How are people with liver mets doing?
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dee, just fyi, I think the BC hereditary cancer program offers a different thing that Foundation. The hereditary one tests your genes whereas Foundation/Caris/Tempus etc test the genomic makeup of the tumor, not the patient. I'll be curious to know what test they offer you. I had it done in 2018 & mine was sent to Color genomics in the US for testing.
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thanks for the info Moth, I think I was aware of that as I'm pretty sure my MO explained the difference to me, but honestly, I can think of better things to spend $5,000 on than testing the genomic makeup of my tumour rather than my genetic makeup. I will let you know when it comes back, I sent it off the day it arrived. It went down to the US but I can't remember which facility atm.
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It's so inspiring that AlabamaDee still has hope. I miss her on this board.
Moth, Definitely worth giving Trodelvy a longer chance to work. The CBR (stable or shrinking tumors) was 55%. I usually look at the CBR because I'm happy with things just being stable.
Hugs, Susan
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Nicole, Thanks for sharing Alabama Dee's message with us. I'm sad that she had “the talk“ with her MO, but I love her attitude about living each and every day and enjoying her family as long as she can. I hope palliative care can relieve her pain.
Sadie's Servant, Glad to read your liver biopsy went ok. Now you just need the results and a plan of action that'll knock the mets into another universe. Wishing you all the best!
Moth, I meant to respond about your not great scans but I don't think I did. I too hope giving the drug some more time will give better results. Susan's stat of 55% achieving stable or shrinking sounds pretty promising to me. Maybe I misstated that, I know using terms correctly matters. Pulling for Trodelvy to do its work. 💪
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We all miss AlabamaDee:/ Hope one day she comes back here with her optimism and advocacy, which helped us all so much. Saulius
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Does anyone know if there is a brain met thread in stage 4? I did a search but didn't find anything... I have been having a pain for 2 days (I have not taken anything for it yet but will now today) its towards the back of my right temple if I press on it it does hurt as well ...I am concerned its brain or skull mets...
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nicole, I hope it's nothing. The brain mets thread is here https://community.breastcancer.org/forum/8/topics/...
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Sorry to hear you are having pain Nicole but, to hopefully put your mind at ease, I think typically brain mets present with neurological symptoms like headaches, loss of balance and numbness. I have skull mets which have caused few symptoms. I did have some issues with facial numbness develop. We took a wait and see approach which lasted for about a year until I suddenly developed severe, constant headaches. After five rounds of radiation the headaches resolved. I’ve had the skull mets for about three years (could be longer - it’s not common so they don’t typically scan for them) and no sign of brain mets as they are quite different beasts.
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SS Thanks...what were the skull mets symptoms early on just numbness in your face? I have a pain on the edge of my right temple.. and I finally took motrin...and it is doing nothing which is really making me believe it something like mets bc I read that when its a tumor pain meds will do nothing... : (
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Sorry Nicole,
It's hard to track the threads with all the changes to the forum. Yes, just numbness with my skull mets. No pain until they got large enough to cause brain inflammation which led to the headaches.
The type of pain you are describing is unlikely to be eased by Motrin as that's an anti inflammatory. I'm not sure where you heard that pain meds don't help with the pain with bone mets as that's certainly not been my experience. I take Tylenol and Tramacet on a regular basis to deal with pain from my numerous bone mets and it's typically very helpful. The issue generally arises with neurological pain as normal analgesics won’t work. I’m facing that issue at the moment as I’ve developed severe pain in my right shoulder, running down my arm. We suspect there is a tumour in or near the brachial plexus - waiting for an MRI to confirm. My MO prescribed a strong opioid as none of my regular pain meds would touch it. Even that is only taking off the top layer of the pain (and causing a lot of nasty side effects, I’m a bloody mess right now!). I probably need to combine drugs.
The location of your pain would also be a very unusual place to have skull mets. Mine are at the base of my skull near the spine and on the occipital bone. Think in terms of how the cancer spreads, through the blood stream and lymphatic system. The cancer would deposit itself in other bones before it reached the temple.
I know how worrying every new pain can be. Hopefully you can get confirmation soon that it’s unrelated to the cancer.
