How are people with liver mets doing?
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JFL. Yes her doctor kept telling her he was confident the treatment was were to the point he told her she didn’t need a scan. Over the last couple weeks she was filled with fear. She kept telling me something wasn’t right. They final order a scan and this past week she was suppose to find our the results and discuss new treatment options if needed. I talked to her New’s Day and she didn’t sound well. I told her not to be afraid to go to the hospital. She went the next day and here we are. It puts things in perspective for me just how fast things can turn. I just hate this disease. I want to remain hopeful for all of us going through this.
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Fly away Lisajo. We'll miss you.💞
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It’s the end of all suffering for Lisajo...and the beginning of a wonderful and peaceful journey back home.
She is at one and part of everything now....
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Live biopsy was so painful!
I had my liver bx yesterday (for ER/PR/HER2) and start Taxol on the 17th.
I had NO idea the bx recovery would be so painful. Any advice?
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met with my MO.
In a nutshell: know brain mets about same size in 6 weeks. Only 2 new spots.
Lungs clear.
Liver looks best it has in awhile.
Enlarged Lymph nodes gone
Blood counts show anemia to pipint I i could get a transfusion
Heart function down to 40% from 60%
So brain mets still not controlled but maybe slowing down. Liver mets are great. Heart not tolerating Herceptin/perjeta. MO has decreased dose of taxol.
I’m waiting to do the transfusion. New heart meds ordered. Consult with MZo at Seattle Cancer Vare Alkuance Monday.
Lots of balls to juggle no right answers. Focusing on the the good and and hoping s few tweaks but me some more time.
Missing everyonecweve lost. Thinking of all of you. Thankful for all of your support.
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What sad news about Lisajo...may her memory be for a blessing to those who knew her.
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Leee,
Mine was also more painful than I had expected. At this point, you should be able to use a cold pack to ease the discomfort. Not freezing cold, mind you, and for no longer than 20 minutes so that you don't damage your skin. It really helps.
Do you have pain meds handy? They are also good
.I would say that it took me a whole week to feel "right" in that area.
Jennifer
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Leee I've had two liver BX and neither one was painful. The most recent one was December 27, I'm sure it would have been painful if I had been awake for the procedure but they put me out. Maybe it makes a difference where the mets are located. I hope you get better soon. 💞
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Thank you for the info and advice!
I was surprised that the hospital didn’t mention possible pain or pain medicine - not even Advil or Tylenol.
It’s a little better today (I can at least breathe without pain!).
Mine was “posterior” so not sure if that made a difference. I’m pretty sure it’s the entry site between the ribs that’s hurting.
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lee: did they have to go between the ribs to get the biopsy since it was posterior? My tumor is in segment 8 which lies over my bottom ribs so I wonder if they will be able to biopsy when the time come
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I don't know much about where mine was. I'm pretty sure he went for the ones that were in the area where the two lobes connect. He went in between my ribs on my right side right under my arm about two inches below my armpit. They can get wherever they need to go with that long needle and either CT or US.
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Yes - they went in between ribs that are up high - pretty much under my breast.
The hospital called today to follow up and I told the that I wasn't prepared for that type of pain.
She said she was sorry but they don't expect any pain after the first 4 hours.
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Ok ladies I need advise again. I am going to also post in Ibrance Thread. I got my results of my CT that was done last week. I don't see my MO till Jan 31--their idea not mine. The CT reads " Stable hypodense lesion in lateral segment of left hepatic lobe consistent with patient's known metastatic disease and having similar appearance to Oct 2018 CT. No new hepatic lesions identified with certainty though would follow up area of decreased density..., this may merely represent artifactual decreased density." And on summary, " Follow up of hypodense area suggested with considerations to include new small metastatic lesion though artifact favored." So.... what would your ideas be for this??? How follow up----MRI, PET, or wait till next CT in 3 months ( April ) and see if it is there then???? The thing is, the radiologist reading the CT's is not the same person each time. Some results show a measurement of the lesion in centimeters or millimeters and some results like this one have no measurements mentioned just 'have similar appearance'. Some months the results are basic and not much info and some months it tells everything---how much stool in the colon, the kidney stones in the kidneys, etc. As I said, I have not talked with my MO yet, but I wanted to discuss with you all and have an idea before I talk with MO. I would think the MO would see this result and want to talk with me now instead of waiting 3-4 weeks for my appt, but who knows. I think the office is pretty busy.
HELP PLEASE.
