How are people with liver mets doing?
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Ladies, I am happy to announce that I'm back where I should have been for the last two years. My new MO and cancer center were a breath of fresh air for me. Why oh why did I wait so long?
She was so impressed with my historian abilities to verbally rattle off my 27 year history of BC and MBC. She said it saved her so much time. She was impressed with me, I with her.
So, my PET is on April 8, appt with her April 11. I was a little disappointed in how long I have to wait for my PET. But, at least I will be able to see it on my portal.
She said she thinks X will be a good TX for me. Awesome that would be wonderful. But, she's very glad I've had a wash out time and she is going to check on clinical trials for me. I really like this idea. She's also doing another Genomic Test on my December 27 liver BX. They use Tempest. Never heard of it. She's also going to do a tumor marker CA15-3. I just saw the result on portal, normal. Tumor markers have never correlated with my disease. She's ordered generic testing, our family has done it but it was twenty years ago. Negative for Braca 1 and 2. We obviously have a mutated gene running in my mother's side of our family but to my knowledge they have not isolate it yet. My grandmother, my mother, me and my sister. My daughter goes to the same cancer center. They monitor her with mammograms and breast MRI each year. She's 47, no problems. I was 44 at first DX.
I am so relieved to be back in good hands. PTL. 💞
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I am very interested in this conversation. My spouse had done a keto diet for almost twenty years. He's very disciplined, and never cheated. Two years ago, he started getting very fatigued, went for a blood test, and had all the symptoms of Pernicious Anemia. His doctor put him on B12 supplements - he was already taking them, but now would double the dose. The doc also said that while the keto diet didn't bother him, he was seeing patients have those same symptoms when they had been eating low carb for a long time. Not everyone, and not all the time.
The dietary changes (he eats more berries now, and the occasional carb vegetable) have fixed him up. He still won't touch grains.
Good study of the effects of ketosis in mouse populations that have been "seeded" with cancers:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32676...
The one study I can find that is against Keto and low carb:
https://www.tandfonline.com/doi/full/10.4161/cc.9....
My brain is full now.
Jennifer
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Oh Grannax, I am so happy for you...Although you had to experience such a horrible time with your previous MO, I know you must have affected her in profound ways. Even if you didn’t feel it, you probably help change the way she treated others. There is a reason for all things. Keep up the good fight.
Ladies, I am still shell shocked, I abandoned my diet, running and weight training upon dx of mets but now that I know we actually have “time”, I plan on getting healthy again, hmmm, healthy? Interesting I choose that word; other than this pesky dx I am healthy, “strong like bull” they use to say when I was younger. Your diet conversation inspires me.
Have a great afternoon all.
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Kayla, I just wanted to give you support. I was diagnosed with liver mets Oct 2016. After AC chemo, started Ibrance and Letrozole, which I am starting month 28th, cycle 30.
Fatigue is a given, but I live a fairly normal life. My MO keeps encouraging me to start interval running (walk/jog) as I use to be a runner. I continue to work out, but pace myself. I also work part- time. My DH and I camped for 3 months this summer (in between scans) all over the US. I even snow skiied on baby slopes this winter. More like snowplowed..
So please don't give up on enjoying your life.
Grannax2..happy that you finally got the professional treatment you deserve. You will be a star Xeloda patient.
And one last comment about keto diet and I will stop..promise! Wouldn't it be nice to know in the future if ketosis metabolism is helpful or harmful for those with liver mets, as the liver plays a crucial role in this metabolism.
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SandiBeach - I soak up all the support I can get
. I started Ibrance/Letrozole in November my scan a couple of weeks ago, showed my largest tumour doubled in size, and the smaller ones grew exponentially, The kicker is, tumours not showing in December are now as big as the smaller ones. I am off Ibrance and awaiting word from the hospital pharmacist to start Xeloda, hopefully soon. I will go to that thread and prepare for those side effects, I had only fatigue on I/L. I never did ski, but love mountain biking, may need to do that instead of running this year, if hand/foot syndrome sets in.0 -
Hi Kalya - Just reading your current post and "signature"... not sure if you already mentioned this or if it is helpful.... but have you had a biopsy to confirm pathology? I ask because my breast tumor was 99% ER+ but my liver mets developed while I was on Ibrance. Turns out they were triple negative, so that's why it wasn't working. Anyway, I just throw that out there in case it's helpful to you. If not, please disregard
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Thanks for the links Blainejenni - both good reads
There is so much info out there and I really believe the big pharma, sugar and wheat/carb industries don’t want to hear positive stories about Keto, so most of it is anecdotal or a few experimental mouse reports. Reddit has a large community support, and a few on twitter - many others trying to cash in on the diet.
