How are people with liver mets doing?
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Thanks everyone. It's amazing to me the sense of calm that I felt when I got the result and at least knew what the MRI said even though it is ambiguous and possibly not awesome. The not knowing is just ..ugh.
I am with you Cure-ious, I think it is not cancer. There are still questions. Working my network and figuring out the next steps. My sense is that I want it out benign or not. I have some symptoms I think are from that thing. It won't get easier to treat as it gets bigger. As I understand, it will grow, just not fast and it won't metastasize. The characteristic of cancer that makes it deadly is metastasis.
Miaomix, Grannax - I have some very mild numbness/stiffness on the right side of my face and across my lip. Some pain around my eye socket. Very mild. It's the kind of thing you would ignore if you did not have cancer. I also have a lesion in my spine that is in a place that raises concerns for metastasis to the brain. My vision is deteriorating. One RO pointed out to me a couple months ago that it had to be watched. Thehe cancer that has taken off in the last couple of months is really aggressive. Oddly not necessarily a bad thing because it makes it very susceptible to chemo. Finally, I've noted that brain mets are largely symptomless when it's early. My thinking was why wait until the symptoms are bad?
Still, when I raised the issue with my MO last week, I was expecting push back. His enthusiasm for a brain scan was a piece of my freak out, for sure.
Z
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Z-damn it! Why, oh why, dear sweet lady, are you having to deal with more BS? I am beseeching the heavens for an answer. Why do any of us have to deal with this miserable disease?
I am so thinking of you now. I'm betting this is just going to be a big nuisance, but not a huge setback. You are so treasured here, and of course, we want the very best for you.
I have just finished my second cycle of Madame X. Feet are beat up, but have not missed a day of walking. Interesting syndrome. Have no indication yet if it's working, but recent pre Y90 MRI of liver shows some central necrosis in the three biggest lesions. Not sure if that would be old or recent? Also revealed multiple small tumors. Still well qualified for May 22 Y90 mapping as far as I know.
To all of you dear MBC sisters here in liver mets land, may the force be with you. MJH
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Z - Dropped by this thread to see my liver friends. Damn cancer! I agree that knowing is better than not knowing and there are lots of options. Plus, the chemo is working on it while you decide next steps. We are all thinking of you and sending you virtual hugs and good mojo!
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Z as it as said here b4 consider the trigmeminal nerve that is giving you issue with the vision and eye pain, Lisaj i think in your case also for the numbness - all i could say that Dani had these symptoms, and it took a top neuro guy from NYU to really look at it and say yeah it's trigering the nerves and then they were able to zap it directly. He almost could not see it, so obviously sometimes you really gotta find it.
Waves of good vibes to you.
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Gals, many of us also funnel all this extra stress into our facial muscles. I can manage to be pretty serene all day but then I clench my jaws and teeth in my sleep--HARD. I have a night guard but even so I have shattered four molars over the years. I wake up sometimes with sore temples, neck, cheekbones.
Botox in the jaw area has been recommended. Eeeks. More toxins??
The stuff that happens to our breasts with this disease is just the tip of the iceberg, eh?
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Z—Cancer cells adapt to gorge on sugar in the liver this study says. You've been doing the right thing by fasting before and after chemio..although I have to admit it's quite a feat you've been pulling off. If I understand it correctly, the study indicates that a patient with liver cancer would benefit greatly by the reduction of ingestion of fructose.
https://www.futurity.org/fructose-in-the-liver-can...
In the study, Shen and his colleagues found that certain metabolic genes became more active in liver metastases than they were in the original primary tumor or lung metastases. One group of metabolic genes stood out in particular, those involved in the metabolism of fructose. This struck the researchers because many Western diets are rich in fructose, which is found in corn syrup and all types of processed foods.
"When cancer cells get to the liver, they're like a kid in a candy store," says Shen. "They use this ample new energy supply to create building blocks for growing more cancer cells."