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candy- i think you are probably good. Like you said, diffeeent people read each sxsnsnd each scan is different because of timing of contrast injection etc. I would probably wait and watch. If something changes on next CT I’d worry.
That’s my gut reaction to your question. If your MO has s differing opinion I’d take that into consideration. Of course it’s up to you. If your gut is telling you something else, go with your gut.
Also- in my opinion radiologists are some of the most conservative people ever in the medical world. They include everything sometimes sobut doesn’t cone back to haunt them, even if it isn’t necessary.
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Candy I have just been through the craziest four months trying to find out if I had progression or not. Using PET, MRI another MRI and another PET, no CT because of contrast allergy. Anyway, All the tests differed, a tumor disappeared but others revealed enough to baffle four radiologists. Finally it was the last PET that made all my docs believers that I had progression in all three areas chest, lung and liver. So, do I look at this spot I find myself in as "we lost four months" or as tests are not perfect, radiologists are not perfect therefore move on with no regrets? I chose the latter. Decisions are made with the information available at the time. I used to think MRI was the most definitive for liver, now I think, for me, PET is best.
All this to say, I have no advice to give you. Only my experience which clears up nothing. We are so unique. Ask for what feels right to you at the time. Go with what makes the most sense to you at that time. No regrets.💞
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Leee, I have had 2 liver biopsies. My first one was surprisingly painful for a few days afterward. The more recent one was not so bad - sore but not a pain that really bothered me too much. It seems to differ based on each biopsy.
Candy, it is usually the radiology residents who write up the radiology results and then they are reviewed and signed by the attending radiologist. I see major variances in the level of description in my results and variances on what they mention. It took me a few years to find out I have had 2 stable wedge spinal fractures likely since diagnosis. No one else bothered to mention them until one PET scan did - and talked about them as continuing to be stable, as if this was not a new finding and nothing of concern. I always have notes about follow-up in my PET scans and I don't think the radiologist is always specifically considering what type of follow-up. Rather, the statement is intended to mean there is something here that needs to be checked out further or monitored (and the ordering physician, the MO, is now on notice and better figure out what that is).
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Thanks ladies for your guidance. The thing is I feel I cannot trust my gut. I had pain in my neck and asked the MO to scan it thinking it was the spinal mets getting worse and it turned out to be a disc problem. I don't know if I need further testing now for this questionable area or just wait till next CT in April. I also am losing confidence in the radiologists here. We are a small town and the scans I have are at the local hospital. We do not have 'residents' just staff radiologists. They read ALL imaging studies, from broken bones to cancer. So it is not a cancer center where the radiologist is looking at suspicious area to determine cancer. I am losing trust in myself, my body, and my caregivers. Maybe I should just let what is to be happen and not stress over it. If the cancer grows, it grows.
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camdu-678, Is it possible for you to get a second opinion at the Cleveland Clinic, or some other large cancer center? They should have their radiologists look at all films you take them (or have sent to them). I did that and MGH did find something that had been overlooked.
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Thank you ladies for the input. KPW3 a second opinion is a good idea. As I mentioned in the initial post about this, I was also going to post in the Ibrance Thread. Some responses there thought I should calm down about it and let it ride until the next scan in 3 months. If it is progression it will show up again and we can treat it more seriously at that time. I guess I am blowing it out of proportion. I pray it is just "artifact" and I stay stable for a long time. But if it is the beginning of progression, the early stages, I hope I don't regret sitting on these next 3 months when we could have started new treatment.
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New molecule stops cancer from 'tricking' the immune system
https://www.medicalnewstoday.com/articles/324125.phpMore good news for mice.
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candy- I feel that the oncologist will read your scan and let you know at the next appointment what they think. I do think they will read it before they actually see you and if it was any concern call you. Also does your blood work reflect any changes? If my ast alp and alt are higher than past appt. it is an alert there is something going on.
I do not trust and have lost all trust in radiologist. I went for a cat scan and I got results the same day. My oncologist seems to read them before my full report. This new scan compared to past one of mine showed liver progression and then all of a sudden the doctor got a call and left. He came back and said well now they see a spot in your femur. I'll have to refer you to Iowa city and most likely a hip replacement. I was devestated, all this in one day. I really didn't care To do anything. So off to Iowa city I went for a second opinion and to check for trials. They had no answers for me bi to see a bone doctor who specialized in cancer. Off I go to him. He point blank asked me what made me come to him? I said both doctors I go to sent me. He tells me the spots/mets have been there since my first scan and are either inactive or no change.
