How are people with liver mets doing?

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  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2018

    Well, it looks like Doxil and I will be breaking up, after 12 cycles (months). I had to go in to the MO special today, because I got tired just walking around the drug store. They took a quick chest image, and my right diaphragm appears to be partially blocked by a big fat liver, which is why I feel like a can't get a full breath. The finding isn't much different from my last CAT scan, and I have been known to have fatty liver.

    You see, I'm sitting here trying to convince myself that it's bony mets causing the trouble, not a liver full of mets. I feel the pain in my thoracic spine region. Oh well, fear won't change what is actually happening in my body.

    They are going to hurry up my CAT scan. It was to be the 12th, but they are aiming for Monday now. TMs are up the high 400s. This happens every year for me - the annual changing of the chemotherapy.

    MO is talking about going back to a taxane. Sounds good to me. I've had hair for a full year now, so time for a change.

    In other news, on the way to the ER, my car broke down. I had to get it towed, then hop in an Uber to get to the hospital. Spouse is out of town, and my bf is in bed with the flu. I have never felt more alone in the world.

    I'd love to hear what people felt when their liver was wonky. Then I will obsessively compare it to my pain, in the hope that aerobic worrying will help heal things up.

  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2018

    KC you nailed it all. Thank you so much for your wonderful insight, screw them. You are lucky that your Mom is there to help you, I must tell you it takes a village. My other DD's helped so much, it was just us, but each one of the us helping was huge. Just the fact of not having to worry who will be there for the kids when they come home, little things…at least that.

    Muddlingthrough you are in the best company here.

    Curi-ous wasn't Babs on GDC-0077? Wow your info is priceless.

    Anita I hope this booster blood got you some strength back, just on a hunch, Zar is got a point there. Maybe it's worth a convo?

    Grannax so happy for you. It sounds just magical. How proud you must be of your son. No distractions.

    Blainejennifer what a bummer. But at least they know what you are dealing with. What are the tips they could give you to feel better asap, till the tx takes effect?

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    blainejennifer, I'm so sorry to read about your set back. Surely your predicament will change soon. Your spouse will return and your bf will get out of bed....meanwhile try to be positive, it could just be a fatty liver.

    I too tend to worry every time I feel pains around my liver, it's a natural reaction, although so far nothing has shown up...I hope it's the same for you

    Sending positive and calming energy your way....tell yourself: this too shall pass, and tomorrow is another day....

    Grannax, congratulations on your great scan and having such wise perspective and handling of your MO quirks.

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Grannax - I agree. Take a well deserved break from cancer and focus on you life. And congrats.

    blaine - A couple of notes on what a really bad liver is like. when i was at 60%+ liver involvement about 2 months ago, my hands and face turned red, my pee turned dark and smelly. My liver was 2-3X normal size such that when i bent over it was uncomfortable. my gallbladder visibly stuck out under my rib cage. i had aches in my rib cage. I had pain in my right shoulder and neck.

    My poop had undigested food. I had unexplained weight loss. There is a complex interchange between the liver and the gut where the two organs supply each other with enzymes. When the liver is severely compromised, you don't digest food or absorb nutrients properly. There are enzymes you can buy and put in your food that help somewhat with this issue.

    One subtle thing i learned is that when the liver gets enlarged, it encroaches into the abdomen and displaces real estate occupied by the gut. The gut just doesn't have room. This effects many things. I learned that I had to lie over a bolster to digest food. I would get bloated. I would lie over a bolster and I could feel my abdomen start gurgling and churning. Within 10-15 minutes the bloating would subside.

    Even more interesting is that lying over a bolster would calm me down and put me to sleep. Sometimes so fast that it was weird. I would settle into the position and be asleep in minutes. My theory is that the pressure from the liver irritates some nerves that kept me wired and the position relieved that irritation. For a few weeks I was falling asleep every night on the living room floor. I had a setup where I could lie on the bolster, and then roll over onto a pad and sleep when sleep hit me. I would wake up in the middle of the night, get back on the bolster, fall asleep again after a short period. I went from not sleeping well to get great sleep. The cats thought this was great.

    My liver is not normal size yet, but much smaller. Still, having experienced these things in the extreme, I am more tuned into the subtle effects of an enlarged liver. I still lie over a bolster in the evenings, still feel the calm, still feel the digestive system kicking in. I continue to have bloating which is greatly assisted by this pose and other yoga poses. Lying over a bolster in the evening still improves my sleep noticeable.