To feed on fructose, cancer cells need to produce more of an enzyme that breaks down fructose, called ALDOB, a trick they can quickly learn from the liver itself. Once the cancer cells figure out how to rewire themselves to gorge on the fructose, they proliferate out of control and become unstoppable.
Besides providing an insight into how cancers thrive after metastasizing, this discovery can lead to new therapies specifically targeting metastatic cells. For example, Shen says that avoiding fructose by eating natural, non-processed foods and providing drugs that block fructose metabolism could potentially halt the growth of cancer that has spread to the liver from other organs. And because new drugs targeting fructose metabolism have recently been developed by pharmaceutical companies to treat metabolic diseases, such crossover treatments may not be far away.
Since I know, I got to have something sweet and decadent once in a while, and can't stand the processed junk out there, I have been developing low-carb desserts that are free of flour and use pure stevia powder as a sweetener. These are desserts that a diabetic can safely eat. I've been trying to prevent diabetes and so far Metformin has been enough to keep my blood sugar in check, i'm grateful I don't have to give up natural sources of fructose such as strawberries, blackberries, apples and pears I have been eating, since doctors insists they are good for our health, but I now wonder if cancer cells can really discriminate between the natural source of fructose and the other kind. As far as diabetes is concerned sugar is sugar no matter where it comes from
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I had a head and jaw MRI and they found nothing. I still have a numb chin and lip. Went to the dentist and he sent me to an oral surgeon but I didn't go. I don't know what the deal is. Plus I have been consulates and took a suppository and a bit of yellow stool came out. Now I think my liver is getting worse.
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OMG. I swear if my earlobe hurt i would immediately think I have mets of the earlobe!!!!!!!!!!
It's so hard to be us. My kids and even BFF usually don't get it. I got in a heap of trouble with my son this week because I didn't think to tell him I had some pain and tightness in my chest. When that got blown out of proportion by my daughter in a text, the message he got was "Mom's having chest pain and shes having a test for pulmonary embolism." So, he's in the OR trying not to kill someone on the table (he's an anesthesiologist) while he tries not to freak out thinking I'm having a heart attack.
I didn't think to tell him because of course i think it's just an indicator that the mets in my chest are growing. Not once did I think heart. I tried to explain to him my perspective. He didn't get it.
Of course, it turned out to have nothing to do with my heart or lungs ( I won't know about chest mets till PET in May.
Then I read your story, Z. Sometimes I think a heart attack would be a lot easier than what we do, trying to live this MBC life. Keep up your fight. I'm rooting for you.
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Kaaborg and Kaylynne, how are the two of you?
Z..what the heck?
Lisajo6..hoping the Doxil is your ticket to sanity and dying cancer cells.
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Miaomix-metformin reduces gluconeogenesis in the liver by 30%, as well as assisting insulin with delivering circulating sugar to the tissues. You probably already knew this. There are trials investigating using Metformin as cancer treatment. I am newly diabetic, so hoping there may be benefits from taking it. This would support the fructose theory.
I could not survive without fresh fruit. I try to be reasonable, but it is my treat! Best, MJH
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Diet is very important, and the effect of insulin spikes is well understood as a factor in many diseases. The trick with fruit is that it can raise insulin levels much like having a soda. I still have fruit but not a big pile at one time. If I have fruit, I have half an apple early in the day, a few grapes later in the day. Not having a lot of fruit these days.
Complex carbs like vegetables and whole grains simply get digested more slowly, keeping insulin more constant. Not sure about fructose as the evil per say, but more nutrition per calorie with complex carbs.
>Z<
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MJHJ—I think the metabolic treatment the article referred to might be exactly what you've mention: Metformin as a cancer treatment in combination with other meds.
Z—I try to ingest no more than 20 to 30 grams of carbs @ meal....and use 1000mg of Metformin 2@day
You're right, the key is to not overdo it with fruits. I try to bring my BSL down to 120 two hours later, but I don’t always succeed....
like MJHJ I would feel severely deprived without my fruits.
