How are people with liver mets doing?
Comments
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Miaomix your cake looks delicious. Also not too complicated for an infrequent cook like me to make. I look forward to trying it
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Z— thinking of you today....may you experience a breakthrough from your TX!
Just left MSKCC and my new MO that I like very much. He has agreed that the SE are too many for a little cat to bear, and is willing to switch me to a different type of Fasldex, due to a mutation I have, or a clinical trial with Faslodex and a new medication that he feels is producing great results without many SE.
Now we are both waiting to see if the torture I went through last month affected my TM.....
JFL, — Liwi enjoy the cake....it's very simple to make and amazingly decadent. No sacrifices as far as texture and taste and only less than 20 grams of carbs....yeahhhh!
When I can, I will post my Masterpiece Theatre, a sugarless, flourless Apple cake that is so nutritious it’s a meal substitute, great for kids too! Lots of proteins and fibers and delicious
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Miaomix. That sounds like interesting news. remind me again what mutation you have? I didn't know there was a different kind of faslodex. Be cool, little cat.🐈
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Grannax, it's funny you should ask because I was thinking about you specifically on my way back home. We have the same ESR mutation that responds to Faslodex.
There are two other types of Faslodex apparently that come in a pill.
There's an ongoing clinical trial that uses one of these pills with another med that my new MO said is very effective with minor side effects.
He is leaning on Faslodex instead of Xeloda right now.
He will base his decision on the results of my blood work today, if there’s some dramatic changes he would want to keep me on the current treatment. But he knows that I would rather not remain on Afinitor based on the long list of SE I gave him.
He was very concerned about my dry cough....Sorry I can't be more specific. I will post again after I know what he decides and what the name of the drug might be.
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Thanks good info. I hope you SE are better on the different faslodex. No way I could come to New York for trial though. 💞
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when I was on the Faslodex shots I had zero problems, it was the best TX ever...itcut the TM radically before they started to slowly raise again...with Afinitor they have doubled and tripled...not good!
Sometimes these trials take place in various hospitals at the same time.
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Babs - It's better to try to gain weight by adding good fat to your diet. Get some really high quality whole wheat bread with lots of gnarly grains and seeds in it and dunk it in extra virgin olive oil. It's a treat you start craving ...
JFL - really interesting about how fructose is metabolized, and cure-ious fascinating comment on the relative importance of sugar to different cancer. I'll be reading up on that. Any references are of great interest.
At this point my thinking is that carbs are what you want to be eating ... complex carbs, good oils and a small amount of protein. Protein drives IGF-1 production among other things that drive cancer growth. Studies have generally shown higher rates of mortality from all causes, including cancer, on high protein diets. Not a fan of high protein diets. I've concluded you want your protein consumption at WHO guidelines or maybe a little less, which is something like 60 grams per day. That's 2.5 ounces of fish, if you get protein from no other source, like tofu, nuts and legumes.
However, there is a big difference between a chocolate chip cookie and Brussel Sprout and Broccoli stir fried in olive oil with a small amount of whole wheat pasta on the side. All those carbs in the stir fry meal are metabolized into glucose but slowly and while releasing a lot of nutrients. That is big piece of the difference.
>Z<
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Hi All - and thank you for all your messages and inquiries to how I am doing.
Sorry not to give an update before, I've just been feeling so very tired and nauseous (darn bilirubin). The stent went in successfully, but unfortunately hasn't controlled by bilirubin levels, I came down form 16.9 to 16.1 after about 4 days out of hospital. So now its on to one chemo my MO has identified I can have with such high levels. I've been having my 5 radiation sessions, with the last on Wed. Then its on to chemo Thursday. Sorry, I haven't got the name of the chemo to report. I will look at after Thursday when I have my fist dose. TBH - Right now, its all been too upsetting and I am not feeling up to finding all about it or how well it works because I just don't want to face the thought it it not working, then I dont have anything in reserve. Willing this to work. I'm taking two doses, three weeks apart, then we are going to assess if it has helped my liver.
Love to you all.
