How are people with liver mets doing?
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Thanks LoMa. I have had this trial on my short list since about the time I was diagnosed and heard about Judy's story. We have a mutual friend in common and I have been hearing about her experience since shortly after my mets diagnosis, before it "broke" publicly. On the other hand, this trial is serious business. Shortly after Judy had success, another breast cancer patient died of sepsis during the trial when they wiped out her immune system before reinserting the TILs. I recall reading her daughters posts on another site, keeping us informed and being devastated to hear that news. However, I also recall her daughter saying that her mom was in pretty bad shape when she started the trial. Then there was a third breast cancer woman afterward that did fine in the trial but it just didn't work for her and she died about a year or so later. If they can pinpoint what worked so well for Judy and are able to replicate it, that would be amazing. It seems like it is still part science, part art.
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JFL - I would contact them while you are feel strong. Some of the problems they have in getting candidates is people wait until they are too sick. Remember you can go thru the process and have the cells frozen for when you are ready. That was a huge revelation for me.0
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Very interesting, LoMa. I see you live in Texas, so do I. I'm in the Dallas area, where are you.? I remember watching the program on Discovery, I think, called First in Human. Very impressed by the doctors and staff who cared for those patients. Seriously impressed that you contacted them directly.
My MO ordered genomic testing from Tempest. I need to check my portal I think the results might be in. My MO is at UTSW in Dallas. I'm new to her since I recently changed from my previous MO of two years. I'm glad to be back in a cancer center with a BC specialist.
I'm just ready to be over the constant nausea from X. Grrr
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Grannax dont you mean Tempus or is Tempest a new company?
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Hi all,
Okay... i chickened out. After reviewing the detail of clinical trial testing GSK3326595 a "protein methyltransferase inhibitor" or also known as an "epigenetic drug" which is thought to work by modifying proteins that may affect the genes that are responsible for growth of cancer because of too many frequent and invasive testing without known benefits, and a list of the usual side effects, I decided I simply couldn't do it.
Tomorrow morning I'm meeting my MO to go over chemotherapy options. Can you help me chose which one to start with? Obviously, I'm looking for the one that's less likely to damage me permanently. I will probably also undergo an ablation of the liver lesion and new radiation to the new spot on the spine.
I'm so sad right now...I wish I could still be taking easy xeloda, although it didn't stop progression.
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Miao, you and I have a lot of the same cancer deets (ILC, hormone status, etc) and have taken a lot of the same stuff, so I'll take a shot at this.
I went from Xeloda (3 years, my longest PFS span to date) to Taxol. Not my favorite move, and I hated being hairless, but side effects were manageable once I begged my way out of the weekly dexamethadeath aperitif (ughhhh, no thanks, never again). Weekly Taxol kept me here for 2 more years, bottom line. Thank you, next.
I then moved on to several months in HELLaven. It's supposed to be less toxic than Taxol for many women, but it dang near did me in. Who knows--I have a bad case of MTHFR which alters the way I metabolize meds, so YMMV.
I'm on my second month of Verzenio + Faslodex so it's too soon to assess how it's going, cancer-wise. I'm too busy managing diarrhea to think about tumor markers much, so I guess that's some sort of dark grace. LOL.
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Sandibeach57: I don't think I replied to your post. I have no children, but a wonderful husband and a cat named Aelfric. You may have seen my later posts, that I am seeing a new MO on Monday and looking for care, advocacy and HOPE. I felt abandoned by soon the be ex-MO and the difficulty/indifference of the agency to which she is attached.
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Lulubee thank you for sharing your experience with the chemos and drawing the parallels regarding our ILC status. I wish you the best of luck with your current treatment. I don’t know why, but when I suggested that combo to my mo, he said it wouldn’t work. That I had exhausted the hormonals, but we don’t have the results from the biopsy yet...so how would he know?
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Miao, all of my chemos have been tolerable and I would rank them in order of preference as follows:
1. Xeloda
2. Doxil
3. Halaven
4. Abraxane
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Hi all - Lots going on for everyone. Thinking of you all.