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I recently learned about this disturbing fructose issue. It is metabolized almost instantly in the liver whereas glucose (in table sugar) is not metabolized as quickly and is mostly not metabolized in the liver. Cancer cells have a special infinity for fructose, moreso than glucose. It does apply to fruits although one has to balance that against health benefits of fruits. Also, some fruits have a higher fructose ratio than others. Of course, the worst culprit is high fructose corn syrup and added fructose used to sweeten food products. I freaked out and didn't eat any fruit or sugar for 3 days after learning all this. I went through an uncomfortable withdrawal and then felt awesome after the first day and a half. I could not keep it up though. Not realistic for me. Now, I do try to avoid all added fructose and, if I am going to eat sugar, select products sweetened with sugar rather than fructose. I even noticed my “light, no sugar added yogurt" was sweetened, in part, by added fructose. False advertising. I would like to avoid all added sugars (both glucose and fructose) but have found that difficult. I settled on trying to minimize added glucose sugars, avoid added fructose and eat fruit in moderation. I also take 1T of apple cider vinegar before bed. The friendly bacteria in it feast on sugar and lower the blood sugar levels in one's body.
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Keep in mind that different cancers have different responses to sugar; for estrogen-dependent MBC, those cells are more interested in estrogen that sugar to drive growth; for pancreatic cancer, liver cancer, its a bigger response to sugars..Its all relative and depends on what is driving growth of your cancer cells
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As always you are all such a wealth of information!!! Lately I’ve been living on eating chocolate chip cookies-not a smart idea at all!!! But I’ve lost a lot of weight for me and by eating them I stopped losing. Guess it’s time to switch to something else!!!!
Z I am really upset that you’re having so many issues. You’re always the “source” and the rock of strength. I hope you start to get some relief.
I had my bone mri and it shows progression. I had my ct scan and the liver shows some regresssion. I wonder if it’s from the Y 90. I gets pet/ ct the end of May to further check on the efficacy of the Y 90. I just wish I didn’t always feel so tired and winded!!!
Babs
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OK, I guess there is a caveat- it is possible that after a cancer metastasizes to liver, it might mutate so that it becomes more dependent on fructose for growth, compared to mets growing in other locations. For me, I say the occasional hot chocolate chip cookie is not dangerous, but I'm already in denial anyway.
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Hi everyone. Joining you all on the liver mets board. Along with initial bone, then brain.
But that's not where my focus lies. It's on the PARP inhibitors and the trials going on combining them with chemos to determine efficacy on mutated genes. I'm BRCA positive. Turns out the more mutated the cancer cell the more responsive it may be to immunotherapy, sounds similar to what you're saying Cure-ious. Wonder if you have any more info on pharma having a project.
Honestly, I feel like what I used to be scared of most - BRCA mutation - could keep me alive for the long haul.
I pray I'm right
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Babs—there's something called D-ribose, ( from amazon) that my functional doctor prescribed years ago to lower my blood pressure naturally. I have since discovered that it's also a very powerful appetite stimulant, and have used it repeatedly when I've lost weight and appetite since my diagnosis. One teaspoon twice @ day dissolved in water is all it takes.
I'm also suffering from tremendous fatigue and sleepiness on my current TX, so I stopped taking afinitor for two days now, hoping to recover my strength, and after sleeping all day long, of course, now that's past midnight I'm wide awake....
JFL— getting off sugar and carbs is nearly impossible. Like you are wisely already doing, we can only curb the amount and quality of what we consume....
Curious— I agree that the occasional treat is not going to make much difference healthwise, The problem for me is I that I find sugar and carbs to be highly addictive, therefore the need for low-carb, high protein, high fiber concoctions I call desserts.
AZS— welcome to the board. you're right about the BRCA, they do seem to have TX that last much longer...good luck getting on the PARP inhibitors trial....
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Miaomix, I would love some of your low carb dessert recipes!