    There is pain. The liver itself doesn't have much by way of nerves. Liver pain is often referred to the right neck and shoulder. I would feel shoulder pain when I was very active or doing a vigorous yoga practice. There was some rib/chest pain. There may be pain in the organs and areas around the liver. But the symptoms of an enlarged liver, for me, were much more than just pain.

    Hope that helps,

    Z


  • cure-ious
    cure-ious Member Posts: 2,869
    edited June 2018

    BlaineJenner, you are hysterical! I am good at anaerobic worrying too, and then worry that the worrying is making everything worse...

    MommmmAtt.... like everyone here, my BP drops when I see a post from you- just what we need a rousing spirit and some encouragement to kickstart the medical system when needed, which is pretty much all of the time..

    The phase 2 results of Taselisib were just published, they got just under 5 month PFS, which is not great, but they were taking both PI3K mutations and nonmutations. Interesting that they also published the range, which went from 0.9 to 40 months, so some people got a good response. The phase 3 data we may hear about Saturday morning.

    And yes, Momm, I think Babs did get the GDC-0077, which is an inhibitor only works on the mutant (hyperactivated) PI3K enzyme, so it should have far fewer SEs. But overall this looks like a therapy that you'd want to know that you have the mutation up front..



  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 274
    edited June 2018

    Thank you Z, I’m feeling better today. They are going to lower my dose to see what happens. I’m thinking of you too. Have a good weekend.

    Hugs,

    Anita

  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2018

    Thanks for the information. Z - I'm getting a bolster!

    Jennifer

  • lisajo6
    lisajo6 Member Posts: 155
    edited June 2018

    I officially got the word I am Triple negative now. I am on doxil, but have read there is not much out there for me. Sigh. I don't get how I can be ER + for so man years. I feel defeated. I don't even want to know my tumor markers or liver panel. I am just tired. At this moment I want to stay in bed. And quit all treatment. Sorry such a downe


  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    lisajo - That is a punch in the stomach. Get into into bed, pulling the covers over your head and letting it all sink in. The recurring shock, panic and trauma comes with each bad diagnostic and treatment change. We all wonder how we can keep going on ...

    However, when you have processed the change in your status, consider contacting the Cancer Research Institute and let them evaluate your options for immunotherapy trials. TNBC responds to immunotherapy much better than ERPR+ cancer. Your TNBC status gives you compelling options. I recall that you are being seen at the Cleveland Clinic. I'd be surprised if your doctor doesn't go this route unprompted; however, the best MO's have their blind spots for sure and at times we have to be proactive even at the best institutions.

    If you need a quick pick me up, go to facebook and join the Closed Metastatic (Stage IV) Breast Cancer Support Group. Search for Barbara Bigelow. She was in the same position ... ERPR+, switched to TNBC, very aggressive. She did immunotherapy and Halavan through a clinical trial. She has been off treatment and in remission for 2 years. When immunotherapy works, it works. It doesn't always work, but I feel you do have treatment options worth trying.

    >Z<

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited June 2018

    Lisajo, Please don't ever apologize for feeling down. You have received the news that you feared, and it is reasonable and understandable for you to want to curl up and cry and try to hide from the world. That's what I do when I get bad news. Just don't wallow in sadness and despair for too long. There is hope. As Z told you, immunotherapy is the new go-to for TNMBC. Have you reviewed the lists of clinical trials available? The list is full of trials for Triple negative patients. Several years ago, researchers began the same type of push for HER2+ BC. It was identified as an aggressive type of bc with few treatment options. Now, if you look at the people on these boards who are NED, you will see it has an abundance of people who are HER2+. Some of those very same people have remained NED even after coming off treatment. That was unheard of several years ago. Is it a miracle? No, it is the positive result of increased research and testing to treat a population of MBC'ers who had been difficult to treat and ostensibly left behind in the quest for new treatments. Now the focus is turning to people with triple negative disease. New treatments, testing, and trials show great promise for that population of patients. People are being successfully treated, and lives have been extended. More treatments are coming as different drugs are testing in combination with immunotherapy. There is hope. Please do as Z suggested and contact the Cancer Research Institute to find out about clinical trials that would be appropriate for you. Talk to your MO about future options as well. Sending you a big hug.