LoMa - congrats on kicking off the NCI trial! and welcome to this thread
Question: I am curious to learn more about diffuse liver mets. I met with the liver specialist again this week and he believes that the structural changes and scarring in my liver (as seen on MRI) are a result of diffuse cancer that grew rapidly while I was off treatment (I look a 3 month chemo break because I was NED by PET/CT). My PET/CTs and MRIs don't seem to "see" the diffuse mets, just the damage they leave in their wake. Tricky since oncologists tend to make so many treatment decisions based on imaging, and in my case, I don't think it's reliable.
For those of you with diffuse mets, how do you monitor your cancer and response to treatment? We of course watch my labs and my 15-3 does seem to track with my cancer (though it's only been out of range twice).
Do you know of specialists in diffuse mets? Treatments that are particularly beneficial (or off the table) for diffuse mets?
Just hoping to learn more and curious about the collective knowledge of this group.
Thanks in advance!
Oh, and I can't remember if I've posted... GemCarbo is working again. My last PET/CT showed no metabolic activity in the liver and less (or no) activity in the bone mets. 15-3 is dropping, as are my LFTs. PHEW!
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Dear Thrivingmama, we always go to ultrasound (US), as my wife also had diffuse liver mets. The US guy is a head of whole NCI US&Radiology department, so I have no doubt in his knowledge and skill, as he also does most difficult biopsies, reads PETs, MRIs and everything else. As MRI/CT/PETs see mostly activity but not inactive things, he says US is the best thing in skilled hands. So for my wife US sees scarring dots (like fibrosis), and MRI sees nothing. In fact, on MRI her liver looks healthier than healthiest person's. Once the US-guy said "in MRI they will not see more than me, only maybe in bones". Actually, he was the first to detect skin "infiltration and thickening" in the breast when disease came back three months ago, when the mammogram, blood, and even eye saw nothing... So we often go for US, alternating between MRIs. It is inexpensive, quick, zero-harm and pretty informative.
Saulius
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JFL thank you for your help and reassurance...I was hoping to hear from you. Did you loose your hair on doxil? How should I prepare to successfully deal with Doxil? I’m so scared....something in me just can’t accept the situation I’m in.
When I was first diagnosed, I refused to undergo the pet scans every three months, so they used to do sonograms to check the tumor in my left breast. Like BSandra said, they are not only very safe and quick, but also very accurate in the right hands.
It was through these sonograms that I learned my 2.5 cm tumor had disappeared after 3 months on half the dose of Letrozole.
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okay...it's been decided Mo suggested doxil because of my needs for less disruption to my life and ability to function. Like JFL, he insisted that it was an easy treatment and that I would suffer no major side effects.
He also agreed to a 4 weeks schedule starting with the lower dose. So off I go to my next adventure.
No ablation, or spine radiation, he thinks doxil will kick butt! I'm relieved....
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Update from our side: carboplatin/gemzar lowered my fiance's platelets too much after the first treatment, and we had to take a break. After two weeks, platelets are at 50. Unfortunately bilirubin is still very high at 2.6 and calcium is at 15 (10 is the upper limit). She had few vomiting episodes also and severely dehydrated. We got admitted to the hospital for IV fluids to hydrate and also to lower Calcium. Our MO thinks liver is not able to process Gemzar and we will drop it from the regimen. She has no appetite and eats like a baby. Dr thinks lowering calcium will help in all fronts. Although she has had only one round of carboplatin, there is a fear that she may not be responding to Carbo. We will have to try couple more rounds of carbo to know for sure. She is on pain meds for liver pain that makes very groggy. She is ER+PR+ HER2-. Carries BRCA 2, PTEN and ESR1 y537s. Any ideas? Thanks in advance
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Miao, it’s good you are through the decision-making part; that is so stressful. I thought I would mention that a suppport group friend who has a rockstar oncologist reported that he told her that in his experience, doxil was a good one for ILC.