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Thanks SS
. When I said pain meds don't help...what I mean was someone told me they heard from the MO that when its an actual BRAIN TUMOR ...and you have pain from the tumor (not necessarily skull mets) that things like motrin and such do not usually bring relief. Sorry I should have explained that better.0 -
That makes more sense Nicole. It took steroids to get rid of my massive headaches when the mets at the base of my skull were causing problems.
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I am going to cross post this in TNBC thread and the Jane thread (I think we have one or it might be the Fenben thread) anyway is anyone doing the Keto diet and seeing any positive results (cancer wise) not with regards to weight? I ask bc I have been looking into that and the Carnivore diet...my concern is the blocking the Fatty Acid pathway...This Dr. in the video explains the metobolic side of cancer and its very very good. https://www.youtube.com/watch?v=06e-PwhmSq8&t=2336s
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Hi Nicole,
I was diagnosed with BC to the liver back in 2018. I read a book that changed my life and have been on keto ever since. My oncologist is amazed how healthy I am. My last cancer markers were 19 which I’m pretty happy with. Here is the cover of the book. Happy to answer any questions you might have. I actually started a keto diet thread a few years back on this site, but can’t seem to find it with this new format,
Cheers, Jackie.
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Nicole,
I went on the Keto diet while I was on Piqray. Piqray causes high blood sugar and diabetes-like symptoms. It worked amazingly and my blood sugar came back to normal. My cholesterol came down a lot which surprised me since I was eating a lot of meat and fat. My tumors shrank, but I progressed after 8 months.
I can no longer be on a Keto diet because it causes you to lose weight, even with a high caloric intake. You probably shouldn't do it either since you are also underweight.
Hugs, Susan
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Kanga roo that's amazing to read. Are you strictly following keto died ? How are your cholesterol levels?
I would love to put my mum on this diet but she's crazy about fruits and would find it really hard to have to avoid those. Also, her cholesterol has always been pretty high despite her BMI being normal and she's very petite and skinny. Any advice for her to help her get started?
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hi daughter
My cholesterol and sugar were both high before starting keto, they have both normalised. After you have been on keto for a couple of weeks, sweet cravings subside. Every so often I have a binge day and eat what I want, but it is never enough to knock me out of ketosis. You don’t continue to lose weight forever, your body normalises. I have been the same weight for 2 years now.
I make my own sweet treats… there are so many amazing recipes out there. My diet now swings from strict keto to high protein depending on the circumstances… eg eating out, products available etc.
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Not sure if this is really the right place to post this, but I think it could show up with liver mets more likely than with other mets.
A year ago, I was hospitalized when docs found severe issues with both of my femurs. I was in the hospital and the rehab hospital for a total of 44 days. Due to the opioid drugs that they kept giving me, etc., I totally lost my appetite. With that, my albumin dropped.
When I got home, I still had issues with my appetite and my MO thought it might be related to my liver mets. Long story short, it's apparently not linked to that, but I still have little to no appetite, and I never eat a meal like I used to. I eat very little protein which I understand is important for improving low albumin.
Right now, my albumin is at a flat 3.0. Normal is 3.5 and above. I can't stomach the burgers, chicken, eggs, or nuts that are recommended to improve it. I can handle the Greek yogurt, plus I saw an article that said to eat high protein Atkins and Balance bars.
Has anyone else had this problem and how did you get your albumin up? This seems to be particularly perturbing to my MO so I'd like to address it if I can.
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Bev,
I hear ya and I DO think liver issues cause appetite issues..There's lots I used to eat and love that I can no longer stand. Chickpea Pasta is really good for protein. It's a very slightly different texture so if meats are hard, I'd go with that. The greek yogurt is good and so is cheese. Protein bars are good too. If you like oats or smoothies you can add powder, or add Hemp and Chia seeds. They are packed full of protein. Same with Quinoa if you'd like a stir fry. Look up energy Bites too. There are nuts and nut butters in them, but they mix so well with other flavours that you might be able to stomach it that way. My lab bases Albumin as 32 and higher as normal. Mine have been hovering at 18 no matter what, and part of the reason is because I have to drain my ascites. But I try to get a protein in everything I eat. But Yeah, I've been hovering towards pasta lately because meats are annoying me.
