How are people with liver mets doing?
Comments
-
babs Darn double darn! 😧 where was the progression? So, you will have Halaven before you leave for Paris? You are one brave lady. An example of what Mother's will do for their children. 💞
0 -
Artist,
Im so furious that they are taking so long to get your Xeloda to you. I was off treatment for 6 weeks to get into the trial and my biggest liver met almost doubled during that six weeks. All of this is just so upsetting to hear.
Thanks for the advice on Ensure, I will give it a try!!
I am dealing with darn Iron issues. All my red blood counts are low, but have been for the last 2 years. They did an iron study yesterday and I saw my results on line. My iron is actually high 228 and I know I don't get enough iron. I did a little research and it looks like my body is not absorbing the iron and it is getting stored. It says that iron stores can be in your liver, heart, and pancreas. I start thinking that if these stores are in my liver, it may be why the tumor grew so much. Breast cancer mets love iron, this is why we are told to stay away from iron supplements. Anyway I will have to wait until Monday to discuss with oncologist what the heck is going on.
Today was only my 6th day of Olaparib and I am so weak and out of breath. I walked from my car into TJ max and had to sit in the floor because I was so out of breath. I am worried they will kick me out of trial, and I can't do chemo because of blood counts. Even that my trial drugs cause low blood counts, its nothing compared to chemo.
If anyone has any knowledge on high iron, low red blood cells....please let me know. It's a condition called hemochromatosis. Ive not been given this diagnosis but my research on line is suggesting it.
Robin
0 -
babs Darn double darn! 😧 where was the progression? So, you will have Halaven before you leave for Paris? You are one brave lady. An example of what Mother's will do for their children. 💞
0 -
Grannax. I had progression in my chest and liver. Not sure about anywhere else until I see the actual report. Just got CA 15-3 and that doubled too. I get Halaven when I come back . I leave tomorrow night and return on Tuesday night. I’m feeling so badly that I’ll need lots of acting and make up so my dd doesn’t figure things out. I can’t stress her in her last month of pregnancy.
Babs
0 -
rpoole. I don't remember all the lab details but many years ago my docs discovered that I was not absorbing B12. Something about I don't have intrinsic factor so I have to take B12 shots once a month forever. I've been anemic so many times, also. One of the worst times was the summer before DX of MBC. Doc gave me iron infusion a couple of times. That was July of 2016, I was DX November of 2016. It's easy to look back and realize that was probably a symptom of my cancer. I have not been anemic since then, even on Ibrance. Go figure, it's confusing. Mine was not called hemochromatosis.
0 -
Babs. Prayers for you. She does know you have MBC, right? But does not know about the progression and the pain you have? Ill pray for super powers for you when you are with your DD.
0 -
Babs i could hear your frustration and desperation. This thing is a monster out of control. You should be concentrating on your trip. So sorry, it's so hard to have to drop the trial. But maybe Halaven will be stronger for you.
Ronnie funny is that they were giving iron to Dani, because they freaked out her levels was so low. But that was in the beginning of the year. Did you try the Mayo Clinic info, they are pretty good. Good luck sweetie.
0 -
Grannax2 - The standard biopsy is evaluated at the local pathology lab for basic immunohistochemistry (ER,PR and HER2). They may also measure how many cells are dividing. If you ask, they look lymphocyte infiltration ... the number of T-cells that are actually in the tumor sample. For the standard pathology you need 2-3 cores. Unless the order indicates that the biopsy is for genetic testing and the number of cores required (4-6) then the IR is going to take 2-3 cores.
The orders for both my biopsies did not specify the amount of material required and the IR incorrectly interpreted the order.The first time I was not aware of the confusion but the second time I was able to correct it. The amount of material you need for the intended test is certainly something to discuss with the IR when you get biopsy.
Foundation One requires 2-4 cores; however, they don't do immunohistochemistry so the local lab still needs their 2-3 cores to do basic immunohistochemistry. They should be taking 4-6 cores for a Foundation One test plus basic immuno-histochemistry evaluated at the local lab.
Caris does the immunohistochemistry (with 15+ more targets) plus genetics.They require 4-6 cores.
