How are people with liver mets doing?
Comments
-
NouzayO...Lynparza was good to me. Worked fast just not long enough (5-6 months). I continued working out throughout up until things changed drastically for me back over the summer. It seems like I been to war since. Nothing has really worked as good since my mbc diagnosis in Dec 2015 like Ibrance/Faslodex. Lynparza appeared it would work just as well and it did but didn’t last. I have the BRCA2 gene inherited. The reason why my Onc at Emory decided to add it back to the mix because things changed so quickly for me that she thought I might have mutated to triple negative but my liver biopsy confirmed I was still ER/PR+. The Lynparza started showing mixed response so not a total failure but I was so critical I needed something fast acting like chemo. My latest scans showed all the mets to my liver are now scar tissue. But the healing of my liver and the cumulative effects of everything I’m on right now is kicking my butt. We are trying to decide what to do next...but staying on a PARP she fills needs to be part of whatever we decide.
0 -
Hello all! Well, after over a month since I had my liver biopsy, I called Foundation One and received a copy of my report. My MOs office initially said it would be in last Tuesday and then changed it to this Tuesday. They haven't mentioned anything yet and the report is dated as of last Friday. Not too different than my Foundation One report on my supraclavical lymph node from diagnosis in 2014 on the key items in the report. No new "smoking guns" that will make me eligible for a super promising treatment although there are many trials on various alterations noted in the report. Also, my FGFR1 amplification was confirmed which makes me eligible for the NCI MATCH trial my MO was considering for me. The biggest change is the addition of the ESRI mutation representing resistance to hormone therapy. Not surprising at all as it usually comes on during the development of AI resistance while on an AI. One alteration dropped off since last time but it wasn't an actionable alteration anyway (no treatments or clinical trials targeting it) - MYST3. Last time, my MO only gave me select pages of the report with the alterations - 7 of them. I did see a note about 4 additional variants of unknown significance in my prior report but didn't have access to what they were or know what "variant" means in this context and how it differs from an "alteration". "Alteration" in the F1 report means either a mutation or an amplification. Thus, I had 7 total alterations last time and 4 variants of unknown significance and now have 13 alterations and no mention of variants of unknown significance. Some of these new alterations noted may not have been tested when my last Foundation One test was performed so it is hard to know exactly what changed with all of these. F1 is constantly adding new tests to its gene sequencing panel. Here is the summary:
Biomarker Findings: (testing for likelihood that immunotherapies Keytruda and Nivolumab will work - in my case, the results say no)
- Microsatellite status: MS-Stable
- Tumor Mutational Burden: 0 Muts/Mb
Alterations:- CCND1 amplification
- ESR1 Y537S
- FGF19 amplification
- FGF3 amplification
- FGF4 amplification
- FGFR1 amplification
- GNAS amplification
- MYC amplification
- NSD3 (WHSC1L1) amplification
- PIK3C2G E1231K
- PIK3CA N345K
- RAD21 amplification
- ZNF703 amplification
No reportable alterations:
- ERBB2 (this is testing for HER2 mutations or amplifications)
- BRCA1
- BRCA2
0 -
Hello all! Well, after over a month since I had my liver biopsy, I called Foundation One and received a copy of my report. My MOs office initially said it would be in last Tuesday and then changed it to this Tuesday. They haven't mentioned anything yet and the report is dated as of last Friday.
Not too different than my Foundation One report on my supraclavical lymph node from mets diagnosis biopsy in 2014 on the key items in the report. No new "smoking guns" that will make me eligible for a super promising treatment although there are many trials on various alterations noted in the report. Also, my FGFR1 amplification was confirmed which makes me eligible for the NCI MATCH trial my MO was considering for me. The biggest change is the addition of the ESRI mutation representing resistance to hormone therapy. Not surprising at all as it usually comes on during the development of AI resistance while on an AI. One alteration dropped off since last time but it wasn't an actionable alteration anyway (no treatments or clinical trials targeting it) - MYST3. Last time, my MO only gave me select pages of the report with the alterations - 7 of them. I had 4 variants of unknown significance but they were not listed in the pages I was given. I now have 13 alterations and 5 variants of unknown significance. Some of these new alterations noted may not have been tested when my last Foundation One test was performed so it is hard to know exactly what changed, if anything, with all of these. F1 is constantly adding new tests to its gene sequencing panel. Here is the summary:
Biomarker Findings: (testing for likelihood that immunotherapies Keytruda and Nivolumab will work - in my case, the results say no)
- Microsatellite status: MS-Stable
- Tumor Mutational Burden: 0 Muts/Mb
Alterations:
- CCND1 amplification
- ESR1 Y537S
- FGF19 amplification
- FGF3 amplification
- FGF4 amplification
- FGFR1 amplification
- GNAS amplification
- MYC amplification
- NSD3 (WHSC1L1) amplification
- PIK3C2G E1231K
- PIK3CA N345K
- RAD21 amplification
- ZNF703 amplification
Variants of Unknown Significance:
- CEBPA amplification
- EPHB1 V562I
- KEL A423V and A445V
- NBN amplification
- TEK S201L
0 -
My liver bx was sent off for another opinion.It's a malignancy with ER+ but doesn't look like normal bc.