    Hugs and prayers from, Lynne


  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    This article explains much about the various protocols of Immunotherapy...unfortunately it's all greek to me...but I'm sure some of you can understand and couldbenefit from the extensive information it provides

    https://www.nature.com/collections/lfznqnltwr/?utm_ASCO-COLL=naturemarketing

    Cancer Immunotherapy

    • Collection home • Mechanisms of resistance • Combination therapies • Nanocomplex •

    Predictors of response Immunotherapy is the most promising new cancer treatment of the last years.

    This article is a lot easier to read and very upbeat

    Oncologists dare to talk of a 'cure' in fight against cancer

    From Immunotherapy, a Flipboard topic

    For George Coukos, one of the world's foremost experts in immunotherapy, this is "an extraordinary moment in human history" when the word …From his mouth to God's ear....

    Read it on Flipboard

    Read it on ft.c



    Last but not least...the most interesting and innocous treatment of all that corroborates the work of an Italian MO and surgeon called Simoncini. He has been injecting baking soda and successfully treating people's cancers. He says cancer is a fungus, a form of candida...and isn't interesting that candida is indestructible— can only be contained—and is what will ultimately consume and will remain of our bodies? That ultimately, what we will leave behind will be a pile of well fed funguses? Simoncini says that candida is always present in large quantities at the site of many types of cancers...In his view, a tumor is nothing more than your body's attempt at protecting itself from Candida. however the medical establishment sees that as a coincidence. No one is really paying attention to the fungus colonies and asking what are they doing around tumors. And what a interesting coincidence that both cancer and candida thrive on sugar...and the symptoms, such as fatigue, are also similar.

    I may be partial to this theory because Simoncini is Italian, SillyHeartand for the last forty years I was unsuccessfully treated for candida overgrowth. So, one thing I know: candida is as impossible to destroy as are cancer stem cells.

    Thank you for allowing me to indulge in this bit of heresy.... the content of the article below is to blame....

    To be on the safe side I just added a teaspoon of baking soda to my glass of lemonade, it actually adds flavor to the drink...although as per Simoncini the baking soda has to be injected directly at the site of the fungus colony ie the tumor or circulate in the blood. Shooting bicarbonate of soda in patients is used regularly in hospitals to treat many serious diseases. Who knew?


    https://www.medicalnewstoday.com/articles/321970.php

    Could baking soda improve cancer treatment? (Good question Tim)

    Tim NewmanThursday 31 May 2018


    Consuming baking soda may help immunotherapy drugs to fight difficult-to-treat tumors. This cheap and simple intervention may eventually improve current cancer treatments.

    Baking soda could help to boost immunotherapy.

    Within tumors, large portions are deprived of oxygen. Scientists know that these hypoxic regions tend to be the most resistant to treatment.If a cell is unable to access adequate oxygen, it slows down and enters what is known as a quiescent state.

    Back to greek....The molecular switch mTORC1 is responsible for assessing the situation before telling the cell whether or not it should divide.If mTORC1 is not present, the cell's internal processes are shut down. Deep within tumors, mTORC1 activity is almost non-existent.

    Boosting immunotherapy

    When a cell enters this quiescent state, cancer drugs are much less effective. So, the researchers wanted to see if it could be overturned. They found that, when mice were given baking soda in their drinking water, the acidity of the quiescent regions of tumors was reversed.

    Once this had occurred, lysosomes were sent back toward the nucleus, mTOR was activated by RHEB, and cellular processes were switched back on.

    Dang explains what the scientists saw after mice had consumed baking soda, saying, "[T]he entire tumor lights up with mTOR activity. The prediction would be that by reawakening these cells, you could make the tumor far more sensitive to therapy."

    "The concept is so easy. It's not some $100,000 per year drug. It's literally just baking soda."
    Chi Van Dang

    Cancer immunotherapy has been demonstrated to be less effective in acidic conditions because T cell activation is reduced, so this finding could have important ramifications.

    Acidity's role in cancer progression and treatment is a fledgling area of research, which means that much more work will surely follow. Dang and his team plan to continue their experimentation, focusing on how acidity impacts immunotherapy.

    BTW...all alternative protocols are in agreement over the need to alkalize our bodies and reduce acidity for optimum health. That's why eating loads of veggies is so important

    This video talks about how to strengthen our immune system, so we can prevent deadly fungal infections when being treated in a hospital

  • cure-ious
    cure-ious Member Posts: 2,869
    edited June 2018

    Miao, thanks for listing the flipboard immunotherapy site, will definitely be tracking this one- You guys have the best connections!!