Meanwhile I am so thankful for the scientific advances in the treatment of BC, but I will continue to use Keto as an adjunct for QOL. I might start a Keto thread if there isn’t one already,
Cheers,
Jackie
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SandiBeach, I am skeptical about the ketogenic diet's benefit in cancer. I started looking into keto diets when I heard they helped cancer figuring I needed to go keto but quickly became freaked out reading a few articles stating that the cancer cells feed off ketones and that ketosis drives aggressive cancer growth. Beyond efficacy, our bodies are not meant to convert fat to sugar for ordinary course consumption on a regular basis and the process is very hard on the body. With our bodies (or at least my body!) stretched too thin as it is, being on treatment for so many years, I don't want to tax my body further. Something has got to give and our livers have less healthy functioning cells. When the breast cancer cells bump up against liver cells in the liver, normal cell instructions tell the liver cell to die to make room for the abutting cell. Breast cancer cells do not get that same message and eventually take over shop. If the body is constantly busy converting fat to sugar, will it have reserves left over to fight the cancer?
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Hi JFL, don’t know what you have read, but just to let you know, (you could read blainekenni’s links) fat turns to ketones, not sugar, which actually takes the stress off the liver.
In ketosis, the body can convert protein to sugar if needed but functions very efficiently on ketones
Ketosis reduces inflammation reducing stress on the body.
Cancer cells cannot use ketones.
There is a lot of misinformation out there, but also plenty of reputable research studies.
Cheers,
Jackie
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Kayla..are you a candidate for the Y90 procedure? There is a topic specifically for interventional radiology procedures. A few BCO members have has had success with controlling liver tumors with this procedure..Grannax2, JFL. It doesn't stop new tumors from appearing, but does kill active ones. Did I get that right Y90 veterans?
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Yep, Sandibeach, you got it. At least that's how I understand it. In fact, I hope to have another y90 for my new liver mets, ones that could not be seen with my first procedures two years ago. My new MO and I didn't talk about that possibility yet. I guess at my next appointment, after my PET, it might come up. I did tell her that my first liver mets did not respond to IL, just to y90. I guess it will depend on whether she puts me on X or a clinical trial.
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Good morning, it still is here on the west coast
SandiBeach-I had originally been told that even a biopsy could not be done, too close to heptic vein. This last appointment, I asked about the option of a biopsy, and yes but as we discussed it, it became very clear that it would need to be done prior to starting second line (Xeloda) and that would delay starting to May. As the rate of growth is shocking to me, I didn’t want to wait. I still don’t think y90 is available here. I will ask when i get Rx filled but I would assume it would have mentioned by now. I am hoping X will do the trick and stop progression and I will more comfortable asking about other treatments.
WIshing you all a great rest of the day
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After being on A/A for just one month, we find that my fiancé is not responding to this set of meds. We are on the 21 day wash-out period before starting on the Alisertib trial. She has a lot of pain on the left lobe of the liver which we assume comes from the lesions. We wondered if any of you had experience and success managing this type of pain while awaiting the next treatment to begin. Thanks in advance!
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bornfighter- how do you know that AA isn’t working after onlyone month? Scans?
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Bornfighter-my largest tumour is at the top of 4a segment of liver...it is hitting the diaphragm, easily seen on CT and I experience pain that can get unbearable at times. I have an at home breakthrough pain management process that an er doc gave my pcp, it involves pain meds and rx anti-inflammatory. If this process doesn’t relieve the pain I’m to go to the er for IV pain meds (I haven’t been to ER since January). Also, because I get nauseous too I have rx for an acid reducer and use peptobismol. Relaxation techniques and rest. Hopefully that helps you. I am awaiting a new protocol (Xedola) to start April 10th and hoping it stops the progression I’m experiencing as the tumour seems to be stretching the capsule and hitting the diaphragm more and more these days
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Good question. Liver pain has gone up significantly after we started on A/A. Cancer markers went up from 60s to 400s. We will have a CT scan just prior to starting on the trial. We will have a confirmation from the scan next week. We declined a scan to confirm the failure of A/A to reduce radiation exposure. We have to have a CT for starting the trial anyways.