Thrivingmama, I have (had?) diffuse liver mets. My onc and I used mainly PET-CT to follow me (MRI, CT, and US can also see them) BUT we found that my CA 27.29 tumor marker is ahead of the PET-CT. So in the absence of symptoms we just use that these days. The other thing I can tell you is that the interventional radiologist told me that while most local therapies would not be appropriate for the diffuse mets, Y90 aka radioembolization would be.
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thank you Shetland for the info regarding doxil as working well on ILC, it’s helping me embrace this soon to be new reality.
JFL, the nurse had nothing to recommend when I asked about how I should prepare for the infusion.
I know we are all,different, but Is it a good idea to ingest food as a form of protection, or is it better to fast, like Longo et all recommend, and Zarovka used to advise?
Grateful cat here....
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Started Gem/Carbo today and really nervous!
Also liver enzymes are high.They were normal range at the end of Taxol a couple weeks ago.
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Here is a link to an interesting new avenue in cancer research in Canada that will hopefully translate into trials asap.
https://biv.com/article/2019/04/cancer-therapy-poi...
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BSandra - thanks for sharing your experience. Interesting, my original breast tumor also was infiltrated the skin, with skin thickening being one of the first signs of the cancer. The breast tumor was also more "octopus like" vs. what you typically think of as the shape of a tumor. I wonder if that pattern has anything to do with how/why the cancer becomes diffuse in the liver?
ShetlandPony - thanks for the info too. I am glad so many treatments have had a good duration and/or got you to NEAD. That gives me hope
I had heard that Y90 could still be a possibility for diffuse mets, thanks for sharing that you had heard that as well. Curious... those of you with diffuse liver mets, how have your LFTs (AST, ALT, Alk P) tracked with your cancer burden? Have they been elevated? In hindsight, I believe that the LFTs may also track with my cancer burden, despite imaging appearing NED.
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Miao, glad you have a decision made and one with which you are comfortable! Doxil's 28-day schedule made me nervous at first because it is so long between treatments but after learning about the fact that it goes undetected in the body and circulates much longer than other chemos (for a week or two rather than a day or two), my fears were eased. No hair loss. After the first infusion, I ditched the premeds and the Doxil itself is a 1 hour infusion. I did it for 9 months without a port. For the first infusion, the nurse will slow it down to 1.5 hours to make sure you are not allergic. It is a pale reddish-pink color liquid. Food or no food - either way with Doxil. The only consistent challenge most seem to experience is painful rashes and hand-foot issues, often involving blisters, around cycles 2 and 3, which then subside for the most part.
I wish someone would have told me the following, which I read in the Doxil patient instructions from the drug manufacturer online months after I started the drug: Starting the day before infusion and for the 5-6 days after, avoid all friction and heat on your body to the extent possible. I suffered majorly from not knowing this. This is the timeframe when the skin issues will happen, although the symptoms will not show up until day 12 -17 or so. The only other place besides the tumors where Doxil is harder for the cells to clear out is in the skin - through skin damage, expanded blood vessels, and/or perspiration. Healthy cells in other parts of the body typically do not have problems clearing out the Doxil. The exact mechanism of action is not fully understood. During this time period, avoid opening sealed canned jars, hot water when washing dishes, hands, when taking showers or soaking feet during a pedicure, heating pads, super hot coffee, tea or soup, tight and even not tight but fitting clothing, leaving bandages on the skin for long periods of time, exercise that involves friction or sweat, being in hot places that make your core or feet sweat, and the like. I even had to buy different shoes to wear to work when I was on Doxil - wide shoes that had very large toe boxes.
I also found that icing hands and feet at home and during infusion, even for very short periods of time, helped prevent the hand-foot issues and was the only thing that would bring relief the hand and foot discomfort. The hand-foot issues are different than Xeloda hand-foot - as if the problem comes from deep layers of the skin being burned from the inside out. I would describe it as fire feet and hands.
