How are people with liver mets doing?
Comments
-
Grannax - i used 3 neupogen shots following my treatments with Abraxane to increase my neutrophils and WBCs. My husband was able to give me the shots at home (one per day for 3 days following infusion). When he was on a business trip (before COVID), I was able to do it myself. I did not take Claritin or anything. It worked well and I never had any side effects from the shots. I believe that some people experience bone pain with the neulasta device that automatically delivers the bone stimulating agent the day after chemo. I'll be praying that your new chemo is working!
Theresa
0 -
Got my Tempus report today. And a call from MO office to reschedule a telephone visit for Thursday.
Ok, I do not understand most of this Tempus report. But looks like only actionable mutation is the BRCA2, which also showed up in the 2017 original liver tumor biopsy report (Foundation One that time). TMB is 5.3 (whatever that means) and Microsatellite instability is "stable". Biologically Relevant is CDKN1B and MAP3K1 (whatever that means). FDA approved Therapies are PARP inhibitors.
This is the DNA portion of the test, awaiting the RNA portion. But must be enough for my MO as she scheduled an appointment for Thursday to discuss.
Thoughts.....
0 -
Hi, candy. My thoughts:
Your onc may want to discuss using a PARP inhibitor such as Olaparib (Lynparza) as they have been shown to work well with BRCA-mutated bc, whether germline or somatic (see below). It seems like a good thing to have another weapon in the arsenal that is a targeted therapy rather than chemo.
https://www.oncnursingnews.com/view/parp-inhibitors-are-a-mainstay-in-metastatic-breast-cancer
Have you had germline BRCA testing to see if the mutation is somatic (just in the tumor) vs. germline (in all your cells, inherited)? Not an inexpensive mail-in test that only checks for a few BRCA mutations, but a thorough one that checks for many BRCA mutations?
The "other relevant" part could mean they looked for mutations in those but did not find any mutations. They look at microsatellite instability and tumor mutational burden to see if the checkpoint inhibitor pembrolizumab (Keytruda) might be on the table (for high burden/unstable). I do not know if your tmb number is considered high but I'm guessing not since the report does not name pembro as a possible treatment.
0 -
granna, I have used neupogen & grastofil a lot because low wbc's are a common issue for me. The shots themselves are easy though some people can't psych themselves up to do the stab & then it's easier for a 2nd person to do it. But it's really easy. Btw for least pain, stab fast, but do injection slowly. If you jam on the syringe fast, it will cause more pain in the tissue. Some people also like to take them out of the fridge 30 min ahead but I find I don't notice the temperature if I do the injection slowly.
I take an antihistamine. We don't fully understand the mechanism but histamine release may be a consequence of the rapid bone marrow stimulation. Here's a clinical pain management article that discusses it & the use of an antihistamine. Loratadine is what i use. https://www.practicalpainmanagement.com/treatments...
0 -
ShetlandPony- At diagnosis in 2017 I had genetic testing and was BRCA negative-- to see if family members could be at risk. Then had the genomic testing in 2017 also and it showed BRCA mutation. I was told back then that it showed my breast cancer was not inherited but acquired (by environmental factors possibly?). Is that what you mean?
But, with the Tempus testing now, it did not show ESR mutation so will the hormone therapies still work? My ER flipped from positive to negative now. But PR still positive. So, HR positive still???
0 -
TMB (tumor mutational burden) has to be over or equal to 10 to be "high" & qualify for pembrolizumab
Definitely PARP inhibitor is on the table with the BRCA mutation.
The other identified things are names of genes. CDKN1B is cykline dependent kinase inhibitor 1B. It's one of the genes that puts the brakes on cells replicating. If yours is low, that could be one of the drivers of your cancer. (it's on chromosome 12)
if you think about the category of cancer drugs CDK4/6 inhibitors, like Ibrance, they are trying to target that same pathway & make up for the faulty genes not working to stop cells from replicating.
MAP3K1 is another protein kinase gene (chromosome 5). It's implicated in breast cancer but I'm not sure its role is well understood.
remember we have a thread too specifically for going through genomic tests
https://community.breastcancer.org/forum/8/topics/...0 -
Moth- I cross posted to the genomic Thread, but since we have a discussion going here I wanted to expound on your comments here.
