How are people with liver mets doing?
Comments
-
My treatments were every other week. Side effects constipation and fatigue. Then developed peripheral numbness starting in the balls of my feet, slowly progressing up my legs. After 3 months tumors in my liver shrunk by half. But I'm moving on due to the neuropathy. Also I am bald.0
-
nopink2019,
So sorry to hear about the neuropathy but amazed to hear about the 50% shrinkage of your liver tumors. Was that when you were on Eribulin? Hope the Enhertu works for you and that the neuropathy goes away.
Hugs, Susan
0 -
Hi All,
Not sure who is checking this thread lately as it’s so quiet but thought I would post an update. As I suspected, I received the beginnings of “the talk” today. (My MO has been away but is so great - called me on Sunday.) He is recommending that we try Gemcitabine but… he was clear that, after failing three chemos in a row, there is likely a 25% chance I will respond. If I don’t show improvement from this drug then future chemos are off the table. He had initially thought we would try another endocrine treatment but given the poor response to Xeloda and my current symptoms, he prefers we go to chemo. At least I have one additional option. 🙁
I knew we were getting to a bad place but it’s still a bit of a gut punch to have it articulated. As you can imagine, I’m praying for some good news from this treatment to keep a few more doors open. I need to keep it together until some of the newer treatments make their way north! Send positive thoughts.
0 -
Sadiesservant, I am sorry to hear that you have had the beginning of “the talk” I know it brings entirely new set of thoughts to mind. I do hope that Gemcitabine is effective in bringing the Mets under control, and that you experience no or minimal SEs. Sometimes we exceed our MOs predictions, and I hope your MO is wrong about that 25% data or that you are among the 25%. Many of us have surprised our doctors. At any rate, you have in my thoughts and prayers. Please keep checking in with updates when you can. (((Hugs)))
0 -
sadiesservant— please let us know how a new path goes.
Sorry you had to start that “having the talk” talk. Cancer sucks
Which chemos have you been on ?
I learn soon if I can start Doxil. Have to pass a MUGA test and get insurance to approve. Haven’t been on chemo since Aug 2017 so have been reading all my notes about tips for chemo.
Fingers crossed for a great outcome for you.
0 -
sadiesservant - I'm so sorry. What a gut punch. I, too, hope you're one of the 25%.
(((hugs)))
Carol
0 -
Thanks everyone. It means a great deal that I can reach out for your support. Lynne, I hope to take a page from your book. You inspire me as I know you have given your doctors a few surprises and will continue to do so! 😉
Dodgers, I keep forgetting that my profile is a bit messed up as a result of the refresh to the site. Mine has been a bit of a circuitous route as my MO likes to bounce between chemo and endocrine treatments but heregoes: I started on Taxol but switched to an AI, adding in Ibrance (which my body couldn't tolerate) when the fluid in my lung didn't diminish. When the AI failed I had a brief stint on Xeloda before going to Faslodex. I got three years out of that, layering in Verzenio when it became available here. When that failed I went back on Xeloda which did a spectacular job of beating back the liver mets. However, my MO did not want me to stay on it as it's toxic to my marrow (red blood cell numbers go wonky). When I progressed again after a couple of months off treatment I went on Vinorelbine but it did nothing. Next Eribulin but again, progression. Back on Xeloda which showed some response initially although not as strong as last year but it didn't last - progression after six cycles.
The problem is that my cancer is slow growing so chemotherapy is often not effective. It's slow but determined (bit like me to be truthful). But Xeloda worked for awhile so here's hoping for that 25%!
Thanks again. Pat
0 -
sadiesservant— thanks for the info. Really hoping you do well on your next treatment!!!
0 -
Sadiesservant, I am so sorry to hear that. You are in my prayers.
Have you read anything about metronomic chemotherapy? That is where they give you a very low continous dose, typically an oral like cyclophosphamide or capecitibine, or, and I'm not sure if its an oral or not, vinorelbine. The idea is that it reduces angiogenesis, that is needed for the cancer to grow. It's supposed to be one of the most tolerable strategies.