But even if you get 4-6 cores, you can have problems. 80-90% of a typical tumor is dead tissue It is very easy to get a bad core with little useful tissue, especially if you are taking tissue from tumors that were recently treated and responding like mine. Knowing this, I told the IR I needed 8-10 cores. I explained wanted to do private testing beyond the Caris test. This is partly true, but given my previous experience I was worried about getting enough tissue for the Caris test even with 4-6 cores.
As it turns out I was right to be worried. The IR was able to get 8 cores, but only 6 of them were any good. The pathologist sent the 6 good ones to Caris. He has the remaining two stored in a separate paraffin block for additional testing if needed. However, the last two have very little useful tissue. I might get a single slide out of them. If I had hadn't asked for 8-10 cores I am not sure we would have had enough tissue for full histochemistry and genetics.
MRI says 50 mets but very few show any live cells (ring enhancement).Tumors with live cells have "ring enhancement" in the MRI with contrast because the live cells on the outside of the tumor absorb contrast while the dead tissue in the middle does not. It confirms the previous November PETCT and shows a "strong partial response" since September. I was not expecting anything new. The idea is to get a baseline so we can monitor the liver with MRI going forward.
Welcome Judy. My only thought is that is a whopper of a dose of Xeloda. I've seen many doctors lowering the dose considerably and still getting a strong effect. The side effects can be tough and a high dose may not be necessary. You want to stay on Xeloda and be comfortable because it is an effective line of treatment.
Babs - I think the scans show you what you already know.What a gut punch nonetheless. I am just glad the ascetites don't seem to be there and your treatment plan is lined up . .All this sets you up to go to Paris and get on with your life, which is the key. I have complete confidence in your acting ability. I agree strongly that you should enjoy this weekend and leave the cancer behind as best you can. You have a plan to kick these mets in the teeth ready to go next week, so why let this bump in the road define your holidays with you daughter.
Rpoole - I am so sorry you are tired and I wish this were easier but I am once again impressed with your research. You have interesting theories about iron and cancer that I think are likely correct … keep going.
>Z<
0 -
Thank you for such a good explanation. 50 Mets in the liver? And it's just really a gift that you got some results from your tx in Japan, i'd say no. Boy this IR had no idea who they messing with. Fool me once...yeah you got it baby. Are you feeling better? Have a good night rest.
0 -
Good news, I had my first PET/CT on Abraxane and it is working, shrinking my liver mets, most of the increased liver metabolic intake is gone and bone mets remain stable with no metabolic activity! I still have one very large liver met in the right, a somewhat large met in the left lobe and many other smaller ones but the small ones appear to be inactive.
After my scan, I inquired with the interventional radiologist about doing Y90. He did my biopsy and came recommended from my MO for Y90. The IR told my DH that he wouldn't recommend Y90 for me because there was a high risk of liver failure because I have had multiple chemos over the years. He said he would only use it as a salvage therapy. I was a bit shocked as that doesn't line up with what I have been reading and hearing about Y90. My liver enzymes, bilirubin, alkaline phosphatase and everything else are in normal range and have consistently been that way. I have never had a problem with liver function or my liver panel levels since mets diagnosis. I am sure there is some risk of liver failure but I didn't think it was a likely outcome. I am going to get a second opinion.
Grannax, Mom and others who have done or investigated Y90, were you told anything about liver failure being a large risk? Mom, I know Dani has had various chemos - was this identified as a problem/risk factor? I am feeling pretty upset about this. I would like to do Y90 while my bones are still stable.
Robin, I recall having to take copper with iron as iron doesn't absorb well without it. It was required by my doctor when I took iron. Do you take copper?
Z, I am glad the biopsy seemed to go through this time. I will make sure to follow some of your tips if/when I have my biopsy re-do following the prior botched one. The plan was for me to get the Caris test but like you, they didn't leave enough sample to do that, so it is good to know the specific number of cores Caris needs. Your recommendation about bringing your own food to eat after the biopsy is a good one! I completely forgot about that until you mentioned it. I was forced to eat a stale hospital turkey sandwich before they would let me leave the hospital. Thanks for the info/link on metronomic therapy. Dr. Chue sounds like he is very innovative and thinks outside box.
Artist, it seems like so many of us have trouble getting meds from the specialty pharmacies. I recall spending a lot of time on the phone with the specialty pharmacy, doctor's office and insurance company to push them to get their acts in gear. I would be the persistent, firm yet friendly and likely annoying person who would call at least once a day to all three of them. We shouldn't need to resort to that. It takes too much time and energy. I hope you get the Xeloda soon.