My CDKN1B was 37.8%--- low or not?? And since I am on a CDK inhibitor now (Ibrance) then would we continue it?
This is waaay over my head.
0 -
Interesting discussion here. I do intend to talk to another IR at Hopkins and see what he thinks. Thanks for reminding me of your doc's name, Nicole. And HopeandGratitude, thanks for the info about y90.
Still in rehab, until next Monday supposedly. Now I have a new symptom. When I walk in the gym here, or try to exert myself in any way, I feel like I can't catch my breath. Lungs are clear; my oxygenation is great (97,98%). Doc and therapists think I have developed some sort of anxiety syndrome and that's what's causing it. This does not surprise me after my latest experiences. So the doc has prescribed some kind of anti-anxiety med that I can request on an as-needed med to try and quell my panic attacks.
So much fun here.
0 -
Oh my goodness, Bev. Not another issue to deal with! You know, what you have been through lately is a looong traumatic ordeal, so it would not be surprising to have an anxiety situation. On the other hand, so many times we hear of doctors "diagnosing" anxiety when they do not know what is really going on and can't be bothered to pursue finding an answer. I see it as a form of blaming the patient rather than admitting they do not know. In some cases they really need to figure out the real cause of the symptoms. What is your feeling about this?
0 -
BevJen- Checked for a PE- blood clot in the lung? Clots are a possibility after orthopedic surgery. And cancer patients are more prone too. In my radar since I just had a PE a couple weeks ago.
0 -
hi all, my mom and i just received the most devastating news. her MO was gone today at conference and a nurse practitioner told her she had 6 months to live without treatment, but if treatment did not work (as it has not been...) that the prognosis would be about the same. she then asked her if she even wanted to do the treatment (starting doxil) implying that there's a decent chance she may not respond. the cancer is crazy aggressive this time around.. not even 3 months after her last scan, the liver tumor has grown to 9.8cm even after radiation and there are new spots in the liver, lungs (previously clear) and the two lymph node spots are still there. was NED until less than 6 months ago and now this. i hate that the NP would put a time limit on things and i'm nervous that MO isn't even bothering with y90 or harsher chemos now because he thinks she won't tolerate it and there's no point.
i don't even know what to do. she has plenty of untouched treatment options but it seems nothing is working before it's too late. i think i should start looking at trials but i don't even know how to begin. i'm really kind of lost with all this and i really appreciate the info/support from you all.
0 -
macbookair, ugh, that sucks.
I think practitioners vary about how they convey this info and some don't have the difficult convos but I thnk the NP is being honest in order to get informed consent. so yeah, *untreated* mets to liver (actually untreated stage 4 with mets to pretty much anywhere) does have a terrible prognosis. But your mom just needs one thing to work. it could be the doxil that knocks it down & then she can switch to something for maintenance. Doxil is heavy duty so has a good chance of working and the thing is we just don't know in advance what will and won't work. I don't think the NP is saying don't try it, I think actually ethically they have to say how serious things are because studies show most people do not understand the severity of their disease and might not be making the decisions they really would make if they had more info about it.
Is tucatinib an option or is the timing wrong for it?
0 -
macbookair,
You are trying so hard to help your mother. It must be overwhelming. I care!
First-I wonder if y-90 would even be effective if there is such aggressive growth. MOTH is right it only takes one drug that works. I hope the MO will call you both and discuss best options. You deserve that.
second- is there a support group at your mom's clinic for caregivers? You may benefit from talking to someone in person. This is sooo much to deal with, especially when you are young.
Keep us informed.
Dee
0 -
moth and dee, thanks so much for your words. it's a really tough time for me. yeah i can understand where NP is coming from, i definitely understood the severity of the disease but i guess the MO can be optimistic and she wanted to be very clear in case my mom didn't. and yeah i think at this point y90 wouldn't do much. i really hope the doxil works, and tucatinib is definitely an option for maintenance afterwards, maybe in combo with something else? MO and i communicate via email pretty frequently so i'll definitely talk with him.
unfortunately i live out of state so i can't find a local support group but i do participate in a cancercare online support group for caregivers and it is super helpful!
0 -
Dear Bev, uh, it is sooo good to have you back. Feels stronger here right away. Hope you deal with the latest issue quickly, as you have dealt with these other ones. You finally deserve some good rest without other issues.
