How are people with liver mets doing?

vlnrph

Saulius is reading my mind! I had to stop the KEYTRUDA trial at UW-Madison in late July because my elevated liver enzymes wouldn’t respond to high dose IV steroids. Before hospital discharge, my oncologist wanted me to get my 1st doses of Taxol (paclitaxel)+Gemzar=gemcibitane. As a retired pharmacist, I had heard about these meds but considered them “old school”.

My port was already in so we did it. Unfortunately, 2 days later I had the worst weekend of my life. I scoured these boards but could not find recent information on this chemo doublet which has been around for decades. The fatigue was crippling. Apparently it was thought the dexamethasone I was given might bridge the gap coming down from methylprednisolone.

Instead, it was more like falling off a cliff. I became weak & dehydrated. An ER visit for labs/fluids, in addition to going on a proper prednisone taper, reassured me that I could survive. Then the mouth sores began. I’m thinking of starting a new topic here regarding older treatments and how people are managing. There must be a few of us out there.

jsniffs

@rk2020 - Thanks for your update on Enhertu!! I hope you are starting to feel better. I know you had a rough initial go. It looks like I'll be switching to Enhertu soon. I did two cycles of Trodelvy, and it seemed to keep some things stable (mostly the trip neg lesions). However, it didn't seem to have any effect on my liver (ER+). It's a bummer because I thought Trodelvy was fairly manageable, although I like the schedule of Enhertu better.

@vlnrph - I'm also curious about the more "old school" chemo options. Sorry to hear about your experience!!

@weninwi - Hopefully you are able to obtain Elacestrant soon!

husband11

My wife just had the Tipps procedure done to her liver. It was supposed to take 2 - 3 hours, but ended up only taking 15 minutes! She spent the night in the hospital, came home a bit bruised up, but is recovering well. The idea is that it provides relief to high resistance through the liver by shunting some of the blood flow through the liver. The bore a hole and install a stent to keep it open. Hopefully this relieves her ascites. There was a lot of preliminary tests, scans and ultrasounds done leading up to the procedure, and looks like they did their homework as the actual procedure turned out to be quite easy. I thought I would mention this, as some liver met patients do develop pseudocirhosis and ascites, and this is a form of treatment for the hepatic hypertension that can result in ascite, varices and bleeding.

weninwi

Husband11,

Thanks for sharing this. All new information for me. I'm glad the procedure went well for your wife and hope her ascities problem now improves.

bsandra

Dear weninwi, my point is that many "old-school" chemotherapies (and in that way new school targeted chemotherapies - ADCs) work around cell division time span. However paradoxical that might sound, the more divisions occur, the better chemo works, given good drug delivery to tumor (which also not always happens for many reasons). Some very fast growing solid cancers react to chemo very well. Other drugs (inhibitors, monoclonal antibodies, degraders, etc.) work in a different way - not that they are not effective (first we should agree on how we measure effectiveness) but in certain situations chemotherapy is the key. Like… her2+ is considered to be a very aggressive and usually fast cancer, so first line for it is docetaxel (or paclitaxel, or nab-paclitaxel) + targeted combo, and it works very very well for 80% of recipients (ORR).

From data that I see in your signature, and from what you tell us, I really do not understand why chemotherapy was never discussed with you? I also do not understand why there's a message spread everywhere that chemotherapies are "old-school"? Let's say nab-paclitaxel was approved for BC in 2013, eribulin - in 2011, and in that way they are not older than any "new" drugs. Most antibiotics are "old school", so why do we still use them? The answer is… because they work!:) The SE profiles also differ a lot from patient to patient, same as for ADCs, CDK inihibitors, antibodies, etc., and no one will know how they feel under chemotherapy until they try, so why does media scare people? I am not into conspiracy theories but when "new" price tag is 10-fold in comparison to "old" you start to have some thoughts:) Hugs,

Saulius

weninwi

Saulius,

Thank you for the explanations. At the facility where I get my care, I was told I was not a candidate for chemo because my ONC score was 18, and the facility uses a cut off 25 for deciding chemo or not (< 25 No; >25 Yes). I was not given any further explanation other than "that's our protocol". I knew that a high Ki67 meant the cancer had a rapid rate of turnover, but my MO has never talked much about Ki67 either, even when I've asked specifically. It's as if the doctor has just not wanted to talk about it. I've thought about changing doctors, but my MO is head of the department, so not an easy subject to bring up. I do have second opinion video visits from a Mayo Clinic MO about every 3 months, that thankfully my insurance has continued to pay for, and I get more complete information (she's thorough and a good communicator) and she offers her opinion of my treatment plan. I will ask her about traditional chemo and I also plan on asking her about Y90 treatments for my liver lesions. My MO has said "No". Thanks again.