Babs, thinking about you. I hope you enjoy your trip to Paris to see your DD, in spite of everything going on, and am sorry to hear about the progression.
0 -
JFL. My IR did not say anything about liver failure. In my 25 years, I've been heavily treated with CAFx6, Taxoterex6" and Abraxane. I think a second opinion is a good idea. The only time I read about liver failure is if they do y90 to both lobes at the same time. They don't do that anymore.
Z. You know I'm just preparing for what might happen in the future. I don't even know if they could find a lesion to BX. My last PET in August show no uptake. When i have the PET in January, who knows what they will see. At that point I will be one year on I/F. And 7 months post y90. Foundation One only takes 2 weeks and it's already been one. So, I should have results in a little over a week. I'll share and ask lots of questions.
I hope everyone will be with family and friends tomorrow. We have a lot to be thankful for. Even in the midst of our BX, IR, MO, RO, TX for MBC, we have or family, children, grandchildren, friends DD, DS, DH. Find a way to make it a special day.,💞😍👦👧👵👴🐱🐕🍗🍖🌞👪👫👭🍰🍗🍜🍀🍁🍂🍃🌲🌰🚸
0 -
JFL, Thanks for the copper advice, I will talk to my oncologist. My red blood cells are lower today, so I have to get a blood tmrw morning. This will mess up my Thanksgiving with my family at my Aunt's house. They have always eaten at 11:30/12 and I will have a 3 to 4 hour treatment and a 2 hour drive home. The hits just keep on coming!
I think I would like to go see a hematologist about this blood problem. The oncologist here said that as long as my iron wasn't low, then there was nothing to worry about. I call bullshit! My red counts have not rebounded in 2 years!!! And the Carboplatnin was the first chemo I had that tanked them to abnormally low levels. I had 7 weeks off from chemo until this trial, and all white blood cells rebounded nicely.....but not the red at all. So in my opinion, there is something more going on here and I plan to get to the bottom of it.
My IR doctor told me about the liver failures from Y90 because I saw some research where it happens. I was scared to death to go through this. He told me all liver enzymes must be in normal range...ALT,AST.billirubin, and album the most important. He also told me the more procedures you have to your liver, and how munch chemo you have done can effect the outcome. I have only done Carboplatin and he said he would not treat me if I do anymore chemo. I had also done CMF 6 years ago for early stage BC and also took Xeloda for 6 weeks. So from his point of view, I have done a lot of treatment, but have never had any liver directed therapies. Please stay away form googling deaths and Y90. All it did for me was scare the heck out of me and I have been pushing it back to later dates to think about it more. But the good thing is after my trial, I am going to speak again to Andrew Kennedy at Sarah Cannon. I spoke to him last year and he was more upbeat and positive. His reputation is one of the best! So I ready to move on it after I finish my trial.
JFL, please get a second option! The one thing I did take away from the IR, is that it needs to be done earlier rather than later.
Momall, I will look at the Mayo information, thank you!
Grannax2, I get the B12 shot monthly but it doesn't seem to be doing the trick.
Your body should not be storing as much iron as mine. Stored iron in high quantities is harmful to your health, and to be blown off about this from my Oncologist infuriates me. I was feeling so bad yesterday, could not even walk from my hotel room to the elevator with out sitting down in the floor trying to catch my breath. My heart was pounding so hard I was freakin out. I told my sister that these cancer treatments are going to kill me before the actual cancer. I am fine with getting this blood transfusion on Thanksgiving Day, but it is just a temporary fix. There are not looking at the bigger picture. Can i just let out the biggest scream for all of our incompetent Drs.
AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH X1000
ROBIN
0 -
Z-- Way impressed with how you handled the biopsy fiasco!! A job well done!!! It's a damn shame we are forced to pick up all the dropped pieces and micro manage our oncologist! Having these disease is exhuasting in its own right, and to back track on every little detail to make sure were are getting the best care is so stressful with more exhaustion.
Cheers to you Z!
Robin
0 -
I think most oncologist's are also hemotologists. Hem/Onc. they are trained in both. But, maybe not all are.
0 -
JFL - Congrats on the awesome scan. Liver failure is the risk with Y90 and TACE but as Grannax says that's why they never do both lobes at the same time.I see a wide range of opinions on whether and when to to these procedures on whether and when to use these procedures.