    They report on an usual case of a cancer patient for whom CAR-T therapy did not initially work, but then his immune system went crazy and killed all of the tumor two months later- why? and what was the reason for the delayed response? When they investigated, they found that it was just a single clone of one of the millions of engineered CAR-T cells that they had injected, which had grown up and multiplied and did all of the work of killing off the tumor. What was different about that one cell? Well, when they engineer an anti-cancer gene into T cells, it can integrate into any location it wants to, and does so at random, like a virus can integrate itself into any part of one of your chromosomes. In that particular case, the CAR-T anti-cancer gene had inserted itself into the TET2 gene, and inactivated that gene. Humans have two copies of every gene of course (one on each chromosome) but in this patient, he already had a mutation in the other TET2 gene. So he essentially lost all TET2 protein expression, and that was enough for that clone to be able to take off and go to town on the tumor. So now they are investigating whether inhibitors of TET2 or other ways to inactivate TET2, at least trasiently, will make CAR-T work way better, with maybe just a few cells injected, and many more patients respond? Right now is used for blood cancers, but this is a very promising approach we can hope will work for solid tumors too

    Here is a summary of the paper, published in Nature:

    https://www.nature.com/articles/d41586-018-05251-5



  • Celebrate_Life
    Celebrate_Life Member Posts: 76
    edited June 2018

    So much interesting information. We all just need to hold onto the next new treatment...

    One minute, one hour, one day, and then repeat...

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Thank you cure-ious, thank you Miaomix. Starting a fasting mimicking diet today in prep for IV on Monday. Liver markers were more or less flat on Wednesday relative to the week before. Dull ache in right rib cage. Worried I have stopped responding to Abraxane. Amazing how little it takes to shake my confidence.

    >Z<

  • sandilee
    sandilee Member Posts: 436
    edited June 2018

    cure-ious- Thanks for the response. I will look into Taselisib for the future. Yes,, I recently had another liver biopsy after Doxil failed in March and I'm still ER+. I haven't had Affinitor/Aromasin. According to my recent Foundation 1, the AIs don't work well for me and I'm a bit leery of Affinitor, so I'm not eager to try that combo. Faslodex and Abemacicib were appropriate for my mutations, so I'm hopeful. My concern is that I have already been on Faslodex so it won't be a novel drug for my cancer. It was over four years ago, so maybe the tumors have forgotten about it. ;)

  • JFL
    JFL Member Posts: 1,373
    edited June 2018

    BlaineJennifer, I am so sorry to hear that Doxil stopped working . . . 12 months is a very good run but none of it is ever long enough. When I have liver symptoms from progression, I feel a bit more pressure in when I lean forward or slouch, like things are a little bit more cramped in the liver area in front. Also, when I take a deep breathe, I can feel a slight tightness on the right side of my back behind or above the liver, like the muscles need a good stretch and the deep breathe is helping with that. Sometimes I have some pain but I typically have more pain when the treatment is working. My liver will get very, very loaded with tumors with little symptoms. Since diagnosis, I have had some minor numbness in the skin on my back, near my spine on the liver side. It took me a few years to realize all of my ongoing symptoms were not from bone mets in my vertebrae and ribs in the front and back of my liver but were from liver mets. When I have initially diagnosed, I had tenderness, sensitive to the touch and pain up and down the top 2/3rds of my spine on the right side, about an inch over from my spine. I assumed it was from bone mets but never understood why I had such a distinct pain on the right side and none on the left when the rib and vertebrae mets were pretty evenly spread between the two sides. In hindsight, I realize it was my liver pressing on a nerve, likely the same nerve that is causing the numbness. There is a nerve back there which is commonly pressed upon by a liver enlarged by tumors.

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    Z stay positive...as we all know TM are not very reliable and if they haven't changed just means that your condition hasn't changed, that means you should still be NED in the liver.

    I can see the wisdom of doing a fast mimicking diet now from many perspectives, especially if we're not undernourished.

    After a period of indulgences with increasing amounts of fruits and breads which have made me regular again, I'm going to greatly increase my probiotics, my vegetables intake and include natural antifungals to curb the cravings for simple carbs.

  • cure-ious
    cure-ious Member Posts: 2,869
    edited June 2018

    Oh, for craps's sake! They embargoed the abstract for Sandpiper/Taselisib trial, and then it turns out its because the results were crap and Roche is scrapping the drug?!! Why do they bother doing that?! Was there anything in ASCO this year positive for MBC- the headlines have been Ibrance drugs for like five years now, time for some breakthroughs. And no immuno combos to highlight for ER-positive disease. Very disappointing. Plus, ASCO puts out a press release sounding like this is good news!!