bsandra

Dear weninwi, oh, I know perfectly what you mean by having a MO who's head of the department:/ Anyway, I think our situation does not let us being picky with treatments, and such procedures like chemotherapy or Y90 (among others) must be considered… Hugs,

Saulius

vlnrph

Made it to my paclitaxel/gemcitabine “off” week feeling OK so left town on a road trip for a few days. Round 2 was much more tolerable than the first however did include a dose reduction of the taxane. I kept my fingers/toes cool-cold using frozen gel packs during the 3 hour infusion and held ice in my mouth. No stomatitis except a small sore on my tongue.

Peripheral neuropathy remains, diminished from previously. The worst news I received recently was that the high dose steroids resulted in posterior subcapsular cataracts. These develop rapidly, not like the usual ones from aging. Initially, I was given a months long treatment schedule but an ophthalmologist called me at home & I got a consult appointment.

My optometrist, who made the diagnosis, assured me that he would assist in achieving a quick referral. I sent messages via myChart so that may have helped too. Both eyes will be done by the end of September (instead of Thanksgiving) which means I can get new glasses way sooner than Christmas. It will be wonderful to see clearly again.

eleanora

Vlnrph

I had cataract surgery on my right eye more than 15 years ago - well before my cancer diagnosis. Very easy procedure and recovery, and I'm sure it's been improved even more since my procedure. You will be amazed not only by the vision improvement, but by the intensity of color perception.

I wish you the best with it.

Eleanora

kariz

Hi all,

I’m 43 y old and in Jan found my hormonal BC is back with a liver met. It was 3cm in Dec when found, started Ribociclib which didn’t work and had progression to 9cm until June. Started to spread to the bones and a supraclavicular lymph node became very swollen and big, was preparing to go into radiation for it. In June started Alpelisib (piqray) which worked for a month, the lymph node got so much better, but progression was seen again at the 2 months CT; the big 9 cm tumor broke into many small ones, new ones appeared also.
They now started me on Xeloda, just completed my fisr cycle (14/7) and while the side effects have been not good, the most concerning is a suraclavicular lymph node which keeps growing since stopped Alpelisib. It is so unbearable, next week I have radiation intake, hope they can start quickly and hope for some relief.

I feel quite helpless by now, I’ve been such a fighter 5 years ago and now I just feel I’m losing and what if xeloda will not work either, how close am I to the end?

Depresive days, my husband is suffering so much also, and I am yet to tell my parents about it, I’m just horrified.

jsniffs

@kariz - I'm so sorry to hear what you are going through and how you are feeling. I've been at the BC thing for almost 8 years and the MBC thing for about 5 years. I've been through a lot of ups and downs, but the thing that got me down recently was the same thing as you - a fast growing supraclavicular lymph node (I first noticed it in April). It came on so fast and was so different from my other lesions. It grew into my pectoral muscle and became so painful to do just about anything (especially walking). I ended up doing radiation in June, and I was so happy I did. It knocked things way back, and the pain went away in about a couple of weeks. I feel like I got my life back. I hope you experience the same. Hang in there!

Also, there should be more options after Xeloda (e.g. clinical trials, Enhertu, Trodelvy, standard chemos). Have you done a biopsy/FoundationOne on the supraclavicular lymph node to look for additional treatment options?

Sending you lots of love.

kariz

Thank you so much @jsniffs for your kind words, made me a bit more positive about it and hope radiation will bring me same relief. The biopsy of the lymph node showed the same BC, just a little less hormonal dependent than the rest.

Sending you lots of love back, you also hang in there, your story gives much hope and inspiration

weninwi

Kariz,

I second jsniff's question: Have you had a genomic profile test? Genomic testing is different from a pathology report, which gives estrogen receptor results, done by your cancer center. Genomic testing can be a liquid biopsy like Foundation One or solid tumor biopsy, done by different companies. The liquid biopsy test is the fastest. Genomic testing will show what mutations may have developed. This information can then guide treatment decisions. My apologies if you already know this info.

kariz

That’s a good question @weninwi and thank you for insisting, I was only thinking about the pathology.

I know they’ve done the genetic testing on the liver met - that’s why I qualified for Alpelisib/Piqray which worked for a month or so. This is the info that I got:

“In PCR and next generation sequencing a pathogenic mutation found in exon 21 of the PIK3CA gene (c.3140A>G, p.H1047R) in 77% of reads.

