MLMM

I am so sorry to hear this. 

You are in my prayers.  

We found out that the fluid in mom's abdomen was not cancerous!!! 

The bad news is that the oncologist has decided the fluid is coming from advanced liver cirrhosis.

How she got cirrhosis we have no idea. She has never drank, has not had hepititis, does not have fatty liver, etc. I pushed the onc to get us in with a gastrointerologist and he finally agreed--although he seemed to think it would do no good. It may not, but we can't stand the thought of not at least trying. Her onc seems to feel focusing on the liver is pointless. This really frustrates me, especially since he thought the fluid in her abdomen was coming from the tumors until this recent test shows that to not be the case. 

 As far as we can tell, mom is still responding well to the treatments. The cirrhosis is actually a bigger problem right now.

Has anyone had a similar situation? We will be seeing the gastroenterologist soon. Any thoughts/suggestions are appreciated. 

Hello,

I was just wondering if there are any other stage iv patients out there using nutritional therapies alongside chemo.

I am the caregiver for my mother who has  stage iv with mets to liver and bone and we are using a great deal of nutritional therapies.

I was wondering if anyone out there has any recommendations for liver healing foods?

I would also love to connect with other stage iv patients integrating nutrition into their care plan.

Thanks!  

She has not had a PET scan, but her liver tests show her liver functions are almost normal. Her last tests were just about a week ago and they were near normal (just a tiny bit high).

 When she was first diagnosed in March, her liver enzymes were WAY high. But after her first treatment, they have hovered around normal.

The doctor first discovered the acities before my mom did when he did the CAT scan that showed the mets were almost gone. He was concerned because she had it but was also concerned because he had no idea what was causing it.

He also discovered she had cirrhosis, but he was not sure what caused that. My mom has never had a drink (religious reasons) and has no other illness that would lead to cirrhosis. In fact the doctor says he does not even know FOR SURE if it is cirrhosis unless he does a liver biopsy, which he does not want to do because he says it won't change the major problem at hand which is the cancer. 

He has mentioned many times that the ascites could come from carcinomatosis, but I can never get a straight answer out of him how we find out if she has that.

So much of this has been a big, big mystery.

Hopefully we will find out more Thursday.  

I have been writing in a lot lately because my mother has been having some difficulties.

She has bc mets to liver and bones. Her last scan showed that her liver mets were gone and mets to bones were almost gone. She just had a new CT done this past week and we will get the results of that scan on Thursday.

Problem is, she has been developing ascitis for some time now. She finally had to have some drained this past week. They drained off over 1200ccs the first day (Thursday).

She is continuing to drain some off every day--about 300 ccs or so.

Yet she is still having swelling in her ankles and thighs.

Has anyone out there ever had ascites and have any relevant information or similar situations?

From what I read every where, ascites is not a good sign. Yet my mother feels fairly well and is able to move around, eat, laugh, etc. 

Any information is much appreciated.  

Thanks! 

Yesterday my mom had to have her ascites drained. She was having trouble breathing and talking because of the pressure.

 She feels much better today, but is still having trouble talking.

This is so scary, yet otherwise she feels fine she says. She is up moving around, has hardly any pain, etc.

She has BC mets to liver and bones but has been responding to treatment. I am so confused.

I have another call into the doctor, but I don't expect any new information.

Anyone had anything similar happen?

To me this seems like an end stage thing. Yet she feels quite well. I am so confused.

ANY thoughts are appreciated.  

That is sooooo wonderful! I love hearing such good news from mets patients! 

Gladiola--

My heart goes out to you. I know that feeling of being overwhelmed so well and not knowing what to do. I am new to this list as well. 

I am in much the same boat as you. My mom is 63, my dad is 68, and my mom has mets to the bone and liver. She was diagnosed in April and things looked very bad, but she has made improvements. She is triple negative, so she can only take chemo. 

I agree with the others--it just depends on what your parents want and how much information you want. That can be a hard thing to figure out. I would really encourage you to spend some time in deep thought about this. I have a journal I keep. It has been my life saver many times as I struggle with navigating the role between daughter and caretaker and translator of medical information. 

For me and our family situation, it is right to know a great deal about her diagnosis. I wanted to make sure she got the best care possible, and she was too overwhelmed to ask questions. So was my dad. And I am an only child and neither my mother or father have living siblings. When she was first diagnosed I was living in another state (I live near her now), and i called her doctor so I could fully understand her diagnosis.He was nice enough to call back and answer any questions I had. SInce that first conversation I have to continually ask questions and ask for more information. It has been my experience that if you want information you have to be fairly specific when you ask questions. 

For me, I need to know as much as possible. This is what my mom wanted as well. But I agree, you have to do what is right for your family. If you do decide to go the route of asking lots of questions, be prepared to be persistent as it can sometimes be hard to get the oncologist to spend as much time with you as you need. But be persistent. It is their job to provide your mother with quality care and answer your questions. 

I am so glad your mom is feeling better! That is wonderful.   

Hello everyone,

I am new to this list. I am the caretaker for my mother who is currently battling breast cancer with mets to the liver and bone. This is recurrent cancer. Her first cancer was stage 1 non invasive breast cancer which she had in 2004. They thought they got it all. 

This time it's stage four invasive. She has taken five rounds of chemo (red devil) and, according to the recent scans, the liver mets are gone and the bones mets are almost all gone. She is HR negative, so she has to stay on chemo. She is 63 years old. She was dx in April of this year. 

There have been many, many confusing things about her diagnosis, but the the thing I am currently confused about is her ascites. From what I understand, the doctor thinks it is coming from her cirrhosis. See, when her liver scans came back after her five rounds of chemo, the doctor noticed she had what appears to be cirrhosis. We don't know how this developed. My mom has never drank nor had hepatitis, so the cirrhosis is a mystery. 

I know that ascites is usually a really bad sign and heralds a bad prognosis.  Has anyone had ascites that eventually went away? My mom's ascites comes and goes. Sometimes it is fairly large, but then it usually goes back down. Her liver counts are almost normal and her liver appears to be functioning ok. Sometimes her ankles swell also. But often it is just her stomach. 

She also is always running a fever that the doctors have never been able to diagnose. They just call it tumor fever, even though they think it runs too high for it to be tumor fever (sometimes up to 101 or 102). She has been in and out of the ER, but they can't find any infection. 

 Although she sometimes has bad days, she is still able to care for herself and has little to no pain. Fatigue is her main symptom. Up until a few weeks ago she was still working almost everyday.  

If anyone has any thoughts on any of these subjects I would love to hear them.  I research everything I can, and I ask the doctor many questions, but we seldom get answers. He sometimes seems annoyed with my many questions, and  he is overworked and I don't think he is used to patients and caregivers being as inquisitive as we are.  

Any information about any of these subjects would be appreciated.

And, one last question: is acites always a sign that the disease is getting worse? As I say, the doctor first discovered the ascites when he discovered that the liver mets appeared to be gone.  

As her caretaker, I want so badly to retain hope that she can live with this disease under control--at least for a while.  

 I appreciate any information anyone would be willing to share about acites, cirrhosis and mets, how to get more information from the doctors, etc. 

Thank you in advance.