0 -
Sadiesservant- I am sorry you are in this place and hope the Gemcitabine works well. I don't know how long it takes for some of the drugs to make it up north- but, a lot are in the pipeline if you can hang in there.
I don't know how well any of the ADCs work on indolent cancer either- I will find out.
Husband11- I heard that oral Vinorelbine is available in Europe, but, not in USA, not sure about Canada.
In any case, I am thinking of you Pat and hoping for a robust response
0 -
Sadie, I’m so sorry to read your update today. What a gut punch especially after a summer of uncertainty. Fingers crossed that you get a response from the gemcitabine, ugh more uncertainty. Please keep us posted. So that’s how “the talk pre-talk” unfolds….I didn’t know that 3 failures in the chemo side means no more chemo options. Btw, what does a “failure” mean?
Husband 11, thinking of you and sending you hugs.
Dodgers, doxrubicin weekly was pretty tolerable. I didn’t need any premeds, the infusion was fast (6-7 minutes), my hair thinned a lot and I lost my eyelashes then it grew back. Constipation was the worst SE. By the 21st week I was very tired on being poked twice a week (bloodwork and chemo).
Ugh I’m one week out from the Erubilin chemo and have had way more nausea than I expected. Today was nonstop acid reflux…I may have to seriously reduce the quantity of food that I eat at a meal in the hopes that helps with SE. Tomorrow is a new day, yay! Many thanks for the replies and encouragement, it helped calm my fears.
Ann
0 -
pots— thank you for sharing your Doxil experience.
I have been battling Big D since starting Ibrance in early 2021. Maybe the tendency towards constipation will pull the pendulum more to the middle? If not, guess Colace is in my future like my time on AC/Taxol back in 2017.
0 -
Thanks again everyone. I appreciate the suggestion Husband and will discuss strategy with my MO when I see him. At this point I am ready to embrace almost anything to hedge my bets with this chemo. I don’t feel ready to hear that door slam shut. Intellectually I understand the rationale but emotionally…. well there are still many treatments I haven’t tried. We’ll see.
Pots, I don’t know that there is a magic number of failures before they say stop. It’s more individual than that. In my case, I haven’t responded to a treatment for a year beyond the recent muted response to Xeloda. Failure has meant progression, particularly in the liver as the bones have been harder to assess. It’s not uncommon for indolent cancers to be resistant to chemo - it was always a worry. Let’s hope some of these new endocrine treatments get her soon!
0 -
Dear Sadies, like others, I am with you with all my heart... Apart from chemo there are still clinical trials, DC vaccine, TILs at NCI... I always am hopeful and I believe you can move forward. Huuuge hugs, Saulius
0 -
Thanks Saulius. You’re the best cheerleader ever! 😊
0 -
Sorry to hear Sadie. My MO has had that talk with me too. I'm on my last option-Lynparza and if it doesn't work, they said they have nothing for me. I am Her2 low (2+) but I don't think we have access to Enhertu in Canada . Least, they have never mentioned it to me. My body can no longer handle chemo. It makes me more sick and lands me in the hospital every time now. So they are done giving it to me. Hoping the Lynparza works a while atleast. I'm not ready to go but i wont know until november (my guess) to know if it's actually working or not.. It's so hard so I'm right there with you. Knowing there are so many other options but can't avail of them is a gut punch Iwould never wish on. It's like throwing in the towel too soon.
Lynparza is treating me good except for the fatigue.. I'm always falling asleep. and I feel like i have some slight depression because I'm literally unmotivated to do anything. I feel like I'm wasting time. But i'm so friggen zapped.
hold tight girl we got this
0 -
Well...I am coming to the end of treatments. I had the MOST progression i have ever had and it happened in just 4 weeks while I was taking the Tetramethlobate drug or TM for short. I KNEW it was causing a A LOT of inflammation in me..and I went from my liver being NED...to then a few days later starting that drug and Low Dose Naltexone and now had 10-15 new tumors in my liver and one BIG on in the very deep interior of the liver. I also have some more lung mets.