0 -
2 weeks down and still in hospital trying to get my liver under control. Only have 1 chemo choice that I can use on my liver I think it's CMF? Not 100% sure. Anyone been on this? Its older drugs. I'm not giving up this fight but really need something that will work.
0 -
Tennille, I have no experience with CMF, but you're in my thoughts. Big hugs from Texas.
0 -
Tennille I did CMF 25 years ago with my primary diagnosis. I found it relatively easy. I didn’t lose my hair. My most annoying side effect was conjunctivitis every cycle and I was very light sensitive. Good luck
0 -
Tennille,
I'm in a liver bind myself. My Oncologist has me starting Gemzar and Carboplatin tomorrow. The schedule will be first week: Gemzar, second week: Carboplatin, third week: Gemzar, fourth week: off. Then lather, rinse, repeat.
My AST and ALT are elevated, but the bilirubin hasn't popped up yet. I've already done CMF, so maybe that's why I'll not be using it.
The plan is to stabilize the liver, then re-assess. I am scared more than I care to admit.
Jennifer
0 -
Blainejennifer, my heart so feels for you.. That fear is the worst for me, I absolutely hate hate feeling scared. If there is any faith in you, even a drop, ask God for help. I know its not easy to believe or trust or whatever, but at the end of the day if anyone has the power to help, it's Him? Sorry I don't want to offend you in any way, but I am praying for you dear one xxx
0 -
Tennille and Jennifer...positive thoughts are with you both that chemo will bring you to stability.
Jennifer...I’m on Gemzar Taxol. I get Gemzar Taxol week 1, Gemzar alone week 2, then a week off. Gemzar is hard on the RBC, WBC, and platelets but it’s been over 4 months on this now and my labs continue to hold steady. My only issue with the Gemzar is a tiny bit of nausea here and there.Most importantly I went from being in a liver bind to stability to tumor shrinkage, so it’s working for me.
PB
0 -
Blaine Jennifer: I have been on carbo and Gemzar for 16 months. I had diffuse cancer throughout my liver, now very little cancer. It has worked well for me. I am triple negative compared to ER PR +. I am on a three week cycle. First week: carbo and gem, second week: gem only, third week: rest week.
I am on neulasta to keep white cell count up. Red cell count down a little but not bad. Platelets usually around 250,000 but last week down go 103,000. My platelets tend to bump up and down and usually is back up to The200 range so I have not had to miss treatments or get platelets.
Wishing you well on carbo and gem. Prayers and hugs.
Tricia
0 -
my cousin just started the gem carbo combo too. Platelets counts are really low. Not sure it’s its from Ibrance before or it’s the combo. Hope it will be as effective as it did on you and hooe she will be able to stay on it long time too
0 -
I was on Ibrance/Femera trial for 30 cycles when a liver lesion was discovered. I then went on the BYLIEVE trial but unable to tolerate the alpelisib but allowed to stay on trial receiving fulvestrant. I've had 5 of those now but my MO isn't convinced it's working, but my TM's have dropped from 56 to 51. Not alot I realize & it could just be inflammation or something. I had scans 4 weeks ago which showed a tiny increase in size of liver met, bone mets are stable. I will be rescanned again in another 4 weeks (trial protocol)
My question is, does fulvestrant take a bit of time to work like I/F does? Am I being delusional thinking that this small reduction in TM's might be that it's working? I've been on endrocrine therapy for 10 years now & my MO wonders if my cancer is becoming endo resistant.
thanks for any thoughts, cheers, dee
0 -
Dee, I dont know if this reassures you or not somehow but I read its been observed that after getting off letrozole, it takes faslodex 5 or 6 injections for it to be able to counterbalance the estrogen level that was kept in check via the aromatose inhibition. So much so that there are active trials where they combine letrozole and faslodex for that reason. My understanding is that, because the two drugs deal with estrogen receptors in a different way, the body goes into rewind mode.