Sarah
x
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scwilly im so sad to hear that the stent isnt working. Sounds like you need to rest, we will hope the chemo will help.💞
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Miaomix,
Did your MO say what drug would be combined with Faslodex and were you only on Faslodex for one month? I’m interested in what the new combo would be?
JFL,
How are is your energy level and are you still on Doxil? Tomorrow is my Y90 procedure and I am slightly nervous, however, my closest friend came over and we had a long and lovely lunch, so good for the soul. This weekend my oldest will be in, so all will be around this weekend and we have family events planned.
Do you think a concert on Friday and a theater on Sunday will be too much; how was your energy for the first week?0 -
Sarah, keeping fingers crossed this chemo works magic in your liver.
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Ciao Otto—my MO did not specify the meds in question—yet. I will find out tomorrow what he plans to do, but since my TM have dropped by 25% I'm afraid he is going to keep me on this protocol till the next scan at the end of May...
I was on Faslodex and Ibrance for eight months before progressing. But my TM have doubled and tripled while on Tamox and Afinitor till now two months later....
I will update after I hear the latest tomorrow.
Good luck with your Y90 tomorrow
Sarah wishing you the best outcome
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max_otto - best wishes for a very successful Y90 tomorrow!!
Sorry I haven't updated in a while, but here goes what's going to be a long post. I went to see one of the most highly respected Breast Oncologists at NW's Prentice Wmn's Hospital last Tuesday. He had nothing, zip, nada to offer me. I felt like he felt like I was wasting his time, thus I thought I wasted my time. His thoughts on Y90 is that he usually recommends that for palliative reasons. So, since I still feel good, and my liver numbers still look good, I don't need Y90....yet???? I've failed every treatment since diagnosis in Jan '17, my TM's are over 1000, and the progression in my liver has been significant (I'm too afraid to ask what % is involved, but they say 'significant'). What? he wants me to wait until my QOL sux, and I have no energy for this, and may no longer be a candidate??When we left the meeting, he said 'you know where we live...next time you progress check with us about trials before moving on).
I talked to my IR and my MO. I started Opdivo last Thursday. We're going to go ahead with the Y90, but I'm going to wait until after my dd's 6th Bday and her 1st ballet recital (she's so excited!). Mapping planned for 5/21, with first lobe tentatively planned for 5/29. I'm sort of going to be my own test subject here. Since Opdivo can take up to 6 months or more to work, and you can get worse before you get better, we won't know if it's working for a while (which is scary). We are going to scan that first lobe about 30 days after the first treatment. If that lobe looks significantly better than the other, we will move forward with the 2nd lobe. If both lobe are looking good, then there's a sign the Opdivo may be working, and we'll hold off on treating the 2nd lobe. My prayers are that this works wonders...I need to catch a break. I'm still feeling pretty good, other than occasional fevers from the liver tumors. I had some heavy duty lower back pain one night, that actually required Norco for the first time in many many months. No pain since, though.
Spring has finally arrived in Chicago, and it was a beautiful day today. My whole family went to the Cubs game yesterday, and my dd and niece got to run the bases after the game (2nd time for each). It was a great day that I'll always cherish.
Wishing everyone the very best. Those in pain, may it subside soon. Those waiting for treatments—May it be the miracle you need. Those with great scans—keep them coming. I'm praying for all of you.
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>z< it is interesting your take on high protein diets. I am in my normal BMI but the 8 months before I was diagnosed with stage 4 breast cancer denovo, I was on the Dukan Diet. I wanted to loose a few pounds. The diet allowed you to eat as much protein (whole chicken if you wanted) and nothing else for five days (lost 8 pounds) then protein and veggies until you got where you wanted (Lost 18 pounds). It was a rather easy but unhealthy diet. I do have a horrendous family history of breast cancer (genetic testing negative) but always wonder if that unhealthy diet brought it on sooner....
KC1010 so glad Y90 is being offered! Thank goodness for different opinions. Makes you realize that most of us are at the mercy of your MO opinion/choice! Their preference is not always the best treatment
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Any one any hints what to eat with high bilirubin and feeling nauseous constantly. Eating basically vegetarian and not great portions. Brought up half my dinner tonight which was just mash pots, broccoli, and roast tomato and red pepper sauce. (All home made). I am finding citrus good, but need more for dinner that I can keep down. But getting stumped but I really want to keep my nutrition up. Am going to have some smoothies tomorrow with some vegan protein powder recommended by my primary care doc.