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Thank you Kayla250
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Nkb,
Good question. Liver pain has gone up significantly after we started on A/A. Cancer markers went up from 60s to 400s. We will have a CT scan just prior to starting on the trial. We will have a confirmation from the scan next week. We declined a scan to confirm the failure of A/A to reduce radiation exposure. We have to have a CT for starting the trial anyways. IF the CT scan shows the extremely unlikely scenario that A/A was working and the pain is from something else, we will resume A/A. We will be sure to post such scenario if it happens
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Hi Kanga-Roo, thanks for your response. Below are a few of the articles I have come across regarding ketones potentially fueling breast cancer growth, or, the cancer cells adapting to alternative metabolic pathways when metabolism of sugar via glycolisis is unavailable. The general theory is that the relationship is not as simple as cancer cells feed off of sugar via glycolysis but do not feed off of non-glycolytic fuels, such as ketones and fatty acids. Certain cancer cells may be unable to metabolize ketones where others are not, in the universe of the diverse, heterogenetic tumor. Additionally, when deprived of sugar, cancer cells may effect changes in nearby cells in the tumor microenvironment that then essentially undergo reprogramming to develop alternate metabolic pathways that fuel the tumor cells via full oxidative processes as required with ketones and fatty acids rather than glycolysis (reverse Warburg effect). Certainly the jury is still out but the initial, early stage findings at the cellular and metabolic level in these studies are enough to spook me. To each his/her own and I do acknowledge that the mainstream medical opinion is that a ketogenic diet may improve breast cancer outcomes.
I am not opposed to ketogenic diets and in fact, spent many years in my 20s eating a strict ketogenic diet. In law school, I found that nothing worked to lose weight except a keto diet. However, I also spent the balance of the 5 years before I was diagnosed eating a keto diet and it didn't seem to work out for me too well!
Ketone body utilization drives tumor growth and metastasis
Ketones and lactate increase cancer cell "stemness," driving recurrence, metastasis and poor clinical outcome in breast canceKetones and lactate "fuel" tumor growth and metastasis
Understanding the "lethal" drivers of tumor-stroma co-evolution
The reverse Warburg effect is likely to be an Achilles' heel of cancer that can be exploited for cancer therapy
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Sandibeach, yes, you are spot on with your summary of Y90 as not preventing new tumors but does treat existing tumors!
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Thanks for the links JFL, some good reads. I know for example that Keto is dangerous for those with melanomas. It will be good when there are some human longitudinal studies that provide us with more info. I don’t know if Keto will help my cancer, but it has improved my QOL. It’s not for everyone, and I like you have tried several diets, but none has lowered my sugar, cholesterol and blood pressure like this.
I don’t know how long I’ll last on it, I’m a natural sweet tooth, and find birthday cake and chocolate biscuits hard to resist, and Easter with hot cross buns and eggs will be challenging!....
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JFL,
I was on a Keto diet for two years, and only stopped when I was diagnosed Stage 4. Like you, I take the Keto publicity with a huge grain of salt. I do think it is important to eat a diet that prevents insulin spiking, because wacky blood sugar does seem to have cancer implications.
When I was diagnosed stage 4, I thought it was because I was eating a lot of full fat dairy, and the fat is where the estrogens are. The meat I was eating was organic, pasture fed stuff, and as lean as possible.
If you read the available literature on estrogen in full and low fat dairy products, there's a lot of twaddle about how there's not much, that the human body produces more in your very own adipose tissue, but it is soooo nutritious, etc. What the general public fails to understand is that those of us with hormone sensitive cancers want to reduce our exposure to estrogens as much as possible, and that we aren't "normal" members of the population.
Rant over.
Jennifer
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Kanga Roo, you can add jelly beans for me!
I spoke with my MO yesterday about this ketosis diet as I was curious to try it, but frightened I would awaken micromets in my liver.