To me this tells me the radiologist did not read my past scans to compare, just the one prior to this. As far as I'm concerned the second set of oncologist should have caught this in Iowa city when going over everything. I felt stupid I had gone that far to a specialist. I don't trust either oncologist or radiologist to now read my scan appropriately. How do I know if they know dead mets from active?
It's all a guessing game I think. What about northwestern for a second opinion, in Chicago. My uncle has nothing but great to say about them there for his cancer. Good to get your foot in the door there for trials as well.
Sarah
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Here's some actionable and useful studies for people instead of mice....I believe this study explains why FASTING and keto diets, the current dietary recommendations for people with cancer are helpful! They llower blood sugar levels for those people that are not on Metformin....
Obesity, insulin, and cancer are linked. That suggests a mainstay diabetes drug might help cancer patients.
http://www.philly.com/health/cancer-metformin-insulin-obesity-diabetes-20190109.html
Starting 50 years ago, population-based studies found that diabetes increased the risk of numerous types of cancer, and worsened the outlook. But an "association," as scientists call it, just raises a red flag.
Beginning in the early 2000s, studies of diabetics showed that those who had taken metformin had unusually low rates of certain cancers — in some analyses, the risk was halved — and lower rates of cancer death.
Chronic inflammation and sex hormones also seem to contribute to the interplay of obesity and cancer. But insulin, produced by the pancreas to regulate blood sugar, is most consistently implicated as a culprit in cancer development and outcomes.
Many types of cancer cells grown in lab dishes, particularly breast cancer cells, produce an abundance of protein "receptors" that receive signals from insulin and a closely related hormone called insulinlike growth factor. This signaling network helps malignant cells get and use glucose, and may activate pathways that drive cancer cell growth, proliferation, survival, and metastasis, the deadly spread to distant tissues.
"It also appears that insulin [signaling] may stimulate normal cells that are involved in cancer progression," such as smooth muscle cells that form new blood vessels needed by tumors, said the ADA/ACA joint report.
If malfunctioning insulin promotes cancer, could improving the hormone's function inhibit cancer? And could normalizing insulin help cancer patients even if they don't have diabetes?
Obese patients' high blood sugar "may impact tumor growth by providing cancer cells with an abundance of fuel," explains a review article coauthored by Ryan Dowling, a biochemist at Princess Margaret Cancer Center in Toronto.
"I don't think anybody expects that metformin will have a drastic or long-term effect on cancer by itself," said Fox Chase Cancer Center oncologist Daniel Geynisman, who is conducting a trial of metformin in prostate cancer that has come back after conventional treatment. "The question is, can it augment our standards of care — not to mention helping with" insulin resistance.
On that note, I'll be further reducing my intake of simple carbs and will take my Metformin regularly. Although I have already been off all sugars and processed foods for the last few years, I can't resist a delicious sandwich once in a while.
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Sponge offers hope of 'less toxic' chemotherapy
BBC News US
Scientists are testing a device that removes excess chemo drugs from the body to reduce side-effects. Read the full story
It seems to me that it would be simpler to cut the dosage...it's been proven that we are being overlymedicated....we all react to the same TX differently yet they start with one size fits all and stay with it till the SE are unbearable...with terrible consequences to our remaining health
Hummm....
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Skitzblitz- I cannot rely on my blood tests. When we first found the mets, liver 8cm lesion, my liver enzymes were normal and had been normal. They continue to be normal.
Good grief. Going thru all those docs and to a specialist and for nothing new. That is my concern. This radiologist noted this change. Will the next CT in 3 months possibility be read by another radiologist unaware of this 'blip' or will they look at the prior study and compare to see if the area of concern is still there???
Chicago is not out of the question, but I probably need to wait for the next CT to confirm the area of concern is there still. Chicago is a 5 hour drive one way and I don't want to sound the alarm if it is a false alarm---you know.
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I had a subcutaneous tumor on my lower left back that had been increasing in size per every scan since this summer. It was very easy to palpate. This is the tumor that was biopsied right before the start of the trial, and I am scheduled for a comparison biopsy on the same area next week. After one month on my clinical trial, it can no longer be felt! It's funny, I noticed the night before my appointment that I couldn't feel anything there, but didn't trust my own fingers or my husband's. I was SO happy that the doc couldn't feel anything, either!
I don't allow myself to get wildly optimistic about anything - I know better - but DAMN!!!