S
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Dear Scwilly,
Sorry about the problems that high bilirubin are creating. Hi bilirubin levels are related to gallbladder issues and problems absorbing fats. Therefore, reducing the ingestion of fats should be beneficial. However, a quick scan of your dinner indicates you were not eating a lot of fats last night. Therefore you need assistance with the assimilation of foods in general and fats in particular. But, please notice, I'm no expert on these matters, I will be sharing only what I have learned that is currently working for me.
My digestive system had been greatly impaired from the ingestion of cancer medications for the past three years. In my case, I had tremendous nausea, vomit, and diarrhea. I simply couldn't digest and assimilate foods anymore. If the stool floats, it's a sign of improper assimilation.
I went to see a gastroenterologist at MSKCC but got no help.
So what resolved all my digestive problems was supplementing with various digestive enzymes before eating any meal. Than I discovered a product that contained all those various ingredients in couple caps and now I rarely have nausea, (only after taking a med on an empty stomach) or gas, stomachaches, and diarrhea.
Before I eat ANY thing I take two Bio Gest capsules, a product made by Thorne. It contains all the digestive enzymes, hydrochloric acid, bile salts and pancreatic enzymes the body needs to assimilate food.
This is the description of the product: For individuals who need a more broad-spectrum digestive aid Thorne Research offers Bio-Gest. Bio-Gest contains HCl pepsin pancreatin and ox bile which are important for those who need support for protein and carbohydrate digestion and fat emulsification and absorption.* Hydrochloric acid secretion in the stomach does several positive things. It assists protein digestion by activating pepsinogen to pepsin it renders the stomach sterile against ingested pathogens it inhibits undesirable overgrowth in the small intestine and it encourages the flow of bile and pancreatic enzymes.* Hydrochloric acid also facilitates the absorption of a number of nutrients including folate vitamin B12 ascorbic acid beta-carotene iron and some forms of calcium magnesium and zinc.* Numerous studies have shown hydrochloric acid secretion in the stomach declines with advancing age. Overuse of antacids can also lead to low levels of hydrochloric acid in the stomach which can result in poor protein digestion.
bile is what the gallbladder produces to digest fats. In my humble opinion, a low-fat diet and digestive aids are what could be of benefit to you.
I wish you well
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I got my treatment plan for these liver mets yesterday. They are definitely breast cancer mets, but have morphed into high grade neuroendocrine tumors, tiny but numerous. All of my blood work and TMs are fine. Previous small tumors are stable. No enlargement of the liver as yet. This week, I'm going to have a port put in and starting next week, I will begin infusions of Carboplatin and Etoposide which is the standard front-line treatment for these types of tumors. I will have infusions for three days in a row, followed by a shot to boost white blood cells, and my MO recommended 5 days of Claritin after that. I forget why. After the three days of infusion, I will have a three week break, then do it all again two more times. My MO, who I like and trust, presented my biopsy results to a group at MD Anderson (where he practices and I'm a patient). And he is confirming that these tumors are ER/PR+ HER2- like my primaries are/were. He did say that this is a very effective route to take, but that they see a lot of rapid recurrence in some cases. My immediate goal is to stay ahead of SEs, which I managed to do well with my initial AC IV chemo. Wish me luck, onward through the fog!
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This recipe is for those of us that need a treat once in a while, without damaging our already precarious health with high corn-syrupy concoctions and the empty calories of the Frankenstein ingredients that our culture is well known for and that cancer cells in the liver love to feast on. No cravings or overeating guaranteed!
Low-carb doesn't have to mean high protein (proteins turn into sugars as well) only good fats and fiber (as Z wisely counsels with her complex carbs recommendations are safe) For me it means the best, nutritious, wholesome ingredients and spices that are known to be very good for us as they are anti-inflammatory and nutritious withoutraising insulin or sugar levels. Enjoy in good health!
