How are people with liver mets doing?
Comments
-
praying for artist. It's been too long since we've heard anything... goodness.
0 -
Shetland, i have a bad feeling in my gut too. I don’t know to get any news about her. I am hoping one of her daughters or her husband may have her password to let us know qhat is going on.
0 -
Miaomix - meow! Get off the A-phonytor and come join us in x land. I am thrilled to hear you are planning for Italy. Go soon and enjoy! If you change meds shortly, likely HSF won't have set it yet (and may not), so you can dance and enjoy Italian food, culture and your family! Which city are you going to? Thanks for food advice - please pm me. I shortened my May trip to the UK to take it easier on me. Still flying first class (used up my miles) with my sister. We will be seeing Cotswolds and Stonehenge on 2 separate day trips and maybe a visit around the city too. I spent a lot of time in London when I worked for Warners in Soho, so happy to be returning. But likely my last trip to EU - its just too far to travel if I feel ill and/or faint again - f u head rads.
JFL I am doing a doxil dance for you and our eyebrows. When I am up to it, I plan to get them microbladed just to have some again. Eyelashes are coming back so slow I think I will just use waterproof eyeliner for work. My job interview in NYC is in 4 weeks - thrilled to be wanted and still working - job is based in West LA. 
Shetland - how is your dancing coming along? I am going to the onc today, I hope I haven't lost any more weight. oy Artist or family - please let us know how you are. Very worried.(()) Claire in very rainy LA
0 -
Tykerb is used for brain mets for her2+ patients
0 -
so sorry JFl! you are right, I'm clearly a newbie. And yes, I have heard of tykerb. Nerlynx is newly approved by FDA. However I defer to all of you with more knowledge and experience.
Thinking of artist
0 -
LA, good luck with your job interview! I am so impressed. You are a rock star! Europe really is a far trip for you. I forget how good I have it as Europe is the same as flying to Seattle for me.
0 -
Woody, Shetland, and everyone else, I am still worried about Artist, too. I am not sure that her daughters or husband would think to log in if Artist is unable to do so. I know that my DH would never think of it. I don't believe that others understand the connections we have here. I am praying for her and hoping that she is undergoing treatment in the hospital and is improving. I am afraid for her. She is such a kind and giving person who always seems to know exactly what to tell us here when we need support. During the past six months or so she has experienced treatment delays several times due to inadequate response to her calls to onc's office, bad reactions to treatment, and most recently the horrible delay in COBRA processing. No one deserves to go through all that, but I know she is not the only person to have those experiences. I am angry, but my concern for Artist is much stronger than my anger. I continue to pray for her.
Lynne
0 -
LALady-We're going to spend a few days in Rome and then drive down along the Amalfi coastline spend few days there, and then to Ostuni: the White City, in Puglia on the heel of the Italian boot.
The local cuisine is still real and amazing....especially my sister's....:-)) and the beaches are still pristine...
Cotswolds and Stonehenge sounds really exciting, definitely places I would love to visit myself. Good luck with your job interview Claire!
I'm worried about these acute and dull pains in my liver area that are spreading from my right flank. After being asymptomatic for so many months, now I can feel the cancer acting up again. And now I'm terribly afraid that while A-fakitor is busy obstructing my breathing, the cancer might be doing a tarantella....
I have not been using my dexa mouthwash as often because it keeps me up all night long, could these body aches be associated with withdrawal from steroids? Does anyone know?
I guess i could go swish right now and see what happens...
okay ladies...only a few minutes have passed and all my symptoms have magically disappeared...next week pet scan is going to be very interesting...
So now I know, I'm hooked on steroids, but if I mention it to my MO, I know what she will say: Miaomix you have much bigger health problems than steroid addiction to worry about! And you know...she's right!
I don't know what TX Artist was on, but I have 125mg and 100mg ibrance I would gladly send to her if useful....
0 -
Hi folks,
A quick share-I received a phone call from a research nurse @ MSK informing me that my CT scan shows progression of disease. While my existing liver lesions are stable, she stated I have new ones in addition to a lesion on my adrenal gland. While the research nurse mentioned 2 other trials that I'm eligible for, I've a call into my local oncologist to discuss chemo options. I would rather knock the disease down/out with some chemo and move on.
Thanks for listening!
0 -
sorry about the news, Scout-a-bout, but I’m relieved that you have various options, including clinical trials. Best wishes with your next TX.
0 -
Scout a bou. How long were you in the trial? When I failed that trial I told my MO i needed a tried and true treatment next. I’m on Doxil. If that fails she wants me to look into another trial. I’m not too sure. Let us know what txt you do next
Bab
0 -
Hi Babs - my answer is not too long. I started the trial med on January 30th. The progression defies logic in my mind. My tumor markers decreased, my CBC and CMP values are all within normal range. I guess cancer is not logical.