    Here is the ASCO 2018 "news release" that they picked as such a winner among all of their abstracts to highlight in a press release today:

    June 2, 2018

    New Targeted Therapy Slows Growth of Advanced Breast Cancer

    CHICAGO – In a phase III clinical trial, a new targeted medicine, taselisib, combined with standard hormone therapy fulvestrant (Faslodex®), halted the growth of advanced breast cancer growth by 2 months longer than hormone therapy alone, and decreased the chance of cancer worsening by 30%. Taselisib targets a common genetic abnormality in breast cancer – PIK3CA gene mutation – and is the first and most potent treatment in a relatively new class of PI3K inhibitors, according to the authors.

    Versus here is what is actually happening, Roche is dropping Taselisib and will not take it to FDA for approval, because the results suck and the drug only extended what you get with Faslodex alone by two months

    http://whtc.com/news/articles/2018/jun/02/roche-dr...

    Head exploding....

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    cure-ious, sorry about the dissapointing news...I know how you feel....but maybe all is not lost...

    From my uneducated and humble perspective, I'm hoping for a paradigm shift in the fight against cancer. I fear they all seems to be looking so close, they are missing the big picture.

    Diabetes used to be a deadly disease, with all sorts of horrible health problems, until someone figured out that the lack and proper absorption of insulin was the culprit for all those symptoms. That is true for every person that is prediabetic or diabetic. The mechanisms—a diet rich in simple carbs and sugars—and solutions—stop eating so many carbs, and excercise, or inject some insulin—are clear and the same all over the world. insulin injection alllow people to live with diabetes.

    I believe the solution for all cancers lies similarly—in the lack or abundance of something—that makes us sick. Which can be fueled by the barrage of estrogenic factors and the hundred of carcinogenic chemicals in our food, water, soil, and air. Maybe some of us are more susceptible to this barrage of carcinogens.

    It has been scientifically proven, based on the rate of the growth of cancer cells that a 1cm tumor takes 10 years to grow. So it leads me to believe that some of us become exposed and suffer from whatever is lacking or abundant in our lifestyle throughout our lives, and hormonal factors contribute to it's growth

    Let's not forget that today 1in 2 people will be diagnosed with some type of cancer in their lifetime, and that ratio is getting only worst, so I truly hope they start looking at the causes and stop working on extending life by months at the cost of so much suffering, especially for all of us that are at stage four, but of course if any one of those geniuses with their noses into the subatomical look of cancer comes up with ”a cure” I’ll be very happy. I would love to be wrong.SillyHeart


  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2018

    JFL,

    Thank you so much for a very detailed accounting. It truly helps.

    I'll be going through the tube Monday, so then I'll get a better idea of what the heck is going on. My MO hypothesizes that something is keeping my diaphragm from fully inflating, so I'm not catching my breath well. Oh, that's not scary. That sound you hear is my brain climbing out of my skull, and running as fast as it can to Anywhere Else.

    TMs in the 400s, but I throw high TMs. I did 2,800 once on bone mets alone. Go me!

    For those of us contemplating a ketogenic diet, here's an article about how ketones are a super fuel for tumor growth: https://www.tandfonline.com/doi/full/10.4161/cc.9....

    I know it's just one study, but I've changed some of my cancer habits based on one study before. If someone has data rebutting this, please let me know. In the meantime, I'm going to concentrate on minimizing insulin spikes, and getting my blood sugar low. Right now, eating is about 120, and fasting is about 90ish. I'm an obese lady (212, 5'5"), so I am sad to not have a keto diet as a tool. I lost about 50 pounds before Stage 4 diagnosis on a keto diet, and I worry that it accelerated metastasis. But, it was an easy eating plan, and I was never hungry.

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    hi Blainejennifer,

    Im very curious on what your diet consists of to get 120 with food and in the 90s afterwards.

    Were you ever diagnosed with insulin resistance? or did you do the ketogenic diet based on your desire to just lose weight?