My husband and I had a big cry on and off for 2 days. My MO is checking into one trial at Georgetown in DC and the TIL trial at NIH.... but I need biopsy..so she is going to talk to my IR to see if anything is biopsy-able.
I don't know if I will be posting here anymore the stie is very frustrating..
I should have mentioned that obviously the Trodelvy failed but we knew that 3 months ago....
0 -
Sadiesservant,
I started on a low dose of Epirubicin (aka Ellence), similar to Doxil. It's not a new chemo so may be available up north. So far the SEs, mainly fatigue, have been slight. I too have been failing on chemos. Haven't had a scan yet but I feel good. SOB slightly worse.
Here's my list of approved but not yet tried treatments (all are long shots for me):
Enobosarm - fast-tracked by FDA. AR+ 90%. Maybe take it with Tamoxifen?
Ixempra (Ixabepilone) - Maybe take it with Xeloda? Hope doesn't think this will work.
Germline RAD51D and high LOH may confer sensitivity to PARP Inhibitors like Lynparza, mitomycin C and cisplatin
Navelbine(Vinorelbine) + Tamoxifen. Antitubulin. Only 16% response rate. Anti-tubulin.
Methotrexate (MTX)
Enzalutamide w/ or w/o Bicaludamide
Cyclophosphamide - the "C" in AC. Plus Celecoxib (Celebrex). Plus Doxil.
Everolimus (Afinitor)
Arimidex (Anastrazole)
Mitomycin C - Only 20-30% response rate for BC but may work better for high LOH. Administered through a catheter into your bladder.
Dendritic cell vaccine - Saulius' wife got the vaccine
Opdivo+Yervoy (Nivolumab+Ipilimumab) - worked best with high tumor mutational burden. I have low TMB.
Opdivo+Paclitaxel+Avastin(Nivolumab+Paclitaxel+bevacizumab) - High disease control rate (DCR=CR+PR+SD) of 96% in firstline adjuvant therapy. Already failed on Abraxane.
Looks long but none have been recommended to me by my MO. At the end of last year, I got my End of Life Option forms completed and signed but I'm still here and feeling good. It ain't over 'til it's over.
Hugs, Susan
0 -
Back, around 5 plus years ago when my wife was on her first treatment for liver Mets, she was on xeloda. She had to cycle the xeloda on and off to give herself breaks, because of the severe hand foot syndrome and low blood count. While she was off xeloda, she was taking oil of oregano, because we incorrectly were told that the ascites she had, was actually gas, she started taking the oil of oregano because it has shown some effectiveness for bacterial overgrowth. Anyhow, because oil of oregano can inhibit the metabolism of some drugs, like xeloda, she only took the oil of oregano during her days off xeloda. I charted her tumor markers, and she got the best response to the xeloda during this time. She then quit taking the oil of oregano when it was finally correctly diagnosed that she had ascites, and not gas. The rate of reduction of her tumor markers slowed. Some time later I cooked up the idea that the oil of oregano might have been aiding her treatment. There is research showing oregano slowed and reduced breast cancer in mice. So, she went back to alternating xeloda and oil of oregano. And the tumor markers started to fall rapidly again. I can't say there was cause and effect, but that is what we observed for her. I throw this out there as it has been years since I told this story. I wrote about it on this board back then, and posted links to the articles on research int oil of oregano and breast cancer.
0 -
Nicole, I am so sad to read about this significant growth of tumors. You and your husb are always in my and my wife’s thoughts and prayers.
0 -
Dear Nicole, I PMed you. Hugs...
Dear SusaninSF, your list is simply... wow... a huuuge example of what options we have (I copied it and saved to my oncology folder!). I most probably know why MOs are not recommending them - they are not "according to protocol" and they do not have much experience with them but yes, I strongly believe that through iterations we can find solutions. The problem is our health - how much can we handle, but if we can, there are really many options... Hugs here too and yay to "It ain't over 'til it's over" - these are the words I should be repeating to myself every morning when I get up!
