husband newly diagnsed – fluid retention

I’am a CC survivior terminal was never a word in my vocabulary and it shall never be

I am BigSister and my younger sister Jessica was diagnosed in June of 2010 with CC. She satrted out with Gemzar-Oxiplatin but after 2 rounds her tumor grew. They then switched to Gemzar-Cisplatin the one where you have to stay away from the cold for a couple of days. For the past month and a half she has been having to be drained every 14 days and the past couple of weeks every week to the tune of 4.5 liters or more.

She also is having the bowel movement problem and sleep only comes in waves of 2-3 hours at a time. After seeing 3 surgeons, one being from Mayo Clinic, none wanted to do any surgery. She decided to try one more and found a more agrressive surgeon, who along with a team of surgeons, are willing to at least go in and check to see if they can remove the left lobe of her liver and treat the tumors on her right lobe. She said they would do a laproscopy first to see if it is feasible and if not, at least put a shunt in to help with the draining. I think she mentioned a procedure called “debulking.”

My sister is 40 yrs old. and has been an ER nurse for the past 17 years. Some of her friends are upset that by having this surgery she is taking a big risk. She knows there are risks to every kind of surgery. She explained to them that giving birth is a risk and people who travel for work are risking their lives by stepping on a plane. You just don’t think of it. She is looking at the positives of the surgery but others are not. When she told me, inside I was scared, but I know this is what she has to do so I support her decision. She even spoke to someone who had this operation done 2 years ago at the age of 55 and is now cancer free for the past 2 years.

She can tell us of the pain of feeling her liver rubbing against her ribcage making it hard for her to breath, or the pain of caring around an extra gallon of fluid around. She has lost 20 lbs. since this all has began and since she is a nurse, there are times they would have hospitalized her for observation, but because she knows what to watch for she has been able to return to be with the family.

Though some of us might not think it is a good idea for this operation we must be there to support her. They have to look at it as if someone needed an organ transplant or heart by-pass surgery. The patient would probably die if they don’t have the surgery but one wouldn’t tell them no. We have to be positive and think postive for the person who has the cancer. We have to take ourselves out of the equation.

Thanks for letting me vent and if anyone has tips on keeping weight on with low sodium she would greatly appreciate it.

Ditto to what Kris said!!!

The reason the doctor gave us why he doesn’t believe in being agressive is … at this stage of the cancer, he believes in having the best quality of life. When I asked what stage he said, “Advanced – it is not curable”.

We are not sure if he can go to another hospital in Florida. My father’s Medicare Advantage doesn’t even list a participating oncologist.

I am the daughter of fllover. My father is 73 years old. Very healthy and active prior to being diagnosed, his arms and legs were all muscle. His brother died of brain cancer and sister died of colon cancer.

A few years ago my father and mother moved near Coco Beach Fl. During the summer they come back to Syracuse NY. Upon returning home, this May, my father started feeling ill. In a weeks time my father went up to the VA in Syracuse several times. They finally admitted him for testing and observation. This is when we found out he had cc. When asked what stage the cancer was in we were told “advanced”. We were also told he had microscopic cancer cells throughout the liver. The VA doctor told us he does not agree with the aggressive approach for this stage of cancer. He believes in keeping the patient as comfortable as possible as this stage. He only wants to use gemcitabine. He also has a clot (?) in the bile duct going into the liver (don’t have my notes with me).

After our first appt, I did research and found this web site and the May 2009 posting from the Mayo Clinic about using gemticabine and cisplatin. I told my mother and four sisters my findings.

We had a second appt with the VA doctor’s assistant. We told her we wanted to do both drugs. She said to wait and see what the 2nd opinion doctor said, she called him “MR RIGHT” (Johnathan Wright). She was happy we picked him as our 2nd opinion and couldn’t say enough good things about him.

Johnathan Wright said because my dad is so healthy, other than the cancer, he would start with gemcitabine and one of the platinol drugs. He doesn’t use cisplatin.

My father loves the VA and because he has medicare Advantage in Florida, they went with the VA.

When my father went for his first chemo appt, my mother, father, and myself were all in agreement we wanted both drugs. The assistant doctor came in with a paper indicating that the use of both drugs was only a stage 2 trial and the doctor doesn’t like to use Stage 2 trials. If we wanted to do both drugs we would have to wait 4 hours to talk with them. My father started getting upset so we went with just the gemcitabine. He has no side effects other than being tired.

Last week my father went to his “new” regular doctor who told him he was retaining fluid in his stomach. Shortly after that he started complaining about his back and stomach hurting (he says his stomach is as hard as a rock). His stomach is very bloated looking, but I think it has been since they came back from Florida.

This week starts another round of chemo. My parents, again, want to do both drugs. I don’t think the doctors will do it.

Next month they plan on going back to Florida. My son and I are going to make sure they get down ok and stay for a couple of weeks. I want to meet with the VA doctors down there to make sure they are all on the same page for his treatment. I am concerned with leaving them alone. My mom says they have friends that will help. I have not met them yet. My parents don’t ask enough questions, they don’t question what the doctors tell them. They don’t remeber things. My mother doesn’t take notes, I gave her a pad of paper and pen. We won’t know what is going on.

I know everyone is different, but is it too late to try both drugs? What questions am I forgetting? not knowing to ask? What did I leave out?

Hi Fllover,

I’ve had some luck with diuretics — furosemide and spironolactone. I had edema in my legs and quite a bit of distension in my belly along with fluid in my pleural sac.

I hope this helps,

G

Several physicians I have talked to

Depression can be a very normal reaction to the diagnosis of a terminal disease. How any diagnosis or treatment affects an individual will depend also on the individual, their willingness to fight, their stage, their knowledge of what is going on, and their hope. As for the medicines/chemo, reactions are also difficult to predict. You didn’t mention his age, but that can also be a factor, especially if expectations had to be changed. If he’s been working hard to afford an early retirement or a special trip and now feels those things won’t happen, that would cause anyone to get depressed. It is worth mentioning to the staff when he goes for his next treatment and to the doctor.
Where VA is concerned, I’m not sure if cost conscious-ness is a piece of the puzzle, but VA is another area hard to predict.
I’m so glad you found us, but sorry you needed to. We’ll answer any questions we can, but most of us are not doctors, so learn what you can, make your list of questions, and take them to the doctor when you go. Having the list handy can be very important, because most of the doctors related to the military are overbooked and won’t wait for you to remember what you wanted to ask. Your questions may also remind them of something they skimmed or heard alittle about.
I had the combination of Gemzar and Cisplatin, and it worked well for me. I would encourage you to ask about it, too.
Louise