Macbookair2018, people here are right - one right drug and things can improve significantly. If we talk aggressive cancers, cells divide quickly, and chemotherapies have good chance. Again, chances also might be that PIK3CA drives changes:/ I know there's not much data on anti-HER2+ together with e.g. Alpelisib but maybe it is worth to try or at least worth writing to the investigators of such clinical trials as https://clinicaltrials.gov/ct2/show/NCT04208178? I mean she might not qualify for a trial but you could get encouraging answers to go for a therapy. Also, local therapies, as discussed here before, can be applied to main tumors, and then the small ones will be killed by other means. I don't really think options for your mother are exhausted, and I certainly don't think time-limits are anymore applicable in 2021! Doctors have been wrong so many times that mostly they are very careful with predictions...
Saulius
0 -
Moth. Thanks for the info. I read it. Interesting article. I won’t be giving them to myself this time. I have to go to UTSW for three times in a row. They did not give me a choice. I’m going to just take my Zyrtec and see how it does.
Bev Jen. You might not be having a panic attack. I had a similar thing happen and it turned out to be a heart arrhythmia called SVT. I would feel out of breath but the pulsox said Oxygen was 98. But HR was 160. Is your HR elevated? The cardiologist saw the SVT on his tests, Holter monitor, but elected not to do an Ablation on it. I also found out that my Tramadol was exacerbating the SVT so I had to go off of it. Feeling great now. SVT rarely acts up. Good luck on rehab. It’s hard I know. Keep up the good work.
I get to go to my granddaughter’s Awards Ceremony today. They don’t have graduation from 8th grade, so I guess this is it. She’s a smarty pants so I’m sure she’s getting several awards ( I never got any awards Lol). Hope I’ll get a pic with her that I will share with y’all. So proud of her. Can’t believe she’ll be in HS this fall.
0 -
Cross post with the Ibrance Thread---
I will meet with MO by phone tomorrow (Thursday). I have been writing down questions. Next scan is due mid June. I will ask if going to wait for next scan to see new measurements, and then go with the plan we discuss tomorrow based on biopsy results.
Question for you all******* Since I flipped ER from positive to negative will we still treat with hormonals or with Fulvestrant? Or are those off the table?
Trying to think of my options--- no Piqray since no PIK3CA mutation, no immunotherapy with my TMB low and no PD-L1 mutation. Wondering about Fulvestrant. Or will I go to a PARP. Or Xeloda.
What sounds reasonable with the liver mets? Is PARP's used alone? How about Xeloda, used alone? I have been on Lupron, Letrozole, and Ibrance. Seems odd to go to a single agent.
Thanks for the advise/thoughts.
0 -
Candy - This is all so complicated and confusing isn't it? And the answers are very often not clear as to the how and why things respond and or things don't. I was still ER positive when my mets moved from my liver to my bones (based on bone biopsy), so they put me on falsodex and xgeva and SWITCHED me from letroszole to exemestane. I had no ESR1 mutation in the bone met, but it popped up anyway while the verzenio was controlling the liver mets. I have been on verzenio, exemestane, faslodex and xgeva for a year and then, "ta da" 2 new liver mets. Again, they wanted to keep me on the verzenio combo because I had no new bone mets and the 8 original tumor mets were quiet, so they considered this good disease control. I had a biopsy on one of the new tumor mets and that is how I know I am still ER positive (80%) and PR pos (30%) although that was negative in bone. Waiting on results from Foundation 1. I had Y90 to the two new liver mets. I pray that worked but awhile until I know (july). Until then or if something else pops up in thoracic area (CT in June), I stay on the verzenio combo. I am ok with that because I don't want to blow through therapies, so I will stay on this as long as is medically sound. I don't know if this helps you, but I understand the "yo-yo".
0 -
Hope- Yes this is all so confusing.
My main question is since I flipped ER from positive to negative, do we table the AI's, hormonals, and fulvestrant? Do Xeloda or PARP's only?
0 -
If I may, I would like to call on your experiences because I'm at a major crossroad and I do not know what to do. Last June scans showed 3 new mets in my liver. Tried Kisqali, had an allergic reaction to it. Going forward, scans showed those mets in liver were growing, but not terribly fast. Have stayed on Faslodex all this time, because in the 7 years that I've been on it, have only had 3 new bone mets. Now my oncologist is throwing all these potential treatments at me, and I research them, and I'm overwhelmed by the side effects.