Though MSK nurse mentioned two trials to me, I don't believe I'm interested in either one. She stated the first trial was for Her2+ people-well according to my liver bx my Her2 status remains negative. The 2 trial is blind - you don't know if you're getting the trial med or not. That definitely doesn't work for me
I don't know if it's because it's been a difficult day and I've had a lot to process, but I'm really ok with starting chemo. Do I like the thought of a port?-no I don't. Who looks forward to losing their hair? No-one. But I'm ready to use something that's been proven and hopefully not only beats the cancer back, but gets rid of it. I feel the same as you - something tried and true. The trial med did a job on my body. I developed hyperglycemia, dealt with a bad reaction to Metformin and subsequently have been on four oral meds to tame my blood sugar. I'm looking forward to a glass of "real" Pepsi. My local oncologist mentioned Abraxane several months ago when my liver lesions were first discovered. I'll share if that's what she offers now. I've already been in touch with her via email today and hopefully will see her tomorrow. I know we'll talk one way or another. I've spoken to my surgeon and he stands ready to insert a port when I'm ready. But first, I'm going to Turks & Caicos with very very good friends and now I can't eat and drink whatever I want!
I believe I'm going to be fine, that conventional chemo is the way to go now, and the chemo will do a great job on the cancer. I've got to have hope.
0 -
Scout-a-bout,
My disease in my liver got out of hand when I was on a trial because it didn't work. I got on Abraxane and it seems to be working great. I had only 5 treatments and my Tumor Markers have gone from 625 to 211. I didn't want to lose my hair either, but at the time my disease was very serious. Because Abraxane is working so well.....losing my hair is all worth it. Plus I bought 2 cute wigs to wear.
Good luck with whatever treatment you chose!!!!
Robin
0 -
Thanks Robin - I really feel the same as you, and probably everyone else-it's time to throw something tried and true at my cancer rather than take my chances with another trial. And hair is a small price to pay. I'm looking for a little piece of mind and being ahead of this disease. I plan on starting chemo in 2 weeks after my trip to Turks & Caicos, and then eradicate my cancer. That's my plan-I have to see what my oncologist has in mind. But I am going on vacation-it's a must needed break!
Carmel
0 -
I just got my liver panel back and my AST is 54. 24 points above normal. Everything else was within the normal limits. My onc felt my liver yesterday and it was not swollen. Do I have to worry about this?
0 -
Abraxane is my oncologist's drug of choice to knock my liver mets down. I'll begin chemo on April 10th. Some time to washout the trial med and time for me to go to Turks & Caicos for a few days. Everything is falling in to place. I know the chemo will work, and work well!
0 -
Lisajo-
Back in August, my AST was 89, but my doctors were not worried about it at all, and told me to go ahead and have a glass of wine each night if I wanted to (I did go ahead and have one glass per week!). I' m not an expert at all, but wanted to pass that along. Luckily treatment has brought me back within normal range. I hope your treatment does that for you.
Donna
0 -
Lisa, your AST could be a fluke caused by another illness, medication . . . or could be caused by progression. Mine are within normal range but occasionally jump up on a short-term basis when I am sick or have taken certain medicines. When that happens, I typically have it retested on a weekly basis to confirm which direction it is moving - higher up or back down to normal ranges.
I had my first Doxil today. It went fine and seemed like being in heaven NOT having to do those cold caps. And, I didn't have to be hooked up to the cold cap machine in a chair. I had a comfy individual chemo room with a bed and a TV. Such a great day! Ah, the little things we now appreciate . . .
My MO also pulled up my Guardant Liquid Biopsy results with my DH while I was in the treatment room. It came up with 0 flagged genetic abnormalities. The liquid biopsy did not even identify any of the 7 alterations or amplifications my Foundation One report found. I believe a lot of the genetic "baggage" just doesn't make it out to the circulating blood stream in large enough amounts in most cases. Also, each genetic test seems to identify different results. No consistency. I felt a small bit of disappointment but then started thinking what an old world we live where a "normal" test result is anything other than a good thing!
0 -
hello JFL- I was touched by your experience and share your confusion regarding the inconsistencies with the current genetic testing. Especially since the FDA has just approved Medicare to pay for Liquid Biopsies, which means that soon health insurances will have to cover it.
Let's hope the technologies behind all these various tests continue to improve quickly and provide facts that are truly actionable,and that Doxil continues to be gentle and a great TX for you for many years to come!o
0 -
I do have a sinus infection and am on an antibiotic. i also take aleve for my sinus headache. I called my onc and he was not the least bit concerned.
0 -
hello - I don’t post here often, but read regularly. I’m an official lurker, and learn so much from everyone here.