Dear BAP, it is so heartwarming to hear from you. I hope so much that Olaparib works. It actually is a very good drug. You can also go through Susan's list - it is amaing and IO combos can be found there which, I hope very much, can be discussed. Please write us - your news are so important here...
Also, Husband11, your advice is very interesting. I think you can say that cause-effect definitely exist, at least hard to deny in your wife's case. It is interesting that you could observe the "effect" so vividly through markers. Nice! Goes into my list too...
Please, also do not forget to check Anne's (aka Bestbird in BCO forums?) guide - there are so many options that you can read about there. The link to buy the book: https://www.insidersguidembc.com/view-download-pdf
Saulius
0 -
Looks like Bestbird's site is down.
0 -
Nicole, Hugs to you. 💕. It's very hard to find out a treatment hasn't helped when we had high hopes for it. I hope one of the trials becomes doable and/or recommended for you. Or maybe there is something still left. Sending you strength as you find out what's next. 🙏🏼
0 -
Dear Susan, I have rechecked - BestBird's site is not down, it is working, and the guide is accessible there with the latest update from August 2022. Saulius
0 -
I was recently diagnosed with liver mets. I haven't started treatment yet, I've been having an extremely difficult time eating. I am extremely scared. Any help would be appreciated. My original treatment was 2017. I feel this is a deathbsentence
0 -
French girl, take a deep breath. I felt like you when I heard the news in 2002. After 6 months I went into remission until 2015. There are lots of treatments available to you. Many of us have had Liver Mets that we have beenkeeping under control for a long time. We all respond differently just don’t look at statistics. Eat, you’ll need your strength. You’ve got this.
0 -
When 1st diagnosed w/MBC, my MO had me talk to nutritionist @cancer center. Can't remember much, but they did give me a sampling of protein drinks to find something I could tolerate. Now I drink a Premier Protein Vanilla or Latte at least once a day. Also, a spoonful of creamy Jif peanut butter. Helps with energy & keeping weight on. Some meds will make you lose weight & some will not. Read some back pages and you'll see how many people do well on different meds, then find another that works for many months/years. Can't help the scared, I think most of us have been thru it. I have many friends who understand that I've got more to discuss than my health (although they ask, isn't all we can talk about). Try to do some of your "normal" things. Keep coming here with concerns. Great bunch of support.
0 -
frenchgirl,- We're so sorry for the circumstances that bring you here, but we're so very glad you've found and joined our Community. Here you will meet many inspirational members, many women living with metastatic breast cancer who regularly post about their experiences, and doing well, all things considered.
Besides the discussion boards, you may also want to check out our Liver Metastasis section in our main site. There's a lot of great information there on diagnosis and treatments, and also a helpful full article about: Living With Metastatic Breast Cancer (managing the feelings that come along with the diagnosis, common fears, and more).
Hope this helps. If you have any questions for us, please don't hesitate to contact us through the private message function, we're here for you!
The Mods
0 -
French girl- getting the diagnosis is such a gut punch. It's hard to know how to think in the beginning. It should get better when you have a plan and start treatment. My first oncologist told me think in terms of years, not months, and he was right. Everybody is different and responds to treatments differently, but in my case my PET-CT scans showed no evidence of disease (NED) after 7 1/2 months of treatment. Two years later, I'm still NED on my first line of treatment.
If you can, and you don't mind, let us know if you know your cancer details (IDC, ILC, other) and hormone status. Sometimes it's helpful to hear from others with the same cancer profile.
0 -
dear French, I originally had bc in 2013.. Was quite shocked when I learned in 2021 I had MBC in liver. I too was scared but I am doing pretty good after taxol chemo, Perjeta, and Herceptin which I’m still on every 3 weeks and they have shrunk and no spread. Dr says I’m doing great. I am living life and we just returned from a week at beach in SC. The chemo time was tough but I have good support. Try and find things you can eat even if it’s protein drinks for now and talk to a counselor. I’m 77 and I feel bad for the younger ladies. This site is full of good info and supportive folks. Be
0