I know this is far from being a scientific explanation LOL but the bottom line is hang in there, it takes a bit to show results!
0 -
Thank you Daniel86 for your "less than scientific explanation!" I really appreciate it. I'm just trying to wrap my head around what's going on.
My MO seems to feel that it's likely that I may be becoming resistant to AI's so she was giving me options which I'm trying to decide what I would do. I wish I could go back on Femera along with it, but I'm now second line & it doesn't get funded. It was a pretty easy treatment for me.
If my TM drops again in 4 weeks, I will push to stay on fulvestrant. thanks! cheers, dee
0 -
JFL. I get the results of my new liver BX today, finally. My last one, December 2016, was used for F1 test. It showed ESR1 and that was before I started IL, I'm very curious what this genomic sequencing test will show. I'm not surprised that my tumor was ESR1 because I've had plenty of AI for the past 20 plus years. I don't know who she sent it to. She said maybe the other one, Caris. It probably won't be back today.
My I R mentioned he wasn't absolutely positive that what he got was tumor or just old stuff. But, I think that was just wishful thinking. He's the one who did my y90 and he said he was hoping it would not really be new mets. There were several other lesions in my liver too. Plus the ones in my lung and chest are growing.
It's been 4 weeks since my BX. No my MO does not call with results or have a portal. I missed 2 appointments last week. One because I was too sick from AA, one because she had to reschedule. Normally, I would have known by now. It makes me think it came back the same in regard to hormone receptors. If it had changed I hope she would have called to take me off of this crappy AA.
0 -
Grannax2: Hoping they find some targets from your biopsy that can be treated. Let us know what you hear.
Tricia
0 -
Grannax2, didn't some of your bx go to hospital pathology to get your hormonal receptors? You should have gotten those results 7-10 days. Oh well. If you have that PiK3 mutation maybe you can explore trial for Alpelisib, but you can"'t have been on Fulvestrant previously.
0 -
Grannax, like F1, I believe you can request a copy of the test from Caris yourself. I called a number on the F1 website and gave them my name, birthday, biopsy date and ordering physician name and they immediately sent it to my email. If you are interested in the whole report, you could request it from Caris. When I had a liquid biopsy from another company, I was able to create a login and access my results.
I had my MO appointment on Friday and he had a paper in hand from NCI staring that I was officially “accepted” into the FGFR1 study. The only step in all of this that moved surprisingly quickly! My MO will now receive all the specific requirements of this trial. I am hoping that it does not require a 4-week washout like I thought I read in the poorly written requirements on the NCI’s website. There was some language about MO discretion which I am hoping applies at this step but I think it might be language left over/inadvertently included from a different trial where the biopsy is actually performed at NCI (like I said, poorly written and doesn’t make sense). The trial acceptance is good for 60 days and I am going to have my 4th Halaven treatment this Friday, get a PET scan to determine if Halaven is working and then decide what to do. I think Halaven is working. Not sure what I will do.
0 -
Yep my hormone receptors study was the same. ER 100% her2 -. We didn't talk about genomic testing. She was very concerned about the weight lose. Any ideas on what might help? Have any of you had this? Did you find a prtein shake that really good?
0 -
Grannax, do you have an appetite and want to eat? If you eat do you feel sick or actually get sick? Or do you just have no interest in eating? Are you drinking enough water and liquids to stay hydrated? I'll think about this and I'm sure others will be along with good ideas.
0 -
Grannax,
there's an over the counter supplement called D- ribose that I have successfully used twice in the past to get over my cachexia states. Which were induced the first time by radiations to the spine and the second time by the treatment I was on, I forgot which one.
At that time, I lost a few dress sizes because the thought of eating anything made me so nauseous that even years later, I can no longer even look at a salmon dish that one of my dearest friends lovingly prepared for me while in that state.
I don't wish to unduly upset you, but I believe this is a very common and dangerous condition that MOs don't really know how to treat, so I hope you get over that state quickly because the more time passes the harder it is to overcome....i remember that sweet and beautiful LaLady and Babs suffered from it.
Sending best wishes and warm hugs your way....
Another solution might be to ask your doctor to lower your medication and see if that affects your appetite. Loss of appetite could be caused by the stress you’re expiriencing at this time.