BTW, when I asked my Mo yesterday if there was a correlation between diabetes and cancer he said no. None had been found. In that case, he said, everyone with diabetes would have cancer and that is not the case. However, for those of us with an insulin problem, feeding diabetes while fighting cancer couldn't be a good thing.
Miaomix Alternative Apple Cake Paradigm.
Ingredients for 8 portions
6 large organic eggs
250 g of organic ricotta cheese or sour cream from NON-rbST cows
(substitute with coconut oil or your favorite fat-it works well regardless)
4 organic unpeeled and well-scrubbed green apples
1 lemon juice and rind
I cup almond flour
I.5 teaspoon pure stevia
2 teaspoons baking soda
3 teaspoons cinnamon
1 tablespoon organic raisins
a pinch of sea salt
2 teaspoons pure vanilla extract
2 tablespoons of flax meal
3 tablespoons chia seeds
I small 72% chocolate bar cut into small pieces (optional)
1 tablespoon softened butter for the pan
Directions
Preheat the oven 350 degrees.
Butter up 9" spring-form cake pan or pyrex
In a large bowl, beat the eggs the vanilla extract, the stevia, and chosen fat, add chia, flax meal, chocolate pieces and raisins.
In another bowl cut the unpeeled and scrubbed apples into thin slices or chunks depending on your preference, add the lemon peel and juice, a pinch of salt mix together and add to the egg mix.
Add the almond flour, baking powder, and cinnamon and mix thoroughly.
Pour into the baking pan
Bake for 45/to 60 minutes or until thoroughly cooked, let it cool.
Serve with a dollop of sour cream and mixed berries (optional)
Nutritional Info
• Servings Per Recipe: 8
• Amount Per Serving
• Calories: 272.2
• Total Fat: 16.8 g
• Cholesterol: 134.3 mg
• Sodium: 80.3 mg
• Total Carbs: 22.4 g
• Dietary Fiber: 6.4 g
• Protein: 11.9 g
Nutrition info is incorrect, lacks the fiber and omega3 from the chia seeds and the addition of a small chocolate bar I added later. My recipes keep on evolving...
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I'm sorry to read about your progression KattySmith, I do wish you and the rest of us great luck with all the various treatments we are offered!
You might experience a prompt and good response from the protocol.
We seem to respond in different ways to the same TX.
KC1010-- I'm glad you got your MO and RO to agree on providing the Y90 procedure you need! Good luck with it! And enjoy the game...
Just heard back from MO, he is keeping me on the current TX while he looks for a clinical trial that involves a Faslodex pill with another med, that I might qualify for. There might be slots available, or not...TBD
Once I know, I'll post more info....
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max otto Today is the day to blast those liver mets. I hope it works as well as it did for me.
KC 1010 What a discouraging MO appt!! But, you dont sound discouraged. You got your own plan going, you go girl. You know I'm a fan of y90, because it worked for me. The only thing that concerns me a little is that I was told that scans of liver after y90 may not show response for several months. but your IR is the boss, so maybe he's seen it show up sooner. I sure hope so because waiting is the pits.
Have fun at your dd birthday party and ballet recital. I remember my granddaughter first ballet. It was so adorable. Now shes eleven and into hip hop, I liked ballet better.💞
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Miaomix, I have kind of made a thing lately of trying out healthier cake recipes like this. I am about to tackle one that is mostly grated parsnips, carrots, and beets, with dried apricots, walnuts, honey, yogurt, spelt flour and NO sugar. Cannot wait to see how that goes!
One question: your recipe is the first I've ever seen that combines apples with chocolate. Well, wait, I've seen a candy apple covered in chocolate. So there's that.
Anyway. Do you make it with or without the chocolate? I cannot imagine it.
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Miao, the apple cake looks absolutely heavenly! I want some right now. I will probably try it with the chocolate - I used to buy a 90% dark chocolate bar (with a bit of sugar) that tastes excellent but have now moved on to stevia sweetened dark chocolate that is 72% or so chocolate.
Otto, I hope Y90 went well today!
