Swollen stomach with IBC

[Mary_in_Texas]

Hi, My mother is 72 years old and has stage IV Inflammatory Breast Cancer. Her PET Scan showed it in the hip bones, between the lungs, and a little on the liver.  She has recently been hospitalized with pneumonia, and now has very distended stomach (looks like she is having triplets!)  Her legs are swollen also.  I am living in Texas and my Mum is in Ireland, so I am trying to figure out when is a good time for me to go home.  How does this disease progress?  She did 6 weeks of cisplatinum and the cancer then spread to her abdomen, she is now going to start Taxal and Avastin when they can drain the fluid out of her stomach.  She is not passing urine much at all now either. She is not pain though, just very uncomfortable. What could be causing the blockage and the fluid buildup?  Could it be a tumor or just something simple to fix? What is the prognosis for Stage IV IBC like this?  Should I spend the next three months in Ireland with her, or could this go on for years?  The doctor said she will be on chemo for the rest of her life.. I don't think he is planning on a full remission ever!.  Please let me know your thoughts on this.  thank you.

[katarina777]

And Mary, I hope you have a ticket that is changeable for $100, or so.  I would not set a strict time line for the visit if I were you, like three months. Maybe only a shorter visit is indicated and maybe not. If she is OK you could just stay a couple of weeks and come back later. It is really hard to plan anything with and about cancer.

My sister came to visit for a week this year and it was really nice. I live in Oregon and she came all the way from Austria just to check on me.  Kat

[Mary_in_Texas]

Thank you very much for responding to my questions,  I really appreciate all your support.  This was my first post on-line, and I am so grateful that I have somewhere I can now ask questions.  
My Mum had a drain put in today and they already have 3.5 liters of fluid removed.  There seems like there is a lot more to go.  I have taken all your advise and booked my ticket to Dublin.  I will be leaving in three weeks. I am hoping that I will be there when she is out of hospital and going though her Chemo treatments, so I can take care of her and take her to the hospital for her sessions.   Thanks again for everyones support.

[mamaboulet]

Steroids puffed up my mother too during her lymphoma treatment, and she's a skinny little thing.

[katarina777]

PS:  IBC clogs up the lymphatic system. For myself, I was really swollen when I had chemotherapy, too. But in your mother's case, the severe swelling may also be from steroids she is receiving. I saw a photo of a woman with IBC when she was on steroids and she gained like 120 pounds.

[katarina777]

It sounds pretty serious and bad to me, and I also think you should go soon, and I do not think this is going to be a matter of years.  (again, I think, I feel..I am not an expert, either, but I have seen/heard enough) IBC is an extremely aggressive cancer and it  invades the lymphatic system. There are tons of lymph nodes and channels in the GI tract, and everywhere really, and 'elephantitis' (to give an idea and image) is solely a disease of the lymphatic system.

I guess I have studied this type of cancer more than most people here because I had it myself...or, have it myself.  I never really know how to say it. It doesn't feel like present, but I am aware that the future is tied in with the past, and I am only in the middle.

[mamaboulet]

Have her doctors checked her kidneys? How is her heart? I'm just a layperson, but I know that fluid buildup can be caused by a variety of things, including poor cardiopulmonary function (the pneumonia doesn't help), poorly functioning kidneys (you say she's not urinating much), and side effects from various drugs. I don't know about the cancer itself in terms of fluid buildup.
Personally, given the advanced stage of her disease, and the generally aggressive nature of IBC, I would choose to be with her now, while she is merely "uncomfortable." I do hope that the fluid problem is something easily controllable, and that the chemo helps control the advancement of the disease. Best wishes to you and your mother.

[madgeOwens]

Once fluid starts building up in the body it is not a good thing. I think I would go to be with her now if you can. Only God knows the answer to your question, not even a doctor knows for sure. God Bless.