0 -
Good ideas. Yes I have no appetite, horrible taste in my mouth causing all food taste terrible. Sometimes even thinking about food make my tummy queasy. I don't feel nauseas all the time all the time. My doc did say if I keep losing they could hook me up with IV fluids. It might help. My kid are keeping me accountable by texting what I eat and when.So many of AA group. Had 30 pound loss, the had a scan showing its not working so that got to get off of it.
0 -
Grannax, I used Ensure Max (the one with no added sugar). I also worked really hard to barrel through eating to the extent I could (never skipped meals, even if I had no desire to eat; they would just be smaller and might be something more easily digestible if necessary). I also added healthy juices (Green Machine, pomegranate juice, tart cherry juice, orange juice). They have a lot of health benefits and the natural sugars help keep one's weight up. I would even eat so called junk food at times if that is all I could stomach (ice cream, chips, cookies, etc.). At the time, I felt the weight issue was more urgent than my overall plan to eat healthy and avoid added sugars, unhealthy fats, etc. I was able to keep the situation from getting worse and remain at a stable point by constantly working at it. I was struggling with cachexia for over a year and a half (starting with AA in 2017 and continuing on Abraxane and Doxil until December 2018). I started Halaven a month ago and all of the sudden, I have a ravenous, uncontrollable appetite that is catching me off guard. It seemed to happen over night and I am still adjusting to the new normal. I thought my stomach had shrunk and didn't have the capacity due to the liver mets crowding my abdomen but it appears that is not the case and the issue must have been the treatment only in my case.
Out of all my treatments, the only two that I gained weight while taking were Xeloda and now Halaven. I gained about 10 pounds rather quickly when I moved from Ibrance/Aromasin/Faslodex to Xeloda. If AA does not seem to be working, perhaps you could move to Xeloda. I would go back on Xeloda in a flash if I could. Was my most tolerable and most effective treatment to date.
0 -
Grannax, Ann Silberman, who writes the blog, "But Doctor, I Hate Pink" (also a FB page of the same name) is one of my Stage 4 gurus; she's in her 8th year of survival. In 2015, she wrote extensively about her cachexia, which isn't quite the same thing as a temporary loss of appetite from a specific treatment. She basically lived on tiny amounts of candy for a long time, then slowly began to be able to eat again. She discovered that none of the experts seemed to know much about cachexia and how to manage it. Hopefully, your loss of appetite will be temporary and an adjustment in meds will perk your appetite back up.
When you are up to it, read her blog post on this. If this link doesn't work, google her blog and it has a search function within it. All the best, sending good vibes and mojo from Houston.
0 -
Thank you Kattysmith. I'd like to read it. I remember someone mentioned lemon drops but I don't know what for.
0 -
Grannax2, when I was on AC, I was "green" all the time and food was just not fun to eat. I drank very, very cold chocolate Boost. I also nibbled on Ritz crackers and Blueberry cereal bars. I kept frozen 100% juice popsicles in freezer. A friend sent me frozen smoothies and I ate what I could tolerate. Later, I sipped on tomato soup with saltines. Try to find one thing you can tolerate and take it slow. I feel so bad for you. You might need IV fluid and nutrition. Please keep us posted. Losing rapid weight is not good for us.
0 -
SandiBeach, you are so right about IV fluids. Last year, a dear friend of mine with mets couldn't eat, couldn't keep much down when she did, and kept having to go to the ER for rehydration.
0 -
Hi everyone. Firstly thank you for all your posts and the humourous comments, I really enjoyed all the postings. I have been stage 4 for almost 5 years and it’s 22 years since my first diagnosis of stage 1. To think I was scared THEN. What a joke stage 1 was, I was 38 and happy to wave goodbye to my saggy boobs that fed 4 babies!
Now I am very nervous as I just finished 8 cycles of Taxol and it did nothing for my liver mets. Today I was swopped to Carboplatin and Gemcitabine, fingers crossed. My lung nodules and bone mets have been stable for that last almost 5 years but the liver story is scary. I am a healthy runner but my poor body is taking a beating and I have pain in my liver, no appetite and I am trying to keep my game face on for my children.
So thank you for all your stories.....there is strength in numbers.
Warm wishes to you all.
Paula.❤️
0 -
Hi Paula. I'm starting Gemzar/Cisplatin next week. Same thing. Been stable bone Mets for 7 years, now having some suddenly scary liver Mets. Also last chemo did nothing.you can also join the few of us on Gemzar over in the Gemzar thread.
Sunset
0
