One patient with glioblastoma still alive nine years later
by Helen_Z on Thu Jan 28, 2010 10:00 PM
The dreaded day has come. It's been 14 months post whipple.
Oncologist found 'thickening of abdominal wall' in my partner and believes this is the first sign the cancer is back.
I've never heard of this, I was always preparing myself (because God knows you start crying hysterically if you don't have some sort of mental preparation) for liver mets.
He is vomiting, can't really keep food down (but is extremely hungry)
What is this? If you've had this what chemo did you have? Does anyone know about any clinical trials around?
by mebenz31 on Fri Jan 29, 2010 02:59 AM
Hi Helen Z, Sorry to say but, I have heard those words before. My dad was dx in sept. 08, he did not have the option of a whipple due to mets in his liver. He did have a surgeon who did ablation and embolization to his liver (which worked very well) but at the same time the surgeon noticed this thickening of the abdominal wall that you referred to. He explained to us that is was the begining of the cancer spreading within the walls. It was not able to be detected by any scans but that in his experience it was the first sign of mets as you stated. I wish I could tell you something else to make you feel better, wish I could sugar coat it, but at the end of the day it is the cold hard truth. My dad was on gemzar and taxotere I cant really say it worked for him.....but what did not work for him might work for someone else. Have you tried ensure on days when he cant keep food down? No matter how lousy my dad felt he could always sip on a protein shake mixed with peanut butter, or cottage cheese, fresh berries to add calories. I am impressed that your partner is hungry thats half the battle,try to stick to simple foods that feed the body,eliminate junk foods and greasy foods. God bless
by Helen_Z on Mon Feb 01, 2010 02:07 AM
thanks for the response.
I'm starting to understand what it is, can you tell me how long your dad had after the Dr mentioned thickening of the walls? Drs told my partner he had 3-6 months.
Pain is now under control he is on morphine every 4 hours as well as other medication. He is eating lightly - mainly soups, custard -which isn't causing any grief. We'll try and get some of his weight back this week before chemo next week, the oncologist -said he'd give him fluorouracil (I think that's what he mentioned this morning) starting next week.
It's all just going too fast really
by mebenz31 on Mon Feb 01, 2010 07:30 PM
Hi Helen, We used to hate when a doctor would give a time frame as to how long my dad would live..... we always believed he was going to be "the one" who made it. Once he started to get ascites(fliud build up in the abdomen) thats when they started to mention that thickening of the walls. The surgeon said the cancer cells cause irritation which in turn causes the body to produce that extra fluid, it can also come from liver damage and probably from a few other things. To answer your question about how long, once pc starts to spread unless some super natural thing happens most people have a short time left. Thats not to say some else can't be the exception to the rule, I still believe in hope. I would never take someones hope away, only GOD knows the day that we breath our last breath. I also like to stress that everyone is different, my dad died of complications of pc, that being an infection in his intestines that caused a hole and poisoned him. Before they could identify what type of bug it was he was on life support. Unfortunately, pc weakens the body to the point were you cant fight back.
by Helen_Z on Tue Feb 09, 2010 06:19 AM
when I wrote that message I wanted to prepare myself with 'real' timeframes, in the last week my parnter is getting worse, vomitting after eating not really digesting anything. So, I just wanted to say thanks, that was the best answer I could have asked for- and you don't even know me.
Thanks again, livining in hope
by mebenz31 on Tue Feb 09, 2010 04:21 PM
Hi, No helen I dont know you, but, we are bound together by a common enemy. I feel as though everyone here is my brother and sister and if I can help even if I dont know the answers I can offer my ear. Sometimes you just need to cry with someone, talk to somone, so you dont feel so alone. Thats important....... Take care of your partner, I wish him well.
by Brog22 on Mon Feb 15, 2010 08:55 AM
Helen or Mebenz or other: what is best way or a way to determine if walls are thickening. My brother 'may " have acities but not sure. Does feel a bit "full" mostly. Scans did not show peritoneal involvement 5 months ago but now some spots or leasions have shown up. I have heard elswhere that a radiologist can look back at scans and perhaps figure out if things are thickening,,,this mean spreading or implants.
thanks for any further thoughts, Brogan in Seattle.
by BCinOntario on Mon Feb 15, 2010 02:36 PM
The diagnosis of ascites or fluid buildup in the abdominal cavity, can be determined through one or more tests : a full blood workup to check liver and kidney function to see if either of these organs are creating an accumulation of fluid on account of disease or infection. A fine needle biopsy aspiration which can draw out fluid from the abdominal cavity for analysis to determine the presence of cancer cells in this fluid, although I think this is only done in extreme cases typically. A physical exam to palpate the abdomen and/or a CTScan or Ultrasound which can also determine the cause of the ascites.
My mother was not experiencing ascites when she was diagnosed with her PC, it was only in the later stages. Not to say that this is the case with your brother, but it is important to get this checked out to know for sure.
I hope this helps to answer your question. Wishing your brother the best and continued strength through this journey.
by mebenz31 on Mon Feb 15, 2010 04:22 PM
Hi Brogan, In my Dads case, the fluid would build up just about as fast as they took it out. The doctor would aspirate ,that just means they would draw the fluid out with a needle, it causes no pain and my dad would feel great that day. This allowed him to be able to breath better and he also would be able to eat without discomfort. The next day it would be back(very frustrating) and then he would have it removed again when he was uncomfortable. His very kind, very compassionate doctor arranged with the hospital that my dad could do this on a walk-in basis. He went in a couple of times a week and each time the fluid was removed it was biopsied,there was never any cancer cells in the fluid. The fact that there was no cancer cells does not mean there is no cancer, its a bit confusing, but it just doesn't show up in the fluid. His surgeon was convinced the fluid was evidence of pc in his stomach, we never had any of the tests that BC talked to you about, I think we just didn't want to know. My father was so happy that there were no cancer cells in the fluid, we just let him think that was good news. Its just another one of those nasty complications of pc, unfortunately it is an end stage development. GOD be with anyone who suffers from this cancer, I pray they find a cure.
by mebenz31 on Mon Feb 15, 2010 04:44 PM
I would like to add that scans that are 5 months old with pc is like a lifetime so much can change in a short time frame. This is a very fast moving cancer!! What they can do is compare a present scan to that of 5 months ago and thickining of the walls could be determined, which is what it sounds like they have done. You said there are some spots or leasions, unfortunately that would indicate mets to the peritoneal walls. Another quick test is an abdominal tap, your brothers doctor would tap on his belly and they can tell from the sound and feel that fluid is present. This is all classic pc, heartbreaking to watch........ sorry Brogan I wish I could take it away, I can say I know how you feel.
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