Has anyone had gallstones? My Pet scan mentioned it but didn't say if there was more than one. but I do have the raising ALP, Bili, and itchiness, along with those vomiting episodes. I was wondering if you can have the nausea and vomiting without necessarily having biliary colic. I get my blood work done tomorrow as well as speak to my MO about my recent scan, but I'm going crazy with the itchy. It happens sporadically but I know when it does happen, my numbers aren't crazy high. I wasn't this itchy even when My numbers were in failure mode. So I wonder if the gallstone(s) might be the culprit especially since I woke up yesterday with so much vomiting and then I was fine. ugh friggen bodies
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b-a-p,
I have had a gallstone since 2006 or thereabouts. At that time, my PCP wanted to remove it, but my MO said no -- leave it alone. the funny thing is that the radiologists read it into my scans maybe half of the time. Do I have a shy gallstone??
Anyway, I think that when it blocks the biliary tube (is that the correct terminology) you can get some pretty bad vomiting -- the proverbial gallstone attack. Luckily, I've not had that happen, but from your description, that could be causing at least some of your problems. I'd follow up with your MO and maybe with a gastro doc?
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Bev,
Getting a hold of my GI is like pulling teeth. My scan also showed varicies lower down and I feel like a tiking time bomb Bc they wont get back to me. The heptologist is going on sabbatical so i'm SOL. I will talk to my MO tmr about it all. I don't necessarily get the biliary colic / pain but I do get the nausea and vomiting at you know. and the itchiness. Ugh . Comes and goes so I don't know what to think of it. But yeah, I'll bring it all up tomorrow. I have bloodwork too so hopefully that'll give us ideas. sigh
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Kanger...thank you for that. I am glad to hear you say that your weight did normalize bc as Susan mentioned I CANNOT afford to lose ANY weight. I am only 96lbs. as it is...and when I was first diagnosed I cut out almost all carbs and sugar and dropped to 87lbs. it was NOT healthy. My main concern would be blocking the FA pathway..bc TNBC feeds of high Methionine and not only are A LOT of veggies high in this but of course meat is as well.
Bev...you actually could very well have Cachexia....because the biggest sign of that is low albumin..... had you asked Dr. S about that?
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Albumin is manufactured by the liver. Pathophysiologically if albumin is low it's either due to low intake of the building blocks or poor function of the liver. My albumin was low when I was first diagnosed in 2020, then went back to normal while the Tecentriq worked, and with the recent progression in the liver it's been low again.
I was told that making sure we have the building blocks (through intake) is all we can do but that it doesn't work as it really is the liver just being sluggish about doing its job.
I aim for 1.2-1.5g of vegan protein / kg body weight. I've seen recommendations up to 2 g of protein/kg body weight. This is one of those areas where I do just feel this is my job & I do it, no matter what I feel like. I have a number of high protein meals that I'm either neutral about or actually like & I just eat them on repeat, day in, day out. There are others that I don't particularly like but I eat them anyway, cause that's the job. I've also read that aerobic exercise improves liver function so pretty much every day, I walk & try to get into the huff & puff zone for a bit.
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Nicole,
No, I don't think it's cachexia. I've talked with the palliative care people and they don't think so, either.
Moth, I had a complete workup with the hepatologist and she says that my liver is functioning fine. They pulled more blood than I've ever had drawn. Now, as to intake, I am not taking in enough of anything that would give me any building blocks. Trying to figure out, as you've done, what the heck I can eat that I actually can take in and eat on a regular basis. Just one more job with respect to this disease -- fun, fun.
Thanks to both of you for your thoughts.
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Reposting from Brain Mets Thread:
LFF's son posted on her Caring Bridge site:
Liza died this morning at about 3:45. Eamon was with her when she passed. Corwin and I were here shortly after. She was very peaceful and comfortable at the end. I'll be bringing the girls in to see her this morning and say our goodbyes.
So heartbroken I can't really express my feelings right now.
See you on the other side, Liza!
Love, Susan
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Liza, you will be missed by many. Very sad to read this.
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Leftfootforward, peace to you and your loved ones.
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Leftfootforward will be missed. She was a strong woman who loved life. I wish peace and comfort to her family and friends
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I’m so sad to read that LFF has passed. She will indeed be missed. My thoughts and prayers are with her family. Rest well dear Liza.
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Rest in Peace Leftfootforward (Liza).
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