I have always been against the idea of using chemo because I am adamant about retaining my quality of life. I do not look like I have cancer, and I do not feel like I have cancer. I can literally do anything I want, go anywhere I want. I have a couple of days of discomfort after my Faslodex shots and that is it.
Scans last week show "significant increase of metastatic disease in the liver" (both lobes). I see my onco on Monday.
Part of me would prefer to go to hospice, but another part of me wonders if radiation to the liver would buy me more quality time.
So, in your experience, have there been treatments that only minimally affect your quality of life (no hair loss, no major fatigue, no vomiting/diarhea)? Being sick for a couple of days doesn't bother me, but suffering through side effects for weeks is something I just don't want.
Any advice would be greatly appreciated, as you are all my heroes.
0 -
terri-c: So sorry you are at a crossroads. My wife, Polly, was similarly at a crossroads. She had tried all kinds of treatments including a clinical trial and nothing seemed to slow down this liver disease. She reluctantly started Abraxane IV chemo three weeks ago. The good news: her liver enzymes went from 1000 to 700 to 350 after just two doses. The side effects weren't terrible for her: 2-3 days after the chemo she was pretty fatigued and didn't have much appetite but she forced herself to eat. She hasn't had any vomiting/diarhea, but everyone reacts differently. Once she got through those 2-3 days each week (sample size of 2), she felt pretty normal. She will lose her hair, but if this can finally slow down these liver tumors, I think she'll take that. Now, the bad news: her white blood count went dangerously low so she has to pause the IV chemo. She had blood work yesterday; they're going to draw again tomorrow; and yet again next Wednesday. Hopefully she can restart the chemo. Interestingly, she's gone from being totally anti-chemo to now wanting it because it seems to be effective for her. Again, everyone is different and reacts differently. Best of luck at this crossroads point. I know how gut-wrenching it can be.
0 -
terri c.
Were those liver lesions biopsied for genomic and hormone status?
I am on Xeloda (oral chemo) for my fast growing liver mets progression in 2020. I was hit hard and fast. The side effects (n/v, diarrhea, HF syndtrome) caused eventual dose reduction and now I have good quality of life..really good. It has been 15 months.
Recently, I had one liver met to grow, it was zapped with SRBT. I was able to stay on Xeloda.
I will know in June how I stand, but I feel great right now.
0 -
Mike, I am hoping for the best for Polly and will keep her in my thoughts and prayers. I think I might be where she was....
Sandi, no we haven't biopsied yet. I was actually surprised she didn't want that first. Because I said no to the treatments she was proposing (based on the significant side effects), my onco seems to be a bit frustrated with me, and I don't think she knows what to do with me.
I've been looking into the radiation treatments for the liver, but they all seem to be combined with some type of chemo.
Staying out of the sun (when my summers are spent with my family poolside and at the beach) mouth sores, rashes, vomiting/diarhea and the fatigue are what bother me the most about the treatments as I have experienced those with Zometa and Kisqali. The hair loss doesn't bother me as much, since that is one of those things that I'm pretty sure I can get used to. Its the other stuff, plus the threat of allergic reactions to the meds (which I've had issues with my whole life).
0 -
Parp inhibitors i heard are great. I asked about them for myself since I am Brca2 positive, and of course, "we don't have access to them" was the answer. I'm getting tired of this No access bullshit . Pardon my language. I am in Canada but my province hasn't adopted the meds as far as I know. Same with CDK 4/6 inhibitors. The only way to get them without paying $72000 a year, is when the companies release it on compassionate grounds. Its not impossible to get, but they make it difficult.
Terri, I am on Abraxane for liver mets and it has so far worked wonders. QOL is pretty good i have to say. It's been easier than my first time around which was FEC. the infusion is 30 mins vs the 6 hours. I feel blah the first day, the second, I wake fine but by the end of the day I'm tired, then it's pretty much smooth sailing until the next week. Everyone reacts differently but most people I know who are on it say similar to me. I am 33 so I feel like that has something to do with it. I also stay active which helps.