KC, like Grannax my IR told me it can take a while for results to show up on scans and he doesn't like to scan anyone sooner than 3 months. He said full results may not show until 5 or 6 months. However, you are in top notch hands with your IR so he must have good reason. I am very interested to hear how the Opdivo combined with Y90 goes. I sat next to a guy my age for a few hours during chemo a while back with melanoma who had been on Opdivo for years. It had been keeping him alive for 6 or 7 years (which used to be unheard of for melanoma) but he did have to manage a lot of side effects from it on a regular basis - issues with the overly reactive immune system attacking healthy tissues. Everyone's immune system reacts differently though and I think a lot of it has been a function of his super long-term use. I am very interested in taking Opdivo or Keytruda in some combination at some point.
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Scwilly and Miomix - I’ve also found digestive enzymes to be really helpful for a variety of digestion problems ranging from acid reflux to constipation. I’ve been using a formula from designs for health but the thorne product looks interesting so I may try it.
KC - I’m glad you’re able to proceed with the Y90. That is still on my list of something I want to pursue thoughmy onc also wasn’t very supportive of the idea. She said that only is used when needed for pain control or if you have three or less lesions.
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Lulubee—your combination of ingredients sounds really good! We're on the same road: trying to satisfy our needs without having to compromise our precarious health. Regarding your question about the wisdom of mixing Apples and chocolate, the reason it works is because there are so many nuts and seeds involved in the mix, and as you know, they LOVE the company of chocolate. This cake is a symphony of flavors and nutritionally a complete meal in itself. It's satisfying to the body and soul
JFL enjoy in good health.
Here's some staggering facts and statistics regarding the relationship between cancer and malnutrition. According to the oncology nurse http://www.theoncologynurse.com/ton-issue-archive/2013-issues/october-vol-6-no-9/16012-malnutrition-in-patients-with-cancer-an-often-overlooked-and-undertreated-problem
Patients with cancer face many challenges, including eating well to maintain a good nutritional status and avoid weight loss and malnutrition. Research shows that the majority of patients with cancer suffer from nutritional deficits, and up to 85% of patients with certain cancer types experience some form of weight loss and/or malnutrition during their cancer treatment.1 For some patients, the nutritional deficits can progress to cancer cachexia, a specific form of malnutrition characterized by loss of lean body mass, muscle wasting, and impaired immune, physical, and mental function.2 Poor nutritional status and weight loss can lead to poor outcomes for patients, including decreased quality of life, decreased functional status, increased complication rates, and treatment disruptions.1,3,4 Fortunately, early nutrition intervention can improve patients' nutritional status and help patients to maintain body weight, maintain lean body mass, better tolerate treatment, and improve quality of life.3,5-8 Therefore, all healthcare professionals who care for patients with cancer need to recognize the signs of malnutrition and provide early and effective nutrition intervention to improve outcomes.
The incidence of malnutrition and weight loss in people with cancer ranges from 31% to 87%. Patients with cancer of the lung, esophagus, stomach, colon, rectum, liver, and pancreas are at greatest risk. ... Furthermore, up to 20% of patients die from the effects of malnutrition rather than from the cancer itself. ( I believe the rate to be much higher, they are in denial because they don't have solutions. If I hadn't resolved my own digestive system collapse I would be nutritionally deficient, add to that a supppressed immune system and the results could be a fatal emergency room visit)
I've had to fight cachexia twice since diagnosis and at some point dropped more than forty pound. As you all know it's very difficult to resolve it by eating food when food is what the body rejects. By using sound nutrition which precludes overeating, both paradigms can be satisfied, as it has been well documented by Zarovka's research, that reducing food intake and starving the cancer can also be beneficial at times, especially if too much of the processed and high fructose typehad been consumed.
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liwi. That's simply not true. I had my y90 within about four months of DX and TX. I had no pain before I had it, I had eight tumors plus mets in chest and lung. Maybe your MO just doesn't know an IR that specializes in y90. You'll have to self advocate and research a good IR, make an appointment for consultation and go from there.
I hope you can find one that's close to you.💞
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liwi,
Another confirmation, I’ve had no pain, stable lung mets and numerous liver mets.
My Y90 procedure went well and I’ll know in time. Have an MRI available and seek out an experienced IR, preferably at a NCI center or teaching hospital.