I appreciate everyone reporting what they are hearing from IR's.It helps everyone know who to ask and when to keep pulling the string. With this much variety in opinions it will come down to finding an IR you want to work with and coming up with a plan. However, I would not give up if you get turned away by the first one.
Grannax -interested in your F1 results.I am always thinking ahead and preparing …
Rpoole - you have an exceptional nose for BS so keep asking questions until the stink dies down. I am given mis-information or flat out lied to by a medical professional at least monthly and sometimes weekly. The iron storing is a serious issue as you know.
>Z<
0 -
Robin and Mom, Not just upsetting about no Tx but the infuriating dilemma of me calling multiple times, they promise to get back to me and they don't. I called again yesterday. The nurse said she had the Pharmacy on hold regarding my script and that part of the delay was that one Specialty Pharm transferred it to another. She PROMISED to call me back this morning with some answers. No one has called. The ascites discomfort is there 24/7 which greatly curtails how much activity I can do. Viscious circle.
Robin, how miserable to feel that weak and out of breath. I had that when I was on the highest dose of Ibrance and was leaning on a shopping cart gasping for air. Ended up going to the ER worried a a blood clot but no, just the med. wondering if yours is the med or the iron issues?
babs, that news just sucks, I'm so sorry. I hope they do relook very closely at that scan or even do a dedicated CT to just your abdomen. I pray it is not ascites but another simple explanation they can treat quickly. I'm sorry it will put a twist in your trip but I hope you still manage to have a great time...
The Y90 discussion about multiple treatments and liver failure seems to support the idea that Zar mentioned the other day about sooner than later being better. I want to delve into this and come to some conclusions before the window of opportunity passes.
I hope everyone has a nice Thanksgiving despite the problems each of us seems to be experiencing. Robin, sorry you will be doing a infusion, babs on your flight with extreme discomfort, Robin with fatigue and breathlessness, Mom and your relentless fight for Dani, Zar and your mind boggling quest for correct testing and Dx, JFL and getting the answers you need about Y90, me with my lack of treatment! May you all have a blessed day and a better tomorrow.
0 -
I must tell you all how important each and every one of you is to me. You lift me up when I’m down. You educate me all the time. I learn more from you than all the drs. Thank you for being my friends.
May everyone have a joyful Thanksgiving with the people that love you and who you love. Being with those we love makes all the shit we go through so much better. Just wish our journey was easier!
Will send pics from Paris. My MO said to go and enjoy ( no obstruction or ascites) my gastro dr said to take it easy at home. I need to give my dd and sil more memories for when I’m not here so off we go!
Bab
.
0 -
Babs you made me tear up, how beautiful. Go and enjoy these wonderful times. Paris here you come.
ROBIN you go girl!!!! We are all yelling along with you!!! You are not alone!!! It's a circus out there, no one is paying attention. Grannax yes many are Hem/Onc, but still when Dani's # were wacked due to tx she did see a Hem specifically. Yes, most people have responsibilities ppl that need them, surround them, Human beings just wanting to go about their mundane life.
JFL -Re: Y90 - i am not sure it's the best idea if it's just a few mets. Then they could try some form of burning it no? Robin and JFL i can only tell you what IR did say they do it one lobe at a time because if one liver is out being traumatized, or if something goes awry with that side you got the other lobe taking over. how late is late? I am not sure, but he was serious when he was looking at the screen and said she's pretty close of not being able to do it, because the liver was so full of mets. Def the #s are important. Yes the albumin, creatinine are very important.
artist, maybe you should write a note to Onco - that you are very disappointed that you did not get the Xeloda yet, and one of the reasons is that you were hoping the doc is fighting for you. you know th e Pharmacy is also an issue, but they should be very concerned that you are off treatment. I say to write an email, they don't like when things are documented. A phone call is just a phone call, on paper for the records it does not look good. We did that just about a yr ago. we were having so much trouble, exactly like you, and I wrote such an email, saying that it's very sad that Dani would not be able to get t blah blah, they called from the office right away, and said they would get s/o to work w the Pharmacy. This is just wrong. So sorry.