JFL - were you on Chemo at the time of your Guardant Test? My MO told me that you should not be on chemo, as circulating tumor cells don’t often show up while on Chemo. Just a thought as to why there was such disparity between the tests?
Prayers and well wishes to all of the beautiful people fighting this wretched disease.
0 -
So it's been 4 weeks since the PET that showed liver involvement, and I'm still waiting for the Afinitor. So I'm basically untreated, except for the hormone inhibitor. Over the last week, I noticed an... odd... odor to my urine. Not ammonia, just.... weird. Is that something to worry about? Is it normal? There's no pain, I still feel good, everything else seems to be normal. And nobody said anything about my numbers after my blood work, except that my potassium is STILL low. But I never know what's worth worrying over, and what's just... an odd something.
Isn't it great to have a TMI-free zone where we just freely share about our bodily functions? LOL
Pincushion
0 -
Princess - If you are on hormone suppression, you are HIGHLY susceptible to UTIs and they need to be treated as they interfere with the functioning of the immune system. I am the big immune system cheerleader here. I don't think there is any enduring response to any treatment that doesn't involve the immune system. I have so many f@#king UTIs at this point that I went on Amazon and found that I could order (link>>) the urine test strips they use to screen for UTIs. The problem with my UTI's is that they sometimes have no symptoms, like smelly urine. The strips take a few tries to figure out how to use and some research and study to figure out how to interpret, but worth the effort.
Lisa - AST at 54 is something to monitor, but not something worry about. It looks like you are on abraxane? It may be something abraxane can cause.
Elevated liver markers are a possible sign of liver damage and something to investigate, but that is a fairly small rise. I would expect a normal scanning schedule would be the appropriate level of investigating.
Mine is 90 at the moment with a liver so full of mets I can't really see any liver. FWIW, I've had my AST measured at 3 labs and the upper limit of normal at these labs was 40, 58 and 70. The labs vary in how they test and "normal" is defined by the population the lab serves, but an upper limit of 30 is on the low end for "normal".
JFL, Babs - Chemo is on the table for me if my diagnostics go a certain way over the next few weeks. Abraxane seems to be the go to drug, but doxil is more interesting to me. Doxil is an agent known to trigger immunogenic cell death (ICD). ICD is a regulated cell death that facilitates (instead of suppressing) an adaptive immune response specific for dead cell-derived antigen. Agents that trigger ICD can activate the immune system broadly against the cancer. Here is an article which is hard to read but generally gets the point across. Some of the references are better than the article.
My dad has prostate cancer. He did one dose of Doxil 18 months ago and that one dose put him into remission. He could not continue taking it due to other health issues, but the cancer never returned. The only explanation would be ICD triggering a systemic immune response. Experts have argued that prostate cancer is more similar than different from breast cancer, so this data point has stuck with me.
I am also contemplating a low dose doxil protocol, which may do more to stimulate the immune system with less side effects. Whether my onc will be on board with this remains to be seen. It's been done and studied in the past as equivalent in efficacy with lower side effects. What is your routine as far as timing and dose? A low dose protocol would be weekly.
The problem with higher doses is that they knock out both the cancer and the immune system. My theory is that my dad did so well BECAUSE he could not continue doxil. He got enough to stimulate an immune response but not enough to knock out the immune system.
I am watching you guys carefully, please keep the details coming. Do you have any idea why doctors are generally doing taxanes first?
JFL - I've been reading that breast cancer is a very good target for blood based genetic testing of CTC cells with good alignment between blood based tests and biopsies. I've had both and found the same disconnect that you found. Your experience is interesting and noted. Thanks for posting.
>Z<
0 -
Z-
I am also prone to utis and at the beginning of my mbc tx I was getting them every 6 weeks. After going through one urologist who was no help, I stumbled on another who also happened to have a pharmacy degree. He put me on a preventative Med called methenamine hippurate. He said “ no promises, and I don't know how long it will work." But in the past 2 1/2 years I've had 2 mild infections that healed quickly with an antibiotic. Quite the difference for me. Worth looking into. Btw, I take 1 gym twice a day.
Oh, it’s a tier 2 drug, so the copay is pretty high. But, worth it for me.
0 -
KC1010, thanks for your note about Guardant test and being on treatment. It does make sense that treatment would suppress the markers.
Princess, I am incensed you have been waiting 4 weeks for Afinitor. I am a stalker from day 1 when I get a new drug pending insurance approval - call MO's nurse, insurance company and the specialty pharmacy every day until I get the drug. Friendly yet persistent and just annoying enough to give them a kick in the pants. It is not right that we should have to do that at all, we have enough on our plates with diagnosis and treatments, but it is the reality of our situation. I recommend starting calls to all involved parties (and yes, each one will put the blame on another for the hold up). I hope you get your Afinitor soon!