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Azs I'm interested in hearing more about what you're saying. Sorry you are now on the liver mets thread, too. You have brain and bone Mets too? I dont know your history. I don't have BRCA mutation but i recently found out I have ERS1. So far as i know there is not a targeted therapy for this alteration/mutation. It would be encouraging to know that immunotherapy might be helpful for me someday too.💞
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hi JFL--If you love chocolate cake this recipe will satisfy like no other. And less than 20 grams @serving from sugar and carbs it's pretty, pretty good...it amounts to 1/2 egg, 30grams of dark chocolate and some butter @serving.
Recipe for Flourless and Sugarless Chocolate Cake-16 portions
This cake is deliciously decadent and intense-but filling. You will experience immediate satiety and no cravings, guaranteed!
500 grams 72% bittersweet chocolate (trader joe has the perfect 500gms confection imported from Belgium)
1-1.5 sticks of organic unsalted butter cut into pieces
8 cold, large organic eggs
1 teaspoon of pure stevia powder (buy from Bulk Supplements on Amazon. It's pure and you need very small amounts)
A pinch sea salt
2 teaspoons vanilla extract
16 Fresh sliced strawberries for garnish (optional)
Whipped cream or full-fat yogurt (topping optional)
Directions
Preheat oven 325 degrees.
Grease with butter a 9 inches spring-form baking pan. (a pyrex will work as well)
Melt the chocolate and butter together in a double boiler and stir till smooth. Add the vanilla.
Beat the cold eggs at high speed with a whisk attachment until creamy and the volume has doubled.
Fold the beaten eggs slowly into the chocolate mixture using a large rubber spatula. Keep on adding and folding till the two mixtures are completely integrated and even.
Scrape the batter into the pan and smooth the surface till it's even.
Set the pan in the center of the oven.
Bake until a thin-glazed crust starts to form, approximately 25 minutes
Cool to room temperature.
Cover and refrigerate overnight to mellow and firm. (I usually eat a piece right away- it's amazing even when lukewarm)
30 Minutes before serving, remove the sides of the springform pan and cut into slices.
If desired, lightly dust the cake with powdered sugar and top with strawberries.
To slice, use a sharp, thin-bladed knife, dipped into hot water and wipe the blade clean before each cut.
Total Servings: 16
Nutritional Amount for one serving:
• Calories 353.4
• Total Fat 28.5
• Cholesterol 138.9
• Sodium 72.7
• Potassium 58.3
• Total Carbohydrate 18.2
• Dietary Fiber 4.5
• Sugars 9.9
• Protein 6.8
PS: If you find this to be too rich, I have an Apple Cake that's pretty, pretty good...
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chocolate cake
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Here's my N + 1 data in relation to fructose and possible liver metastatic progression with a high/normal fructose diet: I'm 6 years out from my Stage 4 diagnosis, and I eat a butt-load of fruit. Mind you, it's usually raw apples or applesauce, so the bolus of fructose is mediated by fiber. My former three liver lesions are now one tiny, semi-active lesion.
Food is one of the few variables we actually have control of, so it's tempting to get super structured about it. I'm going to stay the course with a varied, healthy diet - except on nausea days, when I will eat applesauce till it comes out my ears, followed by Cheerios, if I can bear it.
I do avoid all dairy due to lactose-intolerance, and that fact that milk fat is estrogenic (cows are milked when pregnant here in the US, and even if they weren't, the milk fat is still full of bovine estrogen). I have ER/PR+ cancer, so it seems prudent to avoid dietary estrogen. It gets weirder - I go to a small, local butcher, and she sells me steer meat (most of beef is male - they save the girls for breeding, same with chickens). That way I can be sure that the meat I eat is humane, and free from added estrogens (feed lot cattle receive estrogen to encourage growth, and their feed is laced with antibiotics to prevent illness from confined, crappy, inhumane conditions).