I did lose all my hair though. Including lashes and eyebrows which didn't happen to me the first time. My hair is growing back while still on treatment though.. even if it is duck fuzz. I had been gorwing my hair for 2 years before recurrence and basically a month after getting my first shoulder length , evened out , cut-- recurrence.
Macbookair- so sorry you're dealing with this. The others are right though, all you need is one to work. But its such a crap shoot and there is no magic answer that will make the decision to do or not do treatment, easier.
0 -
terri-c,
The chemos for mets are so much easier on your body than early stage ones. I have been on many chemos and there are only a couple that my hair fell out. The last one I was on was weekly doxirubicin and it was pretty easy. a bit of nausea which was easily managed with metonia and my hair actually grew in thicker than it had been on eribulin. good luck.
0 -
terri c, I am surprised that you are in the position to make treatment choices without the benefit of a bx for hormonal status and tumor genetics.
**Maybe time for second opinion..**
Also please consider downloading Bestbird's (author Anne Loeser) "Insider's Guide to Metastatic Breast Cancer". She goes over all treatment choices. I will edit to add link. You can also buy it on Amazon.
If you are in visceral crisis, for example, fast growing liver mets, chemo is the quickest way to control. Once stable, you usually move to maintenance therapy. I was put on Xeloda for widespread liver mets at 2020 progression. I am now on 2150 mg/day, 7 days on, 7 days off. I have no hair loss, have energy, hike 6 miles (well, sometimes..ha) and now training for a 3 day bike trip.
Please don't give up..don't think you are ready for Hospice as you mentioned.
Per Bestbird::
Amazon at https://www.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060X or send me an email at bestbird@hotmail.com to obtain a complimentary .pdf
0 -
Terri C, my wife's initial treatment for her extensive liver mets was xeloda, and it worked very effectively. If it works, side effects can be managed by dose reduction and timing of doses. Her worst side effect was the hand foot syndrome, mostly burning feet, but by reducing the dosage and wearing sandals, she was able to manage it. After a year on it, and it continued to work, she switched to ibrance and letrozole because she had the opportunity to before the compassionate patient access closed.
0 -
Terri-
It is difficult to face progression. Going into hospice is an individual choice, but seems too soon considering how great you are feeling.I would think you should get a liver biopsy with NGS testing like TEMPUS or foundation one. It could indicate what targeted therapies you could qualify for. If you have the esr1 mutation then Faslodex is not as effective. You may qualify for a trial that is another hormonal therapy that works better than Faslodex. I am on a trial that gives me great QOL and it's a pill.
The 2 chemos I have tried did not work for me but that doesn't mean they won't work for you.
Doxil was very tolerable for me and no hair loss(I used cold caps) some low anc which I treated with filgrastin shots
Xeloda was ok but I hated the hand foot syndrome- definitely affected QOL for me.
If your liver tumors are few and smaller you could try local treatment like y-90 or SBRT or microwave ablation. There is a thread for that here.
I hope your search for your next step yields the right, effective treatment for you. Everyone is different, but you have a place here to ask questions and hear what works for others
Dee
0 -
Hi Terri-c,
Just chiming in with the others to say that many of the treatments are very tolerable, allowing us to maintain a good QOL. I have been on Taxol, which I had not trouble with but unfortunately it didn't do anything to control my pleural mets. Now I am on Xeloda and, while I do have some fatigue and am battling the HFS, I have not had any other negative effects.
Unfortunately there are no easy answers with this disease. Progression, in an of itself, can cause all manner of issues including pain and fatigue. And while radiation is an option and many people do very well, there is also risk associated with this so the outcomes are not 100% certain. Sending good wishes as you navigate options.
0 -
Terri im not gonna type a long post here bc everyone covered it...but I am gonna say this...Halaven chemo was to me, WAYYYYYY eaiser on me than Falodex/ Ibrance and Letrozoe and now also eaiser than Affinitor...WAYYYYYY less side effects I felt great the only thing was I had to shave my hair..but who cares when the chemo is saving your life..also it gave me silent GERD...I would get a raspy voice.... You have to do whats right for you and if you are against chemo I am not going to try and talk you into it...all I am here to say is you cant say that chemo has worse side effects than faslodex etc...bc for me...it didn't. Also Halaven was only a 15 min infustion...I went for faslodex injection just this morning and it took longer than the infusion of Halaven...
0