Z, very interesting about Doxil and immunogenic response. I had not heard specifically about that aspect but have been on a mind-body connection kick after my mother keeps sending me materials on it and have been visualizing that it is doing nearly just what you described - and that the combo of Doxil and Y90 will create the perfect storm of an immune response. I can dream, can't I!?
I had previously read that Doxil modifies the DNA so that the cancer cells cannot repair themselves and that there has been some success getting it to access some cancer stem cells. I also read something essentially saying that if the researchers could figure out a way to successfully get it to everywhere in the tumors they need it to be (to all cancer stem cells), they believe it would "cure" breast cancer and the cancer cells would not become resistant to the drug. It is just the delivery system which is still not foolproof. Improving with the liposomal/nanomedicine formulation over first generation doxorubicin but still has a ways to go.
Doxil seems to be not that widely known about yet in the patient population, still getting its name out there. I think when most people see "Doxil", they assume it is the name brand drug of standard doxorubicin/adriamycin/red devil. That is what I thought at first. And anyone who has had the red devil wouldn't readily sign up for the same drug or any sister drug without the background knowledge of the science beyond Doxil - and how the drug maker managed to eliminate nearly all the terrible side effects and get this drug only in the cancer cells. From the doctor's standpoint, there is still the cardotoxicity unknown. Studies have shown it does not have the same cardiotoxicity of red devil but since Doxil is still relatively new, the MO's don't have super long-term data on that and remain cautious.
0 -
Z and JFL,
At the moment I am reeling from the conversations I had with my MO and a consulting MO. My MO told me that taxol wasn't working effectively on the liver mets mets and my time horizon was approximately 3 to 6 months. My liver enzymes are ALT 33, AST, 28 and Bilirubin is at .51 , these values are have been similar for the last 16 months.
My mri scan on the liver shows more than 30 lesions, too many to count but they are very small, so my entire liver is involved. Curiously, I feel fine, some days less energy than usual.
I have just started metronic methotrexate and cyclophosphamide today.
She listed Doxil, Abemaciclib and exemestane + everlimus 10mg daily as options but was unethusiatic about them working for me. I have had letrazole + palbociclib 18 mo., Xeloda 6 mo, faslodex, 8 mo, taxol 6 mo.
Z,
Any thoughts?
JFL,
You appear to be as heavily pretreated as I am, did your MO indicate how he thought Doxil will work for you?
Kathy
0 -
PrincessPincusion, Are you on Faslodex? I ask because you mentioned a strange odor to your urine. Faslodex does cause that for some of us, particularly during the first several days or up to a week after the injections. It is harmless and is not from an infection. The odor is nothing like ammonia. Several people on the Faslodex girls 2014 thread have noted the odor. Some have described it as smelling like a barn or a barnyard. Yup, pretty funky. I hope this helps. And yes, sometimes we have to talk about bodily functions. Without that sharing, how would we learn?
Lynne
0 -
So.... stinky pee might just be yet another in the long list of indignities in the Cancer Crazy Train? Somehow, that's both comforting and... annoying.
It does seem to be worse right after my injections, and it started shortly after my first faslodex treatment. I've had plenty of UTIs so I know pretty much what they're like, and this is nothing like one. I just wanted to make sure that weird smelling urine wasn't maybe from liver problems, because I just have no idea, and I refuse to go to WebMD. After all, it doesn't matter what you look up there, it's sure to make you think you have cancer.
~P. Pincushion~
0 -
For those considering some kind of chemotherapy and immunotherapy combination, I'm attaching a review in Cell by Lisa Coussens in 2016- more information in there than I can distill, but perhaps Z can translate it for us? Just click link at the right (Formats) to download the PDF...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC47887...
0 -
PS One takeaway from the article is that checkpoint inhibitor drugs may become a mainstay for treatments of all cancers, but when combined with other agents to boost tumor infiltration of immune cells, and may need to involve repeated cycles of different types of immunotherapy.
From the conclusion:
Eventually all patients will be treated with checkpoint inhibitors, either directly or after interventions targeting inflammation, by vaccination to boost T cell repertoires, or by adoptive T cell transfer. The majority of patients will subsequently develop acquired resistance followed by immune escape; this will lead to the next cycle of treatments incorporating multi-modal biomarkers (e.g., based on microbiome phenotype, ctDNA, circulating cytokine levels) and perhaps NK cells recognizing loss of MHC class I by neoplastic cells, thus rendering them invisible to T cells. Cytotoxic treatments, such as with NK cells, standard CTX/RT or oncolytic viruses, will release neo-antigens that can be used to generate the next round of effector T cells.
0