I also avoid plastics in food prep. Most cans in the US are still lined with a BPA plastic liner so that the food doesn't develop a metallic taste. This plastic is estrogenic. Soda cans also have this liner. So, I avoid canned foods, foods stored in cling film, and foods sold in plastic containers. Yup, I'm that person. But, plastics are estrogenic, so prudence strikes again.
So, I do get weird about food, don't I? But to give up fruit would mean going up a food source that brings me great pleasure. Also, when you don't feel like making a proper meal, a piece of fruit plus some peanut butter is so satisfying.
Hoping everyone is having a fabulous day, full of good food and friends,
Jennifer
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hello Jennifer, thank you for sharing your protocol for avoiding estrogenic foods and reducing your exposure to the Frankenstein food culture that surrounds us, and congratulations on the great result of all your efforts. I envy your ability to still digest large quantities of fruits.
I second everything you've doing to minimize your exposure to estrogenic, dairy, and contaminated foods. In addition i distill my drinking and cooking water, and than I use a carbon filter to remove the chlorine the distillation process leaves behind. It's amazing how different my water looks and tastes after all of that. Of course I supplement with minerals to replace what's eliminated from the distillation process. Yep! I'm that kind of person too...:-))
But since I'm predaibetic, eating large quantities of fruits is out of the question. That's how I end up with an insulin resistant problem to start with. Unless a person has a very active lifestyle—two hours of bycice riding @ day and walking around Manhattan didn't make any difference in my case, plus diabetes runs in my family—two many carbs are nowa poison to the system.
If I had to guess, I would have to trace the beginning of my breast cancer to insulin resistance. I believe the two are somehow related
Enjoy your fruits Jennifer...you lucky you....
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On a different note....I had been feeling so miserable lately, between aches and pains, lethargy, nausea, high blood sugar levels,forgetfulness etc etc, i worried that my bone cancer was out of control...but in that case, I figured, since I'm progressing what's the point of still taking the tamoxifen and Afinitor?
Well....after a few days...My strength and mind clarity are back...I'm not winded from getting off the couch and I'm not sleeping all day long anymore....all those horrible symptoms had been caused by the meds!!!
That doesn't mean that my cancer is not progressing, but what I know is that it was not causing those dehabilitating symptoms....
Tomorrow I'm seeing my MO and will see what she decides to do, I'm hoping for a change in TX
If the half-life of tamoxifen is weeks, why do we have to take it everyday? Does anyone know?
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Miaomix, I read with interest your comments about prediabetes and cancer. I have found that when I am on, what I call anti-estrogen treatment, my blood sugar goes up. I go to traditional chemo and my blood sugar goes down! So I know there is a correlation. For me, fruit is good and full of fiber which removes estrogen. However, moderation is the key.
It is encouraging to hear everyone's experience and stories. Then I know it is not just in my head.....
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CelebrateLife, I’m experiencing the same with my own anti estrogenic TX. I have been unable to control my BSL using Metformin as I used to. High blood sugar levels are listed in the list of side effects of afinitor and I’m defently suffering from it. One more reason to change TX.
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Miaomix, I am on Januvia when my blood sugar goes up. I can not take metformin. Have you tried other diabetes type drugs? Maybe another one will work better.
Therese
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Therese, I would like to, but my primary physician relies on the A1c which is a very unreliable test when one's hemoglobin is low. I've tried to educate her, but she goes by the book and won't listen, and I fear other doctors will do the same. I'm grateful for the Metformin...
So according to the A1c I am not even prediabetic, which contrasts with my readings after two hours which I consider the only reliable way of knowing how the body is handling carbs.
My diet and the Metformin allowed me to manage them well, around 120 two hours after eating, now I have to eat no carbs whatsoever to get those numbers, because the medications bring the BSL way up before I even touch the food....I made an onion pie the other day and my BSL were over 200 very bad...
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Miao, the recipe sounds (and looks) amazing. Thank you! I can't wait to try it.
Blainejennifer, thanks for sharing the health steps you take to avoid estrogen and things we should avoid.
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