treatment from faslodex only to Ibrance Aromasin which worked for over a year. Also had SBRT which also slowed things down. Over time progression has been slight but manageable. Every treatment seems to work for awhile. Pikray was supposed to be my magic bullet. Instead it darn near killed me. That’s an exaggeration but it was awful. So far so good with Taxol. Liver mets barely there for the time being. My worries are what’s left. A bridge to cross. I’ll never be NEAD but will be happy to be stable or slight progression.
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SP- I googled my cancer center, as I really didn't know their designation. They are NCI and NCCN. All I can tell the group is what the MO nurse told me in her message. I will press for more information after the recommendation comes down from the Liver Tumor Board. I will ask to see a "liver specialist" and see where that gets me. Thanks for all the information so I can press my MO, if I choose to go this route, which with all this talk now I am really hesitant about doing something other than systemic meds. But, I can let my MO know that Yes other patients have talked with a specialist before doing local treatments on their livers and I want to also.
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hey friends, I have happy news - my scans are stable.. I was not expecting that at all as at my last scan 8 wks ago there were 2 suspicious new lesions in lung and lymph but the liver mets were still shrinking - the MO gave me option of waiting or switching systemic tx. I opted to wait but expected that thIs scan would just confirm we need to switch.......instead, this scan is just pretty much same as last! So I'm staying on tecentriq+abraxane. Guys, I'm now 15.5 mos on first line for mTNBC - never expected such a response.
And, I'm feeling really good physically so that's extra good.
candy - I'm glad you're getting such good info about how this stuff all works in the US. I hope you get clear answers. I know how stressful it is to weigh options. I was anxious yesterday doing up lists of options for me and flow charts, trying to consider every eventuality because they've been saying I'd need to choose my next systemic.... the decision making part is so hard, when literally every decision has so much resting on it. I hope your tumour board comes with clear recommendations for you!
waving hi to everyone
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Moth, doing a happy dance for you, long may your scans be 'pretty much same as last!'
Teedoff, I have never been much interested in makeup ,but have found using a stencil and a waterproof brow pencil give me 'eyebrows' that make me feel a little more normal when I look in a mirror [which I try to avoid], but I have yet to fully master fake lashes.
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Thanks, Denny. I’ll order some stencils. Anything to get rid of my caterpillar look. My other faux eyebrow look is evil arch villain. You are so right about lashes. Impossible, especially with neuropathy hands. Too cheap and chicken to get brow tattoos.
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MOTH-💃🏻💃🏻💃🏻So happy for you! I understand the feeling about being ready for a new path and then not really needing it.
Candy- there is talk in the industry about patients attending a tumor board, but it is not the norm. You could ask your MO for the notes from the tumor board meeting but that may be hard to convince.
I like your idea about seeing what they say from your MO. Talk with her about it then request a visit to the doctor for the suggested procedure. If it is surgery you will definitely have a consult.
While I have never seen the IR for a consult for a biopsy (I have had 6), my MO got me an appointment to talk to the IR who specializes in the local treatments like ablation, y-90 etc. I told her I had questions and wanted to know more about local options. I also had a consult with my RO before SBRT. If you are interested in any of the procedures-ask for an appointment from all three.
There must be a patient advocate at a larger facility who can help you navigate that, if your MO drags his/her feet. You should have informed consent. IT IS YOUR CHOICE WHAT DIRECTION/PROCEDURE. You need to feel comfortable with that choice.
Since It's not an emergency- just relax, breathe and go in with an open mind and take notes about why the board suggests their path. You got this!
Dee
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moth so happy for you!!!!
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Moth, Congrats again on your scans! I also replied on another thread.