    I agree the ketogenic diet is not right for fighting cancer, and honestly I don't see how it's possible to restrict carbs in the long run. I used to aim for between 20 and 30 grams @meal, without counting the carbs in the vegetables, but lately the daily consumption of fruits —my favorites— has wrecked havoc on my system. Although I can control sugar levels with Metformin, I know my insulin levels are toxic because of the cravings I suffer from, but I know what to do...eat green vegetables instead and good fats, a little protein, manly sardines, imported lamb from New Zealand, Wild salmon and clams for the iron. Imported aged cheeses made with raw milk Reduce my homemade focaccias and breads no matter how many organic and sprouted grains it has. I'm a bread addict, and I know I'm intolerant to it, but sometime I can’t resist.

    What do you think? Am I on the right track?


    See what I have to deal with...Devil

    image


  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2018

    MM,

    I did the keto diet because I was morbidly obese. I won't defer blame, but it does run in our family. I gained 90 pounds during pregnancy, without developing gestational diabetes. The crazy thing is that I don't remember eating that much. I remember it like a fever dream.

    Then, of course, breastfeeding was supposed to melt the weight off. I BFed for three years, and lost not a pound.

    Anyway, I weighed about 260 at primary diagnosis in 2006. No one spoke about my weight. I'd bring it up, and the MO was all, "Noooooo. Your fat didn't cause your cancer.", which we all know is bogus. And, I didn't get the full dose of chemo for my bodyweight, because - then - fats were dosed at a midpoint between their healthy weight and their actual weight. Everyone was scared of cardiotoxicity. ASCO, in 2008 (I think) had several studies showing that we large folk could get the full dose with no extra heart problems.

    I've never been diagnosed with insulin resistance. I just know that whenever I get bloods run, my glucose runs anywhere from 90 to 120. A fasting stick for the PET scan is always under 100, and usually in the 80s. I eat butt loads of fruits and vegetables. Meats taste awful to me lately, but spouse forces me to eat about 6 ounces of lean chicken breast almost every day. To keep pooping, I stick that benecal fiber in most of my liquids. It's inulin, and is really good for blood sugar stability.

    Metabolically, I think sugar is the devil and fats are fab. We evolved with fats, so our bodies are used to dealing with that calorie source. We did not evolve with simple sugars. The closest we came was honey, but it was got at such a high physical price, and we ate it full of bee bits and wax, that while it may have given us an insulin spike, it wasn't a daily thing.

    For most of our human history, we just didn't eat simple carbohydrates. Not until the farming revolution did we have access to a grain heavy diet. Still, our diet and activity levels kept the species lean. It wasn't until the 1970s that we started seeing abnormal levels of obesity in adults and children. There are many hypotheses as to why: increased sedentary habits, fast food, larger serving portions, and sugar soda. I think it is all of that. Sugar soda is the worst offender. I remember my mother treating herself to an 8 ounce bottle of coke two or three times a day. Now, I can swing through my local fast food joint and get almost half a gallon of sweetened beverage for a low cost. Endocrine madness.

    If you are eating a bread that is made with a good fat, and bedecked with protein chunks, I don't see it as a bad thing. For me, it wouldn't cause an insulin spike. I know because I got a blood sugar meter once and tested my reaction to most everything I ate. Ice cream didn't spike because of the fat, but sorbet did.

    Because of neutropenia, I can't eat my favorite thing: a large mesclun salad, partially wilted because it has sizzling chunks of chicken thrown in it, with a good italian dressing. OMG, I miss that. With some toasted brioche, and a large iced tea.

    I have to thank my parents for the fact that I'm obese, but with decent blood sugar, and yesterday, even though I was freaked out at the MOs, my BP was 117/73.

    You are on the right track. Do you have a secret fat treat that you use to shut down the cravings? Mine is two poached eggs, with a good sea salt. That keeps me from running away with my kid's cookie stash. Are you checking your blood sugar about thirty minutes after eating to see how you respond to various foods?

    Now I have to go start a nice brioche dough. I'm going to stud it with nuts, and maybe some raisins. You have inspired me.

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    I wrote a long post in the abemaciclib forum on cancer diet because there is some confusion created by the commonly repeated statement "sugar feeds cancer." True but the relationship is indirect and there are good carbs and bad carbs. It seems relevant to this discussion ... so here it is ...

    Does sugar feed cancer? Every carbohydrate you eat is broken down into sugar and feeds all cells healthy and normal. Once it is broken down, sugar is sugar; we live primarily on glucose. Carbohydrates are one pillar of a healthy diet. But that is the wrong question to ask.