Grannax, overjoyed you are doing so well.0 -
liwi that makes makes me also so mad. Not only it's innacurate it's absurd. Definitely you should try to get to a Intervention radiologist that has experience with this. It's actually not used for just 2/3 lesions, they don't like to redo it, so they want to use it when there is much to attack. Read up on dr google, and listen to the ladies here. My DD did not have pain at the time Y90 was done and her liver was quite saturated.
Z how are you coming along?
Miao repatha - amaryl- my hubby has this cocktail. He's pre diabetic, just beng watched due to health reasons.
hello to all!
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Scwilly - The unnamed chemo bomb identified by your clever onc is going to work.Go for it.Rooting for you.So grateful for the update. Keep your eye on the horizon. There is no recipe here, so we bumble through treatments until one sticks.
Max - Expecting good news from your Y90 procedure …
KC - I have had some really bad interactions with big name oncs myself, don't let it get to you.I think your assessment is dead on … ignore him.Move on.Some people simply have no tools in their tool box that fit your case. Some oncs just don't belong in a treatment room with a patient. Could be eithr.
I think your plan with Opdivo and Y90 is great and you will get a great result.Thanks for posting! Let us know what happens.We are thinking of you.
Katysmith - we haven't met.Welcome. The upside is that highly aggressive tumors are highly responsive to chemo.
Miaomix - Very interesting point on diabetes and cancer.Need to think about that. Awesome recipe.
On the malnutrition thing … yeah. And I am not sure it is just the chemo, or nausea making you not eat that drives the malnutrition. I've never had nausea as a symptom so far. Nonetheless, I could feel the lack of nutrition as my liver function dropped. I was eating but not digesting food. In addition there was some kind of break down of my digestive tract going on... inflammation? The feeling of eating and not getting food is part of what drove me to make sure I max out nutritional content with every bite of food.
Oddly, the fasting seemed to help. Somehow reducing inflammation in the digestive tract? Bowel rest? I dunno, but after 6 weeks of diligent eating including 3 shorts fasts, and a course of Abraxane to beat back the liver mets, my digestive system is working. It is really noticeable. One could point to the Abraxane alone, but chemo can make the situation worse. In my case I am doing a lot better on the eating/nutrition/digestion front while on chemo.
MomATT and all, thank you for thinking of me. I am at Mayo trying to figure stuff out. No appointment with brain surgeon, yet, but apparently I can sit in the lobby and wait for someone to miss an appointment. So flying standby on the brain surgeon.
Bilirubin now normal after 3 Abraxane infusions, other liver markers ambiguous. TMs are taking DAYS to come back at the new lab I am using. More later when I have some answers.
>Z<
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Z- I'm praying for you and have very high hopes brain mets will be just a false alarm ❤️
JFL- Thank you for your reply regarding the Y90 and I'm hoping you get those radhes under control soon .. I left some tips under the Doxil thread ❤️
Looks like I'll be off the Doxil soon .. didn't work apparently.. my latest scans showed some progression in liver and new bone lesions..I had high hopes that would be my ticket .. oh well 😔 Not sure what to do next .. MO is suggesting Abemaciclib by itself or in combination with Faslodex or Afinitor but from skimming through your posts that doesn't seem to be a very successful option.. any thoughts?? I have failed Ibrance and letrazole early on so not sure about an AI at this point?
Halaven is also on the table
She also said she’s open to clinical trials but there’s nothing in the Atlanta area where I live .. any suggestions??
I also suggested the Y90 but she literally laughed it off .. very frustrating!!
Please continue to share your experience and advice.. I need every little help.. we all do ❤️🙏🏻
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Zar anxiously waiting with you about your next step. That is a big trip you made. It's so interesting how you could feel your liver working or not, Dani was so frustrated that she would eat and not gain weight, and for sure she did not have the best nutrition. But the doctors and nurses were harassing her about it, and she was very upset that they did not believe that she was eating. Let's see what they tell you about the brain
Nouzay from what I know Faslodex is recommended for when letrozole does not work or vice versa, actually we were told that after a break of the hormonals one could try it again. Re: they Y90 again, these Oncos that say that are scared or inexperienced, we cannot tell you that it works for sure, everyone is different, but Y90 is definitely something to be explored.
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