The Ion AmpliSeq panel tests: AKT1 (exons 3, 6), AKT2 (3),

AKT3 (2, 7, 13), BRAF (11, 12, 14, 15), FGFR2 (6, 8, 11), FGFR3 (7,

9, 14, 16, 18), GNA11 (4, 5), GNA14 (5), GNAQ (4, 5), GNAS (8, 9),

HRAS (2, 3), IDH1 (4), IDH2 (4), KRAS (2-4), KRT1 (1, 2, 5, 7),

MAP2K1 (2, 3, 6), MTOR (30, 39, 40, 43, 47, 53, 56), NRAS (2-4),

PIK3CA, PIK3R2 (10), PTEN, RASA1 and TEK (17, 22).”

I tried researching each of them, got a bit overwhelmed by the complexity and not sure if I should ask them for anything in particular.

About the lymph node I’m not sure there was genetic testing, I will ask them.

Thank you so much

rk2020

@kariz Don’t confuse genetic testing with genomic testing. Simply said, genetic testing looks for inherited mutations in healthy cells. These are mutations you were born with. Genomic testing looks for mutations in unhealthy cells. These cells can be found either in a tumor or in a blood sample because a tumor will shed cells into your blood.

Your test results were written much differently then the companies who provided my results. I don’t claim to understand your results but it sounds like they tested for 23 mutations and only found one? Both my Strata and Foundation One solid tumor genomic testing tested a broader range of mutations so maybe I’m wrong.

There were two findings announced regarding Xeloda at ASCO 2023. A 7/7 schedule was found to be more tolerable:

https://dailynews.ascopubs.org/do/data-suggest-new-ways-make-capecitabine-more-tolerable-patients

and if you suffer from hand/foot syndrome, this link may help https://ascopubs.org/doi/abs/10.1200/JCO.2023.41.16_suppl.12005

https://www.breastcancer.org/research-news/diclofenac-prevents-hand-foot-syndrome#

kariz

Dear @rk2020, thank you very much for the links, I wasn’t aware about diclofenac helping with HFS, I will use it as I have been struggling with it (only on the feet). I’ve read here about the 7/7 regimen of xeloda being better, I tried to talk to them about it but they wanted to go with standard protocol as a start. If there will be any delay or dose reduction discussion, I will push for 7/7.

On the genomic testing - as per my understanding those are the mutations they discovered in my sample, but thank you for the details, I will clarify during my next appointment.

Sending you much gratitude, I appreciate so much that you are taking the time to help me.

jsniffs

@kariz - I meant to mention that while I was happy with how quickly radiation helped with things. I have had some complications from it. My rad onc said that I am having "radiation recall." I've had a rash and swelling in the area (still feel way better than before the radiation). If I had to do it again, I would probably try to space out the radiation and chemo a bit more (I did chemo on a Monday and started Trodelvy 4 days later). I might also try to space out the radiation into multiple sessions (instead of a single session). These might be things to ask your rad onc about. Wishing you the best!!

kariz

@jsniffs - thanks a lot, the appointment is tomorrow and I will mention this, I’m supposed to start 2nd cycle of Xeloda on Saturday if all ok with the blood analysis.

moderators

Sending each of you hugs and strength for the week 🤗.

kariz

Had the radiotherapy intake appointment today and they will speed up, hopefully Friday I’ll have the first out of 5 sessions. The radiotherapist said the skin is also involved this time unfortunately, they hope the radiation will also take care of that. They are prescribing dexamethasone to help with potential swelling, will start it on Thursday.

I’m in the break week from Xeloda but gastric symptoms continue (maybe a bit milder) - lots of trapped gas/struggling to burp, heavy stomach feeling, pains. Also crippling tiredness at times, I can’t even stand up for long.

HFS is better, diclofenac cream and urea cream helped.