    It is the insulin spikes caused by added refined sugar that drive inflammation and cancer growth. This effect is very strong. Complex carbs (whole grains, vegetables) do not have this effect. In addition, cancer patients are highly susceptible to nutritional deficiency due to both drugs effecting digestion and absorption of nutrients as well as damage to the liver by both the drugs and the cancer. Sugar has zero nutritional benefit beyond calories. The phytonutrients in vegetables have high activity against cancer, and you want that stuff coursing through your veins. There is an mTOR inhibitor in olive oil that shows higher activity against cancer in a petrie dish than any pharmaceutical available in the clinic. You want every calorie you eat to be medicine.

    In sum, there is a big difference between getting your calories from nutrient poor simple sugar that spike insulin and nutrient rich foods like complex carbohydrates, olive oil, legumes. Interestingly, high levels of protein also drive cancer growth by increasing levels of the insulin like growth factor (IGF-1) so high protein diets, though popular, are not in fact good for cancer patients (or anyone IMO). Smart people challenge me when I use the term ketogenic to refer to high protein diets generally so I don't use the term any more. Apparently, ketogenic does not necessarily refer to a high protein diets, but basically you want to limit your protein to what is required.

    The diet I have come to embrace consists of nutrient rich complex carbs ( vegetables) and good oils (olive oil, nut oils) in abundance, some whole grains and legumes and some protein per WHO guidelines per adults ... <50-60g per day of protein from all sources. 60g of protein is very little. 3 oz of steak has 25g of protein. Whole grains and legumes also have abundant protein. You get enough protein from eating a single serving of eggs, fish or meat 2-3 times a week, max*.

    A pure vegan diet is not necessary. Fish and fish oil are good for cancer patients. But a well structured vegan diet is great if that is your preference. One can do the math and determine how much protein an adult needs. It is very little. Any more and you are driving up growth factors that are problematic in an adult. Kids are a different story, BTW.

    The first book I read on diet and cancer was Anti-Cancer A New Way of Life by David Servan-Shreiber. This well researched book remains the cornerstone of my approach to cancer nutrition. I've since become interested in the work of Valter Longo. Longo is good at summarizing recent research from several groups studying nutrition an cancer and he is a good communicator. Longo's book is called The Longevity Diet, but there is a chapter on the research into cancer nutrition. You want to follow the links to the mouse studies which are astonishing. This is a good video. He has many good videos.

    All that said, after a long foray into more recent research, David Servan-Shreiber's 20 Rules for Cancer from back in 2010, anticipates and sums up very well what Longo says. Most FABNO reference his work and the 20 rules because they remain solid. Cancer nutrition is a confusing landscape because it doesn't take much to throw a website out there and opine on nutrition. No one will stop you. But the peer reviewed university research on cancer and diet consistently return to the Server-Shreiber/Longo model.

    >Z<

    * Lulubee wrote a hilarious post about craving a T-bone steak after chemo which had a lot of wisdom in it, naturally. I do occasionally have cravings for a pile of protein a couple of days after chemo ... I remember Lulubee and I will eat a bowl of tuna salad. . Perhaps there is something going on with chemo and muscle mass and your body needs the protein to recover? I don't know but I trust my body. But when the craving passes, I am back to eating minimal protein.

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Cure-ious -

    I am so glad you follow ASCO and summarize it for us, because I cannot. It just pisses me off. Our model for translating cancer research to the clinic is pathetic. Our research model is setup for diseases that follow patterns like classical music. Cancer is all jazz. You never know where it will go and it depends on the person. We're like the British army fighting the Revolutionary War, ineffective and picked off by snipers. These pathetic results are why so many of us are emboldened to head off and fight our own little guerrilla war on this beast.

    >Z<

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Radiotherapy offers new treatment option for liver cancer

    This is a link to a discussion of local treatment of liver mets with radiation (Y90). Like so much cancer news in the popular press, not actually news or new at all, but interesting that they feel that with limited mets Y90 can be curative.

    >Z<

  • Celebrate_Life
    Celebrate_Life Member Posts: 76
    edited June 2018

    Well, a deep subject actually. I just received my ultrasound report regarding the attempted liver biopsy. They did not do it because they could not see defined liver tumors. My TM have doubled, up to 1400.

    Pseudo cirrhosis..... not good. After all these years of treatment, I guess it has finally taken its toll. I had a PET scan yesterday. Will see the doc on Wednesday to discuss further game plan.

    I am having a hard time digesting this news. Average prognosis according to ASCO 2017 is 3.6 months..... maybe I can beat the odds, again.