My MO could only tell me that (1) she was not familiar with keto diet (2) my liver was functioning fine..which I assumed meant my liver could handle either glycolysis or ketosis and 3) she was supportive of a low carb diet for me to help with inflammation, fatigue and overall better mental clarity. When I meet with my MO next month, I will report if my QOL improved on 50-100 net carbs/day with no ketosis.
So I guess with any diet change, proceed with caution and listen to your body.
I will have my Bone and CT scans in April..now every 6 months and alternate the liver MRI every 6 months. So every 3 months, I have some type of scan. I have never had PET scan. At this point, "no evidence of active disease" or NEAD. My monthly labs show liver enzymes normal and Ca 15.3 stable at 40..which fluctuates between 37 and 48 over the past 2+ years.
Now off to the beach I go.
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Hi Grannex - thought u may be interested to know Mayo Clinic does the Tempus testing too. Glad u found a doctor that will fight for u!
Hi Bornfighter - sounds like you are starting the Alisertib/Fulvestrant trial. Are u at Mayo Clinic or one of the other sites? Alisertib alone put the stop on my cancer for six months and now with progression added Fulvestrant. There is a thread for this clinical trial so please join us and keep us updated - if u want.
Best to everyone
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Hi Ann1999,
We will also be at Mayo and we think it is Alisertib/Faslodex. We will know next week for sure. Will join the thread for alisertib. Thanks for the info.
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Grannax, I am thrilled for you! April 8 will be here before you know it!
Katty
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How did those that took Taxol for the liver mets respond?
I read some have a couple spots but mine are speckled throughout the lobes with a larger 1.2xm. Wonder why some are so different...
Would love to hear any experiences!
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Good morning friends. Question for those of you with taxol experience. I had my port out in Thursday and my first taxol treatment the same day. I was given premeds of steroids (which I hate) and Benadryl. Friday the day after treatment I started experiencing flushing on my neck and chest. Today (Saturday) it’s also on my arms. Will this settler down the longer I’m on treatment? This is from Taxol right not the steroids? Thanks for your help. Oh and no fever
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rtchicago. I have not taken taxol but I have had a similar reaction to steroids. When I took Taxotere they gave me big dose of steroids as premed. My whole entire body turned bright red! Seriously, my MO took one look at me and reduced the dose immediately. This was many years ago and I don't remember the dosage they started me out on. I'm sure your MO will reduce the steroids before your next infusion. Take pics and call her. From my experience I now put high dose steroids as an allergy.
I'm still playing the waiting game, PET on April 8. I do have a portal now so I was able to see my Monday labs on Tuesday. I had some very odd values on a few things. My blood sugar was only 50, unheard of for me. My potassium was 3.2 (bottom of normal is 3.6) this hasn't happened in years. Also my hgb, hct and rbc were all low. Odd since I'm not on any treatment and haven't been for a month. So I messaged my new MO about what she wanted to do about these issues. Her nurse messaged me back and said your labs have all been sent to your PCP. In other words, my new MO does not mess with anything that my PCP can, and has, treated me for all of these problems in the past. Okay, problem solved, right? Wrong! Fast forward through many messages all week long. My PCP did reduce one of my diabetes meds, but nothing about my low potassium. The problem turned out to be that my PCP never got my labs!!! She is at a different hospital and is not in the same system as my MO. Also, there are some big changes going on in the medical field causing her not to get FAX in a timely manner, something about coding. So, unbeknownst to me, my messages to her on my portal was her only way to get my lab values.
She called me herself last night after I wrote a message expressing my frustration on how all this was handled. Especially, the potassium. I'm sure you know how dangerous low potassium can be and it has very tight parameters. A little bit low or a little high and it can be deadly. I told her I thought the MO nurse should have called my PCP when she saw that low level, not just FAX. My PCP tried to explain all the problems going on with their FAX issues and urged me not to get discouraged with my new MO.
I got my potassium, finally, last night and I will have a recheck next week. There's no telling how low it went from Monday to Friday. I had no energy yesterday and have been fighting a cold all week. A day in the life, right? Our medical system needs some work.
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Sorry about what has happened. I know what you are talking about. The Dallas area system has gotten worse and worse in the past few years with all the medical changes in policies and stuff. It gets frustrating easily!
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