Candy, My MO threw out the idea of mw ablation at one of my appointments. I said I was interested, so I was scheduled for a consult with the IR to get more info about it and for him to determine (using ultrasound) whether the mets could be visualized for the ablation. After the procedure I had a phone follow up with him then I was turned back over to MO. He did say I could have another ablation if needed down the road and I assume I’d still be his patient for that. I hope you get a recommendation from the tumor board and can meet with the specialist to get info specific to your situation. I found it very helpful to have questions answered in person and left feeling secure that I had good reasons to agree to go ahead
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Moth- WOOHOO on your scans.
I will wait to see what the tumor board has to say and then I will tell my MO I want a consult to talk to the one that would be doing the procedure. Someone asked me today which way I am leaning. Maybe SBRT. IDK. A big question I have is my blood thinner. If I need to be off that I will probably decline the procedure. I just had a PE in May and was put on this thinner. I don't know if I want to chance holding the thinner and developing another clot, or have a heart attack or stroke. I am really on the fence about these procedures. Look at the mess Nicole got into. This is not a light decision.
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Candy my situation was RARE...remember that my tumor was right next to the colon wall and I am VERY thin...so the 3% that normally leaks out doesn't normally effect a person...but because I am so thin there was no real fat between the liver wall and colon so it went right through...but even with all that I would do it again...and right now I KNOW there is new tumor or tumors in my liver...and I would do it again.
MOTH...what does mTNBC...I know TNBC but whats the m for???
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All - I am turning to this post for some help with a biopsy result my mom got today. Mind you - we have not yet seen the oncologist and it was placed on her chart at the hospital she had it at.
It shows that the lesions are indeed from BC origin. It also states it is ER/PR + and HER2-. I am trying to understand what this means exactly.
This may sound silly - but the biopsy can not determine where else it has spread can it? That is the PET scan.
I may sound like a noob but I have to be honest - I googled stuff when we first found it had returned and it was awful. So I felt I would ask those who are currently fighting this in hopes of staying positive and strong so I can keep my mom in the fight. While she is 75. she is very tough and sassy. She works FT and just is petrified that this has returned to her liver and who knows where else. It did say that lymphovascular invasion was noted.
Any help would be amazing. Thanks all!
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Moth, stable and 15.5 months on your first line treatment and feeling good is fantastic! As my DH likes to say, "Keep on doin' whatchyer doin'!"
Denny10 and teedoff, I found that eyeliner is a pretty good stand-in for eyelashes. At the moment my eyelashes are a little crazy because of drug-induced hypertrichosis: they are curvy and occasionally grow in slightly the wrong place or direction. That's a new one.
Candy, of course you are on the fence right now. Hopefully meeting with the IR, surgeon, etc. will give you the info you need.
Faroutstar, hi again. You are correct about the PET scan. Please stay away from Dr. Google. He is a quack. There is a lot of info here on the BCO "main site" and a couple other reliable sources are the American Cancer Society and the National Comprehensive Cancer Network. NCCN publishes nice patient guides that you can print or read online. Typically your mom would be given hormonal therapy -- since she has been on arimidex, probably faslodex -- perhaps with a targeted therapy like Ibrance. If her liver is in immediate danger she might start with a chemo like taxol. (Like your mom, my CA 27.29 tumor marker was high and my liver had widespread and large mets, but taxol clobbered them.) This is do-able. The fact that it took thirteen years to come back (as you said on another thread) may mean this is a slow kind of cancer that will behave well on treatment. When you two know the plan, I think you will feel better. And if you guys don't always feel positive and strong, that is ok! Just show up and take the next step. Breathe.
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Faroutstar
ER+ is good news. That means they can likely treat it with endocrine therapy which opens up many more options and also options with fewer side effects. Sorry, I can’t recall what treatments your mom has had and everyone responds differently but can say that I got three years out of Faslodex.
No, they won’t be able to determine spread from the biopsy. The PET will tell you this (or CT, I have never had a PET). They will probably do a bone scan as well. Each modality helps the oncologist to tease out more of the story. Oh, and lymphovascular invasion is probably how it spread. I was a long time between original diagnosis and MBC but had a lot of lymphatic and vascular invasion with my original tumour.