    Therese

    PS. I read the discussions and know that I smile and do a praise woohoo for good news and for the not so good news, a prayer. You gals rock and I appreciate what you share. 😊

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    CelebrateLife. I have a friend who just went through this. First doc at local hospital says she had pseudo cirrhosis. Yep, months to life. Then, after some more sleuthing and a visit to a better doctor, it turned out to be pseudo pseudo cirrhosis, or rather scarring caused by chemo (in her case abraxane). The technical term is is liver fibrosis. Common for patients who have been on chemo. I am going to assume you've been mis-diagnosed and ramble on a bit about what to do about liver fibrosis, but you need press your docs to re-visit the diagnosis.

    My friend has to avoid chemos that pound the liver (they exist). She is visiting a liver specialist (never heard of this, but they exist too) for a strategy to heal the scarring. The liver regenerates like the tail of a lizard. It's an absolutely amazing organ.

    If it is scarring, then relatively high doses of Silymarin (milk thistle) improved recovery of liver fibrosis (scarring) in mice. There are a bunch of studies like this. Here's another. Milk thistle is poorly absorbed. It takes a wallop to make a difference.

    Alpha Lipoic Acid is used to heal the liver after serious damage from poisoning (as in .... you went mushrooming, you ate the wrong mushroom). Consider one or two packets of this stuff in the morning. Liposomally encapsulated ALA is absorbed much better. Pay careful attention on how to take this goo. It's not pleasant stuff unless you drink it in a shot of water. There is a video on the LivOn site.

    In a nutshell, I don't believe the average radiologist writing ultrasound reports can distinguish pseudo cihrrosis from scarring from chemo. Liver fibrosis is serious, impairs liver function, needs to be treated and consider when choosing cancer drugs, but it doesn't give you an expiration date.

    Goodness, do we need more shock, panic, and trauma? I think every last one of us deserves a break.

    >Z<

  • lulubee
    lulubee Member Posts: 903
    edited June 2018

    Yep, I have a small but luscious prime New York Strip steak halfway between my weekly chemos, pretty religiously. And like clockwork, on my monthly week off, I have six big raw oysters slathered with a fresh horseradish-heavy cocktail sauce and a big squeeze of lemon, all washed down with a dark Shiner Bock-- with my MO's blessing, believe it or not. I can just feel that zinc bath wash over all my beleaguered cells. I don't eat much animal protein on the daily, though. I try to eat a few ounces of wild salmon once every week or two because ugh, our poor wilting brains on all this stuff we take! Besides, salmon makes you pretty.

    The one thing I do every single blooming day, just for my deeply insulted liver and gallbladder: I wake up, stumble into the kitchen, juice a big lemon and drink it like a shot, followed by a big glass of filtered water. I do not start my day until I've downed that lemon juice. I envision it flushing out my biliary tree with a huge swooshing sound. When I forget my morning lemon moment, I feel it.

    I second Z on the Milk Thistle. It's amazing stuff and I take it on a pulsed basis (which actually just means I forget a lot of the time, but "pulsed" sounds more trendy and intentional so let's go with that). I once took an herbalist course, way back in another epoch of life, where I was taught that MT is the only substance known to prompt liver regeneration in cirrhosis, and that in Germany it is prescribed by doctors for that purpose. Worth a shot, I say.

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Hi Lulubee - I think of you often, but definitely every time I get a craving for a pile of protein. I definitely do not crave a juiced lemon in the morning but I'm willing to take advice from a person who has been on Abraxane for 16? months. My local onc gives me 6 months on Abraxane. I intend to blow his mind ...

    How are you doing. Still rockin' Abraxane?

    >Z<

  • thrivingmama
    thrivingmama Member Posts: 133
    edited June 2018

    Hi - Just reading some of the comments around milk thistle and thought I would chime in. I admittedly don't know a lot about it, but it came up for me recently, so thought I would share some of the conversations I've had this week. I got a chinese medicine opinion recently, and milk thistle was suggested. I had two liver mets (now not detectable on PET/CT) but my liver enzymes are also going up a bit (perhaps due to the gemcarbo I am on?). Anyway, my oncologist wants me to work with my nutritionist to make sure I am taking supplements that are gentle on the liver. Apparently it's a delicate balance between detoxing the liver and being kind to the liver. All this to say that milk thistle is currently NOT being suggested for me. It may be a good option for you, but you may want to work closely with your care team to figure out the best option... There are other options too that are good for the liver.