Dani came down with a fever this afternoon. She was 6 hrs at the freakg Hospital, having the rads and also appointment with Uro, and the fever was spiking up once she got home. She is drained emotionally and pysically. Tylenol is bringing the fever now everytime it goes up, but really?On a holiday? again? every time she has an emergency it's either at night, and mostly on weekends or Holidays, always, it's bizarre. At the Hospital today departments were closing at 2 or 3 pm, no one worth his salt is gonna be workg the next few days. That means if she needs help tom and so on, we are doomed.
At Uro's appointment today, she told him about the blood clots from 2 days ago (happened at night of course) and showed him pictures. He said it was very concerning. NOW he tells us that he thought by now the bleedg would settle down. The only thing to do is do another cystoscopy and fulgurize again. He'd take another biopsy. He hopes it's not new bladder Hemangiomas. I asked him if he ever dealt with this b4 he said no, he never saw this, it's very rare. We KNOW. I got a friend of a friend to get a Urologist to check in and opine, and he said he never saw this, does not know how to treat it, but he called back that a radiologist he knows could laser it. Now we have to decide do we wanna laser it or fulgurize. How can we decide? We are so worried about this.
I don't think we gonna have the fam gathering, too much going on, it kinda wiped us out.
(im trying so hard to find docs familiar with bladder hemangioma, but nothing. the literature they do have is when they found a baby that is bleeding and then they found this.)
0 -
Artist, I agree with momall. You need to document what happened with this botched order and get it to the right person. I don’t know if what specially pharmacy you are using, but someone in charge needs to know. When was using KU Med Pharmacy I got repeated calls making sure I was getting what I needed when I needed it.
I just hope you get everything you need soon! I also hope your neuropathy starts getting better soon.
Enjoy your loved ones today.
Thinking of you.
0 -
Wanted to share this picture with all of you. My daughter was so surprised and shocked. And soooo happy! Worth all my discomfort
Babs
0 -
Thanks for the picture Babs. Have a great thanksgiving.
>Z<
0 -
babs-beautiful. I hope the Paris air and the lovely daughter are very healing
0 -
Hi everyone,
So I wrote back in early October about my mom starting Femara+ Ibrance and her liver numbers going out of wack. Well, after 3 weeks of improving numbers we had a setback and the doctor is starting her on Taxol at a lower dose next Thursday. I'm wondering if anyone here has had positive results with Taxol with a compromised liver? I'm kind of back to panic mode.
Thanks and happy Thanksgiving.
0 -
Love those happy faces, Babs.
0 -
PDXson - Hugs and empathy in large amounts to you and your mom. Are you dealing with primarily liver mets? Have you considered TACE or Y90?
>Z<
0 -
Thanks Z.
Liver and Bone mets and maybe a met to the lung. There hasn't been any talk about TACE or Y90. The liver is definitely the main concern as it seems to just be getting worse. She went from being ok in September to having a swollen liver and jaundice in about a month while on ibrance and femara. It's just been a nightmare because things seem to just keep going in the wrong direction
0 -
Hi all, I was diagnosed in Feb 2017 with one small met to the liver, and have been on herceptin and aromasin since chemo ended in July. Today I had another CT scan, and doctor is very pleased because the tumor, which has shrunk from 2cm to 9mms during chemo, is unchanged. My markers CA 15-3 have dropped from 74 (when chemo started) to 7.5 now. My question is, how can we know whether cancer is active or not? Sorry if this seems too obvious. I see my Onc on Monday for follow up, but just wanted to ask you knowledgeable ladies first... God bless xx
0 -
Daywalker,
Welcome to our group, but I’m sorry you have to be here. All questions are important.
It’s great that you are having a good response to treatment!
My experience is that I know about progression by pain, scans, and tumor markers. Not everyone gets accurate info from TMs, but I have so far. I started with bone mets only and considerable pain. Rads helped that. My liver mets were seen by scans-no pain so far. They are very tiny. My one brain met started with a numb chin, then confirmed with an MRI.
Others can add with their experiences. We each have very different stories.
Hope your visit with you MO is helpful.
0 -
kaayborg
How are you doing
0 -
Daywalker - Welcome. We have no stupid questions. In your case, I would believe the tumor markers as a measure of cancer activity. That's a big drop. Otherwise you have to scan, properly. Sometimes even do a biopsy to measure response to treatment. After a while you can go by how you feel.
>Z<
0