Don’t worry about questions. Ask away! We’ve all become a bit more familiar with the lingo and what it means as we have been thrust into dealing with the disease up close and personal. But stay away from Google! We’re here if you need answers to questions.
Wishing you and your mom all the best for a treatment that beats this back quickly.
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Dear Moth, uhh, thanks for sharing. I sometimes feel... if one is winning, we all are winning. Great feeling!:) Saulius
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Moth - happy dance !!! 15.5 months 1st line mTNBC!!!! Praying for more
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Nicole, m is for metastatic, esp on social media chats and hashtags about cancer. 😊
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So, I am a list maker.
I cannot really list pros/cons of local therapies until I know what the liver tumor board recommends for my case. Then I will hopefully meet with an RO or IR and I can listen to what the procedure entails, risks/benefits, and ask my questions.
But, I am making a list of systemic treatments that we could try next. I am still on first line therapy of Ibrance/ Letrozole. My MO wants a PARP next, due to the BRCA 2 mutation on the liver biopsy. But.... with the increased risk of leukemia with PARP's, I want to try something less risky as my 2nd line therapy. Save the risky PARP's for later. Why take such a chance now when I have been doing so well.
So... am I thinking of all options. Do these sound like all of them??
1. Change to Verzenio (works a little differently, and good for visceral disease) + Fulvestrant------- if insurance will ok Verzenio with progression on Ibrance
2. Everolimus/ Exemestane-- if my MO wants to continue an AI for the PR+
3. Xeloda
Anything else you can think of? Thanks for your input. I can also ask about clinical trials at my facility--- I cannot travel to other sites for their trials.
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I wanted to know more about the leukemia risk and PARP inhibitors, because every treatment we have on our list needs a risk vs. benefit analysis. Often the benefits outweigh the risks for us. One question I ask is, what are the chances of a serious consequence of this drug vs. the chances of another choice not controlling the cancer as well? There have been two drugs recommended for me (that were not directly to treat cancer), that I reject because the possible side effect is too awful for me. But mostly I take a deep breath and jump in the pool because stage iv bc is not for sissies. (Golly, not calling anyone a sissy, I mean I just know I have to be brave and take a chance on a therapy helping me.)
I found an article in Oncology Nurse Advisor that says "MDS or AML has been reported in 0.5% to 2% of patients taking the various approved PARP inhibitors. Reports indicate that the patients had received prior treatment with platinum-based chemotherapy or other DNA-damaging agents, and most of the cases of MDS and AML were reported in patients with BRCAmutations. BRCA gene is involved with repair of DNA damage, and defects in DNA repair may increase the risk of developing MDS or AML. Because of this, MDS or AML are more of a concern in patients with BRCA mutations." If I am interpreting this correctly, there is risk up to 2%, but since this applies more to people with germline/inherited BRCA mutations (rather than people who have tumors with a somatic/tumor BRCA mutation found on Foundation One, Guardant, etc.), your risk would be lower. So in your place I would ask the doctor to find out what my actual risk might be. I would also ask, when patients develop this, how long does it take to show up? If the answer is twenty years that puts it in a different perspective.
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Candy from what you wrote about treatments you have a LOT of options...I blew through 5 in 2 years...I would see all that as a positive. I wish I had 4 treatment options... Glass is 1/2 full lady!
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That looks like a good list of next possibilities. After an aromatase inhibitor failing, I would ask to pair either the Everolimus/Afinitor or Verzenio with Faslodex. I'd also say, "It seems like I see more people succeed on Verzenio than Everolimus. Is that correct?"
Maybe your facility has a clinical trial of one of the new oral SERDs? May be even better than Faslodex.
Your F1 did not show a mutation in PI3KCA or ERBB2, right?
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Nicole- Yes, I thank God that I have been on first line therapy for 3.5 years. I am very thankful for my MBC experience so far. I have not had it as bad as most on here, including you. I just wanted to see if anyone had any more ideas for my "list" or if it sounds like I have covered my bases.