How is everyone else doing?

bsandra

Thanks Kariz, we are doing okay. Great to hear that they are going to speed up procedures - I am absolutely convinced that it is vital to react fast, and then outcomes are much much better. Hugs,

Saulius

nikkiqh

My MO didn't order new genomic test or plasma(blood)sequencing test for my liver met. She did it on my bone met in 2021. Sounds like we should have it tested whenever we have a new progression? How about brain MRI? Any recommendation on that? My MO only does it when I have symptoms.

weninwi

nikkiqh,

I've also heard/read about redoing a genomic test after new progression. I've asked my MO once and was told "No". I will ask again at next visit. My MO only does brain MRI for symptoms, and if symptoms occur she is quick to order. Symptoms could be recurrent headaches, unexplained vision changes, or eye pain (since lobular which can metastasize to the eye). I've had two brain MRIs over 4 years with MBC - both "No" mets. I've read that the mutations: BRCAZ, APC, SMDA4, and CDKN2A are associated with a higher chance of brain mets. I did not note the source of this info.

rk2020

@nikkiqh In the 3.5 years MBC, I’ve had considerably more scans with progression than stable. I have not had a biopsy at each progression but I have had Strata genomic testing on bone sample in 2020. This was at the suggestion of my MO. Very little little data in the results.
And a Guardant360 liquid biopsy when the cancer moved into my liver. I started xeloda before getting the Guardant results. I suggested the test and my new MO thought it was a good idea. Very little little data in the results.
When my liver started getting bad again and my tumor markers shot up, my doctors wanted me to start Enhertu asap based on 2020 pathology but I requested a liver biopsy. Everyone agreed it was a good idea and the material was sent to Foundation One. This biopsy gave me a lot of information. The pathology said my liver was HER2 positive (not HER2 low like my 2020 result) and I have a long list of mutations which opened the door to a drug I hadn’t qualified for in the past.
Brain MRI…I only get these when symptomatic. I’ve had 2 so far and my MO ordered another one today. HER2+ likes to creep in the brain so I’m glad she is checking.

husband11

As a follow up to my wife's Tipps prodecure, where they install a shunt through the liver to relieve some pressure, my wife has developed what appears to be hepatic encephalopathy. She has gotten progressively more tired and her cognitive abilities declined. She wanted to sleep all day. I took her in to the hospital, and they tested her blood ammonia level, and determined that it was outside of range. She has been prescribed a sort of laxitive, lactulose, and this has really made a quick difference. She is out of bed, and talking normally again. To quote Rosseanne Rosseanadana, If its not one thing its another. You are at least my age if you get that reference.

rk2020

@husband11 Not only do I get the reference, I hear it in her voice. I’m glad they were able to find the root cause and get your wife help quickly.

nikkiqh

Thank you all for the sharing. My 2nd infusion of Trodelvy was cancelled yesterday because my ANC is only 100. Not 1000,not 500. I knew T will hit white cells hard but I've never ever had such low ANC. The strange part is I'm not feeling anything abnormal. I have been doing my daily errands without any problem. I got a filgrastim shot and will have another one today.

I'm mad about this. Because I told my MO I want to start with 50% Trodelvy but she rejected bluntly. Now I have to wait for another 2 weeks without treatment. From 7/9 to today the only medicine have received to treat this stage 4 cancer (mets to bone/liver/lung) is a single infusion of Trodelvy. I was off treatment preparing for the NIH trial. And I'm still recovering from the liver resection procedure. Even though my lab was good to start the 1st Trodelvy. I truly feel she didn't stand in my shoes just following the guide/recipe. Now even after my ANC is back I'll be still given reduced dosage. Why not starting with 50%, there was nothing to lose.

I want to Thank jsniffs and everyone who shared your experience here otherwise I wouldn't dare to bring up any ideas to my MO. There's no way I would know how other MO practice. We need this forum to thrive. I've learnt so much information here than anywhere else.

emac877

Hello all, some of you probably know me from other threads. I wanted to thank you for the information here. Just this week I have been diagnosed with "multiple enhancing lesions" in my liver. The report specifically mentions the caudate lobe. I am currently on weekly Taxol and Piqray with Fulvestrant but am beginning to believe that Piquray has done nothing for me if I have progressed after only 6 weeks on it. The PA who works with my MO said that they will get together and likely I will have a medication change. So I'm not really sure what's in the works for me yet. I have been encouraged by several of you reaching NED status with various things. I had stable bone mets for 3.5 years until this summer when I was diagnosed with lymphangitic spread to the lungs and mets to the brain and now this. I am just feeling a little punched down but I appreciate the hope I have found here.

kariz

Hi @emac877 , sending you lots of love and courage. This is a rollercoaster indeed and so important to find the hope we all need to keep on fighting. I also find this thread and the stories of all of you so inspiring and helpful.

Hugs.

moderators

@emac877 We too are sending you love and strength as you face this new diagnosis. Please continue to keep us posted and we'll all be here to support you.

Waving hi and sending hugs to everyone else here, too ❤️

—The Mods