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thank you so much for the advice JFL, I'm so grateful to you for these tips on how to best deal with the SE of this drug. I am a very handy person, in the midst of a major apartment renovation, I will have to discipline myself to be careful and relax during that sensitive period. I guess I'll switch gears and focus on my bookwriting instead
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Mia, you are multitaletented . What type of books do you write? I just finished a remodel on my kitchen. One room at a time for me.
I hope I'll get a long run out of X but wonder if doxil will be next for me. You won't lose your hair, right? But, you do have to be pre treated with steroids, correct? It is IV. Ok, I like the no hair loss but I'm allergic to high dose steroids. First things first, I'm just on my second week of X. Doxil is one I am not familiar with, I know all about the older ones. I've had all of them back in the day.
I've gotta get busy for the next two days. Lots of preparation for my sister and her BFF to come visit me next week, then my brother is coming to watch the Derby with me. I actually got to go to the Kentucky Derby back in 69 and 70. One of my favorite memories with my family. Now everyone know knows I'm glued to the TV all day on Derby Day. My brother and I try to make it a tradition every year. Fun
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hi Grannax, I hope Xeloda works for you for a very long time. But it’s good to know that steroids are no longer necessary with Doxil and hair loss is a maybe.
I chose it because it’s administered once @ month, and because JFL had an easy time with it in comparison with Abraxane, what my MO would have preferred. However, I still greatly dread the idea....
Yes...God has bestowed me with many creative talents for which I'm very grateful, but I believe we all have amazing talents....it's just that some never get to use them. Creativity for me is the ability to resolve problems in an intelligent and simple fashion. Like those Apple products that Steve Jobs created. Now, unfortunately the days of innovation and simplicity are over for AAPL.
Currently, there’s nothing more challenging in my life than understanding and surviving cancer, and I’m so grateful for this community that keeps me sane and well informed .
This morning, for example, I read this amazing and uplifting story that I truly hope it’s not a scam, because It would otherwise be a real heartbreaker.
Regarding my books, the first one is about the outcome of a Socratic type 10 year's long inner journey into self-knowledge, coupled with a Yanov type regressive psychotherapy techniques, and insights gained from the practice of Advaita Vedanta.
The second one is a dessert book for diabetics, as one of the major changes I made was learning to truly love my real self. Throughout my life I'd always shortchanged myself, while placing everyone's needs before my own. That tendency had made me very successful and popular, but at great cost to my real self. So, since I love to eat sweets and I’m diabetic, I learned about nutrition, and created a series of delicious yet healthy desserts that solve that problem, so I could have my cake and eat it too...so to speak...so sharing it with others made sense.
Congratulations on your new kitchen, I would love to see what it looks like... I love kitchens! Have fun with your family watching the derby
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I’m diabetic too. I would love one of your cookbooks. 
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Grannax, your kitchen is very pretty and inviting....I can visualize it busy with family members as you all prepare a big Thanksgiving dinner together. Enjoy!
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Grannax- Your kitchen is very pretty, and spotless!! A place for everything and everything in its place--my mantra. Wish we lived closer, I would love to come over and enjoy a snack in your kitchen. We could sit at the table and have a long visit. Is that a farmhouse sink? And I love the hutch with the china--beautiful.
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Grann I love your kitchen! I have the same color green with white cabinets. They were dark brown and I painted them and took the doors off so everything shows. Not nearly as nice as yours because it's all original with the counter and backsplash made of white formica with gold swirls. Dishes are white with a blue stripe. I think we have similar tastes.
Miaow I don't think that story is a scam. He's in the fb group for repurposed drugs and he doesn't sell anything or get anything out of telling people about it.
My PET that is scheduled for may 10 was not approved by highmark. The last one was a little over 6 months ago. Not sure what if anything I will do about it.
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HLB, does your MO speak to the insurance company? I get PET scans every three months and this last time after two months. As it turns out, my MO often speaks to the insurance company. He never mentioned this until my last appointment. The insurance companies have doctors reviewing certification appeals and making determinations about these things and he will speak to one of them and the PETs have not been turned down yet after 4.5 years. If your MO doesn't advocate for you, though, you will have a tough time getting it approved.
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