My doc says that's an indication that the immunotherapy treatment should be working to a degree in all other cancerous areas as well (C'MON LIVER!!!), but I won't know to what extent until my scan in February. He was practically dancing a jig!
Sign me,
Cautiously Optimistic Katty
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Katy, can you tell us what the trial involves? Or do you have the NCT number for it
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katty...congratulations for these exciting news and thank you for keeping us updated! Whaooooweeeeee!!
May you be the first of many to respond to Immunotherapy and bring about a new era in MBC treatment!
I can't wait to hear about the results of the scan in February!
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Hello ladies!
Hope you all had a wonderful Christmas and a happy New Years! I wanted to update you on the most recent news. Unfortunately I will be leaving Verzenio and moving on .. I don't have a ton of treatment options I think and ready wished Verzenio would last longer and be effective for some double digits months but it is what it is.
After my Y90, my scans showed that the procedure seems to be successful in terms of liver mets refuction in both size and activity.. actually two of three are non active!! However, bone cancer is more active but the report never stated exactly how much. Against a couple of MO's advice I decided to stick with Verzenio a little longer on the basis that I haven't been taking it regularly during the month of recovery from Y90 due to severe side effects.
I did take it religiously for two months 150 at night and 100 in the am. The first month the tumor markers stayed stable and I took it as a good sign. I had my scans right before Christmas and it came back showing again « more bone activity » but also a few new liver mets!!!! In just one short month and my tumor markers rose by 30 points. I'm so bummed right now because that means that all the Y90 suffering was for nothing and may have to go through all this again if my next treatment didn't work.
I'm trying Lynparza next even though I only have a somatic mutation not a genetic one. I was also offered Afinitor but the comments on that thread have been very discouraging. I also have Halaven as an option but aside from trying to avoid IV chemos at the moment I'm trying to save it when liver mets are a lot worse because then I'll need something that can act fast.
Hopefully I made the right choice and can live with the new side effects.
Good luck to you all my fellow liver metzers ❤️
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congratulations Katy!! Please provide more details.. we are all eager to know more!
Candy, I feel exactly the same way about radiologists and even oncologists .. I’m questioning the whole healthcare system as a matter of dact despite having several family members who are medical doctors!!
I spent the last 2 months going through the exact same thing. I had a scan after my Y90 both PET and liver MRI though they diced abd sliced the liver in their report they brushed the bone mets leaving me with an alarming note that prompts change in treatment without giving me any real numbers.. they said I have five more active bone lesions in such and such places but no SUV numbers or even tumor size. I refused to change treatments based on that report and requested to know more .. my MO, who btw are obviounot trained to actually read the scans and rely heavily on the reports, said sge tried contacting radiology to have them reread the scans but they wouldn’t!!
I get treated at Emory University a big medical establishment and as JFL said the residents usually read the scans first and the attending signs off on them. But to feel that you’re too important to go back a read something based on a single patient request is really beyond me!! I feel private practices are more harmonious in their care when it comes to stuff like that because the radiologist is there abd the doctor can easily go to him and read the scans together. At least that’s what a medical oncologist friend in Colombia does.
I decided to continue on my treatment for teo more months hoping that I’ll get a better response or at least stability.. then my late December scans are done and lo and behold the report not only fails to include numbers and specifics regarding the bone lesions they even compared this scan to one from five months ago!!! So basically There’s no way I can monitor the progression of the bone mets based on that report.. ugh!!
I emailed my MO over the break and drew her attention to that mistake and she said she she’ll take care of it. After many failed attempts to get tgem to answer her questions she walked to their department and read the scans with a radiologist finally!!!
She came back saying “yes, they seem to be more active”!!!! That’s it!
I saw her last week and requested that the report be addended .. they finally did that and surprise surprise they found a few liver mets that were not reoprted on the initial report!!! Wth???
I call my IR doctor who answered immediately (that’s not the norm btw) and he said yes they are indeed new liver mets that were not included in the PET nor the liver MRI report.. he suggested another surgery or a change in treatment.
I’ve been very frustrated with all this so I completely understand your concerns.
Now I have to change the medication because it seems in just a short month all this happened.. I was taking my pills religiously that past couple of months and the first month my TM was stable which I took as a good sign but I just got my TM for my last visit and it is 30 point higher .. which probably means that when the liver mets appeared only last month.
I feel that it’s not fair that we have to do the legwork fir the doctors and keep pushing all the time we should at least have the peace of mind that we are in good hands!
Sorry for venting but hopefully this experience would at least help someone out there
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