Shetland- Yes, the risks of leukemia with a PARP is small. But why take that chance with my 2nd line of therapy? That is what I mean. Yes, with MBC we take chances, but I want to go from least risks to more risks later--when I am running out of med options and have to take more risks or die. Ibrance is pretty well tolerated--- Yes the fatigue is horrid, the low white counts are creepy (even though they say infections are not the same as infection risk on IV chemo). With AI's the joint pain, constipation, hot flashes, thinning hair, all are not fun. But, as my MO puts it, I am on a pretty well tolerated treatment plan. So, if I need to change to something else why jump into the deep end of the pool with PARP's next. I read that the leukemia risk can present itself even with brief exposure to the drug. (Cure-ious posted an article that said that. I don't remember what Thread. I will try to find it and repost the link on here later) So why take that chance right now? Go with something that can be more tolerated per se. Verzenio diarrhea may not be so bad with my no pooping for days at a time now. Haha.
No, I did not show a PI3KCA or ERBB2 mutation. My only actionable mutation was the BRCA 2.
Just wondering if my list is pretty accurate, or is there anything else I didn't think of. I will review Bestbird's Guide too.
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Here is that link that Cure-ious posted to the article about PARP's and leukemia risk.
https://www.medpagetoday.com/hematologyoncology/le...
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Hey all, Does anyone know the clinical trial based on [177Lu]-NeoB administered in patients with tumors that have GRPR (overexpress gastrin-releasing peptide receptor)? I now have a chance of being in this trial. The treatment with Lu-NeoB is to use the radioactive molecule (Lu) that can destroy the cells overexpressing GRPR. Before Lu-NeoB, patients will be administered with Ga-NeoB to see if their tumors carry GRPR. If the Ga-NeoB test is negative, the trial will be discontinued.
A quick background about me: this March, I had undergone 4 lines of treatments within 7 months, and the 4th line failed at the time. And my liver tumor size was about 9cm then and grew continuously. In April, my MO and IR discussed, deciding to use SBRT (it is not 100%SBRT though, more like low-dose SBRT). In 3 months, the tumor has shrunk to 2.7cm. There are currently other small liver tumors that the SBRT didn't and couldn't target at the time. I know clearly that I cannot have radioactive treatment to the liver again in a short period of time. My MO was surprised that my tumor is so responsive to the radioactive treatment. Recently, she shared the above clinical trial info. with me, and thinks it may be beneficial to me given the efficacy of my prior radioactive treatment.
I asked my IR what this Lu-NeoB clinical trial really is and what is the catch of it. He said some people called it radiopharmacy, which combines both benefits of radioactive and chemo therapy. One research project (see the link below) using the similar logic of treatment in prostate cancer clinic trials phase III with significant success, just published a few days ago in 'the New England Journal of Medicine' (one of top-tier medical journals, I know the journal is very reputable when he mentioned).
https://www.nejm.org/doi/suppl/10.1056/NEJMoa2107322/suppl_file/nejmoa2107322_appendix.pdf
The new treatment of the trial I am offered is different from Y90/SBRT/Ablation, cause it goes through the whole body not just liver. My IR thinks this treatment is promising and expects there will be more and more similar clinical trials coming out very soon. In fact, I was offered with another clinical trial (same logic but targeting with different kinds of protein receptors of cancer cells). If you are interested I can share it here.
Next week I will discuss with the clinical office people and the primary investigator doctor for more detail. A no-brainer question is that this clinical trial is still new in the area of metastatic breast cancer. I wonder if any of you have ever heard of this or participated in the trial (other similar types of trials are fine too). Thanks
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I get what you are saying, candy. That is a serious (even if rare) risk for a second-line treatment. And we do not even know that BRCA is the driver. I was not advocating for it, just thinking about how the risk